Transition of Care Readiness Among Adolescents with Chronic Pain Between 2021–2022 in a Nationally Representative Sample

Abstract

Chronic pain impacts 11–33% of children and will continue into adulthood for over half of them. Transition of pain management to adult care is crucial given high risk of interruption of care which is associated with subsequent poor medical, social, and vocational outcomes. Yet the transition experience for these youth is poorly characterized. Using a sample from the 2021 and 2022 National Survey of Children’s Health (conducted by parent report), we aimed to determine the prevalence of transition readiness among adolescents with chronic pain in the U.S. and estimate the association of readiness with biopsychosocial-cultural and health system characteristics. Of the 2,584 adolescents aged 14–17 with chronic pain, 23.9% of adolescents met criteria for transition readiness. Using Poisson regression, we determined those more likely to meet criteria were older (PR 1.8 95%CI: 1.3, 2.6), female (PR 1.6 95% CI: 1.2, 2.2), White (Asian PR 0.4, 95% CI: 0.2, 0.9, Multi-racial PR 0.6 95% CI: 0.4, 0.9), and experienced shared decision making (aPR 1.7 95% CI: 1.1, 2.8). Fewer than half met criteria for medical home, effective care coordination, and adequate insurance. Poor mental health emerged as a concern with high levels of anxiety and/or depression (48%) and low levels of flourishing (42%). This is an important first step in demonstrating low transition readiness among adolescents with chronic pain and identifying mental health and healthcare continuity concerns. Future research should incorporate stakeholder perspectives and investigate pain specific factors relevant to transition readiness and investigate how readiness relates to transition outcomes.

Perspective:

This article establishes low readiness to transition from pediatric to adult healthcare among adolescents with chronic pain and identifies disparities in readiness. Poor mental health and inadequate healthcare access were identified as factors which may impact transition intervention delivery. These findings can guide development and implementation of a transition intervention.

Introduction

Chronic pain (pain lasting >3 months) is a significant pediatric health issue impacting 1 in 5 youth,¹ costing $19.5 billion annually in the United States, and continuing into adulthood for up to half.^2,3 Inadequate pain management during adolescence can disrupt crucial decisions and have lasting medical and social impacts into adulthood.^3,4 Pain management is often interrupted with aging out of pediatric care, relocation, and lack of clear transition pathway.^1,5–13 Chronic pain in young adulthood is often managed by primary care or specialty providers, and may be hindered by lack of formal chronic pain training and difficulty of coordinating multidisciplinary care.^1,5 Transition to adult pain clinics is complicated in that young adults may not have access to specialized pain care; moreover, transition to a pain clinic may not be necessary for all patients.⁶ Transition to adult services has been identified as a priority by adolescents with chronic pain,^{1,5–8,10,11,14} providers,^10,12,15 and the research community,^{1,3,5,6,9–13,15,16} yet scant research and guidance exists, leaving these youth vulnerable to lapses in care.

Transition from pediatric to adult care is an important task of adolescence for which only 19% of youth are prepared for.¹⁷. Transition readiness describes preparedness to shift from pediatric to adult health provider(s) and manage one’s own health needs.^17,18 Nationally, readiness to transition to adult care remains consistently higher among youth with special health care needs¹⁹ (including those within specific illness populations)^20–23 as compared to youth without. No studies to date have quantified transition readiness (or disparities in readiness) among youth with chronic pain. Lack of transition readiness is associated with lapses in care, adverse health outcomes, lower quality of life and higher symptom severity.^24–26 Higher readiness has been observed among youth who are: older^17,27–34, female^28,31,33,34, White^27,28,33, without a developmental condition³⁵, and who have higher family income.^27–29,31 Positive interaction with health systems has emerged as important, with higher rates of readiness for those who report better interactions with providers, comprehensive and available primary care, and adequate insurance.^30,31 Concerns unique to the pain experience expressed by youth with pain include fluctuating nature of pain symptoms, invalidation of pain symptoms, and provider stigma.^{1,5–8,10–12,14} A qualitative study among young adults found pain acceptance facilitated transition to adult care though increased ownership of health.³⁶

Promisingly, implementation of structured transition interventions increases readiness and positive transition outcomes in other chronic illness populations.^1,37,38 Interventions may include education, care coordination, planning for and assistance with transfer, and integration into adult care.^{20,25,26,29,37–39} Some interventions employ general assessments and interventions (e.g. Transition Readiness Assessment Questionnaire) and others have used condition specific adaptations.^9,15,40,41 To our knowledge, interventions have not yet been implemented among or evaluated in youth with chronic pain. Interventions used in other pediatric populations may not apply to this population given their unique needs. Murray et al proposed a conceptual model for transition of care specific to youth with chronic pain that identified pertinent biopsychosocial-cultural factors impacting readiness (environmental, demographic, health status, individual, family) as well as pain-specific concerns (e.g., pain acceptance), but elements of the model have not been empirically studied.⁵ Characterization of transition readiness and salient contextual factors is an important first step in informing and evaluating transition frameworks for youth with chronic pain.

The specific aims of this study were to 1) determine the prevalence of transition (of care) readiness among adolescents aged 14–17 with chronic pain in a nationally representative sample, and 2) estimate the association between biopsychosocial-cultural (e.g., age) and health care system characteristics (e.g., insurance status) with adequate transition readiness.

Methods

This was a cross-sectional study measuring transition of care readiness among adolescents with chronic pain using data captured in the 2021–2022 National Survey of Children’s Health (NSCH), available at https://www.childhealthdata.org. The NSCH is funded by the Health Resources and Services Administration’s Maternal and Child Health Bureau (HRSA MCHB) and is fielded by the US Census Bureau. NSCH is designed to provide national level data on the health and wellness of children 0–17 years of age in the US. All 50 states and the District of Columbia are represented, with each contributing between 1.5–4.0% of survey participants. Parents (or caregivers) of children selected for inclusion were the primary survey respondents; however, results are weighted to reflect the US population of children 0–17 years of age. Children 0–5 years of age and those with special health care needs were oversampled. Groups that have been historically minoritized were not oversampled. Surveys were conducted either on paper or online and in either English or Spanish per participant preference. All participants provided consent. Data are available to the public for free. The Institutional Review Board at the University of Washington deemed this study exempt from review. The Strengthening the Report of Observational Studies in Epidemiology (STROBE) reporting guidelines for cross-sectional analyses were followed.⁴² Neither patients nor the public was involved with study design, analysis, or writing of the manuscript.

