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Khairallah P, Lorenz EC, Waterman A, Aggarwal N, Pai A, Winkelmayer WC, Niu J. Trends in Kidney Allograft Failure Among First-Time Transplant Recipients in the United States. Am J Kidney Dis 2025; 85:273-283.e1. [PMID: 39521400 DOI: 10.1053/j.ajkd.2024.09.005] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/16/2024] [Revised: 08/28/2024] [Accepted: 09/17/2024] [Indexed: 11/16/2024]
Abstract
RATIONALE & OBJECTIVE The management and outcomes of kidney transplant recipients have evolved over the past 3 decades. This study of US patients whose first kidney allograft failed examined long-term trends in subsequent waitlisting, retransplantation, and all-cause mortality. STUDY DESIGN Retrospective cohort study. SETTING & PARTICIPANTS Patients recorded in the US Renal Data System (USRDS) whose first kidney allograft failed between 1990 and 2019. EXPOSURE The 5-year period in which the allograft failure occurred: 1990-1994, 1995-1999, 2000-2004, 2005-2009, 2010-2014, or 2015-2019. OUTCOME (1) Waitlisting for retransplantation, (2) retransplantation, and (3) all-cause mortality following first allograft failure. ANALYTICAL APPROACH Competing risk survival analyses with the approach described by Fine and Gray used for the outcomes of waitlisting and retransplantation, and Cox proportional hazards models used for the outcome of all-cause mortality. RESULTS The absolute number of patients whose allograft failed and who started dialysis increased from 3,197 in 1990 to 5,821 in 2019. Compared with 1990-1994, the rate of waitlisting for a second transplant increased with each subsequent 5-year period, peaking between 2005 and 2009 before decreasing again subsequently. The rate of retransplantation following allograft failure decreased by 9%, 14%, 18%, 7%, and 11% in the sequential 5-year eras; and the mortality rate was 25% lower in 2015-2019 (HR, 0.75 [95% CI, 0.72-0.77]) compared with 1990-1994. Women had a reduced rate of waitlisting (HR, 0.93 [95% CI, 0.91-0.95]) and lower rate of retransplantation (HR, 0.93 [95% CI, 0.91-0.95]) compared with men. Compared with White patients, African American and Hispanic patients had significantly lower rates of waitlisting, retransplantation, and mortality. LIMITATIONS Retrospective data that lacks granular clinical information. CONCLUSIONS During the past 3 decades, among patients whose first kidney allograft failed and subsequently initiated dialysis, the rates of waitlisting for retransplantation increased while the rates of retransplantation and mortality decreased. Disparities based on race, ethnicity, and sex in waitlisting and retransplantation were observed and warrant further investigation. PLAIN-LANGUAGE SUMMARY Kidney allograft failure constitutes the fourth most common cause of dialysis initiation in the United States, and it accounts for 4% to 10% of yearly new dialysis starts globally. Little is known about the trends in the outcomes of patients whose kidney allograft failed. We studied US patients whose first kidney allograft failed between 1990 and 2019 to understand trends in waitlisting for retransplantation, retransplantation, and all-cause mortality after kidney allograft failure. Among patients whose first kidney allograft failed and started dialysis, rates of waitlisting increased and rates of retransplantation and mortality decreased over the past 3 decades. We found racial, ethnic, and sex-based disparities in outcomes. Compared with White patients, African American and Hispanic patients had significantly lower rates of waitlisting, retransplantation, and mortality. Women also had lower rates of waitlisting and retransplantation compared with men.
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Affiliation(s)
| | | | - Amy Waterman
- Department of Surgery and J.C. Walter Jr. Transplant Center, Houston Methodist Hospital, Houston, Texas
| | - Nidhi Aggarwal
- Section of Nephrology, Baylor College of Medicine, Houston, Texas
| | - Akshta Pai
- Section of Nephrology, Baylor College of Medicine, Houston, Texas
| | | | - Jingbo Niu
- Section of Nephrology, Baylor College of Medicine, Houston, Texas
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Chong CH, Wong G, Au EH, Scholes-Robertson N, Muthuramalingam S, Roger SD, Keung K, Jaure A, Teixeira-Pinto A, Howell M. Preferences in treating polyomavirus infection in kidney transplant recipients: A discrete choice experiment with patients, caregivers, and clinicians. Transpl Infect Dis 2024; 26:e14390. [PMID: 39437229 DOI: 10.1111/tid.14390] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/19/2024] [Revised: 08/16/2024] [Accepted: 09/20/2024] [Indexed: 10/25/2024]
Abstract
BACKGROUND Treatment strategies for BK polyomavirus (BKPyV) infection in kidney transplant recipients are heterogeneous among clinicians. We aimed to identify the treatment preferences of key stakeholders for BKPyV infection and measure the trade-offs between treatment outcomes. METHODS Adult kidney transplant recipients, caregivers, and clinicians were eligible to participate in a discrete choice experiment between February 2021 and June 2022. The five treatment-related attributes were achieving viral clearance and optimal graft function, as well as reducing the risk of graft loss, acute rejection, and complications. Results were analyzed using multinomial logistic models. RESULTS In total, 109 participants (57 kidney transplant recipients, 10 caregivers, and 42 health professionals) were included. The most important attribute was the risk of graft loss, followed by side effects and acute rejection. As the risk of graft loss increased, all participants were less inclined to accept an assigned treatment strategy. For instance, if graft loss risk was increased from 1% to 50%, the probability of uptake of a treatment strategy for BKPyV infection was reduced from 87% to 3%. CONCLUSION Graft loss is the predominant concern for patients, caregivers, and health professionals when deciding on the treatment for BKPyV infection, and should be included in intervention trials of BKPyV infection.
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Affiliation(s)
- Chanel H Chong
- School of Public Health, University of Sydney, Sydney, Australia
- Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia
| | - Germaine Wong
- School of Public Health, University of Sydney, Sydney, Australia
- Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia
- Centre for Transplant and Renal Research, Westmead Hospital, Westmead, Australia
| | - Eric H Au
- School of Public Health, University of Sydney, Sydney, Australia
- The Alfred Hospital, Melbourne, Australia
- Australia and New Zealand Dialysis and Transplant Registry, South Australian Health and Medical Research Institute, Adelaide, Australia
- School of Population and Global Health, University of Melbourne, Melbourne, Australia
| | - Nicole Scholes-Robertson
- School of Public Health, University of Sydney, Sydney, Australia
- Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia
| | | | | | - Karen Keung
- Prince of Wales Hospital, Randwick, Australia
| | - Allison Jaure
- School of Public Health, University of Sydney, Sydney, Australia
- Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia
| | - Armando Teixeira-Pinto
- School of Public Health, University of Sydney, Sydney, Australia
- Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia
| | - Martin Howell
- School of Public Health, University of Sydney, Sydney, Australia
- Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia
- Menzies Centre for Health Policy and Economics, University of Sydney, Sydney, Australia
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Cormican O, Dowling M. Using nominal group technique to compare patients' and clinicians' perspectives on symptoms in multiple myeloma to inform the development of a self management tool for patients with relapsed myeloma. HRB Open Res 2024; 1:21. [PMID: 39234480 PMCID: PMC11372347 DOI: 10.12688/hrbopenres.12863.2] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 10/18/2024] [Indexed: 09/06/2024] Open
Abstract
Background The nominal group technique (NGT) allows stakeholders to directly generate items for needs assessment. The objective was to demonstrate the use of NGT to inform the development of a healthcare app in patients with relapsed myeloma. Healthcare professionals with experience in the care of patients with relapsed/refractory myeloma were invited to participate. Methods One NGT group was conducted. In the group, health care professionals working in haematology were asked to vote anonymously in order of highest priority, on symptoms previously highlighted by relapsed/refractory myeloma patients in four focus groups. Results A total of 18 healthcare professionals working in the area of haematology participated in the NGT discussion; consultants (n=6), haematology registrars (n=2), specialist nurses [Advanced Nurse Practitioner/Clinical Nurse Specialist] (haematology) (n=3), staff nurse (n=1), and "other" health care professionals (n=6). Participants ranged in experience of working with myeloma patients from 2 years to over 27 years. The symptoms voted in highest priority were: Pain, Fatigue, Peripheral Neuropathy, Infection Risk and Steroid Induced Side Effects. Conclusions The NGT was an efficient method for obtaining information to inform a healthcare app.
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Affiliation(s)
- Orlaith Cormican
- Cancer Clinical Trials Unit, HRB Clinical Research Facility, University of Galway, Galway, Ireland
- School of Nursing and Midwifery, University of Galway, Galway, Ireland
| | - Maura Dowling
- School of Nursing and Midwifery, University of Galway, Galway, Ireland
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Gadelkareem RA, Abdelgawad AM, Mohammed N, Zarzour MA, Khalil M, Reda A, Hammouda HM. Challenges to establishing and maintaining kidney transplantation programs in developing countries: What are the coping strategies? World J Methodol 2024; 14:91626. [PMID: 38983660 PMCID: PMC11229866 DOI: 10.5662/wjm.v14.i2.91626] [Citation(s) in RCA: 1] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/02/2024] [Revised: 01/31/2024] [Accepted: 03/12/2024] [Indexed: 06/13/2024] Open
Abstract
Kidney transplantation (KT) is the optimal form of renal replacement therapy for patients with end-stage renal diseases. However, this health service is not available to all patients, especially in developing countries. The deceased donor KT programs are mostly absent, and the living donor KT centers are scarce. Single-center studies presenting experiences from developing countries usually report a variety of challenges. This review addresses these challenges and the opposing strategies by reviewing the single-center experiences of developing countries. The financial challenges hamper the infrastructural and material availability, coverage of transplant costs, and qualification of medical personnel. The sociocultural challenges influence organ donation, equity of beneficence, and regular follow-up work. Low interests and motives for transplantation may result from high medicolegal responsibilities in KT practice, intense potential psychosocial burdens, complex qualification protocols, and low productivity or compensation for KT practice. Low medical literacy about KT advantages is prevalent among clinicians, patients, and the public. The inefficient organizational and regulatory oversight is translated into inefficient healthcare systems, absent national KT programs and registries, uncoordinated job descriptions and qualification protocols, uncoordinated on-site investigations with regulatory constraints, and the prevalence of commercial KT practices. These challenges resulted in noticeable differences between KT services in developed and developing countries. The coping strategies can be summarized in two main mechanisms: The first mechanism is maximizing the available resources by increasing the rates of living kidney donation, promoting the expertise of medical personnel, reducing material consumption, and supporting the establishment and maintenance of KT programs. The latter warrants the expansion of the public sector and the elimination of non-ethical KT practices. The second mechanism is recruiting external resources, including financial, experience, and training agreements.
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Affiliation(s)
- Rabea Ahmed Gadelkareem
- Department of Urology, Assiut Urology and Nephrology Hospital, Faculty of Medicine, Assiut University, Assiut 71515, Egypt
| | - Amr Mostafa Abdelgawad
- Department of Urology, Assiut Urology and Nephrology Hospital, Faculty of Medicine, Assiut University, Assiut 71515, Egypt
| | - Nasreldin Mohammed
- Department of Urology, Assiut Urology and Nephrology Hospital, Faculty of Medicine, Assiut University, Assiut 71515, Egypt
| | - Mohammed Ali Zarzour
- Department of Urology, Assiut Urology and Nephrology Hospital, Faculty of Medicine, Assiut University, Assiut 71515, Egypt
| | - Mahmoud Khalil
- Department of Urology, Assiut Urology and Nephrology Hospital, Faculty of Medicine, Assiut University, Assiut 71515, Egypt
| | - Ahmed Reda
- Department of Urology, Assiut Urology and Nephrology Hospital, Faculty of Medicine, Assiut University, Assiut 71515, Egypt
| | - Hisham Mokhtar Hammouda
- Department of Urology, Assiut Urology and Nephrology Hospital, Faculty of Medicine, Assiut University, Assiut 71515, Egypt
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Dobrijevic E, Scholes-Robertson N, Guha C, Howell M, Jauré A, Wong G, van Zwieten A. Patient-Centered Research and Outcomes in Cancer and Kidney Transplantation. Semin Nephrol 2024; 44:151499. [PMID: 38538454 DOI: 10.1016/j.semnephrol.2024.151499] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 06/30/2024]
Abstract
Cancer has been identified by kidney transplant recipients as a critically important outcome. The co-occurrence of cancer and kidney transplantation represents a complex intersection of diseases, symptoms, and competing priorities for treatments. Research that focuses on biochemical parameters and clinical events may not capture the priorities of patients. Patient-centered research can improve the relevance and efficiency of research and is particularly pertinent in the setting of cancer and kidney transplantation to facilitate shared decision-making in complex clinical situations. In addition, patient-reported outcomes can facilitate the assessment of patients' experiences, symptom burden, treatment side effects, and quality of life. This review discusses patient-centered research in the context of kidney transplantation and cancer, including consumer involvement in research and patient-centered outcomes and their measures and inclusion in core outcome sets.
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Affiliation(s)
- Ellen Dobrijevic
- Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, Kids Research Institute, The Children's Hospital at Westmead, Westmead, Australia.
| | - Nicole Scholes-Robertson
- Centre for Kidney Research, Kids Research Institute, The Children's Hospital at Westmead, Westmead, Australia; Rural and Remote Health NT, Flinders University, Alice Springs, Australia
| | - Chandana Guha
- Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, Kids Research Institute, The Children's Hospital at Westmead, Westmead, Australia
| | - Martin Howell
- Centre for Kidney Research, Kids Research Institute, The Children's Hospital at Westmead, Westmead, Australia; Menzies Centre for Health Policy and Economics, The University of Sydney, Sydney, Australia
| | - Allison Jauré
- Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, Kids Research Institute, The Children's Hospital at Westmead, Westmead, Australia
| | - Germaine Wong
- Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, Kids Research Institute, The Children's Hospital at Westmead, Westmead, Australia; Centre for Transplant and Renal Research, Westmead Hospital, Westmead, Australia
| | - Anita van Zwieten
- Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, Kids Research Institute, The Children's Hospital at Westmead, Westmead, Australia
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Baragar BH, Schorr M, Verdin N, Woodlock T, Clark DA, Hundemer GL, Mathew A, Mustafa RA, Ryz KS, Harrison TG. Identification and Prioritization of Canadian Society of Nephrology Clinical Practice Guideline Topics With Multidisciplinary Stakeholders and People Living With Kidney Disease: A Clinical Research Protocol. Can J Kidney Health Dis 2023; 10:20543581231207142. [PMID: 38020482 PMCID: PMC10676059 DOI: 10.1177/20543581231207142] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/21/2022] [Accepted: 09/03/2023] [Indexed: 12/01/2023] Open
Abstract
Background Despite efforts to provide evidence-based care for people living with kidney disease, health care provider goals and priorities are often misaligned with those of individuals with lived experience of disease. Coupled with competing interests of time, resources, and an abundance of suitable guideline topics, identifying and prioritizing areas of focus for the Canadian nephrology community with a patient-oriented perspective is necessary and important. Similar priority-setting exercises have been undertaken to establish research priorities for kidney disease and to standardize outcomes for kidney disease research and clinical care; however, research priorities are distinct from priorities for guideline development. Inclusion of people living with health conditions in the selection and prioritization of guideline topics is suggested by patient engagement frameworks, though the process to operationalizing this is variable. We propose that the Canadian Society of Nephrology Clinical Practice Guideline Committee (CSN CPGC) takes the opportunity at this juncture to incorporate evidence-based prioritization exercises with involvement of people living with kidney disease and their caregivers to inform future guideline activities. In this protocol, we describe our planned research methods to address this. Objective To establish consensus-based guideline topic priorities for the CSN CPGC using a modified Delphi survey with involvement of multidisciplinary stakeholders, including people living with kidney disease and their caregivers. Study design Protocol for a Modified Delphi Survey. Setting Pilot-tested surveys will be distributed via email and conducted using the online platform SurveyMonkey, in both French and English. Participants We will establish a group of multidisciplinary clinical and research stakeholders (both within and outside CSN membership) from Canada, in addition to people living with kidney disease and/or their caregivers. Methods A comprehensive literature search will be conducted to generate an initial list of guideline topics, which will be organized into three main categories: (1) International nephrology-focused guidelines that may require Canadian commentary, (2) Non-nephrology specific guidelines from Canada that may require CSN commentary, and (3) Novel topics for guideline development. Participants will engage in a multi-round Modified Delphi Survey to prioritize a set of "important guideline topics." Measures Consensus will be reached for an item based on both median score on the Likert-type scale (≥ 7) and the percentage agreement (≥ 75%); the Delphi process will be complete when consensus is reached on each item. Guideline topics will then be given a priority score calculated from the total Likert ratings across participants, adjusted for the number of participants. Limitations Potential limitations include participant response rates and compliance to survey completion. Conclusions We propose to incorporate evidence-based prioritization exercises with the engagement of people living with kidney disease and their caregivers to establish consensus-based guideline topics and inform future guidelines activities of the CSN CPGC.
