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Warsop ZI, Manzo CA, Yu N, Yusuf B, Kontovounisios C, Celentano V. Patient-reported Outcome Measures in Ileoanal Pouch Surgery: a Systematic Review. J Crohns Colitis 2024; 18:479-487. [PMID: 37758036 DOI: 10.1093/ecco-jcc/jjad163] [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: 08/04/2023] [Revised: 09/14/2023] [Accepted: 09/21/2023] [Indexed: 10/03/2023]
Abstract
OBJECTIVE To summarise frequency, type, and heterogeneity of patient-reported outcomes measures [PROMs] in papers reporting on outcomes after ileal pouch anal anastomosis [IPAA]. BACKGROUND Prevalence of ulcerative colitis [UC] has risen in Western countries, and one in three patients requires surgery. IPAA is a frequently performed procedure for UC, and a lack of standardisation is manifest in reporting outcomes for inflammatory bowel disease [IBD] despite the clear need for inclusion of PROMs as primary outcomes in IBD trials. METHODS Scopus, Pubmed, and Web of Science databases were searched from January 2010 to January 2023 for studies investigating outcomes in IPAA surgery. The primary outcome was the proportion of studies reporting outcomes for IPAA surgery for UC, which included PROMs. RESULTS The search identified a total of 8028 studies which, after de-duplication and exclusion, were reduced to 79 articles assessing outcomes after IPAA surgery. In all 44 [55.7%] reported PROMs, with 23 including validated questionnaires and 21 papers using authors' questions, 22 different PROMs were identified, with bowel function as the most investigated item. The majority of studies [67/79, 85%] were retrospective, only 14/79 [18%] were prospective papers and only two were [2.5%] randomised, controlled trials. CONCLUSIONS Only half of the papers reviewed used PROMs. The main reported item is bowel function and urogenital, social, and psychological functions are the most neglected. There is lack of standardisation for use of PROMs in IPAA. Complexity of UC and of outcomes after IPAA demands a change in clinical practice and follow-up, given how crucial PROMs are, compared with their non-routine use.
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Affiliation(s)
| | - Carlo Alberto Manzo
- Imperial College London School of Medicine, London, UK
- Department of Colorectal Surgery, Chelsea and Westminster Hospital NHS Foundation Trust, London, UK
| | - Natalie Yu
- Imperial College London School of Medicine, London, UK
| | - Bilal Yusuf
- Imperial College London School of Medicine, London, UK
| | - Christos Kontovounisios
- Department of Colorectal Surgery, Chelsea and Westminster Hospital NHS Foundation Trust, London, UK
- Department of Colorectal Surgery, Royal Marsden NHS Foundation Trust, London, UK
- Department of Surgery and Cancer, Imperial College London, London, UK
| | - Valerio Celentano
- Department of Colorectal Surgery, Chelsea and Westminster Hospital NHS Foundation Trust, London, UK
- Department of Surgery and Cancer, Imperial College London, London, UK
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Randall JA, Guobyte A, Delbecque L, Newton L, Symonds T, Hunter T. Qualitative research to explore the symptoms and impacts experienced by children with ulcerative colitis. J Patient Rep Outcomes 2020; 4:75. [PMID: 32894366 PMCID: PMC7477023 DOI: 10.1186/s41687-020-00238-1] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/25/2020] [Accepted: 08/18/2020] [Indexed: 01/09/2023] Open
Abstract
BACKGROUND Ulcerative Colitis (UC) is a chronic gastrointestinal disease that often presents during one's most productive years and is characterized by colon inflammation. Key symptoms and impacts in adults are well-known, however, experiences among pediatric populations have not been well documented. The purpose of this study was to understand the health-related quality of life and symptomatic experience of children (2-11 years) living with UC. METHODS Qualitative, semi-structured face-to-face interviews were conducted. Children aged 5-11 years were interviewed, as well as their parents/caregivers in matched dyads. Parents/caregivers of children aged2-4 years were interviewed within a parent/caregiver-only cohort. All participants were recruited from the United States. Interviews were coded using thematic analysis. RESULTS Key symptoms and impacts reflecting the lived experience of UC were identified following thematic analysis, generating a conceptual model. A total of 32 participants (20 parents/caregivers and 12 children) were interviewed. Results identified a substantial burden of UC in children. All children and parents/caregivers reported that they/their child experienced stomach/abdominal pain. Other symptoms discussed by over 75% were blood in stool, diarrhea/loose stools, stool urgency, incomplete evacuation, stool frequency, and feeling gassy/passing gas. The most frequently discussed impacts by over 75% of participants were on emotional and practical aspects, seriously affecting quality of life. CONCLUSIONS Qualitative analysis of the interviews identified a substantial burden of UC on children, with a profound impact on their lives. The symptomatic experience is reflective of adults and adolescents. A high level of agreement between parents/caregivers and children was demonstrated regarding the perception of the presence or absence of symptoms. Children aged 8-11 years showed higher levels of agreement with parents/caregivers than did younger children, indicating appropriateness of self-report of symptom data in the 8-11 years age group.