Subjects included youth who are represented through parent responses in the 2021 and 2022 NSCH surveys. The final sample of the 2021–2022 NSCH contained 104,995 participants, however we only included adolescents (14–17 years of age) with chronic pain (defined below). We included ages 14–17 years consistent with previous work examining transition readiness.⁴³ We excluded adolescents with chronic pain who are likely to transition to adult specialty care for another medical condition (n=279) (which was determined by the authors clinical expertise). These included comorbid conditions of at least moderate severity: autoimmune disease (type 1 diabetes, celiac, and juvenile idiopathic arthritis), blood disorders (sickle cell disease, thalassemia, or hemophilia), epilepsy or seizure disorder, cerebral palsy, heart conditions, and cystic fibrosis. Given the nonspecific nature of the transition measure we chose to exclude these adolescents to avoid measuring transition readiness reflecting transition to adult subspecialty care for the comorbid condition. After survey weighting, our sample is nationally representative of adolescents 14–17 years of age with chronic pain (and without excluded comorbid conditions) living in the US as per NSCH’s design.

To identify respondents whose child suffered from chronic pain the following NSCH data item was used: “During the past 12 months, has this child had frequent or chronic difficulty with repeated or chronic physical pain, including headache or other back or body pain?” Children were classified as having chronic pain whose parents responded “Yes”. This measure of pediatric chronic pain has been used in several previous NSCH studies.^44,45

The outcome, (adequate) transition readiness, describes the extent to which an adolescent is prepared to transition to adult care, and is not pain (or condition) specific. Transition readiness is a Title V Maternal and Child Health Services Block Grant National Performance measure which we measured in accordance with the following NSCH methodology. Adolescents were classified as having adequate transition readiness if they meet all three criteria (by parent report): 1) If a discussion regarding transfer to an adult provider was needed it occurred, 2) their provider worked with the adolescent to take responsibility for their own health care needs and/or understand adult health care needs, and 3) the adolescent had time alone with their provider (Table 1).³⁰

Table 1.

Survey items used to measure transition of care readiness in the 2021–2022 National Survey of Children’s Health

Transition subcomponents	NSCH survey item	NSCH response options
Q1) If a discussion regarding transfer to an adult provider was needed it occurred	Do any of this child’s doctors or other health care providers treat only children?	Yes No (skip to Q2)
	If yes, have they talked with you about when this child will need to see doctors or other health care providers who treat adults?	Yes No
Q2) The adolescent’s provider worked with them to take responsibility for their own health care needs AND/OR understand adult health care needs	Has this child’s doctor or other health care provider actively worked with this child to: Understand the changes in health care that happen at age 18. For example, by understanding changes in privacy, consent, access to information, or decision-making?	Yes No Don’t know
	Has this child’s doctor or other health care provider actively worked with this child to: Gain skills to manage their health and health care. For example, by understanding current health needs, knowing what to do in a medical emergency, or taking medications they may need?	Yes No Don’t know
Q3) The adolescent had time alone with their provider at their last preventative visit	At their LAST medical care visit, did this child have a chance to speak with a doctor or other health care provider privately, without you or another caregiver in the room? (Note: Youth without preventive check-up in the past 12 months are coded as No.)	Yes No

Covariate selection was informed by our conceptual model for transition for adolescents with chronic pain which was developed from existing transition frameworks (see Figure 1).^5,37,39 Covariates fell into two categories: biopsychosocial-cultural characteristics (demographic features, health status, and psychological health) and health system characteristics (insurance status, shared decision making, and medical home).

Figure 1.

Conceptual model of transition of care continuum for adolescents with chronic pain. This study examined the portion of the model contained within the dashed box and assessed associations with the bolded biopsychosocial-cultural and health systems elements.

Biopsychosocial-cultural characteristics

Demographic characteristics included age (measured in years), sex (as measured in the survey: male or female), family socioeconomic status (SES, taking into account number of family members was calculated by the NSCH as a ratio of total family income and the federal poverty threshold (<100%, 100–199%, 200–399% or ≥400%)), race as captured by parent-report in the survey (American Indian or Alaskan Native alone (AIAN), Asian alone(Asian), Black or African American alone (Black), Native Hawaiian and other Pacific Islander alone (NHPI), White alone (White), or two or more races(multiracial), Hispanic ethnicity (yes or no), and household language (English, Spanish, or other). Gender was not assessed in the survey. Health status was assessed by parent report of adolescents’ overall health (excellent, very good, good, fair, or poor) and frequency and impact of functional impairment (if any). Individual characteristics reflecting the adolescents’ psychological health were divided into: mental health (presence of depression and/or anxiety), developmental condition (presence of developmental delay, autism spectrum disorder, Down syndrome, and/or intellectual disability), and individual flourishing⁴⁶ (Title V Maternal and Child Health Services Block Grant National Outcome Measure of curiosity about learning, self-regulation, and resilience.) Flourishing is met if caregivers respond “Always” or “Usually” to each of the following questions: “How often does this child: show interest and curiosity in learning new things, work to finish tasks they start, and (3) stay calm and in control when faced with a challenge?”.)

Health system characteristics

Insurance status was measured according to the NSCH standardized measure reflecting whether the family’s insurance met the adolescent’s needs (yes/no). We applied the NSCH definition of both having continuous insurance over the past 12 months and having current insurance adequate for the adolescent’s needs (benefits usually or always met needs and insurance usually or always allowed them to see needed providers, and out-of-pocket costs were either usually or always reasonable (or non-existent)). Shared decision making is defined as integrating a child and family’s values, goals, and concerns with available evidence about medical decisions and is associated with improved care.^47,48 Shared decision making is a NSCH indicator measurement (pertinent to those with a healthcare visit in the past 12 months) considered present when parents indicate providers always/usually (as opposed to sometimes/never): discussed a range of options, made it easy to raise concerns or disagree, and worked with families to make decisions. The medical home is a concept proposed by the American Academy of Pediatrics as the availability of comprehensive primary care and is a Title V Maternal and Child Health Services Block Grant National Performance Measure. This was measured using established NSCH methodology to generate a dichotomized composite variable consisting of five components (usual source of care, personal provider, obtaining referrals, family centered care, and effective care coordination) which was considered achieved if all pertinent components were met.²⁸ Pertinent to all children was having a usual source of care when sick (yes or no) and a personal doctor or nurse (always/usually versus sometimes/never). Obtaining referrals pertained to those needing referrals in the past 12 months and was met if parents indicated obtaining these was not a problem (versus a small or big problem). Family centered care pertained to children who had a visit in the past 12 months and met if parents indicated that their child’s provider spends enough time with them, listens carefully, is sensitive to family’s culture/values, provides enough information, and makes the family feel like partners. Effective care coordination pertains to families reporting needing more than two health-related medical, educational, or social services in the past 12 months and is met if parents respond “always” or “usually” (versus “sometimes” or “never”) receive sufficient help with care coordination, being very satisfied (versus somewhat or not satisfied) with communication among providers and between providers and other programs.

