Background & Aims

Chronic pain is prevalent among youth (King et al., 2011) and can lead to persistent pain problems into adulthood (Walker et al., 2010). However, the majority of chronic pain research has focused on pediatric and adult populations, with little research focused specifically on the transition period of young adulthood (Murray et al., 2022). Understanding the needs of young adults (YAs) in chronic pain treatment is critically important given increased vulnerabilities during this developmental period, such as increases in risk taking behaviors and changes in access to healthcare (Rosenbloom et al., 2017). A pivotal change in healthcare access and use during this developmental period is in the transition of care from pediatric to adult healthcare systems. This study sought to investigate the experiences of YAs with chronic pain in transitioning their care from a pediatric pain management clinic to adult pain care.

Methods

YAs (aged 18-30) with chronic pain who had attempted to transition their pain care from a pediatric pain management program in an academic medical setting to adult pain management services were invited to participate in semi-structured qualitative interviews. These interviews explored YAs’ needs regarding their pain care as they entered emerging adulthood and their experiences (e.g., barriers, facilitators, expectations) as they made the transition from pediatric to adult pain care. Interviews were analyzed using inductive reflexive thematic analysis.

Results

Twelve YAs (mean age=21; age range=18-25; 10 female; 8 white) participated. YAs described healthcare transition (HCT) as an uncertain process influenced by system-level challenges. For some YAs, HCT was characterized by fears about how leaving pediatric care would impact their access to pain care, particularly after a lengthy journey of invalidation and building trust with pediatric providers. Some young people expressed grief related to losing the pediatric team who “had been there through it all”, including health challenges, life phases, and even traumatic events. Transition was perceived as akin to “starting all over again”, including having to re-tell their stories of their pain journeys. For others, HCT represented renewed hope for novel pain treatments. In terms of HCT planning, YAs discussed factors, including timing, other transitions (school, other medical needs) and their readiness for independently managing their healthcare, as critically important.

Conclusions

This study provides important insights into YAs’ experiences and needs through HCT from their own perspectives. At this time, for many YAs, HCT is anticipated and experienced as a challenging process of uncertainty and instability. Findings highlight that young adulthood is a unique stage of development and, as such, requires unique support. Future research may include the development of skills-based self-management interventions as well collaborative planning of HCT with broader consideration of developmental milestones and transitions during this period.

References

King, S., Chambers, C. T., Huguet, A., MacNevin, R. C., McGrath, P. J., Parker, L., & MacDonald, A. J. (2011). The epidemiology of chronic pain in children and adolescents revisited: a systematic review. Pain, 152(12), 2729-2738.

Murray, C., de la Vega, R., Murphy, L., Kashikar-Zuck, S., Palermo, T. (2022). The prevalence of chronic pain in young adults: a systematic review and meta-analysis. PAIN 163(9):p e972-e984.

Rosenbloom, B. N., Rabbitts, J. A., & Palermo, T. M. (2017). A developmental perspective on
the impact of chronic pain in late adolescence and early adulthood: Implications for assessment and intervention. Pain, 158(9), 1629-1632.

Walker, L. S., Dengler-Crish, C. M., Rippel, S., & Bruehl, S. (2010). Functional abdominal pain
in childhood and adolescence increases risk for chronic pain in adulthood. Pain, 150(3),
568-572.

Presenting Author

Alexandra Neville

Poster Authors

Alexandra Neville

PhD

Stanford University

Lead Author

E-mail

Kimberly Brown

MA

Palo Alto University

Lead Author

E-mail

Olivia Sokol

MA

Lead Author

E-mail

Anya Griffin

PhD

Lead Author

E-mail

Ashley Dunn

MPH

Stanford Medicine Children’s Health Center for IBD and Celiac Disease

Lead Author

E-mail

Heather Poupore-King

Stanford School of Medicine

Lead Author

E-mail

Albert Kwon

MD

Lead Author

E-mail

Amanda Feinstein

PhD

Lead Author

E-mail

Topics

  • Pain in Special Populations: Adolescents