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Pham A, Chaudhry NA, Molina I, Setya A, Flint A, Dang A, Wang L, Potlach T, Li Q, Guo Y, McGetrick M, Beasley G, Estores I, Keefer L, Dubinsky M, Zimmermann EM. Impact of age at diagnosis on college adjustment in students with inflammatory bowel disease. JPGN REPORTS 2025; 6:91-98. [PMID: 40386316 PMCID: PMC12078055 DOI: 10.1002/jpr3.12162] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 04/17/2024] [Revised: 10/27/2024] [Accepted: 12/01/2024] [Indexed: 05/20/2025]
Abstract
Objectives Little is known about the experience of college students with inflammatory bowel disease (IBD) and the factors associated with transition readiness, academic adjustment, and alternatively, those associated with academic hardship and attrition. Methods Survey-based cross-sectional studies, including those addressing disease-specific quality of life (Short Inflammatory Bowel Disease Questionnaire), IBD disease activity (Harvey-Bradshaw Index and Patient Simple Clinical Colitis Activity Index), college adjustment (Student Adjustment to College Questionnaire), transition readiness (Transition Readiness Assessment Questionnaire [TRAQ]), and self-efficacy (inflammatory bowel disease self-efficacy scale). Results The surveys were completed by 135 participants (59 IBD patients [37 Crohn's disease and 22 ulcerative colitis]; 76 controls). Participants with IBD were matched with respect to age, gender, academic status, and involvement in extracurricular activities. Participants endorsed making important college decisions associated with their disease and were significantly more likely to live at home (p < 0.001), take fewer credits (p < 0.02), and more likely than controls to have their education interrupted (p < 0.0005). Participant age at diagnosis was an important factor associated with college adjustment, with older age at diagnosis having the most association with the ability to adjust to college life. As expected based on prior literature, TRAQ scores suggested better than expected transition readiness in college students with IBD (p < 0.0006) with subscores revealing that female students are better at managing health issues and daily activities. Conclusion IBD affects the college experience of students-patients significantly and can have life-long implications. Newly diagnosed students are at risk of poor college adjustment impacting academic performance and their future success. Male students are at greater risk than female students of poor transitioning to adult IBD care. Students with IBD should receive enhanced and age-specific modern IBD care.
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Affiliation(s)
- Angela Pham
- Department of MedicineCollege of MedicineUniversity of FloridaGainesvilleFloridaUSA
| | - Naueen A. Chaudhry
- Department of MedicineCollege of MedicineUniversity of FloridaGainesvilleFloridaUSA
| | - Isaac Molina
- Department of MedicineCollege of MedicineUniversity of FloridaGainesvilleFloridaUSA
| | - Aniruddh Setya
- Department of PediatricsCollege of MedicineUniversity of FloridaGainesvilleFloridaUSA
| | - Andrew Flint
- Department of MedicineCollege of MedicineUniversity of FloridaGainesvilleFloridaUSA
| | - Anna Dang
- Department of MedicineCollege of MedicineUniversity of FloridaGainesvilleFloridaUSA
| | - Laurie Wang
- Department of MedicineCollege of MedicineUniversity of FloridaGainesvilleFloridaUSA
| | - Tomas Potlach
- Department of MedicineCollege of MedicineUniversity of FloridaGainesvilleFloridaUSA
| | - Qian Li
- Department of StatisticsCollege of MedicineUniversity of FloridaGainesvilleFloridaUSA
| | - Yi Guo
- Department of StatisticsCollege of MedicineUniversity of FloridaGainesvilleFloridaUSA
| | - Molly McGetrick
- Department of PediatricsCollege of MedicineUniversity of FloridaGainesvilleFloridaUSA
| | - Genie Beasley
- Department of PediatricsCollege of MedicineUniversity of FloridaGainesvilleFloridaUSA
| | - Irene Estores
- Department of MedicineCollege of MedicineUniversity of FloridaGainesvilleFloridaUSA
| | - Laurie Keefer
- Division of GastroenterologyIcahn School of Medicine at Mount SinaiNew YorkNew YorkUSA
| | - Marla Dubinsky
- Division of GastroenterologyIcahn School of Medicine at Mount SinaiNew YorkNew YorkUSA
| | - Ellen M. Zimmermann
- Department of MedicineCollege of MedicineUniversity of FloridaGainesvilleFloridaUSA
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Vernon-Roberts A, Chan P, Christensen B, Havrlant R, Giles E, Williams AJ. Pediatric to Adult Transition in Inflammatory Bowel Disease: Consensus Guidelines for Australia and New Zealand. Inflamm Bowel Dis 2025; 31:563-578. [PMID: 38701328 PMCID: PMC11808574 DOI: 10.1093/ibd/izae087] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/28/2024] [Indexed: 05/05/2024]
Abstract
BACKGROUND The incidence of pediatric inflammatory bowel disease (IBD) is rising, and there is an increasing need to support adolescents when they transition to adult care. Evidence supports the use of a structured transition process but there is great variation across Australasia. The study aim was to develop evidence and expert opinion-based consensus statements to guide transitional care services in IBD. METHODS A modified UCLA-RAND methodology was employed to develop consensus statements. An IBD expert steering committee was formed and a systematic literature review was conducted to guide the drafting of consensus statements. A multidisciplinary group was formed comprising 16 participants (clinicians, nurses, surgeons, psychologists), who anonymously voted on the appropriateness and necessity of the consensus statements using Likert scales (1 = lowest, 9 = highest) with a median ≥7 required for inclusion. Patient support groups, including direct input from young people with IBD, informed the final recommendations. RESULTS Fourteen consensus statements were devised with key recommendations including use of a structured transition program and transition coordinator, mental health and transition readiness assessment, key adolescent discussion topics, allied health involvement, age for transition, and recommendations for clinical communication and handover, with individualized patient considerations. Each statement reached median ≥8 for appropriateness, and ≥7 for necessity, in the first voting round, and the results were discussed in an online meeting to refine statements. CONCLUSIONS A multidisciplinary group devised consensus statements to optimize pediatric to adult transitional care for adolescents with IBD. These guidelines should support improved and standardized delivery of IBD transitional care within Australasia.
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Affiliation(s)
| | - Patrick Chan
- Department of Gastroenterology, Liverpool Hospital, Sydney, New South Wales, Australia
| | - Britt Christensen
- Department of Gastroenterology, Royal Melbourne Hospital, Melbourne, Victoria, Australia
| | - Rachael Havrlant
- Transition Care Network, Agency for Clinical Innovation, NSW Health, Sydney, New South Wales, Australia
| | - Edward Giles
- Department of Paediatrics, Monash University, Melbourne, Victoria, Australia
- Centre for Innate Immunity and Infectious Disease, Hudson Institute of Medical Research, Melbourne, Victoria, Australia
| | - Astrid-Jane Williams
- Department of Gastroenterology, Liverpool Hospital, Sydney, New South Wales, Australia
- Faculty of Medicine, South Western Sydney Clinical School, University of New South Wales, Sydney, New South Wales, Australia
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Barry JN, Moses JD, Kim SC. A Clinician's Guide To Effectively Transitioning and Transferring Care For Pediatric Patients With Inflammatory Bowel Diseases From The Pediatric To Adult Gastroenterologist. Curr Gastroenterol Rep 2024; 26:255-262. [PMID: 39009946 PMCID: PMC11387428 DOI: 10.1007/s11894-024-00936-6] [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: 05/22/2024] [Indexed: 07/17/2024]
Abstract
PURPOSE OF REVIEW Transition of care for pediatric patients with inflammatory bowel diseases (IBD) is a continuous, dynamic process that takes place over several years with a coordinated approach executed by a multidisciplinary team. We review the concepts, tools, and research in effective transitioning and transfer of care for adolescent/young adult patients with IBD. RECENT FINDINGS Given the constraints within the healthcare system, effective transitioning can be challenging to implement in everyday clinical practice. Different barriers include resources and expertise in effective transitioning by pediatric and adult gastroenterology healthcare providers and the impact of non-gastrointestinal issues facing young adult patients who are learning to manage and coordinate all aspects of their medical care and health maintenance. Factors that facilitate successful care transitioning and transfer include structured transitioning programs, utilization of validated transition checklists, and IBD medical summaries. Proactive transitioning by pediatric gastroenterologists in partnership with their emerging young adult patients with IBD leads to better clinical and psychosocial outcomes and ultimately, effective transfer of care to adult gastroenterology. By utilizing utilize comprehensive transition assessment tools and medical summaries in partnership with their patients, pediatric and adult gastroenterology teams can better prepare patients as they transfer to independent care and health maintenance.
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Affiliation(s)
- Jessica N Barry
- Cleveland Clinic, Division of Pediatric Gastroenterology, Hepatology and Nutrition, Cleveland, OH, USA
| | - Jonathan D Moses
- Stanford Medicine Children's Health Division of Gastroenterology, Hepatology, and Nutrition, Palo Alto, CA, USA
| | - Sandra C Kim
- Cleveland Clinic, Division of Pediatric Gastroenterology, Hepatology and Nutrition, Cleveland, OH, USA.