Statistical analyses were conducted with R Studio version 2022.12.0+353. Survey weights were applied according to the NSCH guidelines. The biopsychosocial-cultural and health systems composition of the sample population were characterized using weighted percentages and 95% confidence intervals (CI). Pairwise deletion was used to handle missing data. To address the primary aim, prevalence estimates and 95% CI of transition readiness in the sample were calculated using survey weighting by dividing the number of adolescents with chronic pain meeting adequate transition readiness by the total number of adolescents with chronic pain. Prevalence estimates and 95% CI were also calculated for all four transition subcomponents. For the primary and secondary aims we only excluded cases in which any of the transition readiness criteria were missing (n=114, 4.4%). To address the secondary aim, separate multivariable Poisson regression models were fit to estimate the adjusted and unadjusted prevalence ratios (aPR and PR) and corresponding 95% CIs for each biopsychosocial-cultural and health systems characteristic comparing those with adequate transition readiness to those without. These models were fit with the overall transition composite measure as the outcome, as well as with each of the four transition subcomponents as the outcome. To select confounders for inclusion in the models, variables plausibly associated with both the exposure of interest and outcome (transition readiness) were identified based on existing research. Each exposure of interest is listed with a priori adjustment factors in parenthesis: family SES (race, ethnicity, language), health status (family SES, language, insurance, medical home), mental health (health status), individual flourishing (age, sex, race, ethnicity), insurance (family SES), shared decision making (health status, developmental condition), and medical home (family SES, language, health status, developmental condition, insurance).^{5,9,13,16,18,28,46,49–51} Models estimating the association of the outcomes with age, sex, race, ethnicity, language, and developmental condition were not adjusted for confounders.

We also performed a post-hoc sensitivity analysis after our primary analysis showed that readiness did not increase with each year of age as previous research has demonstrated. We observed that among older adolescents the proportion of “don’t know” responses increased slightly for the two transition subcomponents with this as an option (provider discussed changing health care needs and provider discussed positive health choices), which may reflect parents’ lack of knowledge about transition of care discussions occurring with increasing adolescent age and autonomy. Thus, we decided to conduct a sensitivity analysis where we coded “don’t know” responses as meeting criteria for the subcomponent. We examined the overall prevalence of transition readiness as well as prevalence ratios and 95% CI for all biopsychosocial-cultural and health systems characteristics for overall transition readiness as well as the two individual transition components with “don’t know” response options.

Results

This sample included 2,584 adolescents 14 to 17 years of age with chronic pain. Biopsychosocial-cultural and health systems characteristics of the sample are presented in Table 2. Most adolescents were female, White, not of Hispanic or Latino origin, and spoke English (78.8%) or Spanish (18.3%) as a primary language at home. Parents reported 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 (43.4 %). Most experienced adequate shared decision making (78.5%).

Table 2.

Biopsychosocial-cultural and health systems characteristics of adolescents (age 14–17 years) with chronic pain in the United States, National Survey of Children’s Health, 2021–2022

Biopsychosocial-cultural characteristics	n (total=2584)	Weighted prevalence (%)ϖ
Demographics
Age (years)
14	522	23.3
15	612	26.3
16	725	25.8
17	725	24.6
Sex
Female	1613	64.4
Male	971	35.6
Family SES**
<100%	431	21.6
100–199%	512	25.6
200–399%	744	24.8
>=400%	897	24.1
Race
AIAN	40	2.3
Asian	96	3.3
Black	189	14.5
Multiracial	234	6.7
NHPI	24	1.6
White	2001	71.7
Ethnicity
Hispanic	435	32.7
Not Hispanic	2149	67.4
Language×
English	2390	78.8
Spanish	121	18.3
Other	58	2.9
Health status×
Overall health
Excellent	682	25.1
Very good	1003	38.6
Good	693	28.7
Fair	181	6.9
Poor	22	0.7
Frequency of functional impairment×
No health conditions	653	30.6
Never	530	23.5
Sometimes	1086	37
Usually	205	5.2
Always	101	3.7
Severity of functional impairment (n=1618)+×
Very little	671	47.3
Somewhat	736	41.9
A great deal	211	10.7
Psychological health
Mental health×
Either anxiety or depression	1405	47.5
Neither anxiety nor depression	1162	52.5
Developmental condition±×
None	2180	86
One or more	380	14
Individual flourishing×
No	1462	57.6
Yes	1086	42.4
Health systems characteristic
Adequate insurance
No	1101	60.9
Yes	872	39.1
Missing (24%)	611	--
Shared decision making (n=2332)
No	283	21.5
Yes	1160	78.5
Missing (38%)	889	--
Medical home×
No	1594	67.4
Yes	983	32.6
Subcomponents
Usual place for sick care×	2223	78.9
Regular provider×	2015	70.7
Family centered care+ (n=2334)×	1836	75.4
Referral+ (n=1125)×	785	74.4
Effective care coordination+ (n=1474)×	674	43.4

^ϖWeighted prevalence of complete cases, missing handled with pairwise deletion

^**Ratio of total family income and federal poverty threshold

^×Missing data <5%

^±Developmental delay, autism spectrum disorder, Down syndrome, and/or intellectual disability

⁺Only applied to those for whom it was pertinent

Overall transition readiness

Overall, 23.9% (95% CI 20.3, 28.0) of adolescents with chronic pain met all criteria for the outcome measure of adequate transition readiness (Table 3). The prevalence of overall transition readiness varied by several demographic and biopsychosocial-cultural characteristics of age, sex, race, presence of a developmental condition (Table 4). Shared decision making was the only health system characteristic associated with transition readiness (Table 5).

Table 3.