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Affiliation(s)
| | - Melissa Schorr
- Department of Medicine, Western University, London, ON, Canada
- Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, ON, Canada
| | - Nancy Verdin
- Patient and Community Engagement Research Unit, O’Brien Institute for Public Health, University of Calgary, AB, Canada
| | | | - David A. Clark
- Division of Nephrology, Department of Medicine, Dalhousie University, Halifax, NS, Canada
- Kidney Research Institute Nova Scotia, Queen Elizabeth II Health Sciences Centre, Halifax, NS, Canada
| | - Gregory L. Hundemer
- Ottawa Hospital Research Institute, University of Ottawa, ON, Canada
- Division of Nephrology, Department of Medicine, University of Ottawa, ON, Canada
| | - Anna Mathew
- Division of Nephrology, Department of Medicine, McMaster University, Hamilton, ON, Canada
| | - Reem A. Mustafa
- Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, ON, Canada
- Departments of Internal Medicine and Population Health, The University of Kansas Health System, Kansas City, USA
| | - Krista S. Ryz
- Department of Medicine, University of Manitoba, Winnipeg, Canada
| | - Tyrone G. Harrison
- Department of Medicine, University of Calgary, AB, Canada
- Department of Community Health Sciences, University of Calgary, AB, Canada
- O’Brien Institute for Public Health, Cumming School of Medicine, University of Calgary, AB, Canada
- Libin Cardiovascular Institute, Cumming School of Medicine, University of Calgary, AB, Canada
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Cooper TE, Dalton A, Kieu A, Gately R, Bourke MJ, Craig JC, Khalid R, Lim WH, Scholes-Robertson N, Teixeira-Pinto A, Jaure A, Wong G, Howell M. Patient Preferences for the Management of Gastrointestinal Symptoms in Kidney Transplantation: a Discrete Choice Experiment. Kidney Int Rep 2023; 8:1978-1988. [PMID: 37850002 PMCID: PMC10577360 DOI: 10.1016/j.ekir.2023.07.034] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/21/2023] [Revised: 07/13/2023] [Accepted: 07/31/2023] [Indexed: 10/19/2023] Open
Abstract
Introduction Gastrointestinal (GI) symptoms in kidney transplant are common and debilitating. We aimed to ascertain patients' preferences for GI symptom management options to help future interventions align with treatment priorities. Methods A discrete choice experiment was conducted with kidney transplant recipients in 3 Australian nephrology units. A multinomial logit model was used to quantify the preferences and trade-offs between 5 characteristics: cost, formulation, symptom burden, dietary changes, and medication quantities. Results Seventy patients participated (mean age ± SD: 47 ± 15 years, 56% female), 57% had GI symptoms. Patients preferred interventions that will achieve complete resolution of GI symptoms compared to no improvement (odds ratio [95% confidence interval]: 15.3 [1.80, 129.50]), were delivered as a tablet rather than a sachet (1.6 [1.27, 2.08]), retained their current diet compared to eliminating food groups (6.0 [2.19, 16.27]), reduced medication burden (1.4 [1.06, 1.79]), and had lower costs (0.98 [0.96, 1.00]). Participants would be willing to pay AUD$142.20 [$83.90, $200.40] monthly to achieve complete resolution of GI symptoms or AUD$100.90 [$9.60, $192.10] to have moderate improvement in symptoms. Conclusions Interventions that are highly effective in relieving all GI symptoms without the need for substantive dietary changes, and in tablet form, are most preferred by kidney transplant recipients.
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Affiliation(s)
- Tess E. Cooper
- Cochrane Kidney and Transplant, The Children's Hospital at Westmead, Australia
- Sydney School of Public Health, The University of Sydney, Australia
- Center for Kidney Research, The Children’s Hospital at Westmead, Australia
| | - Amy Dalton
- Sydney School of Public Health, The University of Sydney, Australia
- Center for Kidney Research, The Children’s Hospital at Westmead, Australia
| | - Anh Kieu
- Cochrane Kidney and Transplant, The Children's Hospital at Westmead, Australia
- Center for Kidney Research, The Children’s Hospital at Westmead, Australia
| | - Ryan Gately
- Princess Alexandra Hospital, Australia
- School of Medicine, The University of Queensland, Australia
| | - Michael J. Bourke
- Westmead Hospital, Australia
- Sydney Medical School, The University of Sydney, Australia
| | - Jonathan C. Craig
- Cochrane Kidney and Transplant, The Children's Hospital at Westmead, Australia
- College of Medicine and Public Health, Flinders University, Australia
| | - Rabia Khalid
- Sydney School of Public Health, The University of Sydney, Australia
- Center for Kidney Research, The Children’s Hospital at Westmead, Australia
| | - Wai H. Lim
- Sir Charles Gairdner Hospital, Australia
- School of Medicine, University of Western Australia, Australia
| | - Nicole Scholes-Robertson
- Cochrane Kidney and Transplant, The Children's Hospital at Westmead, Australia
- Sydney School of Public Health, The University of Sydney, Australia
- Center for Kidney Research, The Children’s Hospital at Westmead, Australia
| | - Armando Teixeira-Pinto
- Sydney School of Public Health, The University of Sydney, Australia
- Center for Kidney Research, The Children’s Hospital at Westmead, Australia
| | - Allison Jaure
- Sydney School of Public Health, The University of Sydney, Australia
- Center for Kidney Research, The Children’s Hospital at Westmead, Australia
| | - Germaine Wong
- Sydney School of Public Health, The University of Sydney, Australia
- Center for Kidney Research, The Children’s Hospital at Westmead, Australia
- Westmead Hospital, Australia
| | - Martin Howell
- Sydney School of Public Health, The University of Sydney, Australia
- Center for Kidney Research, The Children’s Hospital at Westmead, Australia
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Klein A, Loupy A, Stegall M, Helanterä I, Kosinski L, Frey E, Aubert O, Divard G, Newell K, Meier-Kriesche HU, Mannon RB, Dumortier T, Aggarwal V, Podichetty JT, O'Doherty I, Gaber AO, Fitzsimmons WE. Qualifying a novel clinical trial endpoint (iBOX) predictive of long-term kidney transplant outcomes. Am J Transplant 2023; 23:1496-1506. [PMID: 37735044 DOI: 10.1016/j.ajt.2023.04.018] [Citation(s) in RCA: 10] [Impact Index Per Article: 5.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/30/2022] [Revised: 03/30/2023] [Accepted: 04/12/2023] [Indexed: 09/23/2023]
Abstract
New immunosuppressive therapies that improve long-term graft survival are needed in kidney transplant. Critical Path Institute's Transplant Therapeutics Consortium received a qualification opinion for the iBOX Scoring System as a novel secondary efficacy endpoint for kidney transplant clinical trials through European Medicines Agency's qualification of novel methodologies for drug development. This is the first qualified endpoint for any transplant indication and is now available for use in kidney transplant clinical trials. Although the current efficacy failure endpoint has typically shown the noninferiority of therapeutic regimens, the iBOX Scoring System can be used to demonstrate the superiority of a new immunosuppressive therapy compared to the standard of care from 6 months to 24 months posttransplant in pivotal or exploratory drug therapeutic studies.
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Affiliation(s)
| | - Alexandre Loupy
- Université de Paris, Cité, Institut national de la santé et de la recherche médicale, U970, PARCC, Paris Translational Research Centre for Organ Transplantation, Paris, France
| | - Mark Stegall
- Department of Surgery, Mayo Clinic, Rochester, Minnesota, USA
| | - Ilkka Helanterä
- Department of Transplantation and Liver Surgery, Helsinki University Hospital, Helsinki, Finland
| | | | - Eric Frey
- Critical Path Institute, Tucson, Arizona, USA
| | - Olivier Aubert
- Université de Paris, Cité, Institut national de la santé et de la recherche médicale, U970, PARCC, Paris Translational Research Centre for Organ Transplantation, Paris, France
| | - Gillian Divard
- Université de Paris, Cité, Institut national de la santé et de la recherche médicale, U970, PARCC, Paris Translational Research Centre for Organ Transplantation, Paris, France
| | - Kenneth Newell
- Division of Transplantation, Department of Surgery, Emory University School of Medicine, Atlanta, Georgia, USA
| | | | - Roslyn B Mannon
- Department of Medicine, Division of Nephrology, University of Nebraska Medical Center, Omaha, Nebraska, USA
| | | | | | | | | | - Ahmed Osama Gaber
- Department of Surgery, Houston Methodist Hospital, Houston, Texas, USA, and Weill Cornell Medicine, New York, New York, USA
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Zhang Y, Hu A, Lin Y, Cao Y, Muller S, Wong G, Yang JYH. simKAP: simulation framework for the kidney allocation process with decision making model. Sci Rep 2023; 13:16367. [PMID: 37773250 PMCID: PMC10541869 DOI: 10.1038/s41598-023-41162-w] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/19/2023] [Accepted: 08/23/2023] [Indexed: 10/01/2023] Open
Abstract
Organ shortage is a major barrier in transplantation and rules guarding organ allocation decisions should be robust, transparent, ethical and fair. Whilst numerous allocation strategies have been proposed, it is often unrealistic to evaluate all of them in real-life settings. Hence, the capability of conducting simulations prior to deployment is important. Here, we developed a kidney allocation simulation framework (simKAP) that aims to evaluate the allocation process and the complex clinical decision-making process of organ acceptance in kidney transplantation. Our findings have shown that incorporation of both the clinical decision-making and a dynamic wait-listing process resulted in the best agreement between the actual and simulated data in almost all scenarios. Additionally, several hypothetical risk-based allocation strategies were generated, and we found that these strategies improved recipients' long-term post-transplant patient survival and reduced wait time for transplantation. The importance of simKAP lies in its ability for policymakers in any transplant community to evaluate any proposed allocation algorithm using in-silico simulation.
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Affiliation(s)
- Yunwei Zhang
- School of Mathematics and Statistics, The University of Sydney, F07- Carslaw Building, Sydney, NSW, Australia
- Charles Perkins Centre, The University of Sydney, Sydney, NSW, Australia
| | - Anne Hu
- School of Mathematics and Statistics, The University of Sydney, F07- Carslaw Building, Sydney, NSW, Australia
- Sydney Law School, The University of Sydney, Sydney, NSW, Australia
| | - Yingxin Lin
- School of Mathematics and Statistics, The University of Sydney, F07- Carslaw Building, Sydney, NSW, Australia
- Charles Perkins Centre, The University of Sydney, Sydney, NSW, Australia
| | - Yue Cao
- School of Mathematics and Statistics, The University of Sydney, F07- Carslaw Building, Sydney, NSW, Australia
- Charles Perkins Centre, The University of Sydney, Sydney, NSW, Australia
| | - Samuel Muller
- School of Mathematics and Statistics, The University of Sydney, F07- Carslaw Building, Sydney, NSW, Australia
- School of Mathematical and Physical Sciences, Macquarie University, Sydney, NSW, Australia
| | - Germaine Wong
- Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia
- Centre for Kidney Research, Kids Research Institute, The Children's Hospital at Westmead, Sydney, NSW, Australia
- Centre for Transplant and Renal Research, Westmead Hospital, Sydney, NSW, Australia
| | - Jean Yee Hwa Yang
- School of Mathematics and Statistics, The University of Sydney, F07- Carslaw Building, Sydney, NSW, Australia.
- Charles Perkins Centre, The University of Sydney, Sydney, NSW, Australia.
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10
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Klein A, Loupy A, Stegall M, Helanterä I, Kosinski L, Frey E, Aubert O, Divard G, Newell K, Meier-Kriesche HU, Mannon R, Dumortier T, Aggarwal V, Podichetty JT, O’Doherty I, Gaber AO, Fitzsimmons WE. Qualifying a Novel Clinical Trial Endpoint (iBOX) Predictive of Long-Term Kidney Transplant Outcomes. Transpl Int 2023; 36:11951. [PMID: 37822449 PMCID: PMC10563802 DOI: 10.3389/ti.2023.11951] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/30/2022] [Accepted: 04/12/2023] [Indexed: 10/13/2023]
Abstract
New immunosuppressive therapies that improve long-term graft survival are needed in kidney transplant. Critical Path Institute's Transplant Therapeutics Consortium received a qualification opinion for the iBOX Scoring System as a novel secondary efficacy endpoint for kidney transplant clinical trials through European Medicines Agency's qualification of novel methodologies for drug development. This is the first qualified endpoint for any transplant indication and is now available for use in kidney transplant clinical trials. Although the current efficacy failure endpoint has typically shown the noninferiority of therapeutic regimens, the iBOX Scoring System can be used to demonstrate the superiority of a new immunosuppressive therapy compared to the standard of care from 6 months to 24 months posttransplant in pivotal or exploratory drug therapeutic studies.
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Affiliation(s)
- Amanda Klein
- Critical Path Institute, Tucson, AZ, United States
| | - Alexandre Loupy
- Institut National de la Santé et de la Recherche Médicale (INSERM), Paris, France
| | - Mark Stegall
- Department of Surgery, Mayo Clinic, Rochester, Rochester, MN, United States
| | - Ilkka Helanterä
- Department of Transplantation and Liver Surgery, Helsinki University Central Hospital, Helsinki, Finland
| | | | - Eric Frey
- Critical Path Institute, Tucson, AZ, United States
| | - Olivier Aubert
- Institut National de la Santé et de la Recherche Médicale (INSERM), Paris, France
| | - Gillian Divard
- Institut National de la Santé et de la Recherche Médicale (INSERM), Paris, France
| | - Kenneth Newell
- Division of Transplantation, Department of Surgery, Emory University School of Medicine, Atlanta, GA, United States
| | | | - Roslyn Mannon
- Division of Nephrology, Department of Internal Medicine, College of Medicine, University of Nebraska Medical Center, Omaha, NE, United States
| | | | | | | | | | - Ahmed Osama Gaber
- Department of Surgery, Houston Methodist Hospital, Houston, TX, United States
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11
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Bourkas S, Achille M. The psychosocial adjustment of kidney recipients across donation contexts. J Health Psychol 2023; 28:1011-1023. [PMID: 36688379 PMCID: PMC10492421 DOI: 10.1177/13591053221149780] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/24/2023] Open
Abstract
The objective of this study was to investigate kidney recipients' experiences within deceased and living donation contexts and, in the latter, by donor relationship type, to identify differences by context and mechanisms by which the relationship with the donor may impact recipients' psychosocial well-being. Individual interviews were conducted with 12 participants and analyzed using Interpretative Phenomenological Analysis. Three themes emerged: (a) salience of and sensitivity toward sacrifice and loss, (b) honoring the sacrifice by honoring the gift, and (c) relational imbalance mirroring perceived burden of donation. Findings were contextualized in relation to the transplantation literature, and their clinical implications discussed.
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12
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Kuningas K, Driscoll J, Mair R, Day E, Sharif A. Short-term Healthy Lifestyle Intervention and Long-term Behavior Change After Kidney Transplantation: Findings From the CAVIAR Study. Am J Kidney Dis 2023; 81:249-252. [PMID: 36228826 DOI: 10.1053/j.ajkd.2022.08.020] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/18/2022] [Accepted: 08/11/2022] [Indexed: 11/06/2022]
Affiliation(s)
- Kulli Kuningas
- Department of Nephrology and Transplantation, University Hospitals Birmingham, UK
| | - Joanne Driscoll
- Department of Nutrition and Dietetics, University Hospitals Birmingham, UK
| | - Reena Mair
- Department of Nutrition and Dietetics, University Hospitals Birmingham, UK
| | - Edward Day
- School of Psychology, University of Birmingham, Birmingham, UK
| | - Adnan Sharif
- Department of Nephrology and Transplantation, University Hospitals Birmingham, UK; Institute of Immunology and Immunotherapy, University of Birmingham, Birmingham, UK.
