Interactive online informational and peer support application for patients with low anterior resection syndrome: patient survey and protocol for a multicentre randomized controlled trial.
low anterior resection syndrome
peer support
quality of life
rectal cancer
survivorship care
Journal
Colorectal disease : the official journal of the Association of Coloproctology of Great Britain and Ireland
ISSN: 1463-1318
Titre abrégé: Colorectal Dis
Pays: England
ID NLM: 100883611
Informations de publication
Date de publication:
May 2021
May 2021
Historique:
revised:
15
01
2021
received:
02
10
2020
accepted:
21
02
2021
pubmed:
28
2
2021
medline:
1
9
2021
entrez:
27
2
2021
Statut:
ppublish
Résumé
Low anterior resection syndrome (LARS) refers to a constellation of bowel symptoms that affect the majority of patients following restorative proctectomy. LARS is associated with poorer quality of life (QoL), and can lead to distress, anxiety and isolation. Peer support could be an important resource for people living with LARS, helping them normalize and validate their experience. The aim of this work is to describe the development of an interactive online informational and peer support app for LARS and the protocol for a randomized controlled trial. A multicentre, randomized, assessor-blind, parallel-groups pragmatic trial will involve patients from five large colorectal surgery practices across Canada. The trial will evaluate the impact of an interactive online informational and peer support app for LARS, consisting of LARS informational modules and a closed forum for peers and trained peer support mentors, on patient-reported outcomes of people living with LARS. The primary outcome will be global QoL at 6 months following app exposure. The treatment effect on global QoL will be modelled using generalized estimating equations. Secondary outcomes will include patient activation and bowel function as measured by LARS scores. In order to better understand patients' interest and preferences for an online peer support intervention for LARS, we conducted a single institution cross-sectional survey study of rectal cancer survivors. In total, 35/69 (51%) participants reported interest in online peer support for LARS. Age <65 years (OR 9.1; 95% CI 2.3-50) and minor/major LARS (OR 20; 95% CI 4.2-100) were significant predictors of interest in LARS online peer support. There is significant interest in the use of online peer support for LARS among younger patients and those with significant bowel dysfunction. Based on results of the needs assessment study, the app content and features were modified reflect patients' needs and preferences. We are now in an optimal position to rigorously test the potential effects of this initiative on patient-centered outcomes using a randomized controlled trial.
Types de publication
Clinical Trial Protocol
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
1248-1257Subventions
Organisme : Society of American Gastrointestinal and Endoscopic Surgeons
Organisme : Canadian Society of Colon and Rectal Surgeons
Informations de copyright
© 2021 The Association of Coloproctology of Great Britain and Ireland.
Références
Monson JR, Weiser MR, Buie WD, Chang GJ, Rafferty JF, Buie WD, et al. Practice parameters for the management of rectal cancer (revised). Dis Colon Rectum. 2013;56(5):535-50.
Bryant CL, Lunniss PJ, Knowles CH, Thaha MA, Chan CL. Anterior resection syndrome. Lancet Oncol. 2012;13(9):e403-8.
Emmertsen KJ, Laurberg S. Impact of bowel dysfunction on quality of life after sphincter-preserving resection for rectal cancer. Br J Surg. 2013;100(10):1377-87.
Emmertsen KJ, Laurberg S. Low anterior resection syndrome score: development and validation of a symptom-based scoring system for bowel dysfunction after low anterior resection for rectal cancer. Ann Surg. 2012;255(5):922-8.
Battersby NJ, Bouliotis G, Emmertsen KJ, Juul T, Glynne-Jones R, Branagan G, et al. Development and external validation of a nomogram and online tool to predict bowel dysfunction following restorative rectal cancer resection: the POLARS score. Gut. 2018;67(4):688-96.
Juul T, Ahlberg M, Biondo S, Espin E, Jimenez LM, Matzel KE, et al. Low anterior resection syndrome and quality of life: an international multicenter study. Dis Colon Rectum. 2014;57(5):585-91.
Martellucci J. Low anterior resection syndrome: a treatment algorithm. Dis Colon Rectum. 2016;59(1):79-82.
Chen TY, Emmertsen KJ, Laurberg S. Bowel dysfunction after rectal cancer treatment: a study comparing the specialist's versus patient's perspective. BMJ Open. 2014;4(1):e003374.
Garfinkle R, Park J, Fiore JF Jr, Bordeianou LG, Liberman AS, Bhatnagar S, et al. Development and evaluation of a patient-centered program for low anterior resection syndrome: protocol for a randomized controlled trial. BMJ. 2019;10(5):1-9.
Dennis C-L. Peer support within a health care context: a concept analysis. Int J Nurs Stud. 2003;40(3):321-32.
Stewart M, Letourneau N, Masuda JR, Anderson S, McGhan S. Impacts of online peer support for children with asthma and allergies:‘it just helps you every time you can't breathe well’. J Pediatr Nurs. 2013;28(5):439-52.
Dale JR, Williams S, Bowyer V. What is the effect of peer support on diabetes outcomes in adults? A systematic review. Diabet Med. 2012;29(11):1361-77.
Coulson NS. How do online patient support communities affect the experience of inflammatory bowel disease? An online survey. JRSM Short Rep. 2013;4(8):2042533313478004.
Malik SH, Coulson NS. Computer-mediated infertility support groups: an exploratory study of online experiences. Patient Educ Couns. 2008;73(1):105-13.
Hinton L, Kurinczuk JJ, Ziebland S. Infertility; isolation and the Internet: A qualitative interview study. Patient Educ Couns. 2010;81(3):436-41.
Paterson BL, Brewer J, Stamler LL. Engagement of parents in on-line social support interventions. J Pediatr Nurs. 2013;28(2):114-24.
Grunberg PH, Dennis CL, Da Costa D, Zelkowitz P. Infertility patients’ need and preferences for online peer support. Reprod Biomed Soc Online. 2018;6:80-9.
Garfinkle R, Wong-Chong N, Petrucci A, Sylla P, Wexner SD, Bhatnagar S, et al. Assessing the readability, quality and accuracy of online health information for patients with low anterior resection syndrome following surgery for rectal cancer. Colorectal Dis. 2019;21(5):523-31.
Chan AW, Tetzlaff JM, Altman DG, Laupacis A, Gotzsche PC, Krleza-Jeric K, et al. SPIRIT 2013 statement: defining standard protocol items for clinical trials. Ann Intern Med. 2013;158(3):200-7.
Hibbard JH, Mahoney ER, Stockard J, Tusler M. Development and testing of a short form of the patient activation measure. Health Serv Res. 2005;40(6 Pt 1):1918-30.
Pecorelli N, Fiore JF Jr, Kaneva P, Somasundram A, Charlebois P, Liberman AS, et al. An app for patient education and self-audit within an enhanced recovery program for bowel surgery: a pilot study assessing validity and usability. Surg Endosc. 2018;32(5):2263-2273. http://dx.doi.org/10.1007/s00464-017-5920-3
Liang KY, Zeger SL. Longitudinal data analysis using generalized linear models. Biometrika. 1986;73(1):13-22. http://dx.doi.org/10.1093/biomet/73.1.13
Wang M. Generalized estimating equations in longitudinal data analysis: a review and recent developments. Adv Stat. 2014;2014: 1-11. http://dx.doi.org/10.1155/2014/303728