BEYOND CLINICAL OUTCOMES: A PATIENT AND FAMILY CO-CREATED VALUE FRAMEWORK TO CAPTURE THE FULL IMPACT OF CHRONIC CHILDHOOD DISEASE
Author(s)
Brittany Gerber, MA1, Gillian R. Currie, PhD1, Jaslene Atwal, Parent Partner1, Sam Atwal, Parent Partner1, John Bang, Patient Partner1, Kayla Caddy, Patient Partner1, Lisa George, Parent Partner1, Anna Goncharova, Parent Partner1, Morgan Harris, Patient Partner1, Janna Hart, Parent Partner1, Betts MacDonald, Parent Partner1, Lauren McClinton, Patient Partner1, Trish Snyder, Parent Partner1, Natasha Trehan, Patient Partner1, Alejandra Van Dusen, Patient Partner1, Erik Van Dusen, Parent Partner1, Kira Young, Patient Partner1, Jennifer Wilson, BA2, Deborah A. Marshall, PhD1.
1University of Calgary, Calgary, AB, Canada, 2Cassie+Friends, Vancouver, BC, Canada.
1University of Calgary, Calgary, AB, Canada, 2Cassie+Friends, Vancouver, BC, Canada.
OBJECTIVES: Studies assessing the socioeconomic burden of chronic childhood disease typically measure healthcare system costs and sometimes lost productivity. Studies evaluating treatments primarily measure functional and clinical outcomes, and occasionally health-related quality-of-life measures. But patients and families are also impacted by hidden burdens not typically captured: caregiver strain, and loss of quality-of-life, education and other opportunities. To fully measure and quantify these hidden impacts, we must first comprehensively identify them. We applied a co-creation approach to develop a comprehensive framework to capture the many ways that juvenile idiopathic arthritis (JIA) impacts children and families.
METHODS: We collaborated with 7 patient and 8 parent research partners from across Canada, and Cassie+Friends, a national patient organization. The framework was iteratively co-created via a series of collaborative online workshops. We invited the partners to reflect on JIA’s impact and co-created an initial list using discussions and interactive whiteboards. The impacts were organized into preliminary categories and subcategories and refined collaboratively. After reflective review and cumulative input over time, we finalized the framework.
RESULTS: The framework captures impacts across seven areas, including impacts to work and education, time and money spent, day-to-day activities, diagnosis and disease management, mental health, the family, as well as "other" (future worries, learning advocacy, and resilience and growth). Notably, impacts vary over time and intersectionalities magnify them (e.g., income, geographic distance from care, cultural factors).
CONCLUSIONS: We comprehensively captured impacts of JIA on patients and families, highlighting impacts across areas of life and lifespan. This innovative co-creation approach helps ensure the framework truly reflects the patient and family experience and is a model for other disease areas. The framework is generalizable to other rare, chronic, and/or complex childhood diseases. This is a critical first step towards comprehensive and consistent measurement of the socioeconomic impact of rare, chronic and/or complex childhood diseases.
METHODS: We collaborated with 7 patient and 8 parent research partners from across Canada, and Cassie+Friends, a national patient organization. The framework was iteratively co-created via a series of collaborative online workshops. We invited the partners to reflect on JIA’s impact and co-created an initial list using discussions and interactive whiteboards. The impacts were organized into preliminary categories and subcategories and refined collaboratively. After reflective review and cumulative input over time, we finalized the framework.
RESULTS: The framework captures impacts across seven areas, including impacts to work and education, time and money spent, day-to-day activities, diagnosis and disease management, mental health, the family, as well as "other" (future worries, learning advocacy, and resilience and growth). Notably, impacts vary over time and intersectionalities magnify them (e.g., income, geographic distance from care, cultural factors).
CONCLUSIONS: We comprehensively captured impacts of JIA on patients and families, highlighting impacts across areas of life and lifespan. This innovative co-creation approach helps ensure the framework truly reflects the patient and family experience and is a model for other disease areas. The framework is generalizable to other rare, chronic, and/or complex childhood diseases. This is a critical first step towards comprehensive and consistent measurement of the socioeconomic impact of rare, chronic and/or complex childhood diseases.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PCR232
Topic
Patient-Centered Research
Topic Subcategory
Patient Engagement
Disease
Musculoskeletal Disorders (Arthritis, Bone Disorders, Osteoporosis, Other Musculoskeletal), Pediatrics, Rare & Orphan Diseases