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Affiliation(s)
- Jason A. Randall
- Clinical Outcomes Solutions, Unit 68 Basepoint, Shearway Business Park, Shearway Road, Folkestone, Kent CT19 4RH UK
| | | | | | - Louise Newton
- Clinical Outcomes Solutions, Unit 68 Basepoint, Shearway Business Park, Shearway Road, Folkestone, Kent CT19 4RH UK
| | - Tara Symonds
- Clinical Outcomes Solutions, Unit 68 Basepoint, Shearway Business Park, Shearway Road, Folkestone, Kent CT19 4RH UK
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Newton L, Randall JA, Hunter T, Keith S, Symonds T, Secrest RJ, Komocsar WJ, Curtis SE, Abetz-Webb L, Kappelman M, Naegeli AN. A qualitative study exploring the health-related quality of life and symptomatic experiences of adults and adolescents with ulcerative colitis. J Patient Rep Outcomes 2019; 3:66. [PMID: 31667633 PMCID: PMC6821900 DOI: 10.1186/s41687-019-0154-x] [Citation(s) in RCA: 19] [Impact Index Per Article: 3.2] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/17/2018] [Accepted: 09/30/2019] [Indexed: 01/21/2023] Open
Abstract
BACKGROUND Ulcerative colitis (UC) often first presents during adolescence and early adulthood. Primary symptoms of UC are well known, yet similarities and differences of disease experience in adults and adolescents are not well characterized. METHODS To understand the health-related quality of life (HRQoL) and symptomatic experience of UC, in-depth interviews were conducted in the US with 21 adults (20-70 years) and 14 adolescents (12-17 years). Eligibility and medical history were confirmed by clinician report. A previously conducted literature review and resultant conceptual model informed the discussion guide to explore symptoms and HRQoL. Age appropriate creative tasks ("animal" task and collage) were employed to facilitate discussion. Transcripts and collages were subjected to thematic analysis using ATLAS.ti software. RESULTS Clinician-reported UC severity included 24% mild, 38% moderate, 38% severe among adults; and 64% mild, 29% moderate, 7% severe among adolescents. Among adults, 52% were female, 67% were white. Among adolescents, 50% were female, 71% were white. During analysis it was noted that all participants reported stomach/abdominal pain. Other key symptoms identified were frequent bowel movements, diarrhea, blood in stools, sudden need for bowel movement, stomach cramping, bloating, and feeling gassy/passing gas (≥75% of participants). Key impacts identified were embarrassment, dietary limitations, having to plan around UC, worry/fear, anger, low mood/depression, and relationship with others, (≥75% of participants). In creative tasks, animals were chosen to represent their UC and content included in the collages reflected the most commonly discussed themes from the interviews. Only adults discussed feeling dehydrated, while only adolescents discussed the impact of UC on school life. CONCLUSIONS Open-ended interviews highlighted the HRQoL and symptomatic experiences of UC from the patient's perspective, which were similar between adult and adolescent UC patients.
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Affiliation(s)
- Louise Newton
- Clinical Outcomes Solutions, Unit 68 Basepoint, Shearway Business Park, Shearway Road, Folkestone, Kent, CT19 4RH UK
| | - Jason A. Randall
- Clinical Outcomes Solutions, Unit 68 Basepoint, Shearway Business Park, Shearway Road, Folkestone, Kent, CT19 4RH UK
| | | | | | - Tara Symonds
- Clinical Outcomes Solutions, Unit 68 Basepoint, Shearway Business Park, Shearway Road, Folkestone, Kent, CT19 4RH UK
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Helavirta I, Hyöty M, Huhtala H, Collin P, Aitola P. Long-term functional outcome after restorative proctocolectomy: a cross-sectional study. Scand J Gastroenterol 2019; 53:1245-1249. [PMID: 30346218 DOI: 10.1080/00365521.2018.1518479] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/04/2023]
Abstract
OBJECTIVE Restorative proctocolectomy is the procedure of choice in the surgical treatment of ulcerative colitis. Functional outcome is the key result of surgery. The aim of this study was to evaluate the long term-functional outcome after the procedure. MATERIAL AND METHODS The study comprised 282 ulcerative colitis patients over 18 years of age who underwent restorative proctocolectomy between1985 and 2009. The median follow-up time was 13 years (range 4-28). Functional outcome of the pouch was evaluated by the disease-specific Öresland questionnaire with a score 0-15; 15 being the worst, and score <8 considered well-functioning. RESULTS The mean functional score was 5.5 (men 5.6, women 5.0). Seventy per cent of the patients had a well-functioning pouch. Those with poor function had had significantly more pouchitis than the patients with well-functioning pouches, 51.0 vs. 25.6% respectively (p = .001). No association was found between functional score and the time since the operation. In multiple regression analysis only the occurrence of pouchitis was associated with poor functional results. CONCLUSIONS The functional results were good and remained stable in the majority of the patients. Pouchitis seemed to have a negative impact on the functional results. Elderly patients especially need careful planning and counselling before restorative proctocolectomy.
