A pilot randomized controlled trial of the iPeer2Peer program in adolescents with sickle cell disease: A mixed method study

Abstract Background and objectives: Sickle cell disease (SCD) is hallmarked by recurrent episodes of severe acute pain and the risk for chronic pain. Remote peer support programs have been shown to effectively improve health outcomes for many chronic conditions. The objective of this study was to...

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Main Authors: Lauren Kelenc, Brittany Wiles, Fareha Nishat, Chitra Lalloo, Anya Nair, Craig Eling, Melanie Kirby-Allen, Ewurabena Simpson, Roona Sinha, Richard Ward, William T. Zempsky, Sara Ahola Kohut, Jennifer N. Stinson
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Language:English
Published: Cambridge University Press 2025-01-01
Series:Journal of Clinical and Translational Science
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Online Access:https://www.cambridge.org/core/product/identifier/S2059866124011701/type/journal_article
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author Lauren Kelenc
Brittany Wiles
Fareha Nishat
Chitra Lalloo
Anya Nair
Craig Eling
Melanie Kirby-Allen
Ewurabena Simpson
Roona Sinha
Richard Ward
William T. Zempsky
Sara Ahola Kohut
Jennifer N. Stinson
author_facet Lauren Kelenc
Brittany Wiles
Fareha Nishat
Chitra Lalloo
Anya Nair
Craig Eling
Melanie Kirby-Allen
Ewurabena Simpson
Roona Sinha
Richard Ward
William T. Zempsky
Sara Ahola Kohut
Jennifer N. Stinson
author_sort Lauren Kelenc
collection DOAJ
description Abstract Background and objectives: Sickle cell disease (SCD) is hallmarked by recurrent episodes of severe acute pain and the risk for chronic pain. Remote peer support programs have been shown to effectively improve health outcomes for many chronic conditions. The objective of this study was to examine the feasibility and acceptability of an online peer mentoring program (iPeer2Peer program) for adolescents with SCD. Method: A waitlist pilot randomized controlled trial was conducted. Adolescents randomized to the intervention group were matched with trained peer mentors (19–25 years; successfully managing their SCD), consisting of up to 10 sessions of approximately 30-min video calls over a 15-week period. The control group received standard care. The primary outcomes were rates of accrual, withdrawal, and adherence to iP2P program/protocol, with secondary outcomes identifying topics of mentorship–mentee conversations through qualitative analysis. Results: Twenty-eight participants (14 intervention; 14 control) were randomized to the study (mean age: 14.8 ± 1.7 years; 57% female). Accrual rate was 80% (28/35) and withdrawal rate was 18% (5/28), with 28% (4/14) adhering to the iP2P program; however, 71% (10/14) of adolescents in the intervention completed at least one call. Based on content analysis of 75 mentor–mentee calls, three distinct content categories emerged: impact of SCD, self-management, transitioning to adulthood with SCD, and general topics. Conclusion: The results from this pilot study suggest that the current iteration of the iP2P SCD program lacks feasibility. Future research with the iP2P program can focus improved engagement via personalized mentoring, variable communication avenues, and an emphasis on gender.