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Tóbi L, Prehoda B, Balogh AM, Nagypál P, Kovács K, Miheller P, Iliás Á, Dezsőfi-Gottl A, Cseh Á. Transition is associated with lower disease activity, fewer relapses, better medication adherence, and lower lost-to-follow-up rate as opposed to self-transfer in pediatric-onset inflammatory bowel disease patients: results of a longitudinal, follow-up, controlled study. Therap Adv Gastroenterol 2024; 17:17562848241252947. [PMID: 39156978 PMCID: PMC11327998 DOI: 10.1177/17562848241252947] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/13/2023] [Accepted: 04/15/2024] [Indexed: 08/20/2024] Open
Abstract
BACKGROUND Despite the continuously rising rate of pediatric-onset inflammatory bowel diseases (PIBD), there are no consensus transitional guidelines or standardized practices. OBJECTIVES We aimed to examine: (1) the determinants of a successful transfer, (2) the effects of the transfer versus transition on the disease course and patient compliance, (3) the unique characteristics of PIBD patients, that need special attention in adult care. DESIGN Longitudinal, follow-up, controlled study conducted between 2001 and 2022, with retrospective data collection until 2018, thence prospective. METHODS Three hundred fifty-one PIBD patients enrolled in the study, of whom 152 were moved to adult care, with a mean post-transfer follow-up time of 3 years. Seventy-three patients took part in structured transition, whereas 79 self-transferred to adult care. The main outcome measures were disease activity (defined by PCDAI, PUCAI, CDAI, and Mayo-scores) and course, hospitalizations, surgeries, IBD-related complications, including anthropometry and bone density, patient compliance, medication adherence, and continuation of medical care. RESULTS Patients who underwent structured transition spent significantly more time in remission (83.6% ± 28.5% versus 77.5% ± 29.7%, p = 0.0339) and had better adherence to their medications (31.9% versus 16.4% non-adherence rate, p = 0.0455) in adult care, with self-transferred patients having a 1.59-fold increased risk of discontinuing their medical care and a 1.88-fold increased risk of experiencing a relapse. Post-transfer the compliance of patients deteriorated (38.5% versus 29%, p = 0.0002), with the highest lost-to-follow-up rate during the changing period between the healthcare systems (12.7%), in which female gender was a risk factor (p = 0.010). PIBD patients had experienced IBD-related complications (23.4%) and former surgeries (15%) upon arriving at adult care, with high rates of malnutrition, growth impairment, and poor bone health. CONCLUSION Structured transition plays a key role in ensuring the best disease course and lowering the lost-to-follow-up rate among PIBD patients. BRIEF SUMMARY Structured transition plays a key role in ensuring the best disease outcome among PIBD patients, as in our study it was associated with lower disease activity, fewer relapses, better medication adherence, and lower lost-to-follow-up rate as opposed to self-transfer.
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Affiliation(s)
- Luca Tóbi
- Pediatric Center, MTA Center of Excellence, Semmelweis University, Post Office Box 2, Budapest 1428, Hungary
| | - Bence Prehoda
- Pediatric Center, MTA Center of Excellence, Semmelweis University, Budapest, Hungary
| | - Anna M. Balogh
- Pediatric Center, MTA Center of Excellence, Semmelweis University, Budapest, Hungary
| | - Petra Nagypál
- Pediatric Center, MTA Center of Excellence, Semmelweis University, Budapest, Hungary
| | - Krisztián Kovács
- Department of Laboratory Medicine, Semmelweis University, Budapest, Hungary
| | - Pál Miheller
- Department of Surgery, Transplantation, and Gastroenterology, Semmelweis University, Budapest, Hungary
| | - Ákos Iliás
- Department of Internal Medicine and Oncology, Semmelweis University, Budapest, Hungary
| | - Antal Dezsőfi-Gottl
- Pediatric Center, MTA Center of Excellence, Semmelweis University, Budapest, Hungary
| | - Áron Cseh
- Pediatric Center, MTA Center of Excellence, Semmelweis University, Budapest, Hungary
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Castiglione F, Scarallo L, Nardone OM, Aloi M, Alvisi P, Armuzzi A, Arrigo S, Bodini G, Calabrese E, Ceccarelli L, Fries W, Marseglia A, Martinelli M, Milla M, Orlando A, Rispo A, Rizzello F, Romano C, Caprioli F, Lionetti P. Transition care in patients with IBD: The pediatric and the adult gastroenterologist's perspective. Results from a national survey. Dig Liver Dis 2024; 56:802-809. [PMID: 38072745 DOI: 10.1016/j.dld.2023.10.007] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/27/2023] [Revised: 10/01/2023] [Accepted: 10/05/2023] [Indexed: 04/29/2024]
Abstract
BACKGROUND Transition is a crucial process in the care of IBD patients, although it remains largely heterogeneous. AIMS To provide an overview of the transition process in Italy and to investigate the perspective of the paediatric and adult physicians. METHODS An online survey was developed by the Italian Group for Inflammatory Bowel Diseases (IG-IBD) and the Italian Society of Paediatric Gastroenterology, Hepatology and Nutrition (SIGENP). RESULTS 104 physicians (62 paediatric and 42 adult gastroenterologists) participated to the survey. The disease status was ranked with the highest priority among the key elements of the transition process. The age of the patient was perceived with a higher priority by paediatric gastroenterologists than by adult ones (p < 0.01). In most cases, the transition was organized through one or more joint meetings. Only less than 25 % of responders reported to involve other professions during transition. The struggle in leaving paediatric setting was perceived as the main obstacle to an effective transition process. Paediatric IBD gastroenterologists ranked the struggle in leaving the paediatric setting and the attending physician as higher critical point than adult gastroenterologists. CONCLUSIONS The current survey provided a snapshot of the IBD transition process in Italy. The present findings highlight the need to embed transitional care in healthcare policy.
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Affiliation(s)
- Fabiana Castiglione
- Department of Clinical Medicine and Surgery, "Federico II" University of Naples, Naples, Italy
| | - Luca Scarallo
- Gastroenterology and Nutrition Unit, Meyer IRCCS children's Hospital, Florence, Italy; Department NEUROFARBA, University of Florence, Italy
| | - Olga Maria Nardone
- Gastroenterology, Department of Public Health, University Federico II of Naples
| | - Marina Aloi
- Department of Maternal and Child Health, Pediatric Gastroenterology and Liver Unit, Umberto I Hospital, Sapienza University of Rome, Rome, Italy
| | - Patrizia Alvisi
- Pediatric Gastroenterology Unit, Maggiore Hospital, 40133 Bologna, Italy
| | | | - Serena Arrigo
- Pediatric Gastroenterology and Endoscopy Unit, IRCCS Giannina Gaslini, Genova, Italy
| | - Giorgia Bodini
- IRCCS Policlinico San Martino, University of Genova, Genova, Italy
| | - Emma Calabrese
- Gastroenterology Unit, Department of Systems Medicine, University of Rome Tor Vergata, Rome, Italy
| | - Linda Ceccarelli
- Gastrointestinal Unit, Department of Translational Sciences and New Technologies in Medicine and Surgery, University of Pisa, 56010, Pisa, Italy
| | - Walter Fries
- Inflammatory Bowel Disease Unit, Dept. of Clinical and Experimental Medicine, University of Messina, Messina; Italy
| | - Antonio Marseglia
- Fondazione IRCCS Casa Sollievo della Sofferenza, Division of Pediatrics, San Giovanni Rotondo, Italy
| | - Massimo Martinelli
- Department of Translational Medical Science, Section of Pediatrics, University of Naples Federico II, Naples, Italy
| | - Monica Milla
- IBD Referral Center, Gastroenterology Unit, Azienda Ospedaliero-Universitaria Careggi, Florence
| | | | - Antonio Rispo
- Department of Clinical Medicine and Surgery, "Federico II" University of Naples, Naples, Italy
| | - Fernando Rizzello
- IBD Unit, IRCCS, Azienda Ospedaliero-Universitaria di Bologna, University of Bologna, Via Massarenti 9, 40138 Bologna, Italy; DIMEC, University of Bologna, Italy
| | - Claudio Romano
- Pediatric Gastroenterology and Cystic Fibrosis Unit, University of Messina, Italy
| | - Flavio Caprioli
- Department of Pathophysiology and Transplantation, University of Milan, Milan, Italy; Gastroenterology and Endoscopy Unit, Fondazione IRCCS Cà Granda, Ospedale Maggiore Policlinico di Milano, Milan, Italy
| | - Paolo Lionetti
- Gastroenterology and Nutrition Unit, Meyer IRCCS children's Hospital, Florence, Italy; Department NEUROFARBA, University of Florence, Italy.
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6
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Dotson JL, Bricker J, Chisolm DJ, Mackner LM. Patient, Parent, and Provider Perceptions of Barriers to Pediatric Inflammatory Bowel Disease Care. JPGN REPORTS 2023; 4:e386. [PMID: 38034447 PMCID: PMC10684132 DOI: 10.1097/pg9.0000000000000386] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 08/16/2022] [Accepted: 07/15/2023] [Indexed: 12/02/2023]
Abstract
Objectives Children with inflammatory bowel disease (IBD) have a significant life-long burden as a result of disease, impacted by environmental and individual barriers. Successful health system interventions require a comprehensive approach, informed by various stakeholders. The main objective was to identify health system barriers and potential solutions from existing patients, families, and providers via focus groups. Methods Participants for the focus groups were existing English-speaking patients (ages 9-18) with IBD, their caregiver(s), and providers including multiple professions (eg, physician, nurse, pediatrician, social worker, care coordinator, scheduler, and psychologist). Separate focus groups were led by experienced personnel for parents, children, and providers, using a standardized interview guide. Sessions were recorded, transcribed, and verified. Using content analysis, we systematically classified data through coding and identified themes. Results Focus groups comprised (a) 3 patient groups (n = 20, 50% female, including 2 younger; mean age = 11.4 ± 1.5 years) and 1 older group (mean age = 15.6 ± 1.3 years), (b) 3 parent groups (n = 24, 83% female), and (c) 2 multidisciplinary provider groups (n = 19). Families shared several common concerns with providers (eg, school, care delay, psychosocial, and financial) but varied on specifics. Some barriers may be addressable through family or staff education, improved communication (eg, care delay/ access, transition), or training (eg, labs and diet), while others may require change at an institutional or policy level (eg, insurance). Conclusions This qualitative analysis identified several barriers to IBD care, some shared, some unique to patients, parents, and providers, highlighting the importance of obtaining multiple stakeholder perspectives when exploring barriers to care.
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Affiliation(s)
- Jennifer L. Dotson
- From the Division of Pediatric Gastroenterology, Hepatology and Nutrition, Nationwide Children’s Hospital, Columbus, OH
- The Center for Child Health Equity and Outcomes Research, The Research Institute, Nationwide Children’s Hospital, Columbus, OH
| | - Josh Bricker
- The Center for Child Health Equity and Outcomes Research, The Research Institute, Nationwide Children’s Hospital, Columbus, OH
| | - Deena J. Chisolm
- The Center for Child Health Equity and Outcomes Research, The Research Institute, Nationwide Children’s Hospital, Columbus, OH
| | - Laura M. Mackner
- The Center for Biobehavioral Health, The Research Institute, Nationwide Children’s Hospital, Columbus, OH
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Ahola Kohut S, Keefer L. Building a Self-Management Toolkit for Patients with Pediatric Inflammatory Bowel Disease: Introducing the resilience 5. Gastroenterol Clin North Am 2023; 52:599-608. [PMID: 37543403 DOI: 10.1016/j.gtc.2023.05.005] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 08/07/2023]
Abstract
Transition from pediatric to adult health care is a complex process that calls for complex interventions and collaboration between health care teams and families. However, many inflammatory bowel disease (IBD) clinical care teams do not have the resources to implement rigorous transition programs for youth. This review provides a description of the Resilience5: self-efficacy, disease acceptance, self-regulation, optimism, and social support. The Resilience5 represents teachable skills to support IBD self-management, offset disease interfering behaviors, and build resilience in adolescents and young adults transitioning to adult health care systems. These skills can also be encouraged and reinforced during routine IBD clinical care.