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Affiliation(s)
- Ilona Helavirta
- a Department of Gastroenterology and Alimentary Tract Surgery , Tampere University Hospital , Tampere , Finland
| | - Marja Hyöty
- a Department of Gastroenterology and Alimentary Tract Surgery , Tampere University Hospital , Tampere , Finland
| | - Heini Huhtala
- b School of Health Sciences , University of Tampere , Tampere , Finland
| | - Pekka Collin
- c School of Medicine , University of Tampere , Tampere , Finland
| | - Petri Aitola
- c School of Medicine , University of Tampere , Tampere , Finland
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Factors Associated with Long-Term Quality of Life After Restorative Proctocolectomy with Ileal Pouch Anal Anastomosis. J Gastrointest Surg 2019; 23:571-579. [PMID: 30097964 DOI: 10.1007/s11605-018-3904-9] [Citation(s) in RCA: 10] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/31/2018] [Accepted: 07/24/2018] [Indexed: 01/31/2023]
Abstract
THE AIM The aim of this study was to analyze factors associated with quality of life (QoL) after ileal pouch anal anastomosis (IPAA). METHODS Patients who underwent IPAA (1983-2015) and replied to QoL questionnaire were identified from an IRB-approved prospectively maintained IPAA-database. QoL was assessed using Cleveland Global Quality of Life (CGQL) questionnaire at 1, 3, 5, and 10 years postoperatively. Patient cohort was divided in two groups: overall QoL score ≤ 0.7 (low) and > 0.7 (high). Demographics, perioperative morbidity, and functional results were analyzed. RESULTS A total of 4059 patients replied to the questionnaire at the most recent follow-up and were included. A total of 2889 (71%) had overall QoL > 0.7 (group 1) and 1170 (29%) patients had overall QoL ≤ 0.7 (group 2). Patients in group 1 had lower rates of early (44.6 vs. 50.4%, p = 0.003) and late (55.7 vs. 64.5%, p < 0.003) postoperative complications. Kaplan-Meier survival analysis demonstrated significantly higher rates of pouch failure among patients with lower QoL. Pouchitis, obstruction, fistulas, higher number of stools, and IPAA performed during the most recent decade (2005-2015) were significantly associated with lower QoL (≤ 0.7), while S-pouch configuration was associated with higher QoL (> 0.7). CONCLUSION Patient's characteristics and minimal perioperative complications impact patient's QoL following IPAA not only in the short term, but also in the long term.
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Helavirta I, Hyöty M, Oksanen P, Huhtala H, Haapamäki J, Aitola P. Health-Related Quality of Life after Restorative Proctocolectomy: A Cross-Sectional Study. Scand J Surg 2018; 107:315-321. [PMID: 29774794 DOI: 10.1177/1457496918772362] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022]
Abstract
BACKGROUND AND AIMS: Patients undergoing restorative proctocolectomy have often suffered from active ulcerative colitis which should be remembered when assessing quality of life after operation. The aim of this study was to explore health-related quality of life after restorative proctocolectomy in those with poor or good pouch function and to compare that to patients with active or inactive ulcerative colitis and to the general population. MATERIAL AND METHODS: Altogether, 282 restorative proctocolectomy patients were investigated. The control group comprised 408 ulcerative colitis patients from the local register. Generic 15D and disease-specific inflammatory bowel disease questionnaire health-related quality of life instruments were used. Population-based data were available for 15D. Pouch function was evaluated with Öresland score and colitis activity with simple clinical colitis activity index. RESULTS: 15D results showed that patients with good pouch function had health-related quality of life similar to that of the general population. Health-related quality of life with inflammatory bowel disease questionnaire was equally good in patients with good pouch function (n = 131; 70%) and inactive colitis (n = 95; 63%), and equally impaired in patients with poor pouch function (n = 56; 30%) and active colitis (n = 18; 12%). CONCLUSION: The majority of patients had health-related quality of life comparable to that in general population. Most patients with active ulcerative colitis are likely to improve their health-related quality of life after successful surgery. These findings are important when informing colitis patients about life after surgery.