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13
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Chandler S, Isbel N. Progressive multifocal leukoencephalopathy 10 years following transplant: 5HT receptor antagonism as an adjunct to immune reconstitution. BMJ Case Rep 2022; 15:e252284. [PMID: 36524258 PMCID: PMC9748958 DOI: 10.1136/bcr-2022-252284] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 12/01/2022] [Indexed: 12/15/2022] Open
Abstract
We report a case of a patient presenting with subacute neurological symptoms 10 years postkidney transplant. Cognitive deficits included acalculia and left upper limb dysesthesia, progressing to hemiplegic upper motor neuron weakness. Investigations included an MRI with multiple FLAIR hyperintensities, while a lumbar puncture was sterile with negative flow cytometry. Ultimately, PCR testing for John Cunningham virus was positive on cerebrospinal fluid. The diagnosis of progressive multifocal leukoencephalopathy (PML) was confirmed on the basis of the above.Initially, the patient was managed with withdrawal of immunosuppressants and close observation. Mirtazapine was commenced based on case reports of successful use in non-transplant patients; the patient's recovery was temporally related to withdrawal of immunosuppression and increasing mirtazapine dosage. The patient is currently maintained on prednisolone and mirtazapine with stable graft function and improved mobility and cognitive function.
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Affiliation(s)
- Shaun Chandler
- Metro North Kidney Health Service, Queensland Health, Brisbane, Queensland, Australia
| | - Nicole Isbel
- Metro South Integrated Nephrology and Transplant Services, Princess Alexandra Hospital, Woolloongabba, Queensland, Australia
- The University of Queensland Faculty of Medicine, Herston, Queensland, Australia
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14
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Sharif A. Interventions Against Posttransplantation Diabetes: A Scientific Rationale for Treatment Hierarchy Based on Literature Review. Transplantation 2022; 106:2301-2313. [PMID: 35696695 DOI: 10.1097/tp.0000000000004198] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/24/2022]
Abstract
Posttransplant diabetes (PTD) is a common medical complication after solid organ transplantation. Because of adverse outcomes associated with its development and detrimental impact on long-term survival, strategies to prevent or manage PTD are critically important but remain underresearched. Treatment hierarchies of antidiabetic therapies in the general population are currently being revolutionized based on cardiovascular outcome trials, providing evidence-based rationale for optimization of medical management. However, opportunities for improving medical management of PTD are challenged by 2 important considerations: (1) translating clinical evidence data from the general population to underresearched solid organ transplant cohorts and (2) targeting treatment based on primary underlying PTD pathophysiology. In this article, the aim is to provide an overview of PTD treatment options from a new angle. Rationalized by a consideration of underlying PTD pathophysiological defects, which are heterogeneous among diverse transplant patient cohorts, a critical appraisal of the published literature and summary of current research in progress will be reviewed. The aim is to update transplant professionals regarding medical management of PTD from a new perspective tailored therapeutic intervention based on individualized characteristics. As the gap in clinical evidence between management of PTD versus type 2 diabetes widens, it is imperative for the transplant community to bridge this gap with targeted clinical trials to ensure we optimize outcomes for solid organ transplant recipients who are at risk or develop PTD. This necessary clinical research should help efforts to improve long-term outcomes for solid transplant patients from both a patient and graft survival perspective.
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Affiliation(s)
- Adnan Sharif
- Department of Nephrology and Transplantation, Queen Elizabeth Hospital, Edgbaston, Birmingham, United Kingdom.,Institute of Immunology and Immunotherapy, University of Birmingham, Birmingham, United Kingdom
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15
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James LJ, Wong G, Tong A, Craig JC, Howard K, Howell M. Patient preferences for cancer screening in chronic kidney disease: a best-worst scaling survey. Nephrol Dial Transplant 2022; 37:2449-2456. [PMID: 34958393 DOI: 10.1093/ndt/gfab360] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/08/2021] [Indexed: 12/31/2022] Open
Abstract
BACKGROUND Despite an increased cancer risk for patients with chronic kidney disease (CKD), uptake of cancer screening varies due to competing priorities and complex health-related issues. This study aimed to elicit the preferences and important attributes of cancer screening in patients with CKD. METHODS An on-line best-worst scaling survey was used to ascertain the relative importance of 22 screening attributes among CKD patients using an incomplete block design. Preference scores (0-1) were calculated by multinomial logistic regression. Preference heterogeneity was evaluated. RESULTS The survey was completed by 83 patients: 26 not requiring kidney replacement therapy, 20 receiving dialysis and 37 transplant recipients (mean age 59 years, 53% men, 75% prior to cancer screening). The five most important attributes were early detection {preference score 1.0 [95% confidence interval (CI) 0.90-1.10]}, decreased risk of cancer death [0.85 (0.75-0.94)], false negatives [0.71 (0.61-0.80)], reduction in immunosuppression if detected [0.68 (0.59-0.78)] and non-invasive interventions after positive results [0.68 (0.59-0.78)]. Preference heterogeneity reflected the stage of CKD. Immunosuppression reduction [mean difference 0.11 (95% CI 0.02-0.19)] and views of family/friends [0.10 (reference attribute)] were important for transplant recipients. Screening frequency [-0.18 (95% CI -0.26 to -0.10)] and overdiagnosis of harmless cancers [-0.14 (95% CI -0.22 to -0.10)] were important for dialysis patients. CONCLUSION Early detection, risk of cancer-related death, false negatives, immunosuppression reduction and non-invasive interventions following detection are important cancer screening considerations among CKD patients. Patient preferences are key to shared decision-making and individualized cancer screening.
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Affiliation(s)
- Laura J James
- Sydney School of Public Health, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia.,Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW, Australia
| | - Germaine Wong
- Sydney School of Public Health, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia.,Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW, Australia.,Centre for Transplant and Renal Research, Westmead Hospital, Westmead, NSW, Australia
| | - Allison Tong
- Sydney School of Public Health, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia.,Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW, Australia
| | - Jonathan C Craig
- College of Medicine and Public Health, Flinders University, Adelaide, Australia
| | - Kirsten Howard
- Sydney School of Public Health, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia
| | - Martin Howell
- Sydney School of Public Health, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia.,Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW, Australia
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16
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Bottomley MJ, Massey PR, Thuraisingham R, Doyle A, Rao S, Bibee KP, Bouwes Bavinck JN, Jambusaria-Pahlajani A, Harwood CA. Interventions After First Post-Transplant Cutaneous Squamous Cell Carcinoma: A Proposed Decision Framework. Transpl Int 2022; 35:10880. [PMID: 36484063 PMCID: PMC9722441 DOI: 10.3389/ti.2022.10880] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/01/2022] [Accepted: 11/10/2022] [Indexed: 11/23/2022]
Abstract
Cutaneous squamous cell carcinoma (CSCC) is a major cause of morbidity and mortality after organ transplant. Many patients subsequently develop multiple CSCC following a first CSCC, and the risk of metastasis and death is significantly increased compared to the general population. Post-transplant CSCC represents a disease at the interface of dermatology and transplant medicine. Both systemic chemoprevention and modulation of immunosuppression are frequently employed in patients with multiple CSCC, yet there is little consensus on their use after first CSCC to reduce risk of subsequent tumors. While relatively few controlled trials have been undertaken, extrapolation of observational data suggests the most effective interventions may be at the time of first CSCC. We review the need for intervention after a first post-transplant CSCC and evidence for use of various approaches as secondary prevention, before discussing barriers preventing engagement with this approach and finally highlight areas for future research. Close collaboration between specialties to ensure prompt deployment of these interventions after a first CSCC may improve patient outcomes.
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Affiliation(s)
- Matthew J. Bottomley
- Chinese Academy of Medical Sciences Oxford Institute (CAMS-COI), Nuffield Department of Medicine, University of Oxford, Oxford, United Kingdom,Oxford Transplant Unit, Oxford University Hospitals, NHS Foundation Trust, Oxford, United Kingdom,*Correspondence: Matthew J. Bottomley,
| | | | - Raj Thuraisingham
- Department of Renal Medicine and Transplantation, Barts Health NHS Trust, London, United Kingdom
| | - Alden Doyle
- Department of Medicine, University of Virginia, Charlottesville, VA, United States
| | - Swati Rao
- Department of Medicine, University of Virginia, Charlottesville, VA, United States
| | - Kristin P. Bibee
- Department of Dermatology, School of Medicine, John Hopkins University, Baltimore, MD, United States
| | | | - Anokhi Jambusaria-Pahlajani
- Division of Dermatology, Department of Internal Medicine, Dell Medical School, The University of Texas at Austin, Austin, TX, United States
| | - Catherine A. Harwood
- Centre for Cell Biology and Cutaneous Research, Blizard Institute, Barts and The London School of Medicine and Dentistry, Queen Mary University of London, London, United Kingdom
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17
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Au EH, Wong G, Tong A, Teixeira-Pinto A, van Zwieten A, Dobrijevic E, Ahn C, Blosser CD, Davidson B, Francis A, Jhaveri KD, Malyszko J, Mena-Gutierrez A, Newell KA, Palmer S, Scholes-Robertson N, Silva Junior HT, Craig JC. Scope and Consistency of Cancer Outcomes Reported in Randomized Trials in Kidney Transplant Recipients. Kidney Int Rep 2022; 8:274-281. [PMID: 36815120 PMCID: PMC9939355 DOI: 10.1016/j.ekir.2022.10.032] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/28/2022] [Revised: 10/25/2022] [Accepted: 10/31/2022] [Indexed: 11/11/2022] Open
Abstract
Introduction Cancer is an important outcome in kidney transplantation, but the scope and consistency of how cancer is defined and reported in trials involving kidney transplant recipients has not been evaluated. This study aimed to assess the range and variability of cancer outcomes in trials involving kidney transplant recipients. Methods The ClinicalTrials.gov database was searched from February 2000 to July 2021 to identify all randomized controlled trials (RCTs) in adult kidney transplant recipients, and which included cancer as a specified outcome. The definition of cancer, types of cancer (if any), timepoint(s) of measurement and method of aggregation were extracted for each cancer outcome. Results Of the 819 trials in kidney transplantation, only 84 (10%) included 1 or more cancer outcomes. Of these, 72 of 84 (86%) trials included cancer as a secondary outcome and 12 of 84 (14%) considered cancer as a primary outcome. The most frequent description of cancer was "malignancy" (n = 44, 43%), without reference to diagnostic criteria, histology, grade, or stage. The 2 most common cancer types were posttransplant lymphoproliferative disorder (PTLD) (n = 20, 20%) and nonmelanoma skin cancer (n = 10, 10%). Several methods of aggregation were identified, including incidence or rate (n = 47, 46%), frequency or proportion (n = 30, 29%), and time to event (n = 5, 5%). Approximately half the cancer outcomes were measured at a single time point (n = 44, 52%). Conclusion Cancer is an infrequently reported outcome and is inconsistently defined in trials of kidney transplant recipients. Consistent reporting of cancer outcomes using standardized definitions would provide important information on the impact of cancer in patients after kidney transplantation.
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Affiliation(s)
- Eric H. Au
- Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia,Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia,Centre for Transplant and Renal Research, Westmead Hospital, Westmead, New South Wales, Australia,Correspondence: Eric H. Au, Center for Kidney Research, The Children’s Hospital at Westmead, Corner Hawkesbury Road and Hainsworth Street, Westmead, New South Wales 2145, Australia.
| | - Germaine Wong
- Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia,Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia,Centre for Transplant and Renal Research, Westmead Hospital, Westmead, New South Wales, Australia
| | - Allison Tong
- Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia,Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia
| | - Armando Teixeira-Pinto
- Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia,Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia
| | - Anita van Zwieten
- Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia,Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia
| | - Ellen Dobrijevic
- Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia,Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia
| | - Curie Ahn
- Division of Nephrology, National Medical Center, Seoul, Korea
| | - Christopher D. Blosser
- Division of Nephrology, Department of Medicine, University of Washington School of Medicine, and Division of Nephrology, Department of Pediatrics, Seattle Children’s Hospital, Seattle, Washington, USA
| | - Bianca Davidson
- Division of Nephrology, Groote Schuur Hospital, University of Cape Town, Cape Town, South Africa
| | - Anna Francis
- Queensland Children's Hospital, Queensland, Australia
| | - Kenar D. Jhaveri
- Division of Kidney Diseases and Hypertension, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, New York, USA
| | - Jolanta Malyszko
- Department of Nephrology, Dialysis and Internal Medicine, Medical University of Warsaw, Warsaw, Poland
| | | | - Kenneth A. Newell
- Department of Surgery, Emory University School of Medicine, Atlanta, Georgia, USA
| | - Sarah Palmer
- Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia,Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia
| | - Nicole Scholes-Robertson
- Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia,Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia
| | | | - Jonathan C. Craig
- College of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia
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18
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Antoun J, Brown DJ, Clarkson BG, Shepherd AI, Sangala NC, Lewis RJ, McNarry MA, Mackintosh KA, Corbett J, Saynor ZL. Experiences of adults living with a kidney transplant-Effects on physical activity, physical function, and quality of life: A descriptive phenomenological study. J Ren Care 2022. [PMID: 36250752 DOI: 10.1111/jorc.12443] [Citation(s) in RCA: 6] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/06/2022] [Revised: 09/10/2022] [Accepted: 09/12/2022] [Indexed: 11/29/2022]
Abstract
BACKGROUND Although kidney transplantation is the best treatment for kidney failure, scarce research has examined its effects on physical activity, physical function and quality of life. OBJECTIVES To investigate the experiences of a group of adults living with advanced kidney disease focusing on quality of life, physical activity and function and to see how findings differ in a group of kidney transplant recipients. APPROACH Individual semi-structured interviews were conducted with adults with advanced kidney disease (n = 10; 70.5 ± 8.9 years) and adults who had received a kidney transplant (n = 10; 50.7 ± 11.5 years; transplant age: 42.7 ± 20.9 months). Interviews were transcribed verbatim, thematically analysed and composite vignettes developed. FINDINGS Individuals with advanced kidney disease described a sense of loss and alteration to their life plans. Kidney transplant recipients reported increased freedom, independence and a return to near normality, with improved quality of life, physical activity and function compared with their pre-transplant lives. However, transplant recipients also described living with anxiety about the health of their transplant and fear it may fail. CONCLUSION Whilst adults living with advanced kidney disease often experience a reduced quality of life, physical activity and function, kidney transplantation can help facilitate a return to pre-disease levels of physical activity, physical function and quality of life. However, transplant recipients also reported living with anxiety around their new kidney failing. This study demonstrates the variability in the lived experiences of adults living with advanced kidney disease or a kidney transplant and highlights the need for patient-centred care.
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Affiliation(s)
- Joe Antoun
- Physical Activity, Health and Rehabilitation Thematic Research Group, School of Sport, Health and Exercise Sciences, Faculty of Science and Health, University of Portsmouth, Portsmouth, UK.,Academic Department of Renal Medicine, Wessex Kidney Centre, Portsmouth Hospitals University NHS Trust, Portsmouth, UK
| | - Daniel J Brown
- Physical Activity, Health and Rehabilitation Thematic Research Group, School of Sport, Health and Exercise Sciences, Faculty of Science and Health, University of Portsmouth, Portsmouth, UK
| | - Beth G Clarkson
- Physical Activity, Health and Rehabilitation Thematic Research Group, School of Sport, Health and Exercise Sciences, Faculty of Science and Health, University of Portsmouth, Portsmouth, UK
| | - Anthony I Shepherd
- Physical Activity, Health and Rehabilitation Thematic Research Group, School of Sport, Health and Exercise Sciences, Faculty of Science and Health, University of Portsmouth, Portsmouth, UK.,Academic Department of Renal Medicine, Wessex Kidney Centre, Portsmouth Hospitals University NHS Trust, Portsmouth, UK
| | - Nicholas C Sangala
- Academic Department of Renal Medicine, Wessex Kidney Centre, Portsmouth Hospitals University NHS Trust, Portsmouth, UK
| | - Robert J Lewis
- Academic Department of Renal Medicine, Wessex Kidney Centre, Portsmouth Hospitals University NHS Trust, Portsmouth, UK
| | - Melitta A McNarry
- Department of Sport and Exercise Sciences, Applied Sports, Technology, Exercise and Medicine Research Centre (A-STEM), Swansea University, Swansea, UK
| | - Kelly A Mackintosh
- Department of Sport and Exercise Sciences, Applied Sports, Technology, Exercise and Medicine Research Centre (A-STEM), Swansea University, Swansea, UK
| | - Jo Corbett
- Physical Activity, Health and Rehabilitation Thematic Research Group, School of Sport, Health and Exercise Sciences, Faculty of Science and Health, University of Portsmouth, Portsmouth, UK
| | - Zoe L Saynor
- Physical Activity, Health and Rehabilitation Thematic Research Group, School of Sport, Health and Exercise Sciences, Faculty of Science and Health, University of Portsmouth, Portsmouth, UK.,Academic Department of Renal Medicine, Wessex Kidney Centre, Portsmouth Hospitals University NHS Trust, Portsmouth, UK
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19
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Walker RC, Abel S, Palmer SC, Walker C, Heays N, Tipene-Leach D. Values, Perspectives, and Experiences of Indigenous Māori Regarding Kidney Transplantation: A Qualitative Interview Study in Aotearoa/New Zealand. Am J Kidney Dis 2022; 80:20-29.e1. [PMID: 35151826 DOI: 10.1053/j.ajkd.2021.12.010] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/08/2021] [Accepted: 12/22/2021] [Indexed: 12/22/2022]
Abstract
RATIONALE & OBJECTIVE In Aotearoa/New Zealand, Indigenous Māori experience inequitable delivery of kidney transplantation despite disproportionately higher rates of kidney failure. This study describes Māori patients' and families' values, perspectives, and experiences related to kidney transplantation. STUDY DESIGN Qualitative interview study. SETTING & PARTICIPANTS We conducted 40 in-depth interviews of 40 Māori: 8 who had received a transplant, 20 with chronic kidney disease (which included 10 on the deceased donor transplant list, 9 who were interested in transplantation and not currently waitlisted or who were ineligible for waitlisting, and 1 who was not interested in transplantation), 4 live-kidney donors, and 8 family members including 6 who had experiences with donor assessment. ANALYTICAL APPROACH Data were analyzed inductively to generate themes and a conceptual framework. RESULTS We identified 5 major themes: actively seeking a kidney transplant; evolving attitudes toward traditional values and practices; being confronted by interpersonal and systemic racism; poor information and communication; and challenged by social determinants of health. LIMITATIONS Participants were recruited nationally through patient advocacy organizations and 1 regional kidney service. Potential participants unrelated to these groups or region could not be included. CONCLUSIONS Māori participants were highly motivated to seek kidney transplantation and were inspired by positive experiences through donating and receiving a kidney. However, they faced barriers including social determinants, racism, and lack of information that impacted both direct experiences of transplantation and access to transplantation services.