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Affiliation(s)
- Sara Ahola Kohut
- Department of Gastroenterology, Hepatology, and Nutrition, Hospital for Sick Children, 555 University Avenue, Toronto, Onatrio, Canada.
| | - Laurie Keefer
- Icahn School of Medicine at Mount Sinai, 1 Gustave L. Levy Place, New York, NY, USA
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El-Matary W, Carroll MW, Deslandres C, Griffiths AM, Kuenzig ME, Mack DR, Wine E, Weinstein J, Geist R, Davis T, Chan J, Khan R, Matthews P, Kaplan GG, Windsor JW, Bernstein CN, Bitton A, Coward S, Jones JL, Lee K, Murthy SK, Targownik LE, Peña-Sánchez JN, Rohatinsky N, Ghandeharian S, Im JHB, Goddard Q, Gorospe J, Verdugo J, Morin SA, Morganstein T, Banning L, Benchimol EI. The 2023 Impact of Inflammatory Bowel Disease in Canada: Special Populations-Children and Adolescents with IBD. J Can Assoc Gastroenterol 2023; 6:S35-S44. [PMID: 37674497 PMCID: PMC10478811 DOI: 10.1093/jcag/gwad016] [Citation(s) in RCA: 6] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 09/08/2023] Open
Abstract
Rates of inflammatory bowel disease (IBD) in Canadian children and adolescents are among the highest in the world, and the incidence is rising most rapidly in children under five years of age. These young children may have either a typical form of IBD with multi-factorial aetiology, or they may have a monogenic form. Despite the growing number of children in Canada living with this important chronic disease, there are few available medical therapies approved by Health Canada due to the omission of children from most clinical trials of newly developed biologics. As a result, off-label use of medications is common, and physicians have learned to use existing therapies more effectively. In addition, most Canadian children are treated in multidisciplinary, specialty clinics by physicians with extra training or experience in IBD, as well as specialist nurses, dietitians, mental health care providers and other allied health professionals. This specialized clinic approach has facilitated cutting edge research, led by Canadian clinicians and scientists, to understand the causes of IBD, the optimal use of therapies, and the best ways to treat children from a biopsychosocial perspective. Canadians are engaged in work to understand the monogenic causes of IBD; the interaction between genes, the environment, and the microbiome; and how to address the mental health concerns and medical needs of adolescents and young adults transitioning from paediatric to adult care.
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Affiliation(s)
- Wael El-Matary
- Department of Pediatrics and Child Health, Max Rady College of Medicine, University of Manitoba, Winnipeg, Manitoba, Canada
| | - Matthew W Carroll
- Division of Pediatric Gastroenterology and Nutrition, University of Alberta, Edmonton, Alberta, Canada
| | - Colette Deslandres
- Department of Pediatrics, Division of Gastroenterology, Hepatology, and Nutrition, Centre Hospitalier Universitaire Sainte-Justine, Université de Montréal, Montréal, Québec, Canada
| | - Anne M Griffiths
- SickKids Inflammatory Bowel Disease Centre, Division of Gastroenterology, Hepatology, and Nutrition, The Hospital for Sick Children, Toronto, Ontario, Canada
- Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Ontario, Canada
- Department of Paediatrics, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
| | - M Ellen Kuenzig
- SickKids Inflammatory Bowel Disease Centre, Division of Gastroenterology, Hepatology, and Nutrition, The Hospital for Sick Children, Toronto, Ontario, Canada
- Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Ontario, Canada
| | - David R Mack
- CHEO IBD Centre and Department of Pediatrics, University of Ottawa, Ottawa, Canada
| | - Eytan Wine
- Departments of Pediatrics and Physiology, University of Alberta, Edmonton, Alberta, Canada
- Edmonton Pediatric IBD Clinic, Edmonton, Alberta, Canada
| | - Jake Weinstein
- SickKids Inflammatory Bowel Disease Centre, Division of Gastroenterology, Hepatology, and Nutrition, The Hospital for Sick Children, Toronto, Ontario, Canada
- Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Ontario, Canada
| | - Rose Geist
- Department of Psychiatry, The Hospital for Sick Children, University of Toronto, Toronto, Canada
| | - Tal Davis
- SickKids Inflammatory Bowel Disease Centre, Division of Gastroenterology, Hepatology, and Nutrition, The Hospital for Sick Children, Toronto, Ontario, Canada
- Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Ontario, Canada
| | - Justin Chan
- Department of Pediatrics, Division of Gastroenterology, Hepatology, and Nutrition, British Columbia Children Hospital Research Institute, Vancouver, British Columbia, Canada
| | - Rabia Khan
- SickKids Inflammatory Bowel Disease Centre, Division of Gastroenterology, Hepatology, and Nutrition, The Hospital for Sick Children, Toronto, Ontario, Canada
- Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Ontario, Canada
- ICES, Toronto, Ontario, Canada
| | | | - Gilaad G Kaplan
- Departments of Medicine and Community Health Sciences, University of Calgary, Calgary, Alberta, Canada
| | - Joseph W Windsor
- Departments of Medicine and Community Health Sciences, University of Calgary, Calgary, Alberta, Canada
| | - Charles N Bernstein
- Department of Internal Medicine, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada
- University of Manitoba IBD Clinical and Research Centre, Winnipeg, Manitoba, Canada
| | - Alain Bitton
- Division of Gastroenterology and Hepatology, McGill University Health Centre, IBD Centre, McGill University, Montréal, Quebec, Canada
| | - Stephanie Coward
- Departments of Medicine and Community Health Sciences, University of Calgary, Calgary, Alberta, Canada
| | - Jennifer L Jones
- Departments of Medicine, Clinical Health, and Epidemiology, Dalhousie University, Halifax, Nova Scotia, Canada
| | - Kate Lee
- Crohn’s and Colitis Canada, Toronto, Ontario, Canada
| | - Sanjay K Murthy
- Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada
- The Ottawa Hospital IBD Centre, Ottawa, Ontario, Canada
| | - Laura E Targownik
- Division of Gastroenterology and Hepatology, Mount Sinai Hospital, Toronto, Ontario, Canada
| | - Juan-Nicolás Peña-Sánchez
- Department of Community Health and Epidemiology, University of Saskatchewan, Saskatoon, Saskatchewan, Canada
| | - Noelle Rohatinsky
- College of Nursing, University of Saskatchewan, Saskatoon, Saskatchewan, Canada
| | | | - James H B Im
- SickKids Inflammatory Bowel Disease Centre, Division of Gastroenterology, Hepatology, and Nutrition, The Hospital for Sick Children, Toronto, Ontario, Canada
- Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Ontario, Canada
| | - Quinn Goddard
- Departments of Medicine and Community Health Sciences, University of Calgary, Calgary, Alberta, Canada
| | - Julia Gorospe
- Departments of Medicine and Community Health Sciences, University of Calgary, Calgary, Alberta, Canada
| | - Jules Verdugo
- Crohn’s and Colitis Canada, Toronto, Ontario, Canada
| | - Samantha A Morin
- Department of Medical Sciences, McMaster University, Hamilton, Ontario, Canada
| | - Taylor Morganstein
- Faculty of Medicine and Health Sciences, McGill University, Montreal, Quebec, Canada
| | - Lisa Banning
- Crohn’s and Colitis Canada, Toronto, Ontario, Canada
| | - Eric I Benchimol
- SickKids Inflammatory Bowel Disease Centre, Division of Gastroenterology, Hepatology, and Nutrition, The Hospital for Sick Children, Toronto, Ontario, Canada
- Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Ontario, Canada
- Department of Paediatrics, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
- ICES, Toronto, Ontario, Canada
- Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada
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Kikuchi R, Sato I, Hirata Y, Sugiyama M, Iwasaki M, Sekiguchi H, Sato A, Suzuki S, Morisaki-Nakamura M, Kita S, Oka A, Kamibeppu K, Ikeda M, Kato M. Fact-finding survey of doctors at the departments of pediatrics and pediatric surgery on the transition of patients with childhood-onset chronic disease from pediatric to adult healthcare. PLoS One 2023; 18:e0289927. [PMID: 37561779 PMCID: PMC10414620 DOI: 10.1371/journal.pone.0289927] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/11/2021] [Accepted: 07/29/2023] [Indexed: 08/12/2023] Open
Abstract
BACKGROUND The number of adult patients with childhood-onset chronic diseases is increasing. However, the process of transitioning these patients from child- to adult-centered medical services faces many difficulties. Despite the key role that doctors in the pediatric field are considered to play in transition, few fact-finding surveys about transition have been conducted among these doctors. OBJECTIVE The aim of this study was to demonstrate the current status and challenges in the transition of patients with childhood-onset chronic diseases by a fact-finding survey of pediatricians and pediatric surgeons at a university hospital. METHODS A cross-sectional survey was performed using an anonymous self-administered questionnaire. Seventy-six doctors of pediatrics and pediatric surgery (excluding junior residents) in a university hospital were asked to answer an anonymous self-report questionnaire. A multidisciplinary research team selected items related to the transitional process. RESULTS Sixty (79%) doctors participated, of whom 52 (87%) showed awareness of transition. No doctor answered that "Transition is conducted smoothly." Doctors with shorter pediatric department experience had lower awareness and poorer experience with transition. In contrast to pediatric surgeons, pediatricians explained "job-seeking activities" and "contraceptive methods" to the patient, and reported a higher patient age at which to initiate explanation of transition to the patient and his/her family. Among factors inhibiting transition, 39 (65%) respondents selected "The patient's family members do not desire transition" and 34 (57%) selected "Although a relevant adult healthcare department is available, it will not accept the patient." The medical providers most frequently considered to have responsibility for playing a central role in the transition process were "pediatrician/pediatric surgeon," "medical social worker," and "regional medical liaison office." DISCUSSION To promote transition, pediatric and adult healthcare departments should share concerns about and cooperate in the establishment of more effective methods of transition, and provide multidisciplinary collaboration to support patients and their families.