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Affiliation(s)
- I Helavirta
- 1 School of Medicine, University of Tampere, Tampere, Finland.,2 Department of Gastroenterology and Alimentary Tract Surgery, Tampere University Hospital, Tampere, Finland
| | - M Hyöty
- 2 Department of Gastroenterology and Alimentary Tract Surgery, Tampere University Hospital, Tampere, Finland
| | - P Oksanen
- 1 School of Medicine, University of Tampere, Tampere, Finland.,2 Department of Gastroenterology and Alimentary Tract Surgery, Tampere University Hospital, Tampere, Finland
| | - H Huhtala
- 3 School of Health Sciences, University of Tampere, Tampere, Finland
| | - J Haapamäki
- 4 Department of Gastroenterology, Helsinki University Hospital, Helsinki, Finland
| | - P Aitola
- 2 Department of Gastroenterology and Alimentary Tract Surgery, Tampere University Hospital, Tampere, Finland
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Impact of staged surgery on quality of life in refractory ulcerative colitis. Surg Endosc 2016; 31:643-649. [DOI: 10.1007/s00464-016-5010-y] [Citation(s) in RCA: 9] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/02/2016] [Accepted: 05/27/2016] [Indexed: 12/19/2022]
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Real-Life Treatment Paradigms Show Adalimumab Is Cost-Effective for the Management of Ulcerative Colitis. Can J Gastroenterol Hepatol 2016; 2016:5315798. [PMID: 27781203 PMCID: PMC5065999 DOI: 10.1155/2016/5315798] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/06/2016] [Revised: 08/19/2016] [Accepted: 08/24/2016] [Indexed: 01/30/2023] Open
Abstract
Background. Adalimumab is effective for the maintenance of remission in patients with moderate-to-severe ulcerative colitis (UC). Currently, biologic therapies are used in cases where patients fail conventional medical therapies. If biologic therapies are not available, patients often choose to remain in an unwell state rather than undergo colectomy. Objective. The aim of the study was to evaluate the cost-effectiveness of adalimumab in patients with UC where adalimumab was readily available compared to not available. Methods. A previously validated Markov model was used to simulate disease progression of patients with UC who are corticosteroid-dependent and/or did not respond to thiopurine therapy. Utility scores and transition probabilities between health states were determined by using data from randomized controlled trials and real-life observational studies. Costs were obtained from the Ontario Case Costing Initiative and the Alberta Health Schedule of Medical Benefits. Results. The incremental cost-effectiveness ratios for readily available adalimumab treatment of UC were $40,000 and $59,000 per quality-adjusted life year, compared with ongoing medical therapy in an unwell state, at 5-year and 10-year treatment time horizons, respectively. Conclusion. Considering real-life patient preferences to avoid colectomy, adalimumab is cost-effective according to a willingness-to-pay threshold of $80,000 for treatment of UC.
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Ung V, Thanh NX, Wong K, Kroeker KI, Lee T, Wang H, Ohinmaa A, Jacobs P, Fedorak RN. Real-life treatment paradigms show infliximab is cost-effective for management of ulcerative colitis. Clin Gastroenterol Hepatol 2014; 12:1871-8.e8. [PMID: 24674943 DOI: 10.1016/j.cgh.2014.03.012] [Citation(s) in RCA: 9] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/07/2013] [Revised: 02/13/2014] [Accepted: 03/04/2014] [Indexed: 02/07/2023]
Abstract
BACKGROUND & AIMS Infliximab is effective for induction and maintenance of response in patients with moderate to moderately severe ulcerative colitis. Previous cost analyses of infliximab treatment for ulcerative colitis used models of colectomy vs infliximab and response rates derived from early clinical trials. In real life, therapeutic options are more complex; patients frequently choose to remain in an unwell state rather than undergo colectomy, and rates of response to infliximab are generally higher than those reported from clinical trials. We evaluate the real-life cost-effectiveness of infliximab for treatment of ulcerative colitis where infliximab was readily available compared with not available, causing patients to remain in unwell states. METHODS We constructed a Markov model to simulate disease progression of patients with moderate or moderately severe ulcerative colitis who depended on corticosteroids and/or did not respond to thiopurine therapy. Utility scores and transition probabilities between health states were determined by using data from randomized controlled trials and real-life rates published by expert inflammatory bowel disease centers. Health care costs were obtained from the Ontario Case Costing Initiative and the Alberta Health Schedule of Medical Benefits documents. RESULTS The incremental cost-effectiveness ratios for infliximab treatment of ulcerative colitis were $79,000 and $64,000 per quality-adjusted life year, compared with ongoing medical therapy, at 5-year and 10-year treatment time horizons, respectively. CONCLUSIONS By using real-life response rates and patients' preference to avoid colectomy, infliximab therapy is a cost-effective strategy at a willingness-to-pay threshold of $80,000 for treatment of ulcerative colitis.