Weighted prevalence of transition readiness by biopsychosocial-cultural and health systems characteristics among adolescents (age 14–17 years) with chronic pain, National Survey of Children’s health, 2021–2022

		Transition readiness subcomponents
	Overall adequate transition readiness	Transition to adult care discussed	Alone with provider	Discussed positive health choices	Discussed changing healthcare needs
Characteristic		Weighted prevalence % (95% CI)
Entire sample	23.9 (20.3, 28.0)	23.4 (19.0, 27.9)	65.4 (61.3, 69.5)	68.8 (64.2, 73.3)	31.7 (27.9, 35.5)
Biopsychosocial-cultural characteristics
Demographics
Age (years)
14	15.2 (10.2, 20.2)	11.8 (6.0, 17.7)	58.7 (50.3, 67.0)	67.3 (59.8, 75.0)	26.5 (19.0, 34.0)
15	27.7 (17.8, 37.6)	22.8 (11.6, 34.0)	63.8 (55.3, 72.2)	76.2 (68.6, 83.9)	31.0 (23.1, 38.9)
16	26.9 (19.9, 34.0)	36.6 (27.3, 45.9)	65.8 (58.7, 72.9)	68.6 (59.0, 78.2)	36.5 (28.7, 44.2)
17	24.9 (19.1, 30.7)	24.1 (17.5, 30.8)	72.9 (65.7, 81.2)	62.3 (52.2, 72.4)	32.3 (24.6, 39.7)
Sex
Male	17 (13.0, 21.0)	19.9 (14.3, 25.5)	57.4 (51.0, 63.8)	66.2 (60.3, 72.1)	30.3 (24.5, 36.0)
Female	27.7 (22.3, 33.0)	25.6 (19.3, 31.9)	69.6 (64.5, 74.6)	70.2 (63.9, 76.5)	32.5 (27.4, 37.5)
Family SES**
<100%	22.0 (12.6)	12.3 (5.5, 19.2)	57.8 (47.4, 68.2)	63.2 (51.4, 75.0)	38.3 (28.3, 48.2)
100–199%	20.0 (12.9, 27.1)	13.9 (7.9, 19.9)	64.4 (54.7, 74.1)	65.8 (55.0, 76.5)	32.9 (24.1, 41.8)
200–399%	27.4 (19.6, 35.3)	30.7 (20.1, 41.4)	68.5 (61.4, 75.6)	69.6 (62.4, 76.8)	38.5 (22.7, 36.3)
>=400%	25.3 (20.8, 29.8)	29.8 (23.3, 36.4)	68.4 (62.7, 74.1)	76 (70.8, 81.1)	27.3 (22.1, 32.6)
Race
White	25.8 (21.1, 30.6)	28.2 (22.4, 34.0)	67.3 (62.6, 72.0)	68.7 (63.1, 74.3)	28.1 (23.9, 32.4)
Black	22.7 (13.4, 32.1)	14.9 (7.0, 22.8)	58.0 (46.1, 70.0)	67.3 (55.9, 78.8)	45.4 (33.9, 56.9)
AIAN	21.0 (0.6, 41.4)	2.9 (0.0, 7.2)	63.7 (34.9, 92.5)	82.1 (68.7, 95.4)	43.9 (19.4, 68.4)
Asian	10.4 (1.8, 18.9)	12.4 (1.8, 23.1)	59.3 (35.5, 83.1)	77.2 (58.9, 95.4)	48.7 (25.4, 72.0)
NHPI	8.0 (0, 21.7)	N/A	50.2 (7.4, 93.0)	46.6 (12.3, 81.0)	17.4 (0.3, 34.5)
Multi-racial	16.3 (10.1, 22.5)	12.2 (6.3, 18.2)	67.2 (55.8, 78.6)	69.4 (57.0, 81.7)	31.6 (19.6, 43.7)
Ethnicity
Not Hispanic	25.1 (21.7, 28.4)	23.1 (18.9, 27.3)	63.7 (59.5, 67.8)	71.8 (68.0, 75.6)	33.5 (29.6, 37.6)
Hispanic Language	21.5 (12.4, 30.6)	24.2 (12.9, 35.5)	69.5 (60.1, 78.9)	62.7 (51.7, 73.8)	27.8 (19.9, 35.8)
English	25.4 (22.1, 28.7)	22.6 (18.6, 26.6)	65.7 (61.8, 69.7)	71.5 (68.0, 75.1)	33.7 (29.9, 37.5)
Spanish	17.2 (2.9, 31.6)	26 (8.0, 43.9)	65.7 (49.5, 81.8)	56.7 (63.1, 74.4)	21 (1.4, 31.6)
Other	28.7 (2.7, 53.6)	39.1 (5.6, 72.5)	56.7 (30.5, 82.8)	53.2 (45.7, 92.4)	40.5 (16.7, 64.3)
Health status
Overall health
Excellent	24.8 (16.5, 33.1)	27.8 (16.4, 39.2)	64.8 (57.0, 72.6)	70.8 (63.7, 77.9)	31.1 (23.9, 38.3)
Very good	24.2 (19.2, 29.4)	23.1 (17.0, 29.2)	63.8 (57.8, 70.0)	71.6 (66.0, 77.2)	33.8 (28.1, 39.4)
Good	22.6 (14.5, 30.1)	20.5 (13.0, 28.0)	66.9 (58.1, 75.7)	62.8 (51.4, 74.3)	30.5 (22.1, 38.9)
Fair	24.6 (13.4, 35.7)	19.6 (8.3, 30.8)	69.7 (55.9, 89.4)	69.6 (56.3, 83.0)	29.6 (17.5, 41.6)
Poor	14.0 (0, 30.8)	32.3 (0.0, 68.0)	64.0 (28.4, 99.7)	77.0 (49.6, 100.0)	8.0 (0.0, 17.9)
Frequency of functional impairment