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Affiliation(s)
- Ryota Kikuchi
- Division of Health Sciences and Nursing, Department of Family Nursing, Graduate School of Medicine, The University of Tokyo, Bunkyo-ku, Tokyo, Japan
| | - Iori Sato
- Division of Health Sciences and Nursing, Department of Family Nursing, Graduate School of Medicine, The University of Tokyo, Bunkyo-ku, Tokyo, Japan
| | - Yoichiro Hirata
- Department of Pediatrics, The University of Tokyo Hospital, Bunkyo-ku, Tokyo, Japan
| | - Masahiko Sugiyama
- Department of Pediatric Surgery, The University of Tokyo Hospital, Bunkyo-ku, Tokyo, Japan
| | - Miwa Iwasaki
- Division of Nursing, The University of Tokyo Hospital, Bunkyo-ku, Tokyo, Japan
| | - Hiromi Sekiguchi
- Division of Nursing, The University of Tokyo Hospital, Bunkyo-ku, Tokyo, Japan
| | - Atsushi Sato
- Department of Pediatrics, The University of Tokyo Hospital, Bunkyo-ku, Tokyo, Japan
| | - Seigo Suzuki
- Division of Health Sciences and Nursing, Department of Family Nursing, Graduate School of Medicine, The University of Tokyo, Bunkyo-ku, Tokyo, Japan
| | - Mayumi Morisaki-Nakamura
- Division of Health Sciences and Nursing, Department of Family Nursing, Graduate School of Medicine, The University of Tokyo, Bunkyo-ku, Tokyo, Japan
| | - Sachiko Kita
- Division of Health Sciences and Nursing, Department of Family Nursing, Graduate School of Medicine, The University of Tokyo, Bunkyo-ku, Tokyo, Japan
| | - Akira Oka
- Department of Pediatrics, The University of Tokyo Hospital, Bunkyo-ku, Tokyo, Japan
| | - Kiyoko Kamibeppu
- Division of Health Sciences and Nursing, Department of Family Nursing, Graduate School of Medicine, The University of Tokyo, Bunkyo-ku, Tokyo, Japan
| | - Mari Ikeda
- Division of Health Sciences and Nursing, Department of Family Nursing, Graduate School of Medicine, The University of Tokyo, Bunkyo-ku, Tokyo, Japan
| | - Motohiro Kato
- Department of Pediatrics, The University of Tokyo Hospital, Bunkyo-ku, Tokyo, Japan
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10
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Hussain FS, Setya A, Molina I, Chaudhry NA, Chi X, Gurka MJ, Filipp SL, Pham A, Kerman D, Abreu MT, Zimmermann EM. Healthcare Utilization Patterns and Excessive Steroid Use in Late Adolescence Age and Young Adults With Crohn's Disease and Ulcerative Colitis. GASTRO HEP ADVANCES 2023; 2:928-934. [PMID: 39130756 PMCID: PMC11308840 DOI: 10.1016/j.gastha.2023.06.009] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Subscribe] [Scholar Register] [Received: 05/22/2023] [Accepted: 06/26/2023] [Indexed: 08/13/2024]
Abstract
Background and Aims Late adolescents and young adults (AYA) with inflammatory bowel disease (IBD) are a vulnerable population as they transition to adult healthcare. We aim to provide a real-world data on their healthcare utilization patterns and medication use through a large database. Methods We performed a retrospective cohort study from January 1, 2012, to June 30, 2020, using OneFlorida Data-Trust, an electronic health record-based data repository representing over half of the Florida population. Outcomes of interest included demographics, healthcare utilization, medications, and disease severity. Chi-square tests and logistic regression were used to compare the rates of medication use, healthcare utilization, and disease severity by age groups. Results The number of patients who met our inclusion criteria was 10,578 with 2731 (25.8%) in the 17-25-year-old group. AYA patients had fewer ambulatory visits vs children (90% vs 95%; P value <.05). AYA patients were admitted more frequently from emergency facilities vs children (22.3% vs 10.9%; P value <.05). AYA patients received steroids more often than adults and younger patients (48.9% vs 45.3 vs 44.3% P value <.05, respectively). AYA patients received more narcotic (41.1% vs 22.3 % P value <.05) and antidepressant prescriptions (15.9% vs 9.5%; P value <.05) compared with children. With advancing age, a decrease in biologic use was noted (51% vs 40% vs 25.4% P value <.05, respectively). Conclusion AYA patients with IBD have higher rates of hospital admissions from emergency department, fewer ambulatory health visits and they receive more steroids compared to children. Our study demonstrates the need for age-specific IBD programs for AYA patients.
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Affiliation(s)
- Fatima S. Hussain
- Department of Pediatrics, University of Florida, Gainesville, Florida
| | - Aniruddh Setya
- Department of Pediatrics, University of Florida, Gainesville, Florida
| | - Isaac Molina
- Department of Medicine, University of Florida, Gainesville, Florida
| | | | - Xiaofei Chi
- Department of Health Outcomes & Biomedical Informatics, University of Florida, Gainesville, Florida
| | - Matthew J. Gurka
- Department of Health Outcomes & Biomedical Informatics, University of Florida, Gainesville, Florida
| | - Stephanie L. Filipp
- Department of Health Outcomes & Biomedical Informatics, University of Florida, Gainesville, Florida
| | - Angela Pham
- Department of Medicine, University of Florida, Gainesville Florida
| | - David Kerman
- Department of Medicine, University of Miami, Miami, Florida
| | - Maria T. Abreu
- Department of Medicine, University of Miami, Miami, Florida
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11
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Bokova E, Svetanoff WJ, Levitt MA, Rentea RM. Pediatric Bowel Management Options and Organizational Aspects. CHILDREN 2023; 10:children10040633. [PMID: 37189882 DOI: 10.3390/children10040633] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Subscribe] [Scholar Register] [Received: 03/07/2023] [Revised: 03/20/2023] [Accepted: 03/22/2023] [Indexed: 03/30/2023]
Abstract
A bowel management program (BMP) to treat fecal incontinence and severe constipation is utilized for patients with anorectal malformations, Hirschsprung disease, spinal anomalies, and functional constipation, decreasing the rate of emergency department visits, and hospital admissions. This review is part of a manuscript series and focuses on updates in the use of antegrade flushes for bowel management, as well as organizational aspects, collaborative approach, telemedicine, the importance of family education, and one-year outcomes of the bowel management program. Implementation of a multidisciplinary program involving physicians, nurses, advanced practice providers, coordinators, psychologists, and social workers leads to rapid center growth and enhances surgical referrals. Education of the families is crucial for postoperative outcomes, prevention, and early detection of complications, especially Hirschsprung-associated enterocolitis. Telemedicine can be proposed to patients with a defined anatomy and is associated with high parent satisfaction and decreased patient stress in comparison to in-person visits. The BMP has proved to be effective in all groups of colorectal patients at a 1- and 2-year follow-up with social continence achieved in 70–72% and 78% of patients, respectively, and an improvement in the patients’ quality of life. A transitional care to adult program is essential to maintain the same quality of care, and continuity of care and to achieve desired long-term outcomes as the patient reaches adult age.
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12
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Bihari A, Olayinka L, Kroeker KI. Outcomes in Patients with Inflammatory Bowel Disease Transitioning from Pediatric to Adult Care: A Scoping Review. J Pediatr Gastroenterol Nutr 2022; 75:423-430. [PMID: 35920854 PMCID: PMC9470050 DOI: 10.1097/mpg.0000000000003581] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/03/2021] [Accepted: 07/08/2022] [Indexed: 12/10/2022]
Abstract
PURPOSE Approximately 25% of inflammatory bowel disease (IBD) patients are diagnosed in childhood and the incidence is increasing. Thus, more patients will transition to adult care in the future. Within the literature, transition readiness has been deemed important to achieving a successful transition; however, it is unclear what outcomes define success. This scoping review aims to summarize the literature on outcomes surrounding transition from pediatric to adult care in patients with IBD. METHODS A scoping review was conducted with the following steps: (1) identifying the research question, (2) identifying relevant studies, (3) study selection, (4) charting the data, (5) collating, summarizing, and reporting results, and (6) consultation with an additional researcher. Studies were identified from 5 databases and were included in part if (1) IBD was a disease of interest, (2) referred to transition as the movement and adjustment from pediatric to adult care, and (3) evaluated patient outcomes up to 5 years after first adult appointment and/or defined a successful or unsuccessful transition. RESULTS Twenty-six peer-reviewed studies were included. Four studies defined transition success, while 2 studies defined an unsuccessful transition. Transition outcomes were categorized into these 6 themes: being comfortable in adult care (n = 4); health care utilization (n = 19); disease management (n = 15); knowledge (n = 5); quality of life (n = 6); self-efficacy (n = 7). CONCLUSIONS Most studies evaluated transition outcomes by themes of health care utilization (n = 19) and disease management (n = 15). Future research should focus on engaging patients along with providers in order to create a consensus on indicators of transition success.