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Affiliation(s)
- Victoria Ung
- Division of Gastroenterology, University of Alberta, Edmonton, Alberta, Canada
| | | | - Karen Wong
- Division of Gastroenterology, University of Alberta, Edmonton, Alberta, Canada
| | - Karen I Kroeker
- Division of Gastroenterology, University of Alberta, Edmonton, Alberta, Canada
| | - Thomas Lee
- Division of Gastroenterology, University of Alberta, Edmonton, Alberta, Canada
| | - Haili Wang
- Division of Gastroenterology, University of Alberta, Edmonton, Alberta, Canada
| | - Arto Ohinmaa
- Institute of Health Economics, Edmonton, Alberta, Canada
| | - Philip Jacobs
- Institute of Health Economics, Edmonton, Alberta, Canada
| | - Richard N Fedorak
- Division of Gastroenterology, University of Alberta, Edmonton, Alberta, Canada.
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Abstract
The position of surgery in the treatment of ulcerative colitis (UC) has changed in the era of biologics. Several important questions arise in determining the optimal positioning of surgery in the treatment of UC, which has long been a challenge facing gastroenterologists and surgeons. Surgery is life-saving in some patients and leads to better bowel function and better quality of life in most patients. The benefits of surgery, however, must be weighed against the potential surgical morbidity and compromised functioning that clearly can occur. The introduction of biologic therapy has added further complexity to decisions about medical management, surgery, and the relative timing of these choices. Appropriate medical management of UC may induce and maintain remission and may prevent surgery. However, medical management also carries risks of adverse effects, and recent data suggest that delay of surgery during ineffective medical therapy can increase the chances of negative surgical outcomes. To make individualized timely treatment decisions, early collaboration between gastroenterologists and surgeons is important and more data on predictors of treatment response and positive outcomes are needed. Early identification of patients who would benefit from biologic therapy or surgery is challenging.
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Pollett WG, Marion K, Moeslein G, Schneider C, Parry S, Veysey K, Bissett IP, Jones I, Macrae F. Quality of life after surgery in individuals with familial colorectal cancer: does extended surgery have an adverse impact? ANZ J Surg 2013; 84:359-64. [DOI: 10.1111/ans.12336] [Citation(s) in RCA: 9] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 06/23/2013] [Indexed: 11/30/2022]
Affiliation(s)
- William G. Pollett
- Department of Surgery; St. Clare's Mercy Hospital; St. John's Newfoundland Canada
| | - Kaye Marion
- School of Mathematical and Geospatial Sciences; RMIT University; Melbourne Victoria Australia
| | - Gabriela Moeslein
- Department of Surgery; HELIOS St. Josefs-Hospital Bochum-Linden; Bochum Germany
| | - Claudia Schneider
- Department of Surgery; HELIOS St. Josefs-Hospital Bochum-Linden; Bochum Germany
| | - Susan Parry
- Department of Gastroenterology; NZ Familial GI Cancer Service; Auckland New Zealand
| | - Katrina Veysey
- Department of Surgery; University of Auckland; Auckland New Zealand
| | - Ian P. Bissett
- Department of Surgery; University of Auckland; Auckland New Zealand
| | - Ian Jones
- Department of Surgery; The Royal Melbourne Hospital; Parkville Victoria Australia
| | - Finlay Macrae
- Department of Colorectal Medicine and Genetics; The Royal Melbourne Hospital; Parkville Victoria Australia
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Mukewar S, Mani P, Wu X, Lopez R, Shen B. YouTube and inflammatory bowel disease. J Crohns Colitis 2013; 7:392-402. [PMID: 22906403 DOI: 10.1016/j.crohns.2012.07.011] [Citation(s) in RCA: 65] [Impact Index Per Article: 5.4] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/27/2012] [Revised: 07/10/2012] [Accepted: 07/11/2012] [Indexed: 02/08/2023]
Abstract
UNLABELLED Background and aims Nearly half of all patients with inflammatory bowel disease (IBD) use the Internet as a source of information for their disease. We analyzed the source, content and accuracy of IBD videos found on YouTube - one of the most popular websites in the United States - and assessed the demographic variables of the viewers. METHODS The 100 most viewed videos with relevant information on IBD were analyzed. We included only English language videos that were less than 20 min in length and primarily focused on IBD. Those with no sound/poor sound quality were excluded. More than 30 variables were analyzed. RESULTS Adults of 45-54 years old (95.1%) comprised the most common age group of viewers. Forty-eight percent of videos focused on Crohn's disease (CD), 32.0% on ulcerative colitis (UC), and 20.0% on both. Overall content for