Nurse-Led Transition Programs for Adolescents with Chronic Illness Moving to Adult Care

Introduction

Adolescents and young adults with chronic illness who transfer from pediatric to adult-oriented health care are consistently documented to be at elevated risk of care disruption during this period, including gaps in follow-up, loss to specialty care, and, for conditions such as type 1 diabetes and inflammatory bowel disease, worsening disease control coinciding with the transfer period (Lotstein et al., 2009; Crowley et al., 2011). Professional consensus guidance, including the joint clinical report from the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians, recommends structured health care transition planning beginning in early adolescence, encompassing progressive transition readiness assessment, skill-building, and a formal transfer of care process, rather than an abrupt, unplanned handoff at a fixed age (White & Cooley, 2018).

Nurses, and dedicated transition-focused nursing roles specifically, have been increasingly identified in the literature as well positioned to coordinate this structured transition process, given nursing’s traditional emphasis on patient education, self-management skill-building, and care coordination across settings (Betz, 2004; Coyne et al., 2017). Prior systematic reviews of transition intervention effectiveness have generally supported a beneficial effect of structured transition programs on readiness and continuity outcomes, though this literature has been noted to rely disproportionately on cross-sectional or short-term pre-post assessment, with comparatively few studies tracking the trajectory of transition readiness development longitudinally across the full pre-transfer and post-transfer period within the same cohort (Chu et al., 2015; Schwartz et al., 2011).

Understanding the shape of readiness development over time, not simply its value at a single pre-transfer assessment point, is important because it clarifies whether a nurse-led program’s benefit reflects an earlier, more gradual head start in skill-building or a late, compressed effort concentrated near the point of transfer, a distinction with direct implications for when transition-focused nursing resources should be introduced. The purpose of this prospective longitudinal cohort study was to evaluate the effect of a structured, nurse-led transition program, relative to usual transition care, on the trajectory of transition readiness from age 16 through 12 months after transfer to adult care, and on post-transfer continuity and disease-specific outcomes, among adolescents with type 1 diabetes or inflammatory bowel disease.

Methods

Design. This study used a prospective, quasi-experimental longitudinal cohort design, following participants across five assessment points from age 16 through 12 months after transfer to adult care. Because the nurse-led transition program was implemented as a standard practice change within specific pediatric subspecialty clinics rather than through individual randomization, a nonequivalent comparison cohort drawn from clinics continuing usual transition practice was used, consistent with a quasi-experimental approach.

Setting and participants. Participants were adolescents aged 16 years at enrollment with a diagnosis of type 1 diabetes or inflammatory bowel disease, followed at pediatric subspecialty clinics within a single academic health system, enrolled between 2021 and 2022 and followed prospectively through 12 months following their eventual transfer to adult care. Clinics implementing the nurse-led transition program (program group) and comparable clinics continuing usual transition practice (usual care group) were both included. Of 251 eligible adolescents approached, 214 enrolled and completed at least the baseline assessment (program group: n = 112; usual care group: n = 102), with 196 (91.6%) completing the full longitudinal assessment series through 12 months post-transfer.

Nurse-led transition program. The program assigned each adolescent a dedicated transition nurse beginning at age 16, who conducted structured transition readiness assessment at each clinic visit, delivered individualized skill-building sessions addressing self-management, insurance navigation, and appointment scheduling, prepared a structured medical transfer summary, and coordinated a joint introductory visit involving both the pediatric and receiving adult care team prior to formal transfer.

Usual care. Adolescents in the usual care group received transition-related guidance as part of routine pediatric subspecialty visits, without a dedicated transition nurse role, structured skill-building curriculum, or coordinated joint introductory visit; transfer summary content and timing were determined by the treating pediatric physician on a case-by-case basis.

Measures. Transition readiness was assessed at five time points, age 16 (baseline), age 17, age 18 (approximate pre-transfer), 6 months post-transfer, and 12 months post-transfer, using the Transition Readiness Assessment Questionnaire (TRAQ), a validated instrument assessing self-management and self-advocacy skill domains on a 1–5 scale (Sawicki et al., 2011). Successful transfer was defined as attendance at a first adult care visit within 6 months of the final pediatric visit. Twelve-month adult care retention was defined as attendance at least one additional adult care visit between 6 and 12 months post-transfer. Within the diabetes subgroup, hemoglobin A1c at 12 months post-transfer and loss to follow-up (no adult care visit within 12 months) were additionally assessed.

Statistical analysis. The trajectory of TRAQ score across the five assessment points was analyzed using linear mixed-effects growth curve modeling, with fixed effects for time, group, and their interaction, and a random intercept and slope for each participant, allowing for evaluation of whether the rate of readiness development, not only the endpoint value, differed between groups. Successful transfer was analyzed using logistic regression adjusted for diagnosis and baseline TRAQ score, yielding an adjusted odds ratio. Twelve-month retention and diabetes subgroup outcomes were compared using chi-square tests and independent-samples t-tests as appropriate. A two-sided p value of less than .05 was considered statistically significant.

Results

A total of 214 adolescents were enrolled (Table 1), with comparable baseline age, sex, diagnosis distribution, and baseline TRAQ score between groups. Across the five assessment points spanning age 16 through 12 months post-transfer, mean TRAQ score increased from 2.6 to 4.4 in the program group, compared with an increase from 2.5 to 3.6 in the usual care group, as shown in Figure 1.