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Affiliation(s)
- Allison Bihari
- From the Division of Gastroenterology, Department of Medicine, University of Alberta, Edmonton, AB, Canada
| | - Lily Olayinka
- From the Division of Gastroenterology, Department of Medicine, University of Alberta, Edmonton, AB, Canada
| | - Karen I. Kroeker
- From the Division of Gastroenterology, Department of Medicine, University of Alberta, Edmonton, AB, Canada
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13
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Bollegala N, Barwick M, Fu N, Griffiths AM, Keefer L, Kohut SA, Kroeker KI, Lawrence S, Lee K, Mack DR, Walters TD, de Guzman J, Tersigni C, Miatello A, Benchimol EI. Multimodal intervention to improve the transition of patients with inflammatory bowel disease from pediatric to adult care: protocol for a randomized controlled trial. BMC Gastroenterol 2022; 22:251. [PMID: 35585484 PMCID: PMC9118697 DOI: 10.1186/s12876-022-02307-9] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/04/2022] [Accepted: 04/28/2022] [Indexed: 11/10/2022] Open
Abstract
BACKGROUND Transition in care is defined as the "purposeful and planned movement of adolescents and young adults with a chronic medical condition from pediatric to adult-oriented healthcare systems/care providers." Currently, there are no Level 1 evidence-based interventions to improve the care of transitioning adolescents and young adults (AYAs) with inflammatory bowel disease (IBD). The development of a transition program using a biopsychosocial approach will improve the standards for healthcare delivery to transitioning IBD patients. This is a protocol for a structured randomized controlled trial (RCT) to assess the clinical and implementation effectiveness of a multimodal intervention focused on improving patient function, transition readiness and outcomes among AYA patients with IBD being cared for at pediatric centers in Canada. METHODS This multi-center RCT is a type 1 hybrid effectiveness-implementation trial to evaluate effectiveness of the intervention and how it can be implemented more widely after the trial. We will include patients aged 16.0-17.5 years. The intervention program consists of 4 core components: (1) individualized assessment, (2) transition navigator, (3) virtual patient skills-building with a focus on building resilience, self-management and self-efficacy, and (4) a virtual structured education program. The control group will undergo standard-of-care defined by each participating center. The primary outcome will be the IBD Disability Index, a validated measure to assess patient functioning. Secondary outcomes include transition readiness and success, anxiety and depression scales, and health service utilization rates. Additionally, we will measure implementation outcomes and related barriers and facilitators for the intervention program. DISCUSSION The type 1 hybrid effectiveness-implementation design will allow for the development of a feasible, sustainable, and acceptable final intervention model. The intervention will consist of modules that can be accessed in an online, virtual platform. The implementation will allow centralization of interventions and funding in order to minimize the impact on local clinical practice or hospital resources. The authors anticipate that the main study limitation will relate to study subjects not completely adhering to every component of the intervention, which will be evaluated and addressed using the implementation science approach. TRIAL REGISTRATION NCT05221281. Registry: ClinicalTrials.gov. Date of registration: February 2, 2022. https://clinicaltrials.gov/ct2/show/NCT05221281 .
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Affiliation(s)
- Natasha Bollegala
- Division of Gastroenterology, Department of Medicine, Women's College Hospital, University of Toronto, Toronto, Canada
| | - Melanie Barwick
- Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada.,Department of Psychiatry, University of Toronto, Dalla Lana School of Public Health, University of Toronto, Toronto, Canada
| | - Nancy Fu
- Division of Gastroenterology, Department of Medicine, University of British Columbia, Vancouver, Canada
| | - Anne M Griffiths
- Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada.,SickKids Inflammatory Bowel Disease Centre, Division of Gastroenterology, Hepatology and Nutrition, The Hospital for Sick Children, 555 University Avenue, Toronto, ON, M5G 1X8, Canada.,Department of Paediatrics and Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada
| | - Laurie Keefer
- Division of Gastroenterology, Icahn School of Medicine at Mount Sinai, New York, NY, USA
| | - Sara Ahola Kohut
- Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada.,SickKids Inflammatory Bowel Disease Centre, Division of Gastroenterology, Hepatology and Nutrition, The Hospital for Sick Children, 555 University Avenue, Toronto, ON, M5G 1X8, Canada
| | - Karen I Kroeker
- Division of Gastroenterology, Department of Medicine, University of Alberta, Edmonton, Canada
| | - Sally Lawrence
- Division of Gastroenterology, Hepatology and Nutrition, BC Children's Hospital, University of British Columbia, Vancouver, Canada
| | - Kate Lee
- Crohn's and Colitis Canada, Toronto, Canada
| | - David R Mack
- CHEO Inflammatory Bowel Disease Centre, Division of Gastroenterology, Hepatology and Nutrition, Children's Hospital of Eastern Ontario (CHEO), Ottawa, Canada.,Department of Pediatrics, University of Ottawa, Ottawa, Canada
| | - Thomas D Walters
- Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada.,SickKids Inflammatory Bowel Disease Centre, Division of Gastroenterology, Hepatology and Nutrition, The Hospital for Sick Children, 555 University Avenue, Toronto, ON, M5G 1X8, Canada.,Department of Paediatrics and Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada
| | | | - Claudia Tersigni
- Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada.,SickKids Inflammatory Bowel Disease Centre, Division of Gastroenterology, Hepatology and Nutrition, The Hospital for Sick Children, 555 University Avenue, Toronto, ON, M5G 1X8, Canada
| | - Ashleigh Miatello
- Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada
| | - Eric I Benchimol
- Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada. .,SickKids Inflammatory Bowel Disease Centre, Division of Gastroenterology, Hepatology and Nutrition, The Hospital for Sick Children, 555 University Avenue, Toronto, ON, M5G 1X8, Canada. .,Department of Paediatrics and Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada. .,ICES, Toronto, Canada.
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14
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Abstract
OBJECTIVES Adolescents and young adults (AYAs) are at risk for disease exacerbations and increased health care utilization around the time of transition to adult care. Our aim was to identify risk factors predictive of a suboptimal transition for AYA with inflammatory bowel disease. MATERIALS AND METHODS We performed a retrospective chart review of patients with pediatric inflammatory bowel disease transferred to adult care from our institution in 2016 and 2017, recording demographic, psychosocial, and disease-specific data. Post-transfer data were obtained via the health care information exchange from the adult provider within our electronic medical record. We defined suboptimal transition as either a return to pediatric care or requiring care escalation within 1 year of transfer. RESULTS Out of 104 subjects 37 (36%) were found to have had a suboptimal transition. Our models suggest that a suboptimal transition is associated with several risk factors including any mental health diagnosis (odds ratio [OR] = 4.15; 95% confidence interval [95% CI]: 1.18-14.59), history of medication nonadherence (OR = 5.15 [95% CI: 1.52-17.42]), public insurance (OR = 6.60 [95% CI: 1.25-34.96]), higher Physician Global Assessment score at time of transition (OR = 6.64 [95% CI: 1.60-27.58], and short Pediatric Crohn Disease Activity Index scores (OR = 1.17 [95% CI: 1.03-1.33]). Higher hemoglobin levels at transition were protective (OR = 0.69 [95% CI: 0.48-0.98]). Age at time of transition, disease duration, and medication type at transition were not found to be associated with transition outcomes. CONCLUSION AYA with public insurance, a mental health history, medication nonadherence, and evidence of active disease may be at greater risk for suboptimal and poor health outcomes at transition.
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15
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Bert F, Camussi E, Gili R, Corsi D, Rossello P, Scarmozzino A, Siliquini R. Transitional care: A new model of care from young age to adulthood. Health Policy 2020; 124:1121-1128. [DOI: 10.1016/j.healthpol.2020.08.002] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/19/2019] [Revised: 08/04/2020] [Accepted: 08/07/2020] [Indexed: 11/26/2022]
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Sánchez Sánchez C, Tolín Hernani MDM, Álvarez Calatayud G, Miranda Cid MDC, Navas López VM, Marín Jiménez I, Menchen LA, García Fernández P, Merino Sánchez-Cañete A. Status of transition care in inflammatory bowel disease in Spain. Different medical perspectives. REVISTA ESPANOLA DE ENFERMEDADES DIGESTIVAS 2020; 111:833-838. [PMID: 31566409 DOI: 10.17235/reed.2019.6310/2019] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 11/20/2022]
Abstract
INTRODUCTION transition is important for a successful follow-up of adolescents with inflammatory bowel disease (IBD). The objectives of the study were to establish the situation of transition in Spain and to identify needs, requirements and barriers to transition from pediatric and adult gastroenterologist perspectives. METHODS a structured survey for self-completion using the REDCap platform was distributed via the Spanish Society for Pediatric Gastroenterology, Hepatology and Nutrition (SEGHNP) and the Spanish Working Group on Crohn's Disease and Ulcerative Colitis (GETECCU). The questionnaire contained closed and ranked questions concerning transition, perceived needs, organizational, clinician and patient related barriers to transition. RESULTS one hundred and forty surveys were answered, 53% in pediatrics (PG) and 47% from adult gastroenterologists (AG) among 90 hospitals; 66% of them were reference centers. There was a higher response from pediatricians (18.2%) versus adult gastroenterologists (8.3%) (p = 0.03). A structured transition program is adequate in 42.2% centers. A well-structured transition was perceived as very important by 79.5% of PG and 63% of AG (p = 0.03). A higher proportion of both groups identified inadequacies in the preparation of adolescents for transfer (43% and 38%, p = ns). The main deficit areas were the lack of knowledge about disease and treatment as well as the lack of self-advocacy and care coordination. Lack of resources, time and critical mass of patients were the highest ranked barriers by both groups. AG and PG (54% and 55%) highlighted suboptimal training in adolescent medicine. CONCLUSIONS in Spain, nearly half of the centers have developed a structured transition program. Lack of training, time and insufficient resources are the main barriers for a successful transition.
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Affiliation(s)
| | | | | | | | - Víctor M Navas López
- Gastroenterología,Hepatología y Nutrición Infantil, Hospital Regional Universitario de Málaga, España
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17
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Nardone OM, Iacucci M, Ghosh S, Castiglione F. Can a transition clinic bridge the gap between paediatric and adult inflammatory bowel disease care models? Dig Liver Dis 2020; 52:516-527. [PMID: 32234418 DOI: 10.1016/j.dld.2020.02.009] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/24/2019] [Revised: 02/19/2020] [Accepted: 02/24/2020] [Indexed: 02/06/2023]
Abstract
Transition care in inflammatory bowel disease is increasingly recognized as challenging given the inherent differences between paediatric and adult health care models, disease characteristics and treatment strategies. Transition is a dynamic process involving adolescents and young adults that are moving from a paediatric to an adult health care setting, and it should be flexible, continually updated and tailored to each patient. The implementation of a transition clinic is essential given the increasing incidence of the paediatric population with inflammatory bowel disease and the lifelong impact of this disease. The key question is when and how to structure transition according to the adolescent's clinical, psycho-social, educational needs and expectations to ensure continuity of care. In the attempt to improve the management of transition in inflammatory bowel disease and address the wide gap between adult and child care, we provide an update of the transition clinic and we propose a "treat to target" approach in transition to facilitate an effective and successful transition programme. In the changing landscape of the treatment of inflammatory bowel disease, further studies are necessary to determine the role of the transition clinic in determining the choice and strategy of therapy and its monitoring and the adoption of newer strategies such as biomarkers guided treating to target.