patient education was poor. Videos discussing alternative treatment options were more likely to depict patients' personal experience (73.9% vs. 2.4%) (p<0.001) and be an advertisement compared to patient education videos (78.3% vs. 0) (p<0.001). Videos discussing patient education had a higher number of favorites (mean 25.0 vs. 5.5) (p<0.001), comments (mean 22.0 vs. 5.0) (p<0.022) and "likes" (mean 19.0 vs. 9.0) (p=0.025) than the ones discussing alternative treatment options. CONCLUSIONS YouTube videos on IBD are popular but a poor source of patient education. Healthcare providers and professional societies should provide more educational materials using this powerful Internet tool to counteract the misleading information, especially for the targeted age group (45-54 years).
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Affiliation(s)
- Saurabh Mukewar
- Department of Internal Medicine, The Cleveland Clinic Foundation, Cleveland, OH 44195, United States
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Quick VM, Byrd-Bredbenner C, Neumark-Sztainer D. Chronic illness and disordered eating: a discussion of the literature. Adv Nutr 2013; 4:277-86. [PMID: 23674793 PMCID: PMC3650496 DOI: 10.3945/an.112.003608] [Citation(s) in RCA: 95] [Impact Index Per Article: 7.9] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/13/2022] Open
Abstract
This paper describes the prevalence of eating disorders and disordered eating behaviors, the reasons why these practices are endorsed, and the potential consequences in youths and young adults with selected diet-related chronic health conditions (DRCHCs) and provides recommendations for eating disorder prevention interventions and research efforts. Although it remains unclear whether the prevalence of eating disorders is higher in those with DRCHCs compared with the general population, overall findings suggest that young people with DRCHCs may be at risk of endorsing disordered eating behaviors that may lead to diagnosis of an eating disorder and other health problems over the course of their treatment. Thus, health care providers should be aware that young people with DRCHCs may be at risk of eating disorders and carefully monitor psychological changes and the use of unhealthy weight control methods. It is also important to develop and evaluate theory-based interventions and disease-specific eating disorder risk screening tools that are effective in halting the progression of eating disorders and negative health outcomes in young people with chronic health conditions.
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Affiliation(s)
- Virginia M. Quick
- Eunice Kennedy Shriver National Institute of Child Health and Human Development, Division of Epidemiology, Statistics, and Prevention Research, NIH, DHHS, Bethesda, MD
| | | | - Dianne Neumark-Sztainer
- School of Public Health, Division of Epidemiology and Community Health, University of Minnesota, Minneapolis, MN
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Han Y, Lin MB, He YG, Zhang HB, Zhang YJ, Yin L. Laparoscopic surgery for inflammatory bowel disease--the experience in China. J INVEST SURG 2013; 26:180-5. [PMID: 23514051 DOI: 10.3109/08941939.2012.732664] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/13/2022]
Abstract
BACKGROUND The incidence of inflammatory bowel disease (IBD) has risen rapidly in China over the last 15 years. Increasing numbers of people with IBD require surgery during their lifetime, but few reports of IBD in Eastern populations have been described to date. The aim of this study was to assess the short-term effects of the laparoscopic surgery for IBD in Chinese patients. MATERIALS AND METHODS From February 2010 to March 2012, 35 patients with IBD underwent laparoscopic operations and the clinical data obtained for these patients were reviewed. RESULTS Patients with Crohn's disease (CD) (N = 21) and ulcerative colitis (UC) (N = 14) underwent laparoscopic surgery. In the CD group, the mean age was 37.4 years. Two patients (9.5%) required conversion to an open procedure. The median length of postoperative hospitalization was 9 (7-40) days. Overall morbidity was 26.3% and no patients required re-operation. In the UC group, the mean age was 55.2 years. The conversion rate was 14.3% (2/14). The median time to regular diet was 4 (3-10) days and the median length of postoperative hospitalization was 8 (7-25) days. Four patients developed postoperative complications and one patient developed ileostomy retraction requiring urgent operative intervention to rebuild the stoma. CONCLUSIONS Laparoscopic surgery in patients with IBD can be accomplished safely and with reasonable operative times, conversion rates and morbidity rates. The main advantages of the laparoscopic approach are rapid recovery, improved cosmesis, less postoperative pain, and patient satisfaction.