No health conditions	17.5 (12.2, 22.7)	20 (12.9, 27.1)	63.8 (56.2, 71.4)	63 (54.1, 72.0)	35.0 (27.2, 42.8)
Never	30.6 (19.9, 41.3)	33.8 (20.9, 46.8)	64.3 (54.9, 73.6)	65.3 (56.2, 74.3)	29.5 (21.7, 37.4)
Sometimes	25.4 (20.3, 30.5)	20.3 (14.8, 25.8)	68.2 (61.9, 74.5)	75.6 (68.0, 83.1)	30.2 (24.5, 35.9)
Usually	25.6 (14.7, 36.5)	20.5 (11.4, 29.6)	73.2 (64.0, 82.4)	74.9 (64.3, 85.4)	30.5 (18.9, 42.0)
Always	15.3 (3.9, 26.7)	24.6 (2.9, 46.2)	42.1 (21.8, 62.3)	62.7 (43.6, 81.8)	34.4 (12.4, 56.3)
Impact of functional impairment
Very little	25.0 (17.2, 32.8)	21 (14.0, 28.0)	68.2 (60.2, 76.4)	71.2 (61.1, 81.3)	29.4 (22.1, 36.6)
Somewhat	29.9 (32.2, 36.6)	24.5 (16.7, 32.3)	67.7 (60.1, 75.2)	72.1 (64.5, 79.6)	32.9 (25.9, 40.0)
A great deal	16.0 (8.4, 23.6)	18.7 (9.7, 27.8)	24.7 (39.8, 69.6)	74.3 (64.4, 84.2)	29.8 (15.3, 44.2)
Psychological health Mental health (anxiety or depression)
Neither	23.7 (17.5, 29.9)	25.8 (18.4, 33.2)	59.3 (53.1, 65.4)	64.6 (58.0, 71.2)	28.4 (23.2, 33.7)
Either	24.3 (20.2, 28.5)	21.3 (16.5, 26.2)	70.7 (65.1, 76.2)	73.9 (67.8, 80.1)	34.6 (29.2, 40.0)
Developmental condition±
None	25.3 (21.09, 29.7)	23.8 (18.9, 28.9)	68.3 (64.0, 72.6)	68.1 (63.0, 73.3)	32.4 (28.2, 36.7)
1+	17.0 (11.7, 22.3)	22.2 (12.3, 32.0)	49.6 (39.4, 59.8)	70.2 (61.1, 79.2)	25.9 (16.7, 35.1)
Individual flourishing
No	23.0 (18.0, 28.1)	21.6 (16.3, 26.9)	66.0 (60.4, 71.6)	67.3 (60.7, 73.8)	28.3 (23.2, 33.3)
Yes	25.4 (19.7, 31.2)	27.0 (19.3, 34.8)	64.9 (58.9, 71.0)	71.5 (65.5, 77.4)	35.9 (30.1, 41.7)
Health systems characteristics
Adequate insurance
No	23.3 (18.6, 28.1)	25.3 (17.0, 33.6)	69.5 (63.1, 75.9)	61.1 (53.0, 69.2)	28.5 (22.4, 34.6)
Yes	25.4 (19.6, 31.1)	26.6 (19.6, 33.5)	66.2 (59.9, 72.6)	73.4 (67.0, 79.8)	30.2 (24.0, 36.4)
Shared decision making
No	18.8 (8.8, 28.9)	24.9 (13.4, 36.4)	58.7 (46.1, 71.3)	68.6 (58.6, 78.6)	19.3 (10.4, 28.3)
Yes	31.1 (28.8, 37.2)	28.6 (22.2, 35.0)	67.9 (62.2, 73.5)	82.1 (77.4, 86.8)	33.0 (27.3, 38.7)
Medical home
No	24.3 (19.1, 29.4)	24.5 (18.2, 30.8)	67.3 (62.0, 72.6)	64.0 (57.9, 790.1)	32.6 (27.5, 37.8)
Yes	23.0 (8.6, 27.5)	21.6 (16.0, 27.1)	61.5 (55.4, 67.5)	78.5 (73.4, 83.6)	29.8 (24.5, 35.0)
Subcompon ents
Usual place for sick care
No	22.5 (12.1, 32.9)	23.4 (12.6, 34.1)	69.6 (57.7, 81.4)	54.1 (41.7, 66.5)	35.3 (24.9, 45.7)
Yes	24.2 (20.3, 28.2)	23.5 (18.6, 28.4)	64.5 (60.3, 68.8)	72.7 (68.2, 77.2)	30.8 (26.7, 34.8)
Regular provider
No	23.1 (13.4, 32.7)	24.5 (11.1, 37.8)	67.5 (58.3, 76.7)	56.5 (46.3, 66.7)	30.5 (22.4, 38.6)
Yes	24.2 (20.7, 27.8)	23.2 (19.0, 27.4)	64.6 (60.1, 69.2)	74.0 (69.2, 78.8)	32.3 (28.0, 36.5)
Family centered care+
No	27.5 (16.0, 39.0)	26.7 (13.3, 40.0)	66.2 (57.3, 75.0)	63.9 (55.1, 72.8)	20.9 (14.1, 27.6)
Yes	26.8 (22.9, 30.6)	23.2 (18.7, 27.7)	65.1 (60.5, 69.7)	79.1 (74.1, 84.1)	37.6 (32.9, 42.3)
Referral+
No	28.2 (18.6, 37.8)	19.7 (11.0, 28.4)	72.0 (61.8, 82.2)	74.7 (66.0, 83.3)	27.6 (18.7, 36.5)
Yes	31.7 (24.0, 39.3)	28.2 (20.8, 35.5)	68.0 (61.2, 74.9)	80.8 (75.4, 86.2)	34.3 (27.6, 41.1)
Effective care coordination+
No	27.6 (20.6, 34.7)	22.2 (15.3, 29.1)	65.6 (58.5, 72.7)	76.2 (70.2, 82.3)	37.3 (30.0, 44.7)
Yes	29.2 (22.3, 36.1)	29.0 (21.4, 36.6)	67.2 (59.4, 75.0)	79.9 (68.4, 91.0)	38.7 (30.4, 47.0)