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Affiliation(s)
| | - Sally Abel
- Kaupapa Consulting Ltd, Napier, New Zealand
| | - Suetonia C Palmer
- Department of Medicine, University of Otago, Christchurch, New Zealand; Department of Nephrology, Canterbury District Health Board, Christchurch, New Zealand
| | - Curtis Walker
- Department of Medicine, Midcentral District Health Board, Palmerston North, New Zealand
| | - Nayda Heays
- Hawke's Bay District Health Board, Hastings, New Zealand
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20
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Lim WH, Ooi E, Pilmore HL, Johnson DW, McDonald SP, Clayton P, Hawley C, Mulley WR, Francis R, Collins MG, Jaques B, Larkins NG, Davies CE, Wyburn K, Chadban SJ, Wong G. Interactions Between Donor Age and 12-Month Estimated Glomerular Filtration Rate on Allograft and Patient Outcomes After Kidney Transplantation. Transpl Int 2022; 35:10199. [PMID: 35185379 PMCID: PMC8842263 DOI: 10.3389/ti.2022.10199] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/08/2021] [Accepted: 01/12/2022] [Indexed: 11/25/2022]
Abstract
Reduced estimated glomerular filtration rate (eGFR) at 12-months after kidney transplantation is associated with increased risk of allograft loss, but it is uncertain whether donor age and types modify this relationship. Using Australia and New Zealand registry data, multivariable Cox proportional modelling was used to examine the interactive effects between donor age, types and 12-month eGFR on overall allograft loss. We included 11,095 recipients (4,423 received live-donors). Recipients with lowest 12-month eGFR (<30 ml/min/1.73 m2) experienced the greatest risk of allograft loss, with adjusted HR [95% CI) of 2.65 [2.38–2.95] compared to eGFR of 30–60 ml/min/1.73 m2; whereas the adjusted HR for highest eGFR (>60 ml/min/1.73 m2) was 0.67 [0.62–0.74]. The association of 12-month eGFR and allograft loss was modified by donor age (but not donor types) where a higher risk of allograft loss in recipients with lower compared with higher 12-month eGFR being most pronounced in the younger donor age groups (p < 0.01). Recipients with eGFR <30 ml/min/1.73 m2 12-months after transplantation experienced ≥2.5-fold increased risk of overall allograft loss compared to those with eGFR of >60 ml/min/1.73 m2, and the magnitude of the increased risk is most marked among recipients with younger donors. Careful deliberation of other factors including donor age when considering eGFR as a surrogate for clinical endpoints is warranted.
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Affiliation(s)
- Wai H. Lim
- Department of Renal Medicine, Sir Charles Gairdner Hospital, Perth, WA, Australia
- Medical School, University of Western Australia, Perth, WA, Australia
- *Correspondence: Wai H. Lim,
| | - Esther Ooi
- Medical School, University of Western Australia, Perth, WA, Australia
- School of Biomedical Sciences, University of Western Australia, Perth, WA, Australia
| | - Helen L. Pilmore
- Department of Renal Medicine, Auckland City Hospital, Auckland, New Zealand
- Department of Medicine, University of Auckland, Auckland, New Zealand
| | - David W. Johnson
- Metro South Integrated Nephrology and Transplant Services, Princess Alexandra Hospital, Woolloongabba, QLD, Australia
- Faculty of Medicine, University of Queensland, St Lucia, QLD, Australia
- Translational Research Institute, Brisbane, QLD, Australia
| | - Stephen P. McDonald
- Australia and New Zealand Dialysis and Transplant Registry, Adelaide, SA, Australia
- Central and Northern Adelaide Renal and Transplantation Services, Adelaide, SA, Australia
- South Australia Health and Medical Research Institute, Adelaide, SA, Australia
- Adelaide Medical School, University of Adelaide, Adelaide, SA, Australia
| | - Philip Clayton
- Australia and New Zealand Dialysis and Transplant Registry, Adelaide, SA, Australia
- Central and Northern Adelaide Renal and Transplantation Services, Adelaide, SA, Australia
- South Australia Health and Medical Research Institute, Adelaide, SA, Australia
- Adelaide Medical School, University of Adelaide, Adelaide, SA, Australia
| | - Carmel Hawley
- Metro South Integrated Nephrology and Transplant Services, Princess Alexandra Hospital, Woolloongabba, QLD, Australia
- Faculty of Medicine, University of Queensland, St Lucia, QLD, Australia
- Translational Research Institute, Brisbane, QLD, Australia
| | - William R. Mulley
- Department of Nephrology, Monash Medical Centre, Melbourne, VIC, Australia
- Department of Medicine, Monash University, Melbourne, VIC, Australia
| | - Ross Francis
- Metro South Integrated Nephrology and Transplant Services, Princess Alexandra Hospital, Woolloongabba, QLD, Australia
- Faculty of Medicine, University of Queensland, St Lucia, QLD, Australia
| | - Michael G. Collins
- School of Biomedical Sciences, University of Western Australia, Perth, WA, Australia
- Department of Renal Medicine, Auckland City Hospital, Auckland, New Zealand
| | - Bryon Jaques
- Western Australia Liver and Kidney Transplant Service, Sir Charles Gairdner Hospital, Perth, WA, Australia
| | - Nicholas G. Larkins
- Medical School, University of Western Australia, Perth, WA, Australia
- Department of Nephrology, Perth Children’s Hospital, Perth, WA, Australia
| | - Christopher E. Davies
- Australia and New Zealand Dialysis and Transplant Registry, Adelaide, SA, Australia
- South Australia Health and Medical Research Institute, Adelaide, SA, Australia
- Adelaide Medical School, University of Adelaide, Adelaide, SA, Australia
| | - Kate Wyburn
- Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia
- Renal Medicine, Royal Prince Alfred Hospital, Sydney, NSW, Australia
| | - Steve J. Chadban
- Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia
- Renal Medicine, Royal Prince Alfred Hospital, Sydney, NSW, Australia
| | - Germaine Wong
- Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia
- Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, NSW, Australia
- Department of Renal Medicine and National Pancreas Transplant Unit, Westmead Hospital, Sydney, NSW, Australia
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21
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Tang J, Kerklaan J, Wong G, Howell M, Scholes-Robertson N, Guha C, Kelly A, Tong A. Perspectives of solid organ transplant recipients on medicine-taking: Systematic review of qualitative studies. Am J Transplant 2021; 21:3369-3387. [PMID: 33866675 DOI: 10.1111/ajt.16613] [Citation(s) in RCA: 9] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/18/2021] [Revised: 03/16/2021] [Accepted: 04/02/2021] [Indexed: 01/25/2023]
Abstract
Medicine-taking among transplant recipients is a complex and ubiquitous task with significant impacts on outcomes. This study aimed to describe the perspectives and experiences of medicine-taking in adult solid organ transplant recipients. Electronic databases were searched to July 2020, and thematic synthesis was used to analyze the data. From 119 studies (n = 2901), we identified six themes: threats to identity and ambitions (impaired self-image, restricting goals and roles, loss of financial independence); navigating through uncertainty and distrust (lacking tangible/perceptible benefits, unprepared for side effects, isolation in decision-making); alleviating treatment burdens (establishing and mastering routines, counteracting side effects, preparing for the unexpected); gaining and seeking confidence (clarity with knowledge, reassurance through collective experiences, focusing on the future outlook); recalibrating to a new normal posttransplant (adjusting to ongoing dependence on medications, in both states of illness and health, unfulfilled expectations); and preserving graft survival (maintaining the ability to participate in life, avoiding rejection, enacting a social responsibility of giving back). Transplant recipients take medications to preserve graft function, but dependence on medications jeopardizes their sense of normality. Interventions supporting the adaptation to medicine-taking and addressing treatment burdens may improve patient satisfaction and capacities to take medications for improved outcomes.
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Affiliation(s)
- James Tang
- Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia
| | - Jasmijn Kerklaan
- Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.,Department of Pediatric Nephrology, Academic Medical Center, Emma Children's Hospital, Amsterdam, the Netherlands
| | - Germaine Wong
- Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.,Centre for Transplant and Renal Research, Westmead Hospital, Westmead, NSW, Australia
| | - Martin Howell
- Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia
| | - Nicole Scholes-Robertson
- Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia
| | - Chandana Guha
- Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia
| | - Ayano Kelly
- Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia
| | - Allison Tong
- Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia
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22
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Sharif A. Prevention of Post-Transplantation Diabetes: Small Steps, Big Opportunities. J Am Soc Nephrol 2021; 32:1833-1834. [PMID: 34330768 PMCID: PMC8455261 DOI: 10.1681/asn.2021060777] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/10/2021] [Accepted: 06/10/2021] [Indexed: 02/04/2023] Open
Affiliation(s)
- Adnan Sharif
- Department of Nephrology and Transplantation, Queen Elizabeth Hospital, Birmingham, United Kingdom,,Institute of Immunology and Immunotherapy, University of Birmingham, Birmingham, United Kingdom
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23
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Law JP, Borrows R, McNulty D, Sharif A, Ferro CJ. Early renal function trajectories, cytomegalovirus serostatus and long-term graft outcomes in kidney transplant recipients. BMC Nephrol 2021; 22:102. [PMID: 33743617 PMCID: PMC7981965 DOI: 10.1186/s12882-021-02285-2] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/18/2020] [Accepted: 03/01/2021] [Indexed: 11/10/2022] Open
Abstract
BACKGROUND Improved recognition of factors influencing graft survival has led to better short-term kidney transplant outcomes. However, efforts to prevent long-term graft decline and improve graft survival have seen more modest improvements. The adoption of electronic health records has enabled better recording and identification of donor-recipient factors through the use of modern statistical techniques. We have previously shown in a prevalent renal transplant population that episodes of rapid deterioration are associated with graft loss. METHODS Estimated glomerular filtration rates (eGFR) between 3 and 27 months after transplantation were collected from 310 kidney transplant recipients. We utilised a Bayesian approach to estimate the most likely eGFR trajectory as a smooth curve from an average of 10,000 Monte Carlo samples. The probability of having an episode of rapid deterioration (decline greater than 5 ml/min/1.73 m2 per year in any 1-month period) was calculated. Graft loss and mortality data was collected over a median follow-up period of 8 years. Factors associated with having an episode of rapid deterioration and associations with long-term graft loss were explored. RESULTS In multivariable Cox Proportional Hazard analysis, a probability greater than 0.8 of rapid deterioration was associated with long-term death-censored graft loss (Hazard ratio 2.17; 95% Confidence intervals [CI] 1.04-4.55). In separate multivariable logistic regression models, cytomegalovirus (CMV) serostatus donor positive to recipient positive (Odds ratio [OR] 3.82; 95%CI 1.63-8.97), CMV donor positive (OR 2.06; 95%CI 1.15-3.68), and CMV recipient positive (OR 2.03; 95%CI 1.14-3.60) were associated with having a greater than 0.8 probability of an episode of rapid deterioration. CONCLUSIONS Early episodes of rapid deterioration are associated with long-term death-censored graft loss and are associated with cytomegalovirus seropositivity. Further study is required to better manage these potentially modifiable risks factors and improve long-term graft survival.
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Affiliation(s)
- Jonathan P Law
- Institute of Cardiovascular Sciences, College of Medical and Dental Sciences, Edgbaston, Birmingham, B15 2TT, UK
- Department of Renal Medicine, University Hospitals Birmingham NHS Foundation Trust, Birmingham, B15 2GW, UK
| | - Richard Borrows
- Department of Renal Medicine, University Hospitals Birmingham NHS Foundation Trust, Birmingham, B15 2GW, UK
| | - David McNulty
- Department of Medical Informatics, University Hospitals Birmingham NHS Foundation Trust, Birmingham, B15 2GW, UK
| | - Adnan Sharif
- Department of Renal Medicine, University Hospitals Birmingham NHS Foundation Trust, Birmingham, B15 2GW, UK
| | - Charles J Ferro
- Institute of Cardiovascular Sciences, College of Medical and Dental Sciences, Edgbaston, Birmingham, B15 2TT, UK.
- Department of Renal Medicine, University Hospitals Birmingham NHS Foundation Trust, Birmingham, B15 2GW, UK.
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24
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Puma L, Doyle M. Long-term psychosocial outcomes of adults transplanted in childhood: A social work perspective. Pediatr Transplant 2021; 25:e13859. [PMID: 33105051 DOI: 10.1111/petr.13859] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/28/2020] [Revised: 06/05/2020] [Accepted: 08/28/2020] [Indexed: 12/14/2022]
Abstract
While much research exists regarding medical outcomes for pediatric end stage renal disease (ESRD) populations and for adults receiving dialysis or kidney transplant, the understanding of long-term psychosocial outcomes for individuals diagnosed with ESRD or transplanted in childhood remains limited. A literature review was undertaken by two social work researchers to identify relationship, education, employment, and quality of life (QOL) outcomes for this population utilizing PUBMED and PsycInfo databases. Inconsistencies in the MeSH terms and keywords used across the relevant articles were noted. The impact of transplantation in childhood is significant across multiple facets of social development including but not limited to peer/intimate relationships, education and employment and QOL, and overall well-being. When compared to healthy peers, those with ESRD were delayed in all areas of social development. While improvements in psychosocial outcomes have occurred alongside improved graft and patient survival, more focused longitudinal and qualitative inquiry is needed. Partnerships are needed across disciplines and across those caring for different age cohorts in pediatric, adult nephrology, and transplant practices.
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Affiliation(s)
- Lynn Puma
- School of Social Work, College of Health and Human Services, University of North Carolina at Charlotte, Charlotte, NC, USA
| | - Maya Doyle
- Department of Social Work, School of Health Sciences, Quinnipiac University, Hamden, CT, USA
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25
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Habib Z, Saddul R, Kamran F. Perceptions and experiences of female burn survivors with facial disfigurement. Chin J Traumatol 2021; 24:53-56. [PMID: 33308964 PMCID: PMC7878450 DOI: 10.1016/j.cjtee.2020.11.007] [Citation(s) in RCA: 10] [Impact Index Per Article: 2.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/26/2020] [Revised: 10/10/2020] [Accepted: 11/02/2020] [Indexed: 02/04/2023] Open
Abstract
PURPOSE This study aimed at exploring the perceptions and experiences of female burn survivors with facial disfigurement in Pakistan. METHODS Two different quantitative and qualitative studies were conducted, of which the data were collected from 100 burn patients. A pilot interview protocol was developed. An indepth interview of five female burn survivors with facial disfigurement was taken in Lahore, Pakistan. The transcripts were analyzed using thematic analysis and four major themes were identified, respectively physical appearance, posttraumatic growth, relationships and coping strategies. RESULTS Thematic analysis reflected differences in attributional style, perceptions and individual experiences of female burn survivors with facial disfigurement. The study showed the importance of physical appearance for different burn survivors and how their life had changed after suffering from a burn injury. CONCLUSION It could be easy to have a positive outlook towards life and accept visible differences post injury for the burn survivors, who are grateful for life, get a strong family support and have available resources. On the contrary, with low self-esteem, lack of a family support and available resources, patients would be dissatisfied with their life.