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Affiliation(s)
- Yi Han
- Department of general surgery, RuiJin hospital affiliated Shanghai Jiaotong University school of medicine, Shanghai, China
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Zhang YJ, Han Y, Lin MB, He YG, Zhang HB, Yin L, Huang L. Ileal pouch anal anastomosis with modified double-stapled mucosectomy-the experience in China. World J Gastroenterol 2013; 19:1299-1305. [PMID: 23483639 PMCID: PMC3587488 DOI: 10.3748/wjg.v19.i8.1299] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/16/2012] [Revised: 09/11/2012] [Accepted: 12/17/2012] [Indexed: 02/06/2023] Open
Abstract
AIM: To investigate the feasibility and long-term functional outcome of ileal pouch-anal anastomosis with modified double-stapled mucosectomy.
METHODS: From January 2002 to March 2011, fourty-five patients underwent ileal pouch anal anastomosis with modified double-stapled mucosectomy technique and the clinical data obtained for these patients were reviewed.
RESULTS: Patients with ulcerative colitis (n = 29) and familial adenomatous polyposis (n = 16) underwent ileal pouch-anal anastomosis with modified double-stapled mucosectomy. Twenty-eight patients underwent one-stage restorative proctocolectomy, ileal pouch anal anastomosis, protective ileostomy and the ileostomy was closed 4-12 mo postoperatively. Two-stage procedures were performed in seventeen urgent patients, proctectomy and ileal pouch anal anastomosis were completed after previous colectomy with ileostomy. Morbidity within the first 30 d of surgery occurred in 10 (22.2%) patients, all of them could be treated conservatively. During the median follow-up of 65 mo, mild to moderate anastomotic narrowing was occurred in 4 patients, one patient developed persistent anastomotic stricture and need surgical intervention. Thirty-five percent of patients developed at least 1 episode of pouchitis. There was no incontinence in our patients, the median functional Oresland score was 6, 3 and 2 after 1 year, 2.5 years and 5 years respectively. Nearly half patients (44.4%) reported “moderate functioning”, 37.7% reported “good functioning”, whereas in 17.7% of patients “poor functioning” was observed after 1 year. Five years later, 79.2% of patients with good function, 16.7% with moderate function, only 4.2% of patients with poor function.
CONCLUSION: The results of ileal pouch anal anastomosis with modified double-stapled mucosectomy technique are promising, with a low complication rate and good long-term functional results.
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Yoshida K, Araki T, Uchida K, Okita Y, Fujikawa H, Inoue M, Tanaka K, Inoue Y, Mohri Y, Kusunoki M. Sexual activity after ileal pouch-anal anastomosis in Japanese patients with ulcerative colitis. Surg Today 2013; 44:73-9. [PMID: 23440359 DOI: 10.1007/s00595-013-0505-9] [Citation(s) in RCA: 24] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/25/2012] [Accepted: 10/26/2012] [Indexed: 12/20/2022]
Abstract
PURPOSE The aim of this study was to evaluate the sexual activity after restorative proctocolectomy with ileal J-pouch-anal anastomosis (ileoanal anastomosis) in Japanese patients with ulcerative colitis. METHODS Sixty-one patients who had undergone ileoanal anastomosis and were followed for at least 6 months after surgery were randomly selected. Their quality of life was assessed using the Japanese version of the Inflammatory Bowel Disease Questionnaire. Scores of three or less for the item "Sex life" were predetermined to represent poor sexual activity. The medical staff then asked them the reasons for this using a non-structured interview and open-ended questions. RESULTS Overall, 19 patients reported poor sexual activity. There was a significant difference in the scores for "Social functions" other than Sex life between individuals with poor and good sexual activities (21.6 ± 4.6 vs. 24.1 ± 4.2, P = 0.016). Ileoanal anastomosis after the age of 40 (OR 22, P = 0.02) and a total preoperative corticosteroid dose ≥15 g (OR 7.4, P = 0.04) were significant risk factors for poor sexual activity after ileoanal anastomosis. CONCLUSION Our results suggest that ileoanal anastomosis results in relatively poor sexual activity, which was associated with other social functions, older age and a higher dose of corticosteroids administered to Japanese patients with ulcerative colitis.