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Affiliation(s)
- Olga Maria Nardone
- Institute of Translational Medicine and Institute of Immunology and Immunotherapy, University of Birmingham, UK; Gastroenterology, Department of Clinical Medicine and Surgery University Federico II of Naples, Italy.
| | - Marietta Iacucci
- Institute of Translational Medicine and Institute of Immunology and Immunotherapy, University of Birmingham, UK; University Hospitals Birmingham NHS Foundation Trust, Queen Elizabeth Hospital Birmingham, UK; NIHR Biomedical Research Centre, University of Birmingham and University Hospitals NHS Foundation Trust Birmingham, UK; Gastroenterology, University of Calgary, Calgary, Canada
| | - Subrata Ghosh
- Institute of Translational Medicine and Institute of Immunology and Immunotherapy, University of Birmingham, UK; University Hospitals Birmingham NHS Foundation Trust, Queen Elizabeth Hospital Birmingham, UK; NIHR Biomedical Research Centre, University of Birmingham and University Hospitals NHS Foundation Trust Birmingham, UK; Gastroenterology, University of Calgary, Calgary, Canada
| | - Fabiana Castiglione
- Gastroenterology, Department of Clinical Medicine and Surgery University Federico II of Naples, Italy
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Abstract
The growing need for transitional care is quickly becoming apparent in the medical community because children with chronic illnesses are surviving into adulthood. Transitional care is the coordinated movement of young adults with chronic conditions from the pediatric to adult health care setting. This transition period is associated with poorer health outcomes due to differences in pediatric and adult health care models, reluctance to change providers, and transfer of disease ownership. These factors must be considered in inflammatory bowel disease (IBD), in which 25% of patients are diagnosed before adulthood and there is an increasing incidence in the pediatric population. Additionally, those with childhood IBD tend to have more severe disease, making structured transition programs imperative to ensure continuity of care and promote self-advocacy. Recommended models for transition have been based on descriptive data rather than on prospective or randomized studies, but the recent IBD literature supports a need for transitional care. Regardless, a great deal of variability in clinical practice remains because there is no agreed upon optimal transition model. This review addresses the status of transitional care in IBD and provides helpful resources to assess patient readiness for transition and to assist in the care of the young transitioning adult.
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19
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Impact of Paediatric Versus Adult Care Setting on Health Care Utilization in Adolescents With Inflammatory Bowel Disease. J Pediatr Gastroenterol Nutr 2019; 69:310-316. [PMID: 31124888 DOI: 10.1097/mpg.0000000000002399] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/07/2023]
Abstract
OBJECTIVE Paediatric-onset inflammatory bowel disease (IBD) is different from adult-onset IBD with respect to disease severity and its effect on growth and development. Care of paediatric IBD patients in some countries is dispersed among paediatricians and adult care providers, which may result in different outcomes. This study aims to assess the effect of care setting (paediatric vs adult-oriented) on health care utilization in adolescent IBD patients. METHODS This is a Dutch population-based cohort study based on an insurance claims database covering 4.2 million insurees (approximately 25% of the Dutch population). We identified IBD patients ages 16 to 18 years and followed them until the age of 19 years or transfer to adult care, whichever came first. We categorized patients according to care setting: paediatric versus adult-oriented. We defined outcomes as corticosteroid use, IBD-related hospital admission, IBD-related surgery, and biological use. We estimated Cox proportional hazards regression models to control for confounding by indication. RESULTS Among 626 patients, 380 (61%) were in paediatric and 246 (39%) in adult-oriented care. In paediatric care, patients were less likely to be treated with corticosteroids (hazard ratio [HR] 0.72, 95% confidence interval [CI] 0.52-0.99) or biologicals (HR 0.57, 95% CI 0.34-0.97), and had fewer IBD-related hospital admissions (HR 0.58, 95% CI 0.37-0.92). CONCLUSION In a large and representative community cohort of adolescents with IBD, treatment in paediatric care setting was associated with significantly lower steroid and biological use, without increase in hospital admissions. These results might be used to optimize clinical care for adolescents with IBD.
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Jawaid N, Jeyalingam T, Nguyen G, Bollegala N. Paediatric to Adult Transition of Care in IBD: Understanding the Current Standard of Care Among Canadian Adult Academic Gastroenterologists. J Can Assoc Gastroenterol 2019; 3:266-273. [PMID: 33241179 PMCID: PMC7678734 DOI: 10.1093/jcag/gwz023] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/18/2018] [Accepted: 06/26/2019] [Indexed: 11/14/2022] Open
Abstract
Abstract
Background
The optimal form of health care delivery for paediatric to adult inflammatory bowel disease transition of care is unknown. The primary purpose of this study was to establish current standard of care across Canada among adult gastroenterologists.
Methods
Adult gastroenterologists interested in transition care were identified. Twenty-five anonymous surveys and 17 semistructured interviews representing 9 adult gastroenterology centers across 6 provinces were completed. Questions focused on the transition process, referral practices, information transfer and access to multidisciplinary resources. The need for expert guidance and transition-related quality indicators were identified. The interviews were audio-recorded, transcribed and coded in duplicate for qualitative thematic analysis.
Results
Transition practices included the following: transition clinic (n = 4) versus direct transfer (n = 5). Most transition patients were referred to academic centers. Transfer volume per center ranged from 12 to 100 per year. Transfer of information was optimized with shared electronic medical record and comprehensive referral package. The majority of the programs lacked consistent access to a multidisciplinary team. The strongest attributes related to health care provider interest in transition and complete information transfer. Areas for improvement included increased resource allocation: financial, logistical and personnel. All agreed that a consensus-based guidfmeline for adult phase of transition would be beneficial. Potential quality indicators included adherence to care, depression/anxiety scores and patient knowledge.
Conclusions
This Canadian study of adult gastroenterologists revealed that while practice patterns vary, most agree that a transition clinic with access to multidisciplinary resources would be beneficial. A consensus-based guideline and quality indicators to assess performance may standardize the adult phase of transition and optimize outcomes.
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Affiliation(s)
- Noor Jawaid
- Gastroenterology Residency Training Program, Department of Medicine, University of Toronto, Toronto, Ontario, Canada
| | - Thurarshen Jeyalingam
- Division of Gastroenterology, Department of Medicine, University of Toronto, Toronto, Ontario, Canada
| | - Geoffrey Nguyen
- Division of Gastroenterology, Department of Medicine, University of Toronto, Toronto, Ontario, Canada
- Division of Gastroenterology, Department of Medicine, Mount Sinai Hospital, Toronto, Ontario, Canada
| | - Natasha Bollegala
- Division of Gastroenterology, Department of Medicine, University of Toronto, Toronto, Ontario, Canada
- Division of Gastroenterology, Department of Medicine, Women’s College Hospital, Toronto, Ontario, Canada
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Initial Development and Validation of a Transition Readiness Scale for Adolescents with Inflammatory Bowel Disease. Gastroenterol Res Pract 2019; 2019:5062105. [PMID: 31316560 PMCID: PMC6604282 DOI: 10.1155/2019/5062105] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/13/2018] [Accepted: 06/03/2019] [Indexed: 01/16/2023] Open
Abstract
Background and Aims To date, there are no validated measures in IBD to assess the level of preparedness for transition into adult health care. The purpose of this study was to develop and assess the reliability and validity of a “Transition Readiness” (TR) measure for adolescents with IBD, as well as to evaluate the level of TR synchronicity between adolescents themselves, their parents, and their pediatric gastroenterologists. Methods A self-assessment tool was created to evaluate TR. Items were reviewed for face validation by IBD experts, and an exploratory factor analysis was performed which yielded 3 distinct domains. The study cohort included adolescents aged 12-21 yrs, their parents, and their physicians in pediatric IBD centers. Correlations between patient/parent/physician TR between each of the domains and the overall TR score to age were assessed. Results 63 subjects (average age 16.6 yrs/79% Crohn's disease/44% male) participated in this study. There was a significant correlation between the scoring of adolescents and parents on all three domains. The correlation between adolescents and physicians, as well as between parents and physicians, was only consistent for self-efficacy. Self-efficacy significantly correlated with age, while the correlations between perceived knowledge and perception of medical care with age were not significant. Conclusion Validation of a novel TR measurement for adolescents with IBD demonstrated a good correlation between patients and parents. Out of the three proposed constructs, perceived self-efficacy is the most salient measure.
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Blázquez ML, Hernani MT, Calatayud GÁ, González-Pinto LC, Menchén L, Jiménez IM, García BG, Calleja AL, Sánchez CS. Transition Care Program of Adolescents With Inflammatory Bowel Disease: Perceptions From A Survey for Patients. Inflamm Bowel Dis 2019; 25:e22-e23. [PMID: 29873720 DOI: 10.1093/ibd/izy210] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/09/2022]
Affiliation(s)
- María López Blázquez
- Pediatric Gastroenterology Section, Hospital General Universitario Gregorio Marañón, Madrid, Spain
| | - Mar Tolín Hernani
- Pediatric Gastroenterology Section, Hospital General Universitario Gregorio Marañón, Madrid, Spain
| | | | | | - Luis Menchén
- Gastroenterology Department, Hospital General Universitario Gregorio Marañón, Madrid, Spain.,Medicine Department, Universidad Complutense de Madrid, Madrid, Spain.,Centro de Investigación Biomédica en Red, Enfermedades Hepáticas y Digestivas, CIBEREHD, Madrid
| | - Ignacio Marín Jiménez
- Gastroenterology Department, Hospital General Universitario Gregorio Marañón, Madrid, Spain
| | - Belén González García
- Pediatric Gastroenterology Section, Hospital General Universitario Gregorio Marañón, Madrid, Spain
| | - Ana López Calleja
- Gastroenterology Department, Hospital General Universitario Gregorio Marañón, Madrid, Spain
| | - César Sánchez Sánchez
- Pediatric Gastroenterology Section, Hospital General Universitario Gregorio Marañón, Madrid, Spain.,Medicine Department, Universidad Complutense de Madrid, Madrid, Spain
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23
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Rohatinsky N, Risling T, Kumaran M, Hellsten LAM, Thorp-Froslie N. Healthcare Transition in Pediatrics and Young Adults With Inflammatory Bowel Disease: A Scoping Review. Gastroenterol Nurs 2018; 41:145-158. [PMID: 29596129 DOI: 10.1097/sga.0000000000000345] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/27/2022] Open
Abstract
The incidence of inflammatory bowel disease has steadily increased in children within the last decade. As young adults transition into the adult healthcare system, lack of support can lead to disease exacerbations and disease-related complications. The purpose of this scoping review was to examine the current healthcare transition literature in pediatrics and young adults with inflammatory bowel disease, with a particular focus on assessment or screening tools to evaluate healthcare transition readiness. Five most relevant databases were searched. Of these, 22 articles met the inclusion criteria and key findings from these are summarized. The majority of articles focused on adolescents or young adults with inflammatory bowel disease and were primarily published in the United States. Since 2008, there has been a growing trend in publications of inflammatory bowel disease healthcare transition literature. Articles were often described as healthcare transition readiness assessment tools, patient outcomes following transition, or transition experiences and barriers. An understanding of the current literature on the readiness assessment and support strategies is required to promote an improved quality of life for pediatric and young adult patients living with inflammatory bowel disease.
