Healthcare transition among young adults with childhood-onset chronic pain: a mixed methods study and proposed framework
Open accessAbstract
Chronic pain extends from childhood to adulthood for many young people. The transition from pediatric to adult care is a critical, yet understudied, healthcare task facing young adults with chronic pain. The aims of this observational, sequential mixed methods study were to 1) document the healthcare transition status of young adults with chronic pain (Stage 1, quantitative aim), 2) examine young adults' perspectives of barriers and facilitators of healthcare transition (Stage 2, qualitative aim), and 3) integrate findings to construct a theoretical framework of healthcare transition. A cohort was identified with childhood chronic pain and prior care in one of 15 multidisciplinary pediatric pain clinics across the United States and Canada. Approximately 6 years later, 189 young adults (M age = 21.0; age range = 18-24; 81.5% female) from this cohort with continuing chronic pain completed surveys for Stage 1, and a subsample (n = 17) completed qualitative interviews for Stage 2. Quantitative findings demonstrated that young adults may experience lapses in care, with 41.8% indicating they had not transitioned to adult pain services. Qualitative analysis revealed young adults experienced significant barriers (eg, abrupt departure from pediatric care) as well as facilitators (eg, acceptance of pain prognosis) of healthcare transition. Quantitative and qualitative findings were integrated to construct a healthcare transition framework for chronic pain, which highlights transition as a complex process involving multiple pathways, outcomes, and stakeholders. Advancements in research and practice are needed to develop transition services to bridge gaps in care and optimize health outcomes for young people with chronic pain. PERSPECTIVE: This mixed-methods study demonstrated that 41.8% of young adults with chronic pain experience lapses in adult-centered pain care and identified key barriers and facilitators to successful healthcare transition. Findings were integrated to construct the first healthcare transition framework for youth with chronic pain.
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Up to 40% of young adults with chronic pain that has persisted since childhood are not engaged with adult pain services.
“Up to 40% of young adults with chronic pain that has persisted since childhood are not engaged with adult pain services, 15”
From Internet-Delivered Psychological Pain-Management for Young Adults With Chronic Pain: An Investigation of Clinical Trial Data (2024) · cites this paper as [15]
The Results (Healthcare transition) report that 41.8% of young adults with childhood-onset chronic pain were not engaged in adult-centered healthcare services for pain. This supports the substance of the claim, but 41.8% is slightly above the stated ceiling of “up to 40%." (LLM, conf=0.84)
Experimental — accuracy not yet measuredYoung adults with chronic pain report symptom invalidation and helplessness when consulting adult primary and specialty care providers due to their age.
“However, likely unique to this emerging adult population, they report that due to their age, they experience symptom invalidation and helplessness when consulting adult primary and specialty care providers.6,8,14,15”
From Internet-Delivered Psychological Pain-Management for Young Adults With Chronic Pain: An Investigation of Clinical Trial Data (2024) · cites this paper as [15]
The Results (Healthcare transition; page unavailable) report that young adults perceived adult providers as invalidating and described disappointment and hopelessness after repeated attempts to find one who would not dismiss their pain. The paper does not say that providers invalidated their symptoms because of their age. Its quantitative results list primary and specialty care as services used, but do not establish that the reported invalidation occurred in both settings. (LLM, conf=0.86)
Experimental — accuracy not yet measuredThe proportion of young adults accessing psychological care (33%) is higher than previous findings in North America (19%), possibly due to how individual and group mental healthcare is partially subsidised by the government in Australia.
“The proportion of young adults accessing psychological care is higher than previous findings in North America (33% vs 19%), 15 possibly due to how individual and group mental healthcare is partially subsidised by the government in Australia.53”
From Internet-Delivered Psychological Pain-Management for Young Adults With Chronic Pain: An Investigation of Clinical Trial Data (2024) · cites this paper as [15]
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- Authors
- Murray, C. B., Murphy, L. K., Jordan, A., Owens, M. T., McLeod, D., & Palermo, T. M.
- Affiliations
- University of Washington (US)
- Seattle Children's Research Institute (US)
- University of Bath (GB)
- Indiana University School of Medicine (US)
- Corresponding author
- Murray, Caitlin B.
- Venue
- The Journal of Pain
- Publisher
- Elsevier BV
- Published
- 2022-08
- Volume
- 23
- Issue
- 8
- Pages
- 1358-1370
- ISSN
- 1526-5900 (ISSN-L)
- PMC
- PMC12169605
- OpenAlex
- W4221098379
- Cited by
- 21
- References
- 52
- Citations by year
- 2026: 4 · 2025: 4 · 2024: 6 · 2023: 5 · 2022: 2
- FWCI
- 5.37
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- Locations
- Journal of Pain (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Pure (University of Bath) (submittedVersion, cc-by-nc-nd)
- IUScholarWorks (Indiana University) (submittedVersion)
- Funders
- National Institute of Child Health and Human Development (F32 HD097807)
- National Institutes of Health
- Topics
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Pediatric Pain Management Techniques
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Keywords
- transition to adult care, young adults, transition framework, transition services, continuity of care
- MeSH terms
- Adolescent, Adult, Canada, Child, Female, Humans, Male, Qualitative Research, Young Adult, Chronic Pain, Transition to Adult Care
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