^**Ratio of total family income and federal poverty threshold

^±Developmental delay, autism spectrum disorder, Down syndrome, and/or intellectual disability

⁺Only applied to those for whom it was pertinent

NA indicates the outcome did not pertain to the adolescent in the specified category

Table 4.

Prevalence ratios of transition readiness by biopsychosocial-cultural characteristics among adolescents (age 14–17) years with chronic pain, National Survey of Children’s health, 2021–2022

		Transition readiness subcomponents
Characteristics	Overall adequate transition readiness	Transition to adult care discussed	Alone with provider	Discussed positive health choices	Discussed changing healthcare needs
Demographics		Prevalence ratio (95% CI)
Age (years)
14	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)
15	1.8 (1.1, 3.0)	1.9 (1.0, 3.9)	1.1 (0.9, 1.3)	1.1 (1.0, 1.3)	1.2 (0.8, 1.7)
16	1.8 (1.2, 2.7)	3.1 (1.8, 5.4)	1.1 (0.9, 1.3)	1.0 (0.9, 1.2)	1.4 (1.0, 2.0)
17	1.6 (1.1, 2.5)	2.0 (1.2, 3.6)	1.2 (10, 1.5)	0.9 (0.8, 11)	1.2 (0.8, 1.8)
Sex
Male	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)
Female	1.6 (1.2, 2.2)	1.3 (0.9, 1.9)	1.2 (1.0, 1.4)	1.1 (0.9, 1.2)	1.1 (0.8, 1.4)
Family SES**, ◠, Σ, θ
<100%	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)
100–199%	0.9 (0.5, 1.2)	1.0 (0.5, 2.1)	1.1 (0.9, 1.4)	1.0 (0.8, 1.4)	0.9 (0.6, 1.2)
200–399%	1.2 (0.7, 2.0)	2.2 (1.2, 4.2)	1.2 (0.9, 1.4)	1.1 (0.9, 1.4)	0.8 (0.6, 1.1)
>=400%	1.1 (0.7, 1.8)	2.1 (1.2, 3.7)	1.1 (0.9, 1.4)	1.2 (1.0, 1.5)	0.8 (0.6, 1.1)
Race
White	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)
Black	0.9 (0.6, 1.4)	0.5 (0.3, 0.9)	0.9 (0.7, 11)	1.0 (0.8, 1.2)	1.6 (1.2, 2.2)
AIAN	0.8 (0.3,2.2)	0.1 (0.0, 0.5)	0.9 (0.6, 1.5)	1.2 (1.0, 1.5)	1.6 (0.9, 2.8)
Asian	0.4 (0.2, 0.9)	0.4 (0.2, 1.1)	0.9 (0.6, 1.3)	1.2 (0.9, 1.4)	1.7 (1.1, 2.9)
Multiracial	0.6 (0.4, 0.9)	0.4 (0.3, 0.7)	1.0 (0.8, 1.2)	1.0 (0.8, 1.2)	1.1 (0.8, 1.7)
NHPI	0.3 (0.1, 1.8)	N/A	0.7 (0.3, 1.8)	0.7 (0.3, 1.4)	0.6 (0.2, 1.7)
Ethnicity
Not Hispanic	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)
Hispanic	0.9 (0.6, 1.3)	1.0 (0.3, 1.7)	1.1 (0.9, 1.2)	0.9 (0.7, 1.1)	0.8 (0.6, 1.1)
Language
English	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)
Spanish	0.7 (0.3, 1.6)	1.1 (0.6, 2.4)	1.0 (0.8, 1.3)	0.8 (0.6, 1.1)	0.6 (0.4, 1.0)
Other	1.1 (0.5, 2.8)	1.7 (0.7, 4.2)	0.9 (0.5, 1.4)	1.0 (0.7, 1.4)	1.2 (0.7, 2.2)
Health status⊗,Σ, ♦, ▽
Overall health
Excellent	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)
Very good	0.9 (0.6, 1.7)	0.7 (0.5, 1.1)	1.0 (0.9, 1.6)	1.1 (0.9, 1.3)	1.0 (0.7, 1.4)
Good	0.9 (0.5, 1.5)	0.7 (0.5, 1.2)	1.0 (0.8, 1.2)	1.0 (0.8, 1.2)	0.9 (0.6, 1.4)
Fair	0.5 (0.3, 1.1)	0.5 (0.2, 1.1)	0.9 (0.6, 1.2)	1.1 (0.8, 1.5)	0.7 (0.4, 1.3)
Poor	0.4 (0.1, 1.8)	1.2 (0.5, 3.2)	1.0 (0.5, 2.0)	1.1 (0.8, 1.7)	0.1 (0.0, 0.4)
Frequency of functional impairment
No health conditions
Never	1.5 (0.8, 2.6)	1.5 (0.9, 2.6)	1.0 (0.8, 1.2)	1.1 (0.8, 1.4)	0.8 (0.5, 1.2)
Sometimes	1.4 (0.9, 2.1)	1.0 (0.6, 1.6)	1.1 (1.0, 1.3)	1.2 (1.0, 1.5)	0.8 (0.6, 1.1)
Usually	(0.6, 1.9)	0.9 (0.5, 1.8)	1.2 (1.0, 1.5)	1.2 (0.9, 1.6)	0.7 (0.4, 1.2)
Always	0.8 (0.3, 1.9)	1.2 (0.5, 2.6)	1.0 (0.7, 1.5)	1.0 (0.6, 1.6)	0.5 (0.2, 1.2)
Impact of functional impairment
Very little	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)
Somewhat	1.3 (0.7, 1.6)	1.1 (0.7, 1.7)	1.0 (0.8, 1.2)	1.0 (0.8, 1.2)	1.0 (0.7, 1.6)
A great deal	0.6 (0.3, 1.1)	0.8 (0.4, 1.5)	0.9 (0.7, 1.2)	0.9 (0.7, 1.2)	0.6 (0.3, 1.1)
Psychological health
Mental health (anxiety of depression)Ω
Neither	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)
Either	1.1 (0.8, 1.4)	0.9 (0.6, 1.2)	1.2 (1.0, 1.4)	1.2 (1.0, 1.4)	1.2 (1.0, 1.6)
Developmental condition±
None	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)
1+	0.7 (0.5, 0.9)	0.9 (0.6, 1.5)	0.7 (0.6, 0.9)	1.0 (0.9, 1.2)	0.8 (0.6, 1.2)
Individual flourishing +,ο,◠,θ
No	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)
Yes	1.1 (0.8, 1.4)	1.2 (0.8, 1.6)	1.0 (0.9, 1.1)	1.1 (0.9, 1.2)	1.3 (1.0, 1.6)

^**Ratio of total family income and federal poverty threshold

^±Developmental delay, autism spectrum disorder, Down syndrome, and/or intellectual disability

Adjusted for:

⁺age,

^οsex,

^⊗family SES,

^◠race,

^θethnicity,

^Σlanguage,

^Ωhealth status,

^♦insurance,

^▽medical home

NA indicates no adolescents in this row required a discussion regarding transition (i.e. were already seeing a provider who saw adults)

Table 5.