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spelling doaj-art-df3e4c25b8c7419d9b7fafe48e4903682025-01-22T08:24:17ZengCambridge University PressJournal of Clinical and Translational Science2059-86612025-01-01910.1017/cts.2024.1170A pilot randomized controlled trial of the iPeer2Peer program in adolescents with sickle cell disease: A mixed method studyLauren Kelenc0Brittany Wiles1Fareha Nishat2Chitra Lalloo3Anya Nair4Craig Eling5Melanie Kirby-Allen6Ewurabena Simpson7Roona Sinha8Richard Ward9William T. Zempsky10Sara Ahola Kohut11Jennifer N. Stinson12https://orcid.org/0000-0002-9969-8052Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, CanadaChild Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, CanadaChild Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, CanadaChild Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, CanadaChild Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, CanadaJim Pattison’s Children’s Hospital, Saskatoon, Saskatchewan, CanadaDivision of Haematology/Oncology, The Hospital for Sick Children, Toronto, Ontario, CanadaDivision of Haematology/Oncology, Children’s Hospital of Eastern Ontario, Ottawa, Ontario, CanadaJim Pattison’s Children’s Hospital, Saskatoon, Saskatchewan, CanadaToronto General Hospital, University Health Network, Toronto, Ontario, Canada Department of Medicine, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, CanadaDivision of Pain & Palliative Medicine, Connecticut Children’s Medical Center, Hartford, CT, USA Department of Pediatrics, University of Connecticut School of Medicine, Farmington, CT, USAChild Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, Canada Division of Gastroenterology Hepatology and Nutrition, The Hospital for Sick Children, Toronto, Ontario, CanadaChild Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, Canada Lawrence S Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada Abstract Background and objectives: Sickle cell disease (SCD) is hallmarked by recurrent episodes of severe acute pain and the risk for chronic pain. Remote peer support programs have been shown to effectively improve health outcomes for many chronic conditions. The objective of this study was to examine the feasibility and acceptability of an online peer mentoring program (iPeer2Peer program) for adolescents with SCD. Method: A waitlist pilot randomized controlled trial was conducted. Adolescents randomized to the intervention group were matched with trained peer mentors (19–25 years; successfully managing their SCD), consisting of up to 10 sessions of approximately 30-min video calls over a 15-week period. The control group received standard care. The primary outcomes were rates of accrual, withdrawal, and adherence to iP2P program/protocol, with secondary outcomes identifying topics of mentorship–mentee conversations through qualitative analysis. Results: Twenty-eight participants (14 intervention; 14 control) were randomized to the study (mean age: 14.8 ± 1.7 years; 57% female). Accrual rate was 80% (28/35) and withdrawal rate was 18% (5/28), with 28% (4/14) adhering to the iP2P program; however, 71% (10/14) of adolescents in the intervention completed at least one call. Based on content analysis of 75 mentor–mentee calls, three distinct content categories emerged: impact of SCD, self-management, transitioning to adulthood with SCD, and general topics. Conclusion: The results from this pilot study suggest that the current iteration of the iP2P SCD program lacks feasibility. Future research with the iP2P program can focus improved engagement via personalized mentoring, variable communication avenues, and an emphasis on gender. https://www.cambridge.org/core/product/identifier/S2059866124011701/type/journal_articleOnlinepeer supportfeasibilityadolescentsickle cell diseaseself-management
spellingShingle Lauren Kelenc
Brittany Wiles
Fareha Nishat
Chitra Lalloo
Anya Nair
Craig Eling
Melanie Kirby-Allen
Ewurabena Simpson
Roona Sinha
Richard Ward
William T. Zempsky
Sara Ahola Kohut
Jennifer N. Stinson
A pilot randomized controlled trial of the iPeer2Peer program in adolescents with sickle cell disease: A mixed method study
Journal of Clinical and Translational Science
Online
peer support
feasibility
adolescent
sickle cell disease
self-management
title A pilot randomized controlled trial of the iPeer2Peer program in adolescents with sickle cell disease: A mixed method study
title_full A pilot randomized controlled trial of the iPeer2Peer program in adolescents with sickle cell disease: A mixed method study
title_fullStr A pilot randomized controlled trial of the iPeer2Peer program in adolescents with sickle cell disease: A mixed method study
title_full_unstemmed A pilot randomized controlled trial of the iPeer2Peer program in adolescents with sickle cell disease: A mixed method study
title_short A pilot randomized controlled trial of the iPeer2Peer program in adolescents with sickle cell disease: A mixed method study
title_sort pilot randomized controlled trial of the ipeer2peer program in adolescents with sickle cell disease a mixed method study
topic Online
peer support
feasibility
adolescent
sickle cell disease
self-management
url https://www.cambridge.org/core/product/identifier/S2059866124011701/type/journal_article
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