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Affiliation(s)
- Zainab Habib
- Institute of Applied Psychology, University of Punjab, Lahore, 54590, Pakistan,Corresponding author.
| | - Rukhsana Saddul
- Government College for Women University, Sialkot, 51310, Pakistan
| | - Fatima Kamran
- Institute of Applied Psychology, University of Punjab, Lahore, 54590, Pakistan
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26
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Kristensen IV, Birkelund R, Henriksen J, Norlyk A. Living in limbo while one's identity is changing: Patients' existential experiences 6 months after a kidney transplantation with a living donor. J Adv Nurs 2020; 77:1403-1410. [PMID: 33277747 DOI: 10.1111/jan.14683] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/29/2020] [Revised: 09/25/2020] [Accepted: 10/29/2020] [Indexed: 11/27/2022]
Abstract
AIM To investigate patients' existential experiences in everyday life after a kidney transplantation with a living donor. DESIGN A qualitative study anchored in a hermeneutic-phenomenological approach inspired by Ricoeur's theory of narrative and interpretation. METHOD Eleven patient interviews were conducted approximately 6 months after a kidney transplantation with a living donor. The interviews were conducted between August 2017-May 2019. Analysis and interpretation are based on Ricoeur's theory of interpretation. RESULTS Four themes were identified: Experiencing bodily vulnerability while getting back to life; Feeling guilt while experiencing gratitude; Living in limbo while one's identity is changing; and Facing the future with hope while having reservations. CONCLUSION This study reveals that patients experience multifaceted existential challenges in their everyday lives during the transition of the kidney transplantation process. Post-surgery complications for donors lead to feelings of guilt in patients; plus, they must adapt to a new existence, including a new identity. The patients feel they are in limbo, as they experience their existence as uncertain and their identity as unknown. IMPACT The study highlights a need for developing a rehabilitation programme to address the individual and various existential challenges faced by patients who need to undergo a kidney transplantation.
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Affiliation(s)
- Ingrid Villadsen Kristensen
- Section for Nursing, Department of Public Health, Research Centre for Health and Welfare Technology, Programme for Rehabilitation, VIA University College, Aarhus University, Holstebro, Denmark
| | - Regner Birkelund
- Lillebaelt Hospital, Vejle & Institute of Regional Health Research, University of Southern Denmark, Odense, Denmark
| | | | - Annelise Norlyk
- Section for Nursing, Department of Public Health, Research Centre for Health and Welfare Technology, Programme for Rehabilitation, VIA University College, Aarhus University, Holstebro, Denmark
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27
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González AM, Gutman T, Lopez-Vargas P, Anumudu S, Arce CM, Craig JC, Dunn L, Eckardt KU, Harris T, Levey AS, Lightstone L, Scholes-Robertson N, Shen JI, Teixeira-Pinto A, Wheeler DC, White D, Wilkie M, Jadoul M, Winkelmayer WC, Tong A. Patient and Caregiver Priorities for Outcomes in CKD: A Multinational Nominal Group Technique Study. Am J Kidney Dis 2020; 76:679-689. [DOI: 10.1053/j.ajkd.2020.03.022] [Citation(s) in RCA: 38] [Impact Index Per Article: 7.6] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/10/2019] [Accepted: 03/21/2020] [Indexed: 12/30/2022]
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28
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Comparing Glycaemic Benefits of Active Versus Passive Lifestyle Intervention in Kidney Allograft Recipients: A Randomized Controlled Trial. Transplantation 2020; 104:1491-1499. [PMID: 31568390 DOI: 10.1097/tp.0000000000002969] [Citation(s) in RCA: 32] [Impact Index Per Article: 6.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/19/2022]
Abstract
BACKGROUND New-onset diabetes is common after kidney transplantation, but the benefit of lifestyle intervention to improve glucose metabolism posttransplantation is unproven. METHODS We conducted a single-center, randomized controlled trial involving 130 nondiabetic kidney transplant recipients with stable function between 3 and 24 months post-transplantation. Participants were randomly assigned in a 1:1 ratio to receive active intervention (lifestyle advice delivered by renal dietitians using behavior change techniques) versus passive intervention (leaflet advice alone). Primary outcome was 6-month change in insulin secretion, insulin sensitivity, and disposition index. Secondary outcomes included patient-reported outcomes, cardiometabolic parameters, clinical outcomes, and safety endpoints. RESULTS Between August 17, 2015 and December 18, 2017, 130 individuals were recruited, of whom 103 completed the study (drop-out rate 20.8%). Active versus passive intervention was not associated with any change in glucose metabolism: insulin secretion (mean difference, -446; 95% confidence interval [CI], -3184 to 2292; P = 0.748), insulin sensitivity (mean difference, -0.45; 95% CI, -1.34 to 0.44; P = 0.319), or disposition index (mean difference, -940; 95% CI, -5655 to 3775; P = 0.693). Clinically, active versus passive lifestyle intervention resulted in reduced incidence of posttransplantation diabetes (7.6% versus 15.6%, respectively, P = 0.123), reduction in fat mass (mean difference, -1.537 kg; 95% CI, -2.947 to -0.127; P = 0.033), and improvement in weight (mean difference, -2.47 kg; 95% CI, -4.01 to -0.92; P = 0.002). No serious adverse events were noted. CONCLUSIONS Active lifestyle intervention led by renal dietitians did not improve surrogate markers of glucose metabolism. Further investigation is warranted to determine if clinical outcomes can be improved using this methodology.
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29
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Brown KL, Pagel C, Ridout D, Wray J, Tsang VT, Anderson D, Banks V, Barron DJ, Cassidy J, Chigaru L, Davis P, Franklin R, Grieco L, Hoskote A, Hudson E, Jones A, Kakat S, Lakhani R, Lakhanpaul M, McLean A, Morris S, Rajagopal V, Rodrigues W, Sheehan K, Stoica S, Tibby S, Utley M, Witter T. Early morbidities following paediatric cardiac surgery: a mixed-methods study. HEALTH SERVICES AND DELIVERY RESEARCH 2020. [DOI: 10.3310/hsdr08300] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/18/2023] Open
Abstract
Background
Over 5000 paediatric cardiac surgeries are performed in the UK each year and early survival has improved to > 98%.
Objectives
We aimed to identify the surgical morbidities that present the greatest burden for patients and health services and to develop and pilot routine monitoring and feedback.
Design and setting
Our multidisciplinary mixed-methods study took place over 52 months across five UK paediatric cardiac surgery centres.
Participants
The participants were children aged < 17 years.
Methods
We reviewed existing literature, ran three focus groups and undertook a family online discussion forum moderated by the Children’s Heart Federation. A multidisciplinary group, with patient and carer involvement, then ranked and selected nine key morbidities informed by clinical views on definitions and feasibility of routine monitoring. We validated a new, nurse-administered early warning tool for assessing preoperative and postoperative child development, called the brief developmental assessment, by testing this among 1200 children. We measured morbidity incidence in 3090 consecutive surgical admissions over 21 months and explored risk factors for morbidity. We measured the impact of morbidities on quality of life, clinical burden and costs to the NHS and families over 6 months in 666 children, 340 (51%) of whom had at least one morbidity. We developed and piloted methods suitable for routine monitoring of morbidity by centres and co-developed new patient information about morbidities with parents and user groups.
Results
Families and clinicians prioritised overlapping but also different morbidities, leading to a final list of acute neurological event, unplanned reoperation, feeding problems, renal replacement therapy, major adverse events, extracorporeal life support, necrotising enterocolitis, surgical infection and prolonged pleural effusion. The brief developmental assessment was valid in children aged between 4 months and 5 years, but not in the youngest babies or 5- to 17-year-olds. A total of 2415 (78.2%) procedures had no measured morbidity. There was a higher risk of morbidity in neonates, complex congenital heart disease, increased preoperative severity of illness and with prolonged bypass. Patients with any morbidity had a 6-month survival of 81.5% compared with 99.1% with no morbidity. Patients with any morbidity scored 5.2 points lower on their total quality of life score at 6 weeks, but this difference had narrowed by 6 months. Morbidity led to fewer days at home by 6 months and higher costs. Extracorporeal life support patients had the lowest days at home (median: 43 days out of 183 days) and highest costs (£71,051 higher than no morbidity).
Limitations
Monitoring of morbidity is more complex than mortality, and hence this requires resources and clinician buy-in.
Conclusions
Evaluation of postoperative morbidity provides important information over and above 30-day survival and should become the focus of audit and quality improvement.
Future work
National audit of morbidities has been initiated. Further research is needed to understand the implications of feeding problems and renal failure and to evaluate the brief developmental assessment.
Funding
This project was funded by the NIHR Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 30. See the NIHR Journals Library website for further project information.
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Affiliation(s)
- Katherine L Brown
- Heart and Lung Division, Great Ormond Street Hospital NHS Foundation Trust, London, UK
| | - Christina Pagel
- Clinical Operational Research Unit, University College London, London, UK
| | - Deborah Ridout
- Population, Policy and Practice Programme, UCL Great Ormond Street Institute of Child Health, London, UK
| | - Jo Wray
- Heart and Lung Division, Great Ormond Street Hospital NHS Foundation Trust, London, UK
| | - Victor T Tsang
- Heart and Lung Division, Great Ormond Street Hospital NHS Foundation Trust, London, UK
| | - David Anderson
- Departments of Paediatric Intensive Care, Cardiology and Cardiac Surgery, Evelina London Children’s Hospital, London, UK
| | - Victoria Banks
- Heart and Lung Division, Great Ormond Street Hospital NHS Foundation Trust, London, UK
| | - David J Barron
- Departments of Intensive Care and Paediatric Cardiac Surgery, Birmingham Children’s Hospital, Birmingham, UK
| | - Jane Cassidy
- Departments of Intensive Care and Paediatric Cardiac Surgery, Birmingham Children’s Hospital, Birmingham, UK
| | - Linda Chigaru
- Heart and Lung Division, Great Ormond Street Hospital NHS Foundation Trust, London, UK
| | - Peter Davis
- Departments of Intensive Care and Paediatric Cardiac Surgery, Bristol Royal Hospital for Children, Bristol, UK
| | - Rodney Franklin
- Paediatric Cardiology Department, Royal Brompton and Harefield NHS Foundation Trust, London, UK
| | - Luca Grieco
- Clinical Operational Research Unit, University College London, London, UK
| | - Aparna Hoskote
- Heart and Lung Division, Great Ormond Street Hospital NHS Foundation Trust, London, UK
| | - Emma Hudson
- Department of Applied Health Research, University College London, London, UK
| | - Alison Jones
- Departments of Intensive Care and Paediatric Cardiac Surgery, Birmingham Children’s Hospital, Birmingham, UK
| | - Suzan Kakat
- Heart and Lung Division, Great Ormond Street Hospital NHS Foundation Trust, London, UK
| | - Rhian Lakhani
- Departments of Paediatric Intensive Care, Cardiology and Cardiac Surgery, Evelina London Children’s Hospital, London, UK
| | - Monica Lakhanpaul
- Population, Policy and Practice Programme, UCL Great Ormond Street Institute of Child Health, London, UK
- Community Child Health, UCL Great Ormond Street Institute of Child Health, London, UK
| | - Andrew McLean
- Department of Intensive care, Royal Hospital for Children, Glasgow, UK
| | - Steve Morris
- Department of Applied Health Research, University College London, London, UK
| | - Veena Rajagopal
- Heart and Lung Division, Great Ormond Street Hospital NHS Foundation Trust, London, UK
| | - Warren Rodrigues
- Department of Intensive care, Royal Hospital for Children, Glasgow, UK
| | - Karen Sheehan
- Departments of Intensive Care and Paediatric Cardiac Surgery, Bristol Royal Hospital for Children, Bristol, UK
| | - Serban Stoica
- Departments of Intensive Care and Paediatric Cardiac Surgery, Bristol Royal Hospital for Children, Bristol, UK
| | - Shane Tibby
- Departments of Paediatric Intensive Care, Cardiology and Cardiac Surgery, Evelina London Children’s Hospital, London, UK
| | - Martin Utley
- Clinical Operational Research Unit, University College London, London, UK
| | - Thomas Witter
- Departments of Paediatric Intensive Care, Cardiology and Cardiac Surgery, Evelina London Children’s Hospital, London, UK
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30
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Controversy and Debate Series on Core Outcome Sets. Paper 5: Large-scale, mixed-methods, knowledge exchange to establish core outcomes - the SONG approach. J Clin Epidemiol 2020; 125:225-228. [PMID: 32416335 DOI: 10.1016/j.jclinepi.2020.05.015] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/18/2020] [Accepted: 05/05/2020] [Indexed: 12/18/2022]
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31
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Autosomal Dominant Polycystic Kidney Disease Is a Risk Factor for Posttransplantation Diabetes Mellitus: An Updated Systematic Review and Meta-analysis. Transplant Direct 2020; 6:e553. [PMID: 32548247 PMCID: PMC7213605 DOI: 10.1097/txd.0000000000000989] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/27/2020] [Accepted: 01/29/2020] [Indexed: 12/12/2022] Open
Abstract
Supplemental Digital Content is available in the text. Autosomal dominant polycystic kidney disease (ADPKD) is linked with risk for posttransplantation diabetes mellitus (PTDM), but this association has methodologic limitations like diagnostic criteria. The aim of this study was to use contemporary diagnostic criteria for PTDM and explore any risk association for kidney transplant recipients with ADPKD.
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32
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Ranahan M, Von Visger J, Kayler LK. Describing barriers and facilitators for medication adherence and self-management among kidney transplant recipients using the information-motivation-behavioral skills model. Clin Transplant 2020; 34:e13862. [PMID: 32199030 DOI: 10.1111/ctr.13862] [Citation(s) in RCA: 17] [Impact Index Per Article: 3.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/24/2019] [Revised: 03/05/2020] [Accepted: 03/13/2020] [Indexed: 11/29/2022]
Abstract
BACKGROUND We aimed to develop an adapted information-motivation-behavioral skills (IMB) model to describe barriers and facilitators for adherence and self-management among kidney transplant recipients. METHODS We conducted a review of literature about kidney transplant recipients' knowledge, perceptions, and experiences and organized our results using the IMB framework. We then conducted interviews with transplant recipients and transplant providers to supplement our literature search. RESULTS Our proposed adaption of the IMB model describes informational, motivational, and behavioral skills barriers and facilitators for medication adherence and self-management among kidney transplant recipients. Moderating factors influence not only behavioral skills, but also recipients' understanding of information and motivation to adhere and practice self-management. CONCLUSION By using the IMB model to organize current research and interviews with recipients and providers, we developed an adapted model for medication adherence and self-management. Results are promising to impact future educational and behavioral interventions for kidney transplant recipients.
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Affiliation(s)
- Molly Ranahan
- Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo, Buffalo, New York, USA.,Transplant and Kidney Care Regional Center of Excellence, Erie County Medical Center, Buffalo, New York, USA
| | - Jon Von Visger
- Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo, Buffalo, New York, USA.,Transplant and Kidney Care Regional Center of Excellence, Erie County Medical Center, Buffalo, New York, USA
| | - Liise K Kayler
- Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo, Buffalo, New York, USA.,Transplant and Kidney Care Regional Center of Excellence, Erie County Medical Center, Buffalo, New York, USA
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33
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Mikolajczyk AE, Rao VL, Diaz GC, Renz JF. Can reporting more lead to less? The role of metrics in assessing liver transplant program performance. Clin Transplant 2020; 33:e13385. [PMID: 30666739 DOI: 10.1111/ctr.13385] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/03/2018] [Revised: 07/05/2018] [Accepted: 08/16/2018] [Indexed: 01/05/2023]
Abstract
Appropriate metrics for performance analysis is an active topic of debate within the transplant community. This study explores current proposals on metric expansion as well as potential metrics and prospective collaborations that have not received widespread discussion within the transplant community. The premature introduction of additional, nonvalidated metrics risks behaviors that may undermine donor utilization and patient access to transplantation.