Adjusted prevalence ratios of transition readiness by health systems characteristics among adolescents (age 14–17) years with chronic pain, National Survey of Children’s Health, 2021–2022

		Transition subcomponents
Characteristics	Overall adequate transition readiness	Transition to adult care discussed	Alone with provider	Discussed positive health choices	Discussed changing healthcare needs
		Adjusted prevalence ratio(95% CI)
Adequate insurance⊗
No	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)
Yes	1.0 (0.7, 1.4)	0.9 (0.6, 1.4)	0.9 (0.8, 1.1)	1.1 (1.0, 1.3)	1.1 (0.8, 1.4)
Shared decision makingΩ,ω
No	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)
Yes	1.7 (1.0, 3.0)	1.1 (0.7, 1.8)	1.2 (0.9, 1.5)	1.2 (1.0, 1.4)	1.7 (1.1, 2.8)
Medical home⊗,Σ,Ω,ω,♦
No	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)
Yes	1.0 (0.7, 1.3)	0.8 (0.6, 1.2)	0.9 (0.8, 1.1)	1.2 (1.1, 1.3)	0.9 (0.7, 1.2)
Subcomponents
Usual place for sick care
No	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)
Yes	0.9 (0.5, 1.6)	0.7 (0.5, 1.2)	0.8 (0.7, 1.0)	1.4 (1.0, 1.9)	0.9 (0.6, 1.4)
Regular provider
No	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)
Yes	1.0 (0.7, 1.5)	1.0 (0.6, 1.6)	1.0 (0.8, 1.1)	1.4 (1.1, 1.8)	1.0 (0.7, 1.5)
Family centered care
No	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)
Yes	1.0 (0.7, 1.5)	0.8 (0.6, 1.2)	1.1 (0.9, 1.3)	1.3 (1.1, 1.6)	1.7 (1.1, 2.6)
Referral
No	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)
Yes	1.2 (0.8, 2.1)	1.3 (0.8, 2.3)	1.0 (0.8, 1.2)	1.1 (0.9, 1.3)	1.1 (07, 1.8)
Effective care coordination
No	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)	1.0 (ref)
Yes	1.0 (0.7, 1.5)	1.1 (0.7, 1.6)	1.0 (0.9, 1.2)	1.1 (0.9, 1.3)	1.2 (0.8, 1.8)

Adjusted for:

^⊗family SES,

^Σlanguage,

^Ωhealth status

^ωdevelopmental condition,

^♦insurance

Generally, older adolescents attained transition readiness more often than younger adolescents. Those aged 15–17 years met criteria 1.8 times as often as those aged 14 years (95%CI: 1.3, 2.6). Prevalence of transition readiness did not, however, increase with each year of age, such that compared to those 14 years of age, prevalence was 1.8 times as high among those 15 and 16 years of age but only 1.6 times as high among those 17 years of age (Table 4). Sensitivity analyses (in which the two transition components with “don’t know” response options (provider discussed changing health care needs and provider discussed positive health choices) were coded as meeting criteria rather than not) demonstrated comparatively increased readiness among those age 17 (PR=2.1 95% CI: 1.4, 3.2) and similar comparatively increased readiness prevalence among those 14–16 years of age. Readiness was 1.6 times as high among females as males (95% CI: 1.2, 2.2) (Table 4). Compared to White adolescents, prevalence of readiness was lower among all other races, and particularly among Asian (PR=0.4, 95% CI: 0.2, 0.9) and multi-racial adolescents (PR=0.6, 95% CI: 0.4, 0.9). Adolescents who experienced shared decision making met criteria for readiness 1.7 times as often as those who did not (95% CI: 1.0, 3.0) (Table 5).

Overall transition readiness did not otherwise vary by SES, ethnicity, language, health status, mental health, insurance status, overall medical home measure (or any of the five subcomponents).

Transition subcomponents

If a discussion regarding transition was needed, it occurred for only around a quarter of adolescents in the sample (Table 3). Having a discussion varied by biopsychosocial-cultural but not by health systems characteristics (Tables 4 and 5). These discussions occurred most often for adolescents who were 16 years of age and with higher family SES (200–399% FPL and >=400% FPL). As compared to White adolescents, discussion occurred only about half as frequently among Black and multi-racial adolescents and a minority of the time among AIAN adolescents (Table 4).

Parents reported about two thirds of adolescents experienced time alone with their provider and about two thirds of adolescents worked with a provider to make positive health choices (Table 3). Prevalence did not vary significantly for either subcomponent by biopsychosocial-cultural or health systems characteristics (Tables 4 and 5).

About a third of parents reported that providers discussed changing healthcare needs with their adolescent (Table 3). Discussion of changing healthcare needs occurred more often among Black (PR= 1.6 95% CI: 1.2, 2.2), Asian (PR=1.7 05% CI: 1.1, 2.9) and AIAN adolescents (PR: 1.6 95% CI: 0.9, 2.8) as compared to White adolescents (Table 4).

Discussion

This is the first study to our knowledge to estimate transition of care readiness among adolescents with chronic pain. Using parental responses to the 2021–2022 NSCH we identified 2,584 adolescents with chronic pain, 23.9% of whom met criteria for adequate transition readiness. Adolescents who were older, female, and experienced shared decision making were more likely to meet criteria for readiness. Asian or multiracial adolescents and those with one or more disabilities were less likely to meet criteria for readiness. We also identified personal and health systems vulnerabilities (poor mental health and inadequate healthcare access) that were not associated with transition readiness but may impact other aspects of the transition of care continuum (Figure 1) beyond the scope of this study (e.g. transition outcomes).

Prevalence of readiness among adolescents with chronic pain is low and comparable to that of other chronic illness populations (17–40%).^{17,18,27–30,35,39,52,53} Among other chronic illness populations readiness consistently increases with age but differs along other biopsychosocial-cultural and health systems characteristics.

Consistent with most previous work, adolescents who were older or female were more likely to be described by their parents as ready for transition to adult care. Interestingly, readiness did not increase with each year of age in our sample. It is unclear if this finding is novel as previous work has reported age groups without disaggregating age by year.^27,31,35,54. Decreasing parental involvement in later adolescence may contribute to uncertainty regarding details of the discussions between adolescents and their provider, supported by our sensitivity analyses. Transition readiness may also be impacted by developmental stage (not measured in this study) rather than age alone.¹⁵ Heighted parental protectiveness may also delay development of health autonomy among youth with pain.⁵ Like most studies, we found higher readiness among female as compared to male adolescents.^28,31,33,34 The impact of sex (and gender) on transition readiness should be further explored as healthcare use diverges in young adulthood by sex such that males receive significantly less overall and preventative care than females.⁵⁵

