Background & Aims
Chronic pain impacts 11-38% of children and will continue into adulthood for up to half of them. Transition of pain management to adult care is crucial and at high risk of interruption. Lapses occur given lack of a transition pathway, complex care coordination, fluctuating symptoms, and stigma. Yet, the transition experience for these youth is poorly characterized. Only 25-30% of youth with other chronic medical issues are prepared to move to adult care (transition readiness). This led to development of transition interventions, which have improved transition readiness, symptoms, care continuity, and health outcomes in these populations. Existing interventions may not apply to youth with chronic pain given their unique needs. As a first step, our aims are to determine the prevalence of transition readiness among adolescents with chronic pain in the U.S. in a nationally representative sample and estimate the association of readiness with sociocultural and health system characteristics.
Methods
2,584 adolescents age 14-17 with chronic pain (and without a condition with likely transition to adult care) were identified by parent report in the 2021 and 2022 National Survey of Children’s Health. Chronic pain was defined as “frequent or chronic difficulty with repeated or chronic physical pain during the past 12 months”. A conceptual model of transition for youth with chronic pain informed covariate choice (demographics, general and psychological health, insurance, shared decision making, and medical home). We used complex survey weighting to estimate descriptive characteristics. We estimated unadjusted and multivariable adjusted prevalence ratios (PRs and aPRs) using Poisson regression models. Precision of PRs was estimated with 95% confidence intervals (CI).
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Results
23.9% of adolescents with chronic pain met all criteria for adequate transition readiness. Adolescents had significantly increased prevalence of readiness if they were older (age 15-17 PR 1.8, 95% CI 1.3, 2.6), female sex (PR 1.6, 95% CI 1.2,2.2), and experience shared decision making (aPR 1.7, 95% CI 1.1, 2.8). As compared to White adolescents those who were Asian (PR 0.4, 95% CI: 0.2, 0.9) and multi-racial adolescents (PR 0.6, 95% CI: 0.4, 0.9) were less likely to meet criteria for readiness; as were those with a developmental condition (PR 0.7 95% CI 0.5, 0.9). 41.2% of adolescents experienced depression, 31.5% experienced anxiety, and fewer than half met criteria for flourishing. Only 39.1% of adolescents met criteria for adequate insurance. About one third met all five criteria for a medical home, though most met criteria for all subcomponents except effective care coordination (33.4 %). Most experienced adequate shared decision making (78.5%).
Conclusions
Only one quarter of adolescents with chronic pain had adequate transition readiness, establishing the need for improved transitional care in this population. Readiness was lower among adolescents who were male, Asian or multiracial, with a developmental condition, and who did not experience shared decision making. Access to multidisciplinary pain care may be limited by lack of effective care coordination and inadequate insurance. Poor mental health may impact delivery of transition interventions. Future work should explore pain-specific factors related to transition not measured in this study (e.g. pain acceptance, catastrophizing, stigma, and differing transition pathway) to inform development and implementation of transition interventions.
This study establishes the need for improved clinical transition preparedness in youth with pain. Future work should determine if (and how) existing transition interventions need to be tailed for youth with pain. These transition interventions will directly impact patient care through patient and provider education, clinical implementation of transition preparation, screening, and monitoring, and/or transition clinics. Our findings indicate that medical systems factors should be addressed such as increasing the proportion of patients with insurance, improving communication and decision making with families, and improving rates of youth with medical homes (particularly effective care coordination). Even before formal interventions and systems level interventions can occur, this highlights the need for providers to address transition planning and skill building with adolescents who live with chronic pain.
References
Huckerby L, McDonagh JE, Lee RR. Growing up with chronic pain: a systematic review of the evidence in transitional care for young people with chronic pain. Rheumatol Adv Pract. 2023;7(Suppl 1):i19-i25.
Lebrun-Harris LA, McManus MA, Ilango SM, et al. Transition planning among US youth with and without special health care needs. Pediatrics. 2018;142(4)
McKenzie RB, Sanders L, Bhattacharya J, Kate Bundorf M. Health Care System Factors Associated with Transition Preparation in Youth with Special Health Care Needs. Popul Health Manag. 2019;22(1):63-73.
Murray CB, De La Vega R, Murphy LK, Kashikar-Zuck S, Palermo TM. The prevalence of chronic pain in young adults: A systematic review and meta-analysis. Pain. 2022;163(9):E972-E984.
Murray CB, Murphy LK, Jordan A, Owens MT, McLeod D, Palermo TM. Healthcare Transition Among Young Adults With Childhood-Onset Chronic Pain: A Mixed Methods Study and Proposed Framework. J Pain. 2022;23(8):1358-1370.