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Affiliation(s)
- Adam E Mikolajczyk
- Department of Medicine, Section of Gastroenterology and Hepatology, University of Illinois at Chicago, Chicago, Illinois
| | - Vijaya L Rao
- Department of Medicine, Section of Gastroenterology and Hepatology, University of Illinois at Chicago, Chicago, Illinois
| | - Geraldine C Diaz
- Department of Anesthesiology, SUNY Downstate Medical Center, Brooklyn, New York
| | - John F Renz
- Department of Surgery, Section of Transplantation, University of Chicago, Chicago, Illinois
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Tubben A, Sotomayor CG, Post A, Minovic I, Frelink T, de Borst MH, Said MY, Douwes RM, van den Berg E, Rodrigo R, Berger SP, Navis GJ, Bakker SJL. Urinary Oxalate Excretion and Long-Term Outcomes in Kidney Transplant Recipients. J Clin Med 2019; 8:2104. [PMID: 31810202 PMCID: PMC6947615 DOI: 10.3390/jcm8122104] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/21/2019] [Revised: 11/21/2019] [Accepted: 11/22/2019] [Indexed: 12/13/2022] Open
Abstract
Epidemiologic studies have linked urinary oxalate excretion to risk of chronic kidney disease (CKD) progression and end-stage renal disease. We aimed to investigate whether urinary oxalate, in stable kidney transplant recipients (KTR), is prospectively associated with risk of graft failure. In secondary analyses we evaluated the association with post-transplantation diabetes mellitus, all-cause mortality and specific causes of death. Oxalate excretion was measured in 24-h urine collection samples in a cohort of 683 KTR with a functioning allograft ≥1 year. Mean eGFR was 52 ± 20 mL/min/1.73 m2. Median (interquartile range) urinary oxalate excretion was 505 (347-732) µmol/24-h in women and 519 (396-736) µmol/24-h in men (p = 0.08), with 302 patients (44% of the study population) above normal limits (hyperoxaluria). A consistent and independent inverse association was found with all-cause mortality (HR 0.77, 95% CI 0.63-0.94, p = 0.01). Cause-specific survival analyses showed that this association was mainly driven by an inverse association with mortality due to infection (HR 0.56, 95% CI 0.38-0.83, p = 0.004), which remained materially unchanged after performing sensitivity analyses. Twenty-four-hour urinary oxalate excretion did not associate with risk of graft failure, post-transplant diabetes mellitus, cardiovascular mortality, mortality due to malignancies or mortality due to miscellaneous causes. In conclusion, in KTR, 24-h urinary oxalate excretion is elevated in 44% of KTR and inversely associated with mortality due to infectious causes.
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Affiliation(s)
- Alwin Tubben
- Department of Internal Medicine, University Medical Center Groningen, University of Groningen, Hanzeplein 1, 9700 RB Groningen, The Netherlands; (C.G.S.); (A.P.); (M.H.d.B.); (M.Y.S.); (R.M.D.); (E.v.d.B.); (S.P.B.); (G.J.N.); (S.J.L.B.)
| | - Camilo G. Sotomayor
- Department of Internal Medicine, University Medical Center Groningen, University of Groningen, Hanzeplein 1, 9700 RB Groningen, The Netherlands; (C.G.S.); (A.P.); (M.H.d.B.); (M.Y.S.); (R.M.D.); (E.v.d.B.); (S.P.B.); (G.J.N.); (S.J.L.B.)
| | - Adrian Post
- Department of Internal Medicine, University Medical Center Groningen, University of Groningen, Hanzeplein 1, 9700 RB Groningen, The Netherlands; (C.G.S.); (A.P.); (M.H.d.B.); (M.Y.S.); (R.M.D.); (E.v.d.B.); (S.P.B.); (G.J.N.); (S.J.L.B.)
| | - Isidor Minovic
- Department of Laboratory Medicine, University Medical Center Groningen, University of Groningen, Hanzeplein 1, 9700 RB Groningen, The Netherlands;
| | - Timoer Frelink
- Metrohm Applikon B.V., 3125 AE Schiedam, The Netherlands;
| | - Martin H. de Borst
- Department of Internal Medicine, University Medical Center Groningen, University of Groningen, Hanzeplein 1, 9700 RB Groningen, The Netherlands; (C.G.S.); (A.P.); (M.H.d.B.); (M.Y.S.); (R.M.D.); (E.v.d.B.); (S.P.B.); (G.J.N.); (S.J.L.B.)
| | - M. Yusof Said
- Department of Internal Medicine, University Medical Center Groningen, University of Groningen, Hanzeplein 1, 9700 RB Groningen, The Netherlands; (C.G.S.); (A.P.); (M.H.d.B.); (M.Y.S.); (R.M.D.); (E.v.d.B.); (S.P.B.); (G.J.N.); (S.J.L.B.)
| | - Rianne M. Douwes
- Department of Internal Medicine, University Medical Center Groningen, University of Groningen, Hanzeplein 1, 9700 RB Groningen, The Netherlands; (C.G.S.); (A.P.); (M.H.d.B.); (M.Y.S.); (R.M.D.); (E.v.d.B.); (S.P.B.); (G.J.N.); (S.J.L.B.)
| | - Else van den Berg
- Department of Internal Medicine, University Medical Center Groningen, University of Groningen, Hanzeplein 1, 9700 RB Groningen, The Netherlands; (C.G.S.); (A.P.); (M.H.d.B.); (M.Y.S.); (R.M.D.); (E.v.d.B.); (S.P.B.); (G.J.N.); (S.J.L.B.)
| | - Ramón Rodrigo
- Molecular and Clinical Pharmacology Program, Institute of Biomedical Sciences, Faculty of Medicine, University of Chile, 8380453 Santiago, Chile;
| | - Stefan P. Berger
- Department of Internal Medicine, University Medical Center Groningen, University of Groningen, Hanzeplein 1, 9700 RB Groningen, The Netherlands; (C.G.S.); (A.P.); (M.H.d.B.); (M.Y.S.); (R.M.D.); (E.v.d.B.); (S.P.B.); (G.J.N.); (S.J.L.B.)
| | - Gerjan J. Navis
- Department of Internal Medicine, University Medical Center Groningen, University of Groningen, Hanzeplein 1, 9700 RB Groningen, The Netherlands; (C.G.S.); (A.P.); (M.H.d.B.); (M.Y.S.); (R.M.D.); (E.v.d.B.); (S.P.B.); (G.J.N.); (S.J.L.B.)
| | - Stephan J. L. Bakker
- Department of Internal Medicine, University Medical Center Groningen, University of Groningen, Hanzeplein 1, 9700 RB Groningen, The Netherlands; (C.G.S.); (A.P.); (M.H.d.B.); (M.Y.S.); (R.M.D.); (E.v.d.B.); (S.P.B.); (G.J.N.); (S.J.L.B.)
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James L, Wong G, Craig JC, Howard K, Howell M, Tong A. Nephrologists' perspectives on cancer screening in patients with chronic kidney disease: An interview study. Nephrology (Carlton) 2019; 24:414-421. [PMID: 29633488 DOI: 10.1111/nep.13269] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 03/30/2018] [Indexed: 12/11/2022]
Abstract
AIM Patients with chronic kidney disease (CKD) have an increased risk of cancer compared with the general population. Despite this, there is considerable variability in cancer screening practices among nephrologists that may reflect uncertainties about the benefits and harms of screening, the additional costs, and competing priorities among the complex issues that patients are confronted with. We aimed to describe nephrologists' perspectives and approaches to cancer screening in CKD. METHODS Semi-structured interviews were conducted with 29 nephrologists from 15 units across Australia and New Zealand. Interviews were transcribed and thematically analyzed. RESULTS Five themes were identified: empowering patients to make informed decisions (respecting patient preferences, communicating evidence-based recommendations, creating awareness of consequences, preparing for transplantation); justifiable risk taking (avoiding undue consequences in vulnerable populations, balancing the costs and benefits, warranted by long term immunosuppression, assurance of reasonable survival gains); ambiguity of evidence in supporting decisions (absence of standardized recommendations, limited transferability of population-based data); depending on a shared multidisciplinary approach (collaboration with primary health care, access to coordinated skin cancer clinics); and prioritizing current or imminent complications. CONCLUSION Nephrologists approach decisions about cancer screening in patients with CKD based on patient preferences, assessment of risk, justifiable survival gains, and current health priorities. Evidence-based guidelines, communication frameworks and specialist clinics may support informed and shared decision making about cancer screening in CKD.
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Affiliation(s)
- Laura James
- Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia.,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia
| | - Germaine Wong
- Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia.,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.,Centre for Transplant and Renal Research, Westmead Hospital, Sydney, New South Wales, Australia
| | - Jonathan C Craig
- Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia.,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia
| | - Kirsten Howard
- Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia
| | - Martin Howell
- Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia.,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia
| | - Allison Tong
- Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia.,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia
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Hanson CS, Gutman T, Craig JC, Bernays S, Raman G, Zhang Y, James LJ, Ralph AF, Ju A, Manera KE, Teixeira-Pinto A, Viecelli AK, Alexander SI, Blydt-Hansen TD, Dionne J, McTaggart S, Michael M, Walker A, Carter S, Wenderfer SE, Winkelmayer WC, Bockenhauer D, Dart A, Eddy AA, Furth SL, Gipson DS, Goldstein SL, Groothoff J, Samuel S, Sinha A, Webb NJ, Yap HK, Zappitelli M, Currier H, Tong A. Identifying Important Outcomes for Young People With CKD and Their Caregivers: A Nominal Group Technique Study. Am J Kidney Dis 2019; 74:82-94. [DOI: 10.1053/j.ajkd.2018.12.040] [Citation(s) in RCA: 26] [Impact Index Per Article: 4.3] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/10/2018] [Accepted: 12/23/2018] [Indexed: 11/11/2022]
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Tucker EL, Smith AR, Daskin MS, Schapiro H, Cottrell SM, Gendron ES, Hill-Callahan P, Leichtman AB, Merion RM, Gill SJ, Maass KL. Life and expectations post-kidney transplant: a qualitative analysis of patient responses. BMC Nephrol 2019; 20:175. [PMID: 31096942 PMCID: PMC6524208 DOI: 10.1186/s12882-019-1368-0] [Citation(s) in RCA: 32] [Impact Index Per Article: 5.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/17/2019] [Accepted: 05/01/2019] [Indexed: 01/08/2023] Open
Abstract
BACKGROUND The effect of a kidney transplant on a recipient extends beyond the restoration of kidney function. However, there is limited qualitative analysis of recipient perspectives on life following transplantation, particularly in the United States. To understand the full patient experience, it is necessary to understand recipient views on life adjustments after kidney transplantation, medical management, and quality of life. This could lead to improvements in recipient care and sense of well-being. METHODS We conducted a paper-based survey from March 23 to October 1, 2015 of 476 kidney transplant recipients at the University of Michigan Health System in Ann Arbor, Michigan. We analyzed their open-ended responses using qualitative research methods. This is a companion analysis to a previous quantitative report on the closed-ended responses to that survey. RESULTS Common themes relating to changes following transplantation included: improvements in quality of life, a return to normalcy, better health and more energy. Concerns included: duration of graft survival, fears about one day returning to dialysis or needing to undergo another kidney transplant, comorbidities, future quality of life, and the cost and quality of their healthcare. Many recipients were grateful for their transplant, but some were anxious about the burdens transplantation placed on their loved ones. CONCLUSIONS While most recipients reported meaningful improvements in health and lifestyle after kidney transplantation, a minority of participants experienced declines in energy or health status. Worries about how long the transplant will function, future health, and cost and quality of healthcare are prevalent. Future research could study the effects of providing additional information, programs, and interventions following transplantation that target these concerns. This may better prepare and support kidney recipients and lead to improvements in the patient experience.
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Affiliation(s)
- Emily L. Tucker
- Department of Industrial and Operations Engineering, University of Michigan, Ann Arbor, MI USA
| | | | - Mark S. Daskin
- Department of Industrial and Operations Engineering, University of Michigan, Ann Arbor, MI USA
| | - Hannah Schapiro
- Department of Industrial and Operations Engineering, University of Michigan, Ann Arbor, MI USA
| | - Sabrina M. Cottrell
- Department of Industrial and Operations Engineering, University of Michigan, Ann Arbor, MI USA
| | - Evelyn S. Gendron
- Department of Industrial and Operations Engineering, University of Michigan, Ann Arbor, MI USA
| | | | - Alan B. Leichtman
- Arbor Research Collaborative for Health, Ann Arbor, MI USA
- Department of Internal Medicine, University of Michigan, Ann Arbor, MI USA
| | - Robert M. Merion
- Arbor Research Collaborative for Health, Ann Arbor, MI USA
- Department of Surgery, University of Michigan, Ann Arbor, MI USA
| | | | - Kayse Lee Maass
- Department of Industrial and Operations Engineering, University of Michigan, Ann Arbor, MI USA
- Department of Mechanical and Industrial Engineering, Northeastern University, Boston, MA USA
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Sonnenberg EM, Cohen JB, Hsu JY, Potluri VS, Levine MH, Abt PL, Reese PP. Association of Kidney Transplant Center Volume With 3-Year Clinical Outcomes. Am J Kidney Dis 2019; 74:441-451. [PMID: 31076173 DOI: 10.1053/j.ajkd.2019.02.019] [Citation(s) in RCA: 11] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/01/2019] [Accepted: 02/26/2019] [Indexed: 12/29/2022]
Abstract
RATIONALE & OBJECTIVE A robust relationship between procedure volume and clinical outcomes has been demonstrated across many surgical fields. This study assessed whether a center volume-outcome relationship exists for contemporary kidney transplantation, specifically for diabetic recipients, older recipients (aged ≥65 years), and recipients of high kidney donor profile index (KDPI ≥ 85) kidneys. STUDY DESIGN Retrospective cohort study. SETTING & PARTICIPANTS Adult kidney-only transplant recipients who underwent transplantation between 2009 and 2013 (N = 79,581). EXPOSURES The primary exposure variable was center volume, categorized into quartiles based on the total kidney transplantation volume. Quartile 1 (Q1) centers performed a mean of fewer than 66 kidney transplantations per year, whereas Q4 centers performed a mean of more than 196 kidney transplantations per year. OUTCOMES All-cause graft failure and mortality within 3 years of transplantation. ANALYTICAL APPROACH Multivariable Cox frailty models were used to adjust for donor characteristics, recipient characteristics, and cold ischemia time. RESULTS Minor differences in rates of 3-year deceased donor all-cause graft failure across quartiles of center volume were observed (14.9% for Q1 vs 16.7% for Q4), including in subgroups (diabetic recipients, 18.4% for Q1 vs 19.7% for Q4; older recipients, 19.4% for Q1 vs 22.5% for Q4; recipients of high KDPI kidneys, 26.5% for Q1 vs 26.5% for Q4). Results were similar for 3-year mortality. After adjustment for donor, recipient, and graft characteristics using Cox regression, center volume was not significantly associated with all-cause graft failure or mortality within 3 years, except that diabetic recipients at Q3 centers had slightly lower mortality (compared with Q1 centers, adjusted HR of 0.85 [95% CI, 0.73-0.99]). LIMITATIONS Potential unmeasured confounding from patient comorbid conditions and organ selection. CONCLUSIONS These findings provide little evidence that care in higher volume centers is associated with better adjusted outcomes for kidney transplant recipients, even in populations anticipated to be at increased risk for graft failure or death.
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Affiliation(s)
- Elizabeth M Sonnenberg
- Department of Surgery, University of Pennsylvania, Philadelphia, PA; Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, PA; National Clinician Scholars Program, University of Pennsylvania, Philadelphia, PA
| | - Jordana B Cohen
- Renal-Electrolyte and Hypertension Division, University of Pennsylvania, Philadelphia, PA; Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania, Philadelphia, PA
| | - Jesse Y Hsu
- Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, PA; Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania, Philadelphia, PA
| | - Vishnu S Potluri
- Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, PA; Renal-Electrolyte and Hypertension Division, University of Pennsylvania, Philadelphia, PA
| | - Matthew H Levine
- Department of Surgery, University of Pennsylvania, Philadelphia, PA
| | - Peter L Abt
- Department of Surgery, University of Pennsylvania, Philadelphia, PA
| | - Peter P Reese
- Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, PA; Renal-Electrolyte and Hypertension Division, University of Pennsylvania, Philadelphia, PA; Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania, Philadelphia, PA.