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Affiliation(s)
- Noelle Rohatinsky
- Noelle Rohatinsky, PhD, RN, CMSN(C), is Assistant Professor, College of Nursing, University of Saskatchewan, Saskatoon, Canada. Tracie Risling, PhD, RN, is Assistant Professor, College of Nursing, University of Saskatchewan, Saskatoon, Canada. Maha Kumaran, MA, MLIS, is Librarian, Leslie & Irene Dubé Health Sciences Library, University of Saskatchewan, Saskatoon, Canada. Laurie-ann M. Hellsten, PhD, is Professor, Department of Educational Psychology and Special Education, College of Education, University of Saskatchewan, Saskatoon, Canada. Nancy Thorp-Froslie, MPH, is Registered Nursing Student, College of Nursing, University of Saskatchewan, Saskatoon, Canada
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24
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Giuliani S, Grano C, Aminoff D, Schwarzer N, Van De Vorle M, Cretolle C, Haanen M, Brisighelli G, Marzheuser S, Connor M. Transition of care in patients with anorectal malformations: Consensus by the ARM-net consortium. J Pediatr Surg 2017; 52:1866-1872. [PMID: 28688794 DOI: 10.1016/j.jpedsurg.2017.06.008] [Citation(s) in RCA: 31] [Impact Index Per Article: 3.9] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/09/2017] [Revised: 06/02/2017] [Accepted: 06/04/2017] [Indexed: 12/26/2022]
Abstract
OBJECTIVES To develop the first consensus to standardize the management of patients with Anorectal Malformations (ARMs) transitioning from childhood to adulthood. METHODS A dedicated task force of experts performed an extensive literature review and multiple meetings to define the most important aspects of transition of care. The findings were discussed with all ARM-net consortium members and a set of practical recommendations agreed upon at the annual meeting in 2016. RESULT We defined seven domains that are essential to provide an effective and practical transition process. Within each domain we have developed a set of key recommendations that are important to be considered for ARM patients entering the age of transition. CONCLUSIONS It is crucial that transition begins at an early age with regular and well-structured follow-up. Cooperation with a selected multidisciplinary team of pediatric and adult practitioners is required to prepare patients and families for effective transition to adult care and to reduce long term morbidity. TYPE OF STUDY Review/Consensus paper. LEVEL OF EVIDENCE III.
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Affiliation(s)
- Stefano Giuliani
- Department of Specialist Neonatal and Pediatric Surgery, Great Ormond Street Hospital for Children, Great Ormond Street, WC1N 3JH London, United Kingdom.
| | - Caterina Grano
- Department of Psychology, Sapienza University of Rome, Via dei Marsi, 78, 00185 Rome, Italy
| | - Dalia Aminoff
- AIMAR-Italian Patients' and Parents' Organization for Anorectal Malformation, Via Tripolitania, 211, Rome, Italy
| | - Nicole Schwarzer
- SoMA e.V.-German organization for people with ARM/HD, Korbinianplatz 17, D-80807 Munich, Germany
| | - Mariette Van De Vorle
- Department of Pediatric Surgery, Radboudumc Amalia Children's Hospital, Postbus 9101, 6500 HB, Nijmegen, The Netherlands
| | - Celia Cretolle
- National Reference Centre for Rare Diseases on Anorectal Malformations and Rare Pelvic Anomalies (MAREP), Rare Diseases National Network NeuroSphinx, Necker-Enfants Malades Hospital, APHP, René Descartes University, Paris, France
| | - Michel Haanen
- "Vereniging Anusatresie" Postbus 78, 1270 AB Huizen, The Netherlands
| | - Giulia Brisighelli
- Department of Pediatric Surgery, Fondazione IRCCS Ca' Granda-Ospedale Maggiore Policlinico, Via della Commenda 10, 20122, Milano, Italy
| | - Stefanie Marzheuser
- Department of Pediatric Surgery, Charité Uniklinik Abt., Kinderchirurgie, Augustenburger Platz, 1, Berlin, Germany
| | - Martin Connor
- Department of Surgery, Charing Cross Hospital, Imperial College Healthcare NHS Trust, Fulham Palace Road, London W6 8RF, United Kingdom
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25
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van Rheenen PF, Aloi M, Biron IA, Carlsen K, Cooney R, Cucchiara S, Cullen G, Escher JC, Kierkus J, Lindsay JO, Roma E, Russell RK, Sieczkowska-Golub J, Harbord M. European Crohn's and Colitis Organisation Topical Review on Transitional Care in Inflammatory Bowel Disease. J Crohns Colitis 2017; 11:1032-1038. [PMID: 28158494 DOI: 10.1093/ecco-jcc/jjx010] [Citation(s) in RCA: 57] [Impact Index Per Article: 7.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/23/2017] [Accepted: 01/24/2017] [Indexed: 12/12/2022]
Abstract
BACKGROUND This European Crohn's and Colitis Organisation [ECCO] topical review focuses on the transition of adolescents with inflammatory bowel disease [IBD] from child-centred to adult-oriented care. The aim was to provide evidence-supported, expert consensus for health professionals taking part in the transition. METHODS An online survey determined the areas of importance for health professionals involved in the transition of adolescents with IBD. Thereafter an expert panel of nine paediatric and five adult gastroenterologists was formed to identify the critical elements of the transition programme, and to prepare core messages defined as 'current practice points'. There is limited literature about transition, therefore this review is mainly based on expert opinion and consensus, rather than on specific evidence. RESULTS A total of 21 practice points were generated before the first [online] voting round. Practice points that reached >80% agreement were accepted, while those that did not reach 80% agreement were refined during a consensus meeting and subjected to voting. Ultimately, 14 practice points were retained by this review. CONCLUSION We present a consensus-based framework for transitional care in IBD that provides a guidance for clinical practice.
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Affiliation(s)
- Patrick F van Rheenen
- Department of Paediatric Gastroenterology, University of Groningen, University Medical Centre Groningen,Groningen, The Netherlands
| | - Marina Aloi
- Paediatric Gastroenterology and Liver Unit, Sapienza University of Rome, University Hospital Umberto I, Rome, Italy
| | - Irit Avni Biron
- Department of Gastroenterology, Rabin Medical Center - Beilinson Hospital, Petah Tikva, Israel
| | - Katrine Carlsen
- Department of Paediatrics, Hvidovre University Hospital, Hvidovre, Denmark
| | - Rachel Cooney
- Department of Gastroenterology, Queen Elizabeth Hospital,Birmingham, UK
| | - Salvatore Cucchiara
- Paediatric Gastroenterology and Liver Unit, Sapienza University of Rome, University Hospital Umberto I, Rome, Italy
| | - Garret Cullen
- Department of Gastroenterology, Centre for Colorectal Disease, St Vincent's University Hospital, Dublin, Ireland
| | - Johanna C Escher
- Department of Paediatric Gastroenterology, Erasmus University Medical Centre, Sophia Children's Hospital, Rotterdam, The Netherlands
| | - Jaroslaw Kierkus
- Department of Gastroenterology, Hepatology, Feeding Disorders and Paediatrics, Children's Memorial Health Institute, Warsaw, Poland
| | - James O Lindsay
- Department of Gastroenterology, Barts Health NHS Trust, The Royal London Hospital, London, UK
| | - Eleftheria Roma
- First Department of Paediatrics, Gastroenterology Unit, University of Athens, Athens, Greece
| | - Richard K Russell
- Department of Paediatric Gastroenterology, The Royal Hospital for Children, Glasgow, UK
| | - Joanna Sieczkowska-Golub
- Department of Gastroenterology, Hepatology, Feeding Disorders and Paediatrics, Children's Memorial Health Institute, Warsaw, Poland
| | - Marcus Harbord
- Imperial College, London; and Chelsea and Westminster Hospital, London, UK
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26
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Afzali A, Wahbeh G. Transition of pediatric to adult care in inflammatory bowel disease: Is it as easy as 1, 2, 3? World J Gastroenterol 2017; 23:3624-3631. [PMID: 28611515 PMCID: PMC5449419 DOI: 10.3748/wjg.v23.i20.3624] [Citation(s) in RCA: 29] [Impact Index Per Article: 3.6] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/24/2017] [Revised: 04/12/2017] [Accepted: 05/04/2017] [Indexed: 02/06/2023] Open
Abstract
Inflammatory bowel disease (IBD) is a heterogeneous group of chronic diseases with a rising prevalence in the pediatric population, and up to 25% of IBD patients are diagnosed before 18 years of age. Adolescents with IBD tend to have more severe and extensive disease and eventually require graduation from pediatric care toadult services. The transition of patients from pediatric to adult gastroenterologists requires careful preparation and coordination, with involvement of all key players to ensure proper collaboration of care and avoid interruption in care. This can be challenging and associated with gaps in delivery of care. The pediatric and adult health paradigms have inherent differences between health care models, as well as health care priorities in IBD. The readiness of the young adult also influences this transition of care, with often times other overlaps in life events, such as school, financial independence and moving away from home. These patients are therefore at higher risk for poorer clinical disease outcomes. The aim of this paper is to review concepts pertinent to transition of care of young adults with IBD to adult care, and provides resources appropriate for an IBD pediatric to adult transition of care model.