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Affiliation(s)
- Kazue Yoshida
- Faculty of Medicine, School of Nursing, Mie University, Tsu, Japan
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Abstract
BACKGROUND Total proctocolectomy with IPAA is frequently considered the procedure of choice for surgical patients with ulcerative colitis, presumably owing to an expectation of improved quality of life in comparison with an ileostomy. OBJECTIVE The goal of our study was to determine whether long-term quality of life among patients with a pelvic pouch is better than those who chose a permanent stoma. DESIGN This investigation is a cross-sectional observational study using a prospective database. SETTING This study was conducted at an academic medical center. PATIENTS Consecutive patients who had undergone IPAA or a permanent ileostomy for ulcerative colitis by a single surgeon, presenting for their annual follow-up visit from July through September 2011, were offered participation in the study. A randomly chosen group of subjects who did not have scheduled appointments during the study period were sent a letter inviting them to participate in the study. MAIN OUTCOME MEASURES The primary outcome measures used were EQ-5D-3L, the Short Quality of Life in Inflammatory Bowel Disease questionnaire, the Cleveland Global Quality of Life instrument, the Fecal Incontinence Quality of Life scale, and the Stoma Quality of Life scale. RESULTS Thirty-five patients with a pelvic pouch and 24 ostomates were accrued and comprehensively studied. Global quality-of-life scores were virtually identical for the 2 groups. Patients with a pelvic pouch had better subscores in current quality of health and energy level, Fazio score, sexuality/body image, and work/social function. LIMITATIONS This study was limited by its small sample size, and some of our patients were enrolled through mailed surveys and, hence, nonresponse bias may be present. The follow-up time since surgery was longer in the pelvic pouch group than in the ileostomy group. CONCLUSION Informed patients with ulcerative colitis choosing an ileostomy have a health-related global quality of life very similar to patients with a pelvic pouch. Better outcomes in patients with an ileal pouch were most evident in the areas of sexuality/body image and work/social function.
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Millán Scheiding M, Rodriguez Moranta F, Kreisler Moreno E, Golda T, Fraccalvieri D, Biondo S. [Current status of elective surgical treatment of ulcerative colitis. A systematic review]. Cir Esp 2012; 90:548-57. [PMID: 23063060 DOI: 10.1016/j.ciresp.2012.07.019] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/23/2012] [Accepted: 07/29/2012] [Indexed: 11/16/2022]
Abstract
Despite recent advances in the medical treatment of ulcerative colitis (UC), approximately 25-40% of patients will need surgery during their disease. The aim of elective surgical treatment of UC is to remove the colon/and rectum with minimal postoperative morbidity, and to offer a good long-term quality of life. There are several technical options for the surgical treatment of UC; at present, the most frequently offered is restorative proctocolectomy and ileal pouch-anal anastomosis. Both the surgeon and patient should be aware of the risks associated with a technically demanding procedure and possible postoperative complications, including the possibility of infertility, permanent stoma, or several surgical procedures for pouch-related complications. A precise knowledge of each surgical technique, and its indications, complications, long-term risks and benefits is useful to offer the best surgical option tailored to each patient. We searched in PubMed, MEDLINE, and EMBASE for all kinds of articles (all the publications until April 2012). Papers on Crohn's disease, indeterminate colitis, or other forms of colitis were excluded from the review. We reviewed the abstracts and identified potentially relevant articles. MeSH words were used as search, "ulcerative colitis", "surgery", "indications", "elective surgery", "colectomy," "proctocolectomy," "laparoscopy", "Complications," "outcome", "results" "quality of life". One hundred and four articles were included in this review.
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Affiliation(s)
- Monica Millán Scheiding
- Unidad de Cirugía Colorrectal, Servicio de Cirugía General y Aparato Digestivo, Hospital Universitario de Bellvitge, ĹHospitalet de LLobregat, Barcelona, España.
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Lázár G. [Intestinal surgery]. Magy Seb 2012; 65:116-28. [PMID: 22717966 DOI: 10.1556/maseb.65.2012.3.6] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/19/2022]
Affiliation(s)
- György Lázár
- Szegedi Tudományegyetem, Általános Orvostudományi Kar Sebészeti Klinika Szeged
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