Our work adds to a growing body of evidence demonstrating racial disparities in transition readiness. Transition readiness was higher among White adolescents compared to all other races, particular among Asian and multi-racial adolescents. A growing body of evidence indicates non-Hispanic White youth meet criteria for readiness more often than other groups.^17,28,33,35 Similar to previous work we also found disparities in the individual subcomponents of readiness such that White youth had a discussion regarding shifting to an adult provider more often (than Black, AIAN, and multi-racial adolescents) but discussed changing healthcare less often than Black, AIAN, and Asian adolescents.²⁷ Explanation(s) for these findings are unclear and should be explored through the lens of structural, interpersonal, and internalized racism (e.g. understanding provider perceptions and beliefs, parental involvement, and adolescents internalized beliefs). Most previous work reports aggregate racial categories and often combines race and ethnicity, making direct comparison of results difficult. As a first step, future work should prioritize disaggregation to permit understanding of disparities.⁵⁶ Understanding these disparities will require studies designed using rigorous health disparities frameworks^57–60 and interpreted within the context of known disparities in pain management.⁶⁰

Our study adds to the evidence that adolescents with developmental conditions are less likely to meet criteria for adequate transition readiness³⁵. Future work should first investigate causes of decreased readiness (e.g., caregiver involvement, provider knowledge, communication factors) and, if needed, tailor interventions accordingly. Mental health did not appear related to transition readiness, though it may impact ability to carry out the actions needed for a successful transition.^5,35 Our findings highlighted the high burden of comorbid mental health issues among children with chronic pain. Consistent with previous studies, nearly half of adolescents with chronic pain had anxiety and/or depression,^4,61,62 while fewer than half of adolescents met criteria for flourishing.⁶¹

Shared decision making was the only health system characteristic associated with overall transition readiness among adolescents with chronic pain. Those who experienced shared decision making met criteria for both overall readiness and each individual subcomponent more often than those who did not. This has been previously observed in adolescents with special health care needs (but not those without).^30,31 This finding suggests that shared decision making may be an important foundational component to successful transition preparation.

The medical home has been identified as a potential practice-based implementation system for all stages of the transition process, beginning in early adolescence³⁴. Fewer than a third of adolescents with chronic pain met criteria for having a medical home, which is less than the general pediatric population (50%) and other chronic illness populations (~45%).³⁰ Fewer than half of those who needed care coordination reported it was effective (similar to adolescents with and without special healthcare needs).^30,63 These findings are particularly concerning for youth with pain given the need for effective coordination of multidisciplinary pain care. Care coordination may be impacted by systems issues (e.g., lack of access to specialized pain care and insufficient time and support for care coordination) and provider factors (e.g., poor communication). Consistent with previous work among youth without special healthcare needs, we found that meeting criteria for a medical home did not impact transition readiness.³⁰ Having a medical home may provide a good foundation to apply a transition framework and intervention but does not appear sufficient to prepare adolescents to transition.

Adequate and continuous insurance is important for healthcare continuity. Concerningly, fewer than half of adolescents with pain met criteria for adequate insurance in our study. However, we did not find an association between adequate insurance and transition readiness. Previous work has found that insurance was associated with transition among youth with special health care needs (but not among those without).³⁰ For adolescents with chronic pain, though insurance status may not be associated with transition readiness, it may be associated with transition outcomes.¹⁹

Our study had several strengths. This is the first study to our knowledge to describe transition readiness among adolescents with chronic pain at a national level and demonstrate the scope of the issue in this population. Additionally, this is the first study to characterize availability of a medical home among adolescents with chronic pain. We also observed personal and health systems vulnerabilities for this population including low prevalence of flourishing, adequate and continuous insurance, effective care coordination and high prevalence of anxiety and depression. An additional strength is application of a framework for assessing potential influences on transition of care specific to this population. Unlike previous studies we also chose to disaggregate race and ethnicity data. Additionally, the survey was conducted in both English and Spanish.

Our study has several limitations including those intrinsic to cross-sectional and survey design (e.g. selection and non-response bias). However, NSCH evaluates survey data for potential non-response bias and did not find strong or consistent evidence of nonresponse bias after survey weighting procedures.⁶⁴ Due to the cross-sectional design, it is not possible to infer a causal relationship between biopsychosocial-cultural and health systems characteristics and transition readiness. An important limitation of analyzing the NSCH database is reliance on the single-item measure of chronic pain collected by parent report. Chronic pain prevalence may be inaccurate given risk of misclassification bias and obscures potentially important heterogeneity (e.g. conditions, functional impairment) thus limiting interpretation. However, this definition has been used in previous studies.^2,44,61 Parental report of transition readiness does not necessarily reflect the adolescent’s experience of the transition process. Parents may be unaware of transition-relevant discussions due to increasing autonomy and health management skills that would impact the accuracy of their survey answers, consistent with our sensitivity analysis. However, previous nationally representative transition research has relied on parental response.^{17,27,28,30,31,52,53} Our study could not capture if or what kind of pain care the adolescent was receiving, and if the transition questions are capturing future pain care (versus other types of care). This study was also unable to measure relevant pain-specific processes relevant to transition: such as pain interference, acceptance, severity, self-efficacy, caregiver protectiveness, and perceived provider stigma.^{1,5,6,9,11–16}

More generally it is not clear how transition readiness relates to transition outcomes (or a consensus about how to define and measure either). However, implementation of transition programs has consistently demonstrated improved readiness (as measured by knowledge, confidence, and self-management skills) and outcomes (improved condition outcomes, cost and utilization, mental health, lapses in care, satisfaction with care and life, and stress) indicating an important area for future work.^{20,25,26,29,37–39} This study represents an important first step in demonstrating low transition readiness among adolescents with chronic pain at a national level. Readiness was lower among adolescents who were male, Asian or multiracial, with a developmental condition, and who did not experience shared decision making. Healthcare continuity may be a concern for adolescents with chronic pain as few met criteria for a medical home (mostly driven by lack of effective care coordination) and less than half had adequate insurance.

Future research should incorporate adolescents and provider perspectives and investigate pain specific factors relevant to transition readiness among clinical pain populations, include measures of pain-specific care, and investigate how readiness relates to transition outcomes.

Highlights.

• 23.9% of adolescents with chronic pain met criteria for readiness to transition to adult care.

• Higher readiness for those who were older, female, White and without a developmental condition.

• Higher readiness for those who experience shared decision making with providers.

• Poor mental health and inadequate healthcare access were common among adolescents with pain.

• Future work with pain-specific measures is needed.

Data Availability:

Data is publicly available at https://www.childhealthdata.org/learn-about-the-nsch