Reflections on youth partnership in a randomized controlled trial of an intervention to optimize transition from pediatric to adult care in inflammatory bowel disease
Background: Patient engagement allows for developing health interventions and research studies that align with the needs of people living with chronic diseases. Actively involving people with lived experience as partners in the design and governance of interventional trials is gaining prominence. Ho...
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Elsevier
2025-01-01
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| Series: | Health Care Transitions |
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| Online Access: | http://www.sciencedirect.com/science/article/pii/S2949923225000170 |
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| author | Brooke Allemang, PhD, MSW, RSW Ashleigh Miatello, MA Pranshu Maini Joshua Eszczuk Claudia Tersigni, MSc Samantha Micsinszki, PhD Sneha Dave Natasha Bollegala, MD, MSc, FRCPC Nancy Fu, MD, MHSc Kate Lee, PhD, MBA Samantha J. Anthony, PhD, MSW, RSW Melanie Barwick, PhD Eric I. Benchimol, MD, PhD |
| author_facet | Brooke Allemang, PhD, MSW, RSW Ashleigh Miatello, MA Pranshu Maini Joshua Eszczuk Claudia Tersigni, MSc Samantha Micsinszki, PhD Sneha Dave Natasha Bollegala, MD, MSc, FRCPC Nancy Fu, MD, MHSc Kate Lee, PhD, MBA Samantha J. Anthony, PhD, MSW, RSW Melanie Barwick, PhD Eric I. Benchimol, MD, PhD |
| author_sort | Brooke Allemang, PhD, MSW, RSW |
| collection | DOAJ |
| description | Background: Patient engagement allows for developing health interventions and research studies that align with the needs of people living with chronic diseases. Actively involving people with lived experience as partners in the design and governance of interventional trials is gaining prominence. However, there is a dearth of literature exploring the processes and procedures of patient partnership in various stages of randomized controlled trials (RCTs) with adolescents and young adults (AYAs) with inflammatory bowel disease (IBD), specifically. Methods: This reflective viewpoint outlines how AYA patient partners were involved in a RCT of an intervention to optimize transition from pediatric to adult care in IBD through a Youth Advisory Panel. To achieve this objective, we: i) gathered information from eight members of the study team via virtual discussions, ii) reflected on our experiences collaborating with patient partners in the RCT, and iii) reviewed relevant documents, including meeting minutes. Discussion transcripts, reflections, and documents were reviewed by two academic researchers and one AYA patient partner to identify the varying levels of involvement among AYA patient partners in the trial. The engagement strategies implemented to maximize the translational impact of the multimodal intervention and inform patient-centered care across various stages of the RCT were also examined. Results: The processes, outputs and impacts of AYAs’ contributions in priority setting and planning, intervention design and refinement, study execution, dissemination, and post-trial intervention implementation and dissemination were identified. AYA patient partner motivations for involvement in the RCT and key learnings from this partnership were uncovered. Conclusion: AYA patient partners’ contributions to the RCT were impactful, from study conceptualization to dissemination. Their involvement ensured the intervention's relevance, usability, and youth-friendliness, informed data analysis, and enhanced knowledge translation through co-creation. Future work in this field could involve evaluating the impact of patient engagement on AYA patient partners, research teams, and research outcomes in RCTs. |
| format | Article |
| id | doaj-art-de6da1402f74498caaa6f6ffc25b54ca |
| institution | DOAJ |
| issn | 2949-9232 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Health Care Transitions |
| spelling | doaj-art-de6da1402f74498caaa6f6ffc25b54ca2025-08-20T03:17:18ZengElsevierHealth Care Transitions2949-92322025-01-01310011110.1016/j.hctj.2025.100111Reflections on youth partnership in a randomized controlled trial of an intervention to optimize transition from pediatric to adult care in inflammatory bowel diseaseBrooke Allemang, PhD, MSW, RSW0Ashleigh Miatello, MA1Pranshu Maini2Joshua Eszczuk3Claudia Tersigni, MSc4Samantha Micsinszki, PhD5Sneha Dave6Natasha Bollegala, MD, MSc, FRCPC7Nancy Fu, MD, MHSc8Kate Lee, PhD, MBA9Samantha J. Anthony, PhD, MSW, RSW10Melanie Barwick, PhD11Eric I. Benchimol, MD, PhD12Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada; Office of Patient, Family, and Community Engagement, The Hospital for Sick Children, Toronto, Canada; Factor-Inwentash Faculty of Social Work, University of Toronto, Toronto, Canada; Correspondence to: The Hospital for Sick Children, 555 University Avenue, Toronto, ON M5G 1×8, Canada.Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, CanadaChild Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, CanadaFaculty of Kinesiology, University of Alberta, Edmonton, CanadaSchulich School of Medicine and Dentistry, Western University, London, CanadaSchool of Rehabilitation Science, McMaster University, Hamilton, Canada; CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, CanadaGeneration Patient, United StatesDivision of Gastroenterology, Department of Medicine, Women’s College Hospital, University of Toronto, Toronto, CanadaDivision of Gastroenterology, Department of Medicine, University of British Columbia, Vancouver, CanadaCrohn’s and Colitis Canada, Toronto, CanadaChild Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada; Factor-Inwentash Faculty of Social Work, University of Toronto, Toronto, CanadaChild Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada; Department of Psychiatry, University of Toronto, Toronto, Canada; Dalla Lana School of Public Health, University of Toronto, Toronto, CanadaChild Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada; Division of Gastroenterology, Hepatology and Nutrition, SickKids Inflammatory Bowel Disease Centre, The Hospital for Sick Children, Toronto, Canada; Department of Paediatrics and Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada; ICES, Toronto, CanadaBackground: Patient engagement allows for developing health interventions and research studies that align with the needs of people living with chronic diseases. Actively involving people with lived experience as partners in the design and governance of interventional trials is gaining prominence. However, there is a dearth of literature exploring the processes and procedures of patient partnership in various stages of randomized controlled trials (RCTs) with adolescents and young adults (AYAs) with inflammatory bowel disease (IBD), specifically. Methods: This reflective viewpoint outlines how AYA patient partners were involved in a RCT of an intervention to optimize transition from pediatric to adult care in IBD through a Youth Advisory Panel. To achieve this objective, we: i) gathered information from eight members of the study team via virtual discussions, ii) reflected on our experiences collaborating with patient partners in the RCT, and iii) reviewed relevant documents, including meeting minutes. Discussion transcripts, reflections, and documents were reviewed by two academic researchers and one AYA patient partner to identify the varying levels of involvement among AYA patient partners in the trial. The engagement strategies implemented to maximize the translational impact of the multimodal intervention and inform patient-centered care across various stages of the RCT were also examined. Results: The processes, outputs and impacts of AYAs’ contributions in priority setting and planning, intervention design and refinement, study execution, dissemination, and post-trial intervention implementation and dissemination were identified. AYA patient partner motivations for involvement in the RCT and key learnings from this partnership were uncovered. Conclusion: AYA patient partners’ contributions to the RCT were impactful, from study conceptualization to dissemination. Their involvement ensured the intervention's relevance, usability, and youth-friendliness, informed data analysis, and enhanced knowledge translation through co-creation. Future work in this field could involve evaluating the impact of patient engagement on AYA patient partners, research teams, and research outcomes in RCTs.http://www.sciencedirect.com/science/article/pii/S2949923225000170AdolescentsInflammatory bowel diseasePatient engagementPatient-oriented researchTransition to adult careYoung adults |
| spellingShingle | Brooke Allemang, PhD, MSW, RSW Ashleigh Miatello, MA Pranshu Maini Joshua Eszczuk Claudia Tersigni, MSc Samantha Micsinszki, PhD Sneha Dave Natasha Bollegala, MD, MSc, FRCPC Nancy Fu, MD, MHSc Kate Lee, PhD, MBA Samantha J. Anthony, PhD, MSW, RSW Melanie Barwick, PhD Eric I. Benchimol, MD, PhD Reflections on youth partnership in a randomized controlled trial of an intervention to optimize transition from pediatric to adult care in inflammatory bowel disease Health Care Transitions Adolescents Inflammatory bowel disease Patient engagement Patient-oriented research Transition to adult care Young adults |
| title | Reflections on youth partnership in a randomized controlled trial of an intervention to optimize transition from pediatric to adult care in inflammatory bowel disease |
| title_full | Reflections on youth partnership in a randomized controlled trial of an intervention to optimize transition from pediatric to adult care in inflammatory bowel disease |
| title_fullStr | Reflections on youth partnership in a randomized controlled trial of an intervention to optimize transition from pediatric to adult care in inflammatory bowel disease |
| title_full_unstemmed | Reflections on youth partnership in a randomized controlled trial of an intervention to optimize transition from pediatric to adult care in inflammatory bowel disease |
| title_short | Reflections on youth partnership in a randomized controlled trial of an intervention to optimize transition from pediatric to adult care in inflammatory bowel disease |
| title_sort | reflections on youth partnership in a randomized controlled trial of an intervention to optimize transition from pediatric to adult care in inflammatory bowel disease |
| topic | Adolescents Inflammatory bowel disease Patient engagement Patient-oriented research Transition to adult care Young adults |
| url | http://www.sciencedirect.com/science/article/pii/S2949923225000170 |
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