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Cho Y, Sautenet B, Gutman T, Rangan G, Craig JC, Ong AC, Chapman A, Ahn C, Coolican H, Kao JT, Gansevoort R, Perrone RD, Harris T, Torres V, Pei Y, Kerr PG, Ryan J, Johnson DW, Viecelli AK, Geneste C, Kim H, Kim Y, Oh YK, Teixeira‐Pinto A, Logeman C, Howell M, Ju A, Manera KE, Tong A. Identifying patient‐important outcomes in polycystic kidney disease: An international nominal group technique study. Nephrology (Carlton) 2019; 24:1214-1224. [DOI: 10.1111/nep.13566] [Citation(s) in RCA: 12] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 01/13/2019] [Indexed: 12/19/2022]
Affiliation(s)
- Yeoungjee Cho
- Department of NephrologyPrincess Alexandra Hospital
- Australasian Kidney Trials NetworkUniversity of Queensland
- Translational Research Institute Brisbane Queensland Australia
| | - Benedicte Sautenet
- Department of Nephrology Hypertension, Dialysis, Kidney TransplantationTours Hospital, SPHERE – INSERM 1246, University of Tours and Nantes Tours France
| | - Talia Gutman
- Sydney School of Public HealthThe University of Sydney Sydney New South Wales Australia
- Centre for Kidney ResearchThe Children's Hospital at Westmead
| | - Gopala Rangan
- Centre for Transplant and Renal Research, Westmead Institute for Medical ResearchThe University of Sydney
- Department of Renal Medicine, Westmead HospitalWestern Sydney Local Health District Sydney New South Wales Australia
| | - Jonathan C Craig
- College of Medicine and Public HealthFlinders University Adelaide South Australia Australia
| | - Albert C Ong
- Academic Nephrology Unit, Department of Infection Immunity & Cardiovascular DiseaseUniversity of Sheffield Sheffield UK
| | - Arlene Chapman
- Department of MedicineThe University of Chicago Chicago Illinois USA
| | - Curie Ahn
- Division of NephrologySeoul National University Hospital Seoul South Korea
| | - Helen Coolican
- Polycystic Kidney Disease Foundation of Australia Sydney Australia
| | - Juliana T‐W Kao
- School of MedicineFu Jen Catholic University and Fu Jen Catholic University Hospital
- Department of Internal MedicineNational Taiwan University Hospital Taipei Taiwan
| | - Ron Gansevoort
- Faculty of Medical SciencesUniversity Medical Center Gronigen Gronigen the Netherlands
| | - Ronald D Perrone
- Division of Nephrology, Tufts Medical CenterTufts University School of Medicine Boston Massachusetts US
| | - Tess Harris
- Polycystic Kidney Disease International London UK
| | - Vicente Torres
- Department of Nephrology and HypertensionMayo Clinic Rochester Minnestota USA
| | - York Pei
- Division of Nephrology and Division of Genomic MedicineUniversity of Toronto Toronto Canada
| | - Peter G Kerr
- Department of NephrologyMonash Medical Centre and Monash University Melbourne Victoria Australia
| | - Jessica Ryan
- Department of NephrologyMonash Medical Centre and Monash University Melbourne Victoria Australia
| | - David W Johnson
- Department of NephrologyPrincess Alexandra Hospital
- Australasian Kidney Trials NetworkUniversity of Queensland
- Translational Research Institute Brisbane Queensland Australia
| | | | - Claire Geneste
- Department of Nephrology Hypertension, Dialysis, Kidney TransplantationTours Hospital, SPHERE – INSERM 1246, University of Tours and Nantes Tours France
| | - Hyunsuk Kim
- Division of NephrologySeoul National University Hospital Seoul South Korea
| | - Yaerim Kim
- Division of NephrologySeoul National University Hospital Seoul South Korea
| | - Yun Kyu Oh
- Division of NephrologySeoul National University Hospital Seoul South Korea
| | - Armando Teixeira‐Pinto
- Sydney School of Public HealthThe University of Sydney Sydney New South Wales Australia
- Centre for Kidney ResearchThe Children's Hospital at Westmead
| | - Charlotte Logeman
- Sydney School of Public HealthThe University of Sydney Sydney New South Wales Australia
- Centre for Kidney ResearchThe Children's Hospital at Westmead
| | - Martin Howell
- Sydney School of Public HealthThe University of Sydney Sydney New South Wales Australia
- Centre for Kidney ResearchThe Children's Hospital at Westmead
| | - Angela Ju
- Sydney School of Public HealthThe University of Sydney Sydney New South Wales Australia
- Centre for Kidney ResearchThe Children's Hospital at Westmead
| | - Karine E Manera
- Sydney School of Public HealthThe University of Sydney Sydney New South Wales Australia
- Centre for Kidney ResearchThe Children's Hospital at Westmead
| | - Allison Tong
- Sydney School of Public HealthThe University of Sydney Sydney New South Wales Australia
- Centre for Kidney ResearchThe Children's Hospital at Westmead
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Maass KL, Smith AR, Tucker EL, Schapiro H, Cottrell SM, Gendron E, Hill-Callahan P, Gill SJ, Daskin MS, Merion RM, Leichtman AB. Comparison of patient and provider goals, expectations, and experiences following kidney transplantation. PATIENT EDUCATION AND COUNSELING 2019; 102:990-997. [PMID: 30591284 DOI: 10.1016/j.pec.2018.12.010] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 04/29/2018] [Revised: 11/12/2018] [Accepted: 12/08/2018] [Indexed: 06/09/2023]
Abstract
OBJECTIVE This study examined whether kidney transplant recipients' post-transplant goals and expectations align with those as perceived by their healthcare providers. METHODS Post-transplant goals and expectations across four domains were assessed via a descriptive survey of healthcare providers (N=72) and kidney transplant recipients (N=476) at the University of Michigan from March 23 - October 1, 2015. Demographic and transplant-related data were collected via a retrospective review of medical records, and survey responses were compared using Chi-square tests, Wilcoxon two-sample tests, and logistic regression. RESULTS Patients expressed higher quality of life (mean Neuro-QOL T-score 60.2 vs. 52.7), were less likely to report that they were currently experiencing complications (11% vs. 24%), and anticipated their transplants to last longer (median 25 vs. 15 years) and to live longer (median 80 vs. 71 years) than providers expected for their typical patient. However, provider perceptions of patients' future ability to feel well, perform daily activities and work were significantly higher than those expressed by patients (all p<0.05). CONCLUSION Kidney transplant patient and provider expectations differ in significant ways. PRACTICE IMPLICATIONS Identified areas of discordance may provide opportunities for patients and providers to better evaluate treatment option tradeoffs in post-transplant clinical interactions.
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Affiliation(s)
- Kayse Lee Maass
- Department of Mechanical and Industrial Engineering, Northeastern University, Boston, USA; Department of Industrial and Operations Engineering, University of Michigan, Ann Arbor, USA
| | - Abigail R Smith
- Department of Biostatistics, University of Michigan, Ann Arbor, USA; Arbor Research Collaborative for Health, Ann Arbor, USA
| | - Emily L Tucker
- Department of Industrial and Operations Engineering, University of Michigan, Ann Arbor, USA
| | - Hannah Schapiro
- Department of Industrial and Operations Engineering, University of Michigan, Ann Arbor, USA
| | - Sabrina M Cottrell
- Department of Industrial and Operations Engineering, University of Michigan, Ann Arbor, USA
| | - Evelyn Gendron
- Department of Industrial and Operations Engineering, University of Michigan, Ann Arbor, USA
| | | | | | - Mark S Daskin
- Department of Industrial and Operations Engineering, University of Michigan, Ann Arbor, USA
| | - Robert M Merion
- Arbor Research Collaborative for Health, Ann Arbor, USA; Department of Surgery, University of Michigan, Ann Arbor, USA
| | - Alan B Leichtman
- Arbor Research Collaborative for Health, Ann Arbor, USA; Department of Internal Medicine, University of Michigan, Ann Arbor, USA.
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Ho J, Sharma A, Kroeker K, Carroll R, De Serres S, Gibson IW, Hirt-Minkowski P, Jevnikar A, Kim SJ, Knoll G, Rush DN, Wiebe C, Nickerson P. Multicentre randomised controlled trial protocol of urine CXCL10 monitoring strategy in kidney transplant recipients. BMJ Open 2019; 9:e024908. [PMID: 30975673 PMCID: PMC6500325 DOI: 10.1136/bmjopen-2018-024908] [Citation(s) in RCA: 11] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/03/2023] Open
Abstract
INTRODUCTION Subclinical inflammation is an important predictor of death-censored graft loss, and its treatment has been shown to improve graft outcomes. Urine CXCL10 outperforms standard post-transplant surveillance in observational studies, by detecting subclinical rejection and early clinical rejection before graft functional decline in kidney transplant recipients. METHODS AND ANALYSIS This is a phase ii/iii multicentre, international randomised controlled parallel group trial to determine if the early treatment of rejection, as detected by urine CXCL10, will improve kidney allograft outcomes. Incident adult kidney transplant patients (n~420) will be enrolled to undergo routine urine CXCL10 monitoring postkidney transplant. Patients at high risk of rejection, defined as confirmed elevated urine CXCL10 level, will be randomised 1:1 stratified by centre (n=250). The intervention arm (n=125) will undergo a study biopsy to check for subclinical rejection and biopsy-proven rejection will be treated per protocol. The control arm (n=125) will undergo routine post-transplant monitoring. The primary outcome at 12 months is a composite of death-censored graft loss, clinical biopsy-proven acute rejection, de novo donor-specific antibody, inflammation in areas of interstitial fibrosis and tubular atrophy (Banff i-IFTA, chronic active T-cell mediated rejection) and subclinical tubulitis on 12-month surveillance biopsy. The secondary outcomes include decline of graft function, microvascular inflammation at 12 months, development of IFTA at 12 months, days from transplantation to clinical biopsy-proven rejection, albuminuria, EuroQol five-dimension five-level instrument, cost-effectiveness analysis of the urine CXCL10 monitoring strategy and the urine CXCL10 kinetics in response to rejection therapy. ETHICS AND DISSEMINATION The study has been approved by the University of Manitoba Health Research Ethics Board (HS20861, B2017:076) and the local research ethics boards of participating centres. Recruitment commenced in March 2018 and results are expected to be published in 2023. De-identified data may be shared with other researchers according to international guidelines (International Committee of Medical Journal Editors [ICJME]). TRIAL REGISTRATION NUMBER NCT03206801; Pre-results.
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Affiliation(s)
- Julie Ho
- Internal Medicine, University of Manitoba College of Medicine, Winnipeg, Manitoba, Canada
- Immunology, University of Manitoba, Winnipeg, Manitoba, Canada
| | - Atul Sharma
- Data Science, George and Fay Yee Centre for Healthcare Innovation, Winnipeg, Manitoba, Canada
| | - Kristine Kroeker
- Data Science, George and Fay Yee Centre for Healthcare Innovation, Winnipeg, Manitoba, Canada
| | - Robert Carroll
- Transplant Nephrology, Royal Adelaide Hospital, Adelaide, South Australia, Australia
| | - Sacha De Serres
- Internal Medicine & Nephrology, Universite Laval, Québec, Québec, Canada
| | - Ian W Gibson
- Pathology, University of Manitoba, Winnipeg, Manitoba, Canada
| | | | - Anthony Jevnikar
- Internal Medicine & Nephrology, Western University, London, Ontario, Canada
| | - S Joseph Kim
- Internal Medicine & Nephrology, University of Toronto, Toronto, Ontario, Canada
| | - Greg Knoll
- Internal Medicine & Nephrology, University of Ottawa, Ottawa, Ontario, Canada
| | - David N Rush
- Internal Medicine, University of Manitoba College of Medicine, Winnipeg, Manitoba, Canada
| | - Chris Wiebe
- Internal Medicine, University of Manitoba College of Medicine, Winnipeg, Manitoba, Canada
| | - Peter Nickerson
- Internal Medicine, University of Manitoba College of Medicine, Winnipeg, Manitoba, Canada
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Establishing a Core Outcome Measure for Graft Health: A Standardized Outcomes in Nephrology-Kidney Transplantation (SONG-Tx) Consensus Workshop Report. Transplantation 2019; 102:1358-1366. [PMID: 29470347 DOI: 10.1097/tp.0000000000002125] [Citation(s) in RCA: 16] [Impact Index Per Article: 2.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/28/2022]
Abstract
BACKGROUND Graft loss, a critically important outcome for transplant recipients, is variably defined and measured, and incompletely reported in trials. We convened a consensus workshop on establishing a core outcome measure for graft loss for all trials in kidney transplantation. METHODS Twenty-five kidney transplant recipients/caregivers and 33 health professionals from 8 countries participated. Transcripts were analyzed thematically. RESULTS Five themes were identified. "Graft loss as a continuum" conceptualizes graft loss as a process, but requiring an endpoint defined as a discrete event. In "defining an event with precision and accuracy," loss of graft function requiring chronic dialysis (minimum, 90 days) provided an objective and practical definition; retransplant would capture preemptive transplantation; relisting was readily measured but would overestimate graft loss; and allograft nephrectomy was redundant in being preceded by dialysis. However, the thresholds for renal replacement therapy varied. Conservative management was regarded as too ambiguous and complex to use routinely. "Distinguishing death-censored graft loss" would ensure clarity and meaningfulness in interpreting results. "Consistent reporting for decision making" by specifying time points and metrics (ie time to event) was suggested. "Ease of ascertainment and data collection" of the outcome from registries could support use of registry data to efficiently extend follow-up of trial participants. CONCLUSIONS A practical and meaningful core outcome measure for graft loss may be defined as chronic dialysis or retransplant, and distinguished from loss due to death. Consistent reporting of graft loss using standardized metrics and time points may improve the contribution of trials to decision making in kidney transplantation.
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Arshad A, Jackson-Spence F, Sharif A. Development and evaluation of dedicated low clearance transplant clinics for patients with failing kidney transplants. J Ren Care 2019; 45:51-58. [PMID: 30784227 DOI: 10.1111/jorc.12268] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/29/2022]
Abstract
BACKGROUND Recipients with failing kidney transplants (RFKTs) may receive sub-optimal care compared with patients with native kidney disease. The aim of this study is to compare the outcomes of RFKTs managed in a dedicated low clearance transplant clinic (LCTC) compared with those attending a general transplant clinic. METHODS We undertook a retrospective analysis of patients with failing kidney transplants comparing two clinics-a LCTC versus a general transplant clinic. Kidney transplant recipients with an eGFR < 20 ml/min were included. A cross-sectional analysis was undertaken of all patients with two consecutive follow-up visits between the dates of January and July 2016 in either clinic, with follow-up to event or December 2017. RESULTS Data were analysed for 141 kidney transplant recipients; 60 in the LCTC and 81 in the general transplant clinic. More patients in the LCTC cohort were non-white and early transplant recipients. A significantly greater proportion of LCTC versus general transplant patients had received documented discussions regarding their hepatitis vaccine status (63.3% vs. 17.3%, p < 0.001), counselled regarding dialysis modality (98.3% vs. 55.6%, p < 0.001) and had documented decision regarding re-transplantation (80.0% vs. 58.0%, p = 0.006). No difference was noted in the comparison of any clinical or biochemical parameters. More patients seen in the LCTC lost their kidney allograft (HR: 2.09, 95%CI: 1.17-3.72, p = 0.013) but patient survival was equivalent (p = 0.343). CONCLUSION Our data suggest the management of RFKTs within LCTCs can focus attention on renal replacement therapy planning and counselling, but further work is warranted to investigate for any benefit in hard outcomes such as survival.
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Affiliation(s)
- Adam Arshad
- University of Birmingham College of Medical and Dental Sciences, Birmingham, UK
| | | | - Adnan Sharif
- University of Birmingham College of Medical and Dental Sciences, Birmingham, UK.,Department of Nephrology and Transplantation, Queen Elizabeth Hospital Birmingham, Birmingham, UK
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Manera KE, Johnson DW, Craig JC, Shen JI, Ruiz L, Wang AYM, Yip T, Fung SK, Tong M, Lee A, Cho Y, Viecelli AK, Sautenet B, Teixeira-Pinto A, Brown EA, Brunier G, Dong J, Dunning T, Mehrotra R, Naicker S, Pecoits-Filho R, Perl J, Wilkie M, Tong A. Patient and Caregiver Priorities for Outcomes in Peritoneal Dialysis: Multinational Nominal Group Technique Study. Clin J Am Soc Nephrol 2019; 14:74-83. [PMID: 30573659 PMCID: PMC6364541 DOI: 10.2215/cjn.05380518] [Citation(s) in RCA: 98] [Impact Index Per Article: 16.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/01/2018] [Accepted: 10/15/2018] [Indexed: 02/03/2023]
Abstract
BACKGROUND AND OBJECTIVES The absence of accepted patient-centered outcomes in research can limit shared decision-making in peritoneal dialysis (PD), particularly because PD-related treatments can be associated with mortality, technique failure, and complications that can impair quality of life. We aimed to identify patient and caregiver priorities for outcomes in PD, and to describe the reasons for their choices. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS Patients on PD and their caregivers were purposively sampled from nine dialysis units across Australia, the United States, and Hong Kong. Using nominal group technique, participants identified and ranked outcomes, and discussed the reasons for their choices. An importance score (scale 0-1) was calculated for each outcome. Qualitative data were analyzed thematically. RESULTS Across 14 groups, 126 participants (81 patients, 45 caregivers), aged 18-84 (mean 54, SD 15) years, identified 56 outcomes. The ten highest ranked outcomes were PD infection (importance score, 0.27), mortality (0.25), fatigue (0.25), flexibility with time (0.18), BP (0.17), PD failure (0.16), ability to travel (0.15), sleep (0.14), ability to work (0.14), and effect on family (0.12). Mortality was ranked first in Australia, second in Hong Kong, and 15th in the United States. The five themes were serious and cascading consequences on health, current and impending relevance, maintaining role and social functioning, requiring constant vigilance, and beyond control and responsibility. CONCLUSIONS For patients on PD and their caregivers, PD-related infection, mortality, and fatigue were of highest priority, and were focused on health, maintaining lifestyle, and self-management. Reporting these patient-centered outcomes may enhance the relevance of research to inform shared decision-making.