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27
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Sparud-Lundin C, Berghammer M, Moons P, Bratt EL. Health care providers' attitudes towards transfer and transition in young persons with long term illness- a web-based survey. BMC Health Serv Res 2017; 17:260. [PMID: 28399861 PMCID: PMC5387272 DOI: 10.1186/s12913-017-2192-5] [Citation(s) in RCA: 13] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/06/2016] [Accepted: 03/25/2017] [Indexed: 11/10/2022] Open
Abstract
Background Transition programs in health care for young persons with special health care needs aim to maximize lifelong functioning. Exploring health care professionals’ perspective may increase the possibility of successful implementation of transition programs. The aim was to survey health care professionals’ attitudes towards components and barriers on transition and transfer in young people with long-term medical conditions with special health care needs. Methods A cross-sectional web-based survey was sent by e-mail to 529 physicians and nurses in Swedish pediatric and adult outpatient clinics. Response rate was 38% (n = 201). The survey consisted of 59 questions regarding different aspects of components and barriers on transition and transfer. Descriptive statistics were computed to summarize demographic data and categorized responses. The Chi square test was used for comparison between proportions of categories. Results Most respondents agreed on the destinations of care for adolescents within their specialty. Age and psychosocial aspects such as maturity and family situations were considered the most important initiators for transfer. Joint meeting with the patient (82%); presence of a transition coordinator (76%) and a written individualized transfer plan (55%) were reported as important transition components. Pediatric care professionals found the absence of a transition coordinator to be more of a transition barrier than adult care professionals (p = 0.018) and also a more important transfer component (p = 0.017). Other barriers were lack of funding (45%) and limited clinical space (19%). Transition programs were more common in university hospitals than in regional hospitals (12% vs 2%, p = <0.001) as well as having a transition coordinator (12% vs 3%, p = 0.004). Conclusion The findings highlight a willingness to work on new transition strategies and provide direction for improvement, taking local transition components as well as potential barriers into consideration when implementing future transition programs. Some differences in attitudes towards transitional care remain among pediatric and adult care professionals.
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Affiliation(s)
- Carina Sparud-Lundin
- Institute of Health and Care Sciences, The Sahlgrenska Academy, University of Gothenburg, Box 457, SE- 405 30, Gothenburg, Sweden.
| | - Malin Berghammer
- Department of Health Science, University West, SE-461 32, Trollhättan, Sweden.,Centre for Person-Centred Care (GPCC), University of Gothenburg, Box 457, SE- 405 30, Gothenburg, Sweden
| | - Philip Moons
- Institute of Health and Care Sciences, The Sahlgrenska Academy, University of Gothenburg, Box 457, SE- 405 30, Gothenburg, Sweden.,KU Leuven Department of Public Health and Primary Care, Kapucijnenvoer 35, Box 7001, BE-3000, Leuven, Belgium
| | - Ewa-Lena Bratt
- Institute of Health and Care Sciences, The Sahlgrenska Academy, University of Gothenburg, Box 457, SE- 405 30, Gothenburg, Sweden.,Department of Pediatric Cardiology, The Queen Silvia Children's Hospital, SE-416 85, Gothenburg, Sweden
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28
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Self-managed eHealth Disease Monitoring in Children and Adolescents with Inflammatory Bowel Disease: A Randomized Controlled Trial. Inflamm Bowel Dis 2017; 23:357-365. [PMID: 28221247 DOI: 10.1097/mib.0000000000001026] [Citation(s) in RCA: 25] [Impact Index Per Article: 3.1] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/22/2022]
Abstract
BACKGROUND To evaluate the impact of eHealth on disease activity, the need for hospital contacts, and medical adherence in children and adolescents with inflammatory bowel disease (IBD). Furthermore, to assess eHealth's influence on school attendance and quality of life (QoL). METHODS Patients with IBD, 10 to 17 years attending a public university hospital, were prospectively randomized to a 2-year open label case-controlled eHealth intervention. The eHealth-group used the web-application young.constant-care.com (YCC) on a monthly basis and in case of flare-ups, and were seen at one annual preplanned outpatient visit. The control-group continued standard visits every third month. Every 3 months, both groups had blood and fecal calprotectin tested and the following were assessed: escalation in medication, disease activity, hospital contacts, medical adherence, school absence, and QoL. RESULTS Fifty-three patients in nonbiological treatment were included (27 eHealth/26 control). We found no differences between the groups regarding escalation in treatment and disease activity (symptoms, fecal calprotectin, and blood). The number of total outpatient visits (mean: eHealth 3.26, SEM 0.51; control 7.31, SEM 0.69; P < 0.0001) and IBD-related school absence (mean days: eHealth 1.6, SEM 0.5; control 16.5, SEM 4.4; P < 0.002) was significantly lower in the eHealth-group. No differences in medical adherence and QoL were found. Adherence to YCC was 81% (384 of the 475 expected entries). None of the patients or parents felt unsafe using the eHealth system. CONCLUSIONS The use of eHealth in children and adolescents with IBD is feasible, does not lead to impaired disease control, and can be managed by the patients without risk of increased disease activity.
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29
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Al-Jahdali E, Mosli M, Saadah O. A cross-sectional survey of Saudi gastroenterologists: Transition strategies for adolescents with inflammatory bowel disease. Saudi J Gastroenterol 2017; 23:233-237. [PMID: 28721977 PMCID: PMC5539677 DOI: 10.4103/sjg.sjg_77_17] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/14/2023] Open
Abstract
BACKGROUND/AIMS The transition of adolescents with inflammatory bowel disease (IBD) from pediatric to adult care requires a well-structured standardized protocol to ensure the delivery of optimal healthcare and decrease the risk of nonadherence, hospitalizations, and complications. The aims of this survey are to evaluate current IBD transition practices adopted by gastroenterology services across the Kingdom of Saudi Arabia (KSA) and to identify the major challenges standing in the way of implementing effective transition strategies from the perspectives of pediatric and adult gastroenterologists. PATIENTS AND METHODS An online survey was distributed to KSA pediatric and adult gastroenterologists through the Kingdom's national gastroenterology association. The questionnaire included closed-ended questions regarding existing institutional transition strategies and perspectives regarding the impact of different factors on their ability to effectively transition adolescents from pediatric to adult care. RESULTS A total of 80 adult and pediatric gastroenterologists responded to the survey invitation. Most of the participating gastroenterologists worked at a tertiary care center (82.5%). The majority of gastroenterologist (73.8%) reported that they do not follow a defined protocol for transitioning in their current practices. However, a structured transition program was noted to be "very important" by 78.8% of gastroenterologists. The most favored method of transitioning was joint outpatient clinic attended by patient, caregiver, pediatric gastroenterologist, and adult gastroenterologist (35.9%) and the most commonly reported barrier to transitioning was "lack of proper preparation" for transitioning (53.2%). CONCLUSIONS Although acknowledged by the majority of participants as being "very important," no standardized IBD transition protocol is followed in the majority of practices across KSA. A well-structured national protocol for transitioning adolescents with IBD is needed.
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Affiliation(s)
- Elaf Al-Jahdali
- Department of Medicine, King Abdulaziz University, Jeddah, Kingdom of Saudi Arabia
| | - Mahmoud Mosli
- Department of Medicine, King Abdulaziz University, Jeddah, Kingdom of Saudi Arabia,Address for correspondence: Dr. Mahmoud Mosli, Department of Medicine, King Abdulaziz University, Jeddah, Kingdom of Saudi Arabia. E-mail:
| | - Omar Saadah
- Department of Paediatrics, King Abdulaziz University, Jeddah, Kingdom of Saudi Arabia
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Are Expectations Too High for Transitioning Adolescents With Inflammatory Bowel Disease? Examining Adult Medication Knowledge and Self-Management Skills. J Pediatr Gastroenterol Nutr 2016; 63:494-499. [PMID: 27280748 PMCID: PMC5331613 DOI: 10.1097/mpg.0000000000001299] [Citation(s) in RCA: 16] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/17/2022]
Abstract
OBJECTIVE Transition readiness assessment has focused attention on adolescent knowledge and skills, but data-driven benchmarks have not been established. METHODS Patients with inflammatory bowel disease (IBD), ages 25 to 50 years, attending an outpatient gastroenterology clinic, were recruited to complete a voluntary, confidential survey asking patients to recall medications and potential side effects, and to rate their degree of independence performing health maintenance tasks. RESULTS The 141 respondents (48% response rate) had mean age of 36 years with median disease duration of 11 years. They were 60% female, 54% had Crohn disease, and 23% were diagnosed before age 18. Nearly all patients were fully independent answering doctor's questions during the visit (93%) and scheduling office visits (92%). Excluding pharmacy pick up, full independence seen in only 57%, whereas 16% significantly delegated tasks. No differences by sex, disease type, medication class, age at disease onset, or disease duration were found across levels of self-management. Almost all (97%) respondents could recall medication name, whereas fewer were able to recall dose (63%) or frequency (65%). Side effect knowledge was poor; among 81 patients on a biologic or immunomodulator, only 17 (21%) cited cancer and 22 (27%) cited infection. CONCLUSIONS Adolescent IBD transition programs now have empirical data from the present study about adult benchmarks for independence in self-management skills. Further research can establish which skills correlate with medication adherence and active collaboration with the medical team. The present study also exposes important gaps in medication risk knowledge and may allow improved patient education for subgroups of adult patients with IBD.
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Factors influencing transitional care from adolescents to young adults with cancer in Taiwan: A population-based study. BMC Pediatr 2016; 16:122. [PMID: 27484184 PMCID: PMC4971729 DOI: 10.1186/s12887-016-0657-z] [Citation(s) in RCA: 8] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/21/2015] [Accepted: 07/26/2016] [Indexed: 11/21/2022] Open
Abstract
Background To investigate the progress of transition from paediatric to adult health care for patients with cancer in Taiwan’s medical system. Methods The data were retrieved from the Longitudinal Health Insurance Database (LHID), which contains the original inpatient and outpatient medical claims data for 1,000,000 enrollees randomly sampled from the NHIRD between 1997 and 2010. Results Among the 1,411 cancer patients selected for this study, 98.09 % received adult-oriented therapy before the age of 18. In addition, only 1.91 % of the patients received paediatric-oriented therapy during adolescence. The primary factors that determine whether these patients would receive paediatric-oriented therapy or adult-oriented therapy at an early age were as follows: the age of the patient at the first visit and the performance-level of the hospital (p < 0.001). Conclusions Previous studies conducted in developed countries have demonstrated that the unwillingness of patients to switch from paediatric-oriented therapy to adult-oriented therapy being the major obstacle that hinders the transition process. However, this study revealed a different result: the implementation of the National Health Insurance system in Taiwan makes healthcare affordable for the adolescent patients who may not possess adequate knowledge about paediatric health care and may not appreciate paediatric-oriented therapy, thereby hindering the transition process.
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