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Affiliation(s)
- Karine E. Manera
- Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia
- Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia
| | - David W. Johnson
- Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia
- Australian Kidney Trials Network, School of Medicine, University of Queensland, Brisbane, Australia
- Centre for Kidney Disease Research, University of Queensland at Princess Alexandra Hospital, Brisbane, Australia
| | - Jonathan C. Craig
- Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia
- Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia
| | - Jenny I. Shen
- Division of Nephrology and Hypertension, Los Angeles Biomedical Research Institute at Harbor, University of California, Los Angeles Medical Center, Torrance, California
| | - Lorena Ruiz
- Division of Nephrology and Hypertension, Los Angeles Biomedical Research Institute at Harbor, University of California, Los Angeles Medical Center, Torrance, California
| | - Angela Yee-Moon Wang
- Department of Medicine, Queen Mary Hospital, University of Hong Kong, Hong Kong, China
| | - Terence Yip
- Department of Medicine, Tung Wah Hospital, Hong Kong, China
| | - Samuel K.S. Fung
- Division of Nephrology, Department of Medicine and Geriatrics, Jockey Club Nephrology and Urology Centre, Princess Margaret Hospital, Kowloon, Hong Kong, China
| | - Matthew Tong
- Department of Medicine and Geriatrics, Pok Oi Hospital, Yuen Long, Hong Kong, China
| | - Achilles Lee
- Department of Medicine and Geriatrics, Tuen Mun Hospital, Hong Kong, China
| | - Yeoungjee Cho
- Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia
- Australian Kidney Trials Network, School of Medicine, University of Queensland, Brisbane, Australia
| | - Andrea K. Viecelli
- Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia
- Australian Kidney Trials Network, School of Medicine, University of Queensland, Brisbane, Australia
| | - Benedicte Sautenet
- Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia
- Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia
- Department of Medicine, University François Rabelais, Tours, France
- Department of Nephrology and Clinical Immunology, Tours Hospital, Tours, France
- U1246, Institut National de la Santé et de la Recherche Médicale, University François Rabelais, Tours, France
| | - Armando Teixeira-Pinto
- Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia
- Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia
| | - Edwina Anne Brown
- Imperial College Renal and Transplant Centre, Hammersmith Hospital, London, UK
| | - Gillian Brunier
- Division of Nephrology, Sunnybrook Health Sciences Centre (retired), Toronto, Ontario, Canada
| | - Jie Dong
- Renal Division, Department of Medicine, Peking University First Hospital, Beijing, China
| | - Tony Dunning
- South Bank Technical and Further Education, Brisbane, Australia
| | - Rajnish Mehrotra
- Division of Nephrology, Department of Medicine, Kidney Research Institute and Harborview Medical Center, University of Washington, Seattle, Washington
| | - Saraladevi Naicker
- Department of Internal Medicine, School of Clinical Medicine, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa
| | - Roberto Pecoits-Filho
- School of Medicine, Pontifícia Universidade Católica do Paraná, Curitiba, Paraná, Brazil
| | - Jeffrey Perl
- Division of Nephrology, Department of Medicine, St. Michael’s Hospital, University of Toronto, Toronto, Ontario, Canada; and
| | - Martin Wilkie
- Department of Nephrology, Sheffield Teaching Hospitals National Health Service Foundation Trust, Sheffield, UK
| | - Allison Tong
- Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia
- Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia
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Verberne WR, Das-Gupta Z, Allegretti AS, Bart HAJ, van Biesen W, García-García G, Gibbons E, Parra E, Hemmelder MH, Jager KJ, Ketteler M, Roberts C, Al Rohani M, Salt MJ, Stopper A, Terkivatan T, Tuttle KR, Yang CW, Wheeler DC, Bos WJW. Development of an International Standard Set of Value-Based Outcome Measures for Patients With Chronic Kidney Disease: A Report of the International Consortium for Health Outcomes Measurement (ICHOM) CKD Working Group. Am J Kidney Dis 2018; 73:372-384. [PMID: 30579710 DOI: 10.1053/j.ajkd.2018.10.007] [Citation(s) in RCA: 88] [Impact Index Per Article: 12.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/24/2018] [Accepted: 10/14/2018] [Indexed: 12/14/2022]
Abstract
Value-based health care is increasingly promoted as a strategy for improving care quality by benchmarking outcomes that matter to patients relative to the cost of obtaining those outcomes. To support the shift toward value-based health care in chronic kidney disease (CKD), the International Consortium for Health Outcomes Measurement (ICHOM) assembled an international working group of health professionals and patient representatives to develop a standardized minimum set of patient-centered outcomes targeted for clinical use. The considered outcomes and patient-reported outcome measures were generated from systematic literature reviews. Feedback was sought from patients and health professionals. Patients with very high-risk CKD (stages G3a/A3 and G3b/A2-G5, including dialysis, kidney transplantation, and conservative care) were selected as the target population. Using an online modified Delphi process, outcomes important to all patients were selected, such as survival and hospitalization, and to treatment-specific subgroups, such as vascular access survival and kidney allograft survival. Patient-reported outcome measures were included to capture domains of health-related quality of life, which were rated as the most important outcomes by patients. Demographic and clinical variables were identified to be used as case-mix adjusters. Use of these consensus recommendations could enable institutions to monitor, compare, and improve the quality of their CKD care.
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Affiliation(s)
| | - Zofia Das-Gupta
- International Consortium for Health Outcomes Measurement, London, United Kingdom
| | | | - Hans A J Bart
- patient representative, Dutch Kidney Patients Association (NVN), Bussum, the Netherlands
| | - Wim van Biesen
- Renal Division, Ghent University Hospital, Ghent, Belgium
| | - Guillermo García-García
- University of Guadalajara Health Sciences Center, Hospital Civil de Guadalajara "Fray Antonio Alcalde," Guadalajara, Jalisco, Mexico
| | - Elizabeth Gibbons
- Nuffield Department of Population Health, University of Oxford, Oxford, United Kingdom (EG)
| | - Eduardo Parra
- Hospital Universitario Miguel Servet, Zaragoza, Spain
| | - Marc H Hemmelder
- Dutch Renal Registry (Renine), Nefrovisie, Utrecht; Medical Center Leeuwarden, Leeuwarden
| | - Kitty J Jager
- ERA-EDTA Registry, Amsterdam UMC, University of Amsterdam, Department of Medical Informatics, Amsterdam Public Health Research Institute, Amsterdam, the Netherlands
| | - Markus Ketteler
- Klinikum Coburg, Coburg, Germany; University of Split School of Medicine, Split, Croatia
| | - Charlotte Roberts
- International Consortium for Health Outcomes Measurement, London, United Kingdom
| | | | - Matthew J Salt
- International Consortium for Health Outcomes Measurement, London, United Kingdom
| | - Andrea Stopper
- European Renal Care Providers Association, Brussels, Belgium
| | | | - Katherine R Tuttle
- Providence Medical Research Center, Providence Health Care Kidney Research Institute, Nephrology Division and Institute for Translational Health Sciences, University of Washington, Spokane, WA
| | - Chih-Wei Yang
- Chang Gung Memorial Hospital, Linkou; Chang Gung University, College of Medicine, Taoyuan, Taiwan
| | - David C Wheeler
- Centre for Nephrology, University College London, London, United Kingdom
| | - Willem Jan W Bos
- St Antonius Hospital, Nieuwegein; Leiden University Medical Center, Leiden, the Netherlands
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Jesudason S, Tong A. The patient experience of kidney disease and pregnancy. Best Pract Res Clin Obstet Gynaecol 2018; 57:77-88. [PMID: 30600168 DOI: 10.1016/j.bpobgyn.2018.12.003] [Citation(s) in RCA: 21] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/02/2018] [Revised: 12/01/2018] [Accepted: 12/04/2018] [Indexed: 11/17/2022]
Abstract
Achieving parenthood is often a priority and goal for women with chronic kidney disease (CKD). It can be challenging due to medical and emotional complexities around pregnancy planning and care, increased risk of adverse maternal and fetal outcomes, fears about medications such as immunosuppressants and fetal harm, and concerns regarding the impact of pregnancy on women's kidney health. Navigating the pathways for shared decision-making regarding parenthood requires an understanding of the patient's experiences, values, priorities, and needs. In this review, we describe the patient perspective of high-risk pregnancies including those complicated by CKD and outline recommendations for counseling that incorporate these perspectives to improve the patient experience.
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Affiliation(s)
- Shilpanjali Jesudason
- Central and Northern Adelaide Renal and Transplantation Service, Royal Adelaide Hospital, Port Road, Adelaide, South Australia, 5000, Australia; Department of Medicine, University of Adelaide, Adelaide, South Australia, 5000, Australia.
| | - Allison Tong
- Sydney School of Public Health, The University of Sydney, New South Wales, 2006, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, New South Wales, 2145, Australia
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Olarte Parra C, Van de Bruaene C, Weynants L, Nagler EV, McAleenan A, Elbers RG, Higgins JPT, Goetghebeur E. Pre-emptive versus non pre-emptive kidney transplantation for end-stage kidney disease. Hippokratia 2018. [DOI: 10.1002/14651858.cd013073] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/11/2022]
Affiliation(s)
- Camila Olarte Parra
- Ghent University; Department of Applied Mathematics, Computer Science and Statistics; Campus Sterre, S9, Krijgslaan 281 Ghent East Flanders Belgium 9000
| | - Cedric Van de Bruaene
- Ghent University Hospital; Department of Internal Medicine; De Pintelaan 185 Ghent East Flanders Belgium 9000
| | - Laurens Weynants
- Ghent University Hospital; Department of Urology; De Pintelaan 185 Ghent East Flanders Belgium 9000
| | - Evi V Nagler
- Ghent University Hospital; Renal Division, Sector Metabolic and Cardiovascular Conditions; De Pintelaan 185 Ghent Belgium 9000
| | - Alexandra McAleenan
- University of Bristol; Population Health Sciences, Bristol Medical School; 39 Whatley Road Bristol UK BS8 2PS
| | - Roy G Elbers
- University of Bristol; Population Health Sciences, Bristol Medical School; 39 Whatley Road Bristol UK BS8 2PS
| | - Julian P T Higgins
- University of Bristol; Population Health Sciences, Bristol Medical School; 39 Whatley Road Bristol UK BS8 2PS
| | - Els Goetghebeur
- Ghent University; Department of Applied Mathematics, Computer Science and Statistics; Campus Sterre, S9, Krijgslaan 281 Ghent East Flanders Belgium 9000
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Range and Consistency of Outcomes Reported in Randomized Trials Conducted in Kidney Transplant Recipients: A Systematic Review. Transplantation 2018; 102:2065-2071. [DOI: 10.1097/tp.0000000000002278] [Citation(s) in RCA: 22] [Impact Index Per Article: 3.1] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/13/2022]
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Harrison TG, Tam-Tham H, Hemmelgarn BR, James MT, Sinnarajah A, Thomas CM. Identification and Prioritization of Quality Indicators for Conservative Kidney Management. Am J Kidney Dis 2018; 73:174-183. [PMID: 30482578 DOI: 10.1053/j.ajkd.2018.08.014] [Citation(s) in RCA: 17] [Impact Index Per Article: 2.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/17/2018] [Accepted: 08/29/2018] [Indexed: 01/28/2023]
Abstract
RATIONALE & OBJECTIVE Conservative kidney management is holistic patient-centered care for patients with kidney failure that focuses on delaying the progression of kidney disease and symptom management, without the provision of renal replacement therapy. Currently there is no consensus as to what constitutes high-quality conservative kidney management. We aimed to develop a set of quality indicators for the conservative management of kidney failure. STUDY DESIGN Nominal group technique and Delphi survey process. SETTING & PARTICIPANTS 16 patients and caregivers from Calgary, Canada, participated in 2 nominal group meetings. 91 multidisciplinary health care professionals from 10 countries took part in a Delphi process. ANALYTICAL APPROACH Nominal group technique study of patients and caregivers was used to identify and prioritize a list of quality indicators. A 4-round Delphi process with health care professionals was used to rate the quality indicators until consensus was reached (defined as a mean rating on the Likert scale ≥7.0 and percent agreement >75%). Quality indicators that met criteria for consensus inclusion in the Delphi survey were ranked, and comparisons were made with nominal group priorities. RESULTS 99 quality indicators met consensus criteria for inclusion. The most highly rated quality indicator in the Delphi process was the "percentage of patients that die in the place they desire." There was significant discordance between priorities of the nominal groups with that of the Delphi survey, with only 1 quality indicator being shared on each groups' top 10 list of quality indicators. LIMITATIONS Participants were largely from high-income English-speaking countries, and most already had structured conservative kidney management programs in place, all potentially limiting generalizability. CONCLUSIONS Quality of conservative kidney management care is important to patients, caregivers, and health care professionals. However, discordant quality indicator priorities between groups suggested that care providers delivering conservative kidney management may not prioritize what is most important to those receiving this care. Conservative kidney management programs and health care providers can improve the applicability of this consensus-based quality indicator list to their program by further developing and evaluating it for use in their program.
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Affiliation(s)
- Tyrone G Harrison
- Department of Medicine, University of Calgary, Calgary, Alberta, Canada; Department of Community Health Sciences, University of Calgary, Calgary, Alberta, Canada
| | - Helen Tam-Tham
- Department of Medicine, University of Calgary, Calgary, Alberta, Canada; Department of Community Health Sciences, University of Calgary, Calgary, Alberta, Canada
| | - Brenda R Hemmelgarn
- Department of Medicine, University of Calgary, Calgary, Alberta, Canada; Department of Community Health Sciences, University of Calgary, Calgary, Alberta, Canada
| | - Matthew T James
- Department of Medicine, University of Calgary, Calgary, Alberta, Canada; Department of Community Health Sciences, University of Calgary, Calgary, Alberta, Canada
| | - Aynharan Sinnarajah
- Department of Community Health Sciences, University of Calgary, Calgary, Alberta, Canada; Department of Family Medicine, University of Calgary, Calgary, Alberta, Canada; Department of Oncology, University of Calgary, Calgary, Alberta, Canada
| | - Chandra M Thomas
- Department of Medicine, University of Calgary, Calgary, Alberta, Canada.
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Cormican O, Dowling M. Using nominal group technique to inform the development of a self-management app for patients with relapsed myeloma. HRB Open Res 2018. [DOI: 10.12688/hrbopenres.12863.1] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/20/2022] Open
Abstract
Background: The nominal group technique (NGT) allows stakeholders to directly generate items for needs assessment. The objective was to demonstrate the use of NGT to inform the development of a healthcare app in patients with relapsed myeloma. Healthcare professionals with experience in the care of patients with relapsed/refractory myeloma were invited to participate. Methods: One NGT group was conducted. In the group, health care professionals working in haematology were asked to vote anonymously in order of highest priority, on symptoms previously highlighted by relapsed/refractory myeloma patients in four focus groups. Results: A total of 18 healthcare professionals working in the area of haematology participated in the NGT discussion; consultants (n=6), haematology registrars (n=2), specialist nurses [Advanced Nurse Practitioner/Clinical Nurse Specialist] (haematology) (n=3), staff nurse (n=1), and “other” health care professionals (n=6). Participants ranged in experience of working with myeloma patients from 2 years to over 27 years. The symptoms voted in highest priority were: Pain, Fatigue, Peripheral Neuropathy, Infection Risk and Steroid Induced Side Effects. Conclusions: The NGT was an efficient method for obtaining information to inform a healthcare app.
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