Successful transfer, defined as attendance at a first adult care visit within 6 months of the final pediatric visit, occurred in 86.6% of the program group compared with 61.8% of the usual care group (adjusted odds ratio 3.94, 95% CI 2.11–7.36, p < .001). Twelve-month adult care retention showed a similar pattern favoring the program group, as shown alongside the transfer outcome in Figure 2.

Within the diabetes subgroup, hemoglobin A1c at 12 months post-transfer was significantly lower in the program group (mean 7.6%, SD 1.1) than in the usual care group (mean 8.6%, SD 1.4; p = .002), and loss to follow-up, defined as no adult care visit within 12 months of transfer, was significantly less frequent (9.8% vs. 28.6%, p = .01), as shown in Figure 3.

Discussion

This prospective longitudinal cohort study found that a structured, nurse-led transition program was associated with a significantly steeper trajectory of transition readiness development from age 16 onward, and with substantially improved continuity of care and disease-specific outcomes following transfer to adult care, relative to usual transition practice. The finding that the two groups’ readiness trajectories diverged progressively beginning at age 16, rather than only near or after the point of transfer, is a notable extension of prior transition intervention literature, which has more often assessed readiness at a single pre-transfer time point rather than tracking its developmental trajectory across the full pre- and post-transfer period (Chu et al., 2015; Schwartz et al., 2011).

This trajectory-level finding has a specific practical implication: it suggests that the nurse-led program’s benefit reflected a cumulative, early-starting skill-building process rather than a late, compressed intervention concentrated near the point of transfer, consistent with the program’s design, which assigned a dedicated transition nurse and began structured readiness assessment and skill-building at age 16, well in advance of the typical transfer point. This is consistent with professional guidance recommending early initiation of transition planning rather than transition activity concentrated in the final year before anticipated transfer (White & Cooley, 2018).

The substantial improvement in successful transfer and 12-month adult care retention observed in the program group is consistent in direction with prior systematic review evidence supporting structured transition intervention (Crowley et al., 2011; Chu et al., 2015), and the magnitude of improvement observed here, nearly a fourfold increase in the adjusted odds of successful transfer, underscores the potential clinical significance of dedicated transition nursing coordination specifically, as distinct from more general transition-related guidance embedded within routine subspecialty visits without a dedicated coordinating role.

The diabetes subgroup findings, significantly better glycemic control and substantially lower loss to follow-up at 12 months post-transfer, provide evidence that the program’s benefit extended beyond process measures of transfer completion to a disease-specific clinical outcome, addressing a specific concern repeatedly raised in prior transition literature regarding glycemic deterioration coinciding with the transfer period (Lotstein et al., 2009). This finding reinforces that structured transition support has relevance not only to administrative continuity of care but to the ongoing clinical management of the underlying chronic condition itself.

Several limitations should be considered. Because clinic-level implementation of the nurse-led program, rather than individual-level randomization, determined group assignment, residual confounding by unmeasured clinic-level differences cannot be fully excluded, despite covariate adjustment for baseline readiness and diagnosis in the transfer outcome analysis. This study was conducted within a single academic health system and evaluated only two chronic conditions, type 1 diabetes and inflammatory bowel disease; generalizability to other chronic conditions with different transition demands, or to health systems with different specialty care availability for young adults, should be considered carefully. Finally, while the 12-month post-transfer follow-up period captured the immediate transfer period during which disruption risk is believed to be highest, longer-term follow-up would be needed to establish whether the observed benefits are sustained further into adult care.

Future research should extend follow-up beyond 12 months post-transfer to evaluate the durability of the observed benefits, and should examine which specific components of the nurse-led program, individualized skill-building, the structured transfer summary, or the joint introductory visit, contribute most to the observed trajectory and continuity benefits, which would help health systems with constrained transition-nursing staffing resources prioritize implementation. Extension of this longitudinal cohort approach to additional chronic conditions, including those with different developmental and self-management demands such as congenital heart disease or cystic fibrosis, would help establish the generalizability of both the trajectory finding and the continuity benefit observed in this study. Taken together, these findings support early-initiated, dedicated nurse-led transition coordination as an effective strategy for building transition readiness progressively over time and for protecting continuity of care and disease control during the vulnerable period surrounding transfer to adult health care.

References

Betz, C. L. (2004). Transition of adolescents with special health care needs: Review and analysis of the literature. Issues in Comprehensive Pediatric Nursing, 27(3), 179–241.

Chu, P. Y., Maslow, G. R., von Isenburg, M., & Chung, R. J. (2015). Systematic review of the impact of transition interventions for adolescents with chronic illness on transfer from pediatric to adult healthcare. Journal of Pediatric Nursing, 30(5), e19–e27.

Coyne, I., Sheehan, A. M., Heery, E., & While, A. E. (2017). Improving transition to adult healthcare for young people with cystic fibrosis: A systematic review. Journal of Pediatric Nursing, 35, 40–49.

Crowley, R., Wolfe, I., Lock, K., & McKee, M. (2011). Improving the transition between paediatric and adult healthcare: A systematic review. Archives of Disease in Childhood, 96(6), 548–553.

Fair, C., Cuttance, J., Sharma, N., Maslow, G., Wiener, L., Betz, C., Porter, J., McLaughlin, S., Gilleland-Marchak, J., Renwick, A., Naranjo, D., Jan, S., Javalkar, K., & Ferris, M. (2016). International and interdisciplinary identification of health care transition outcomes. JAMA Pediatrics, 170(3), 205–211.

Fegran, L., Hall, E. O. C., Uhrenfeldt, L., Aagaard, H., & Ludvigsen, M. S. (2014). Adolescents’ and young adults’ transition experiences when transferring from paediatric to adult care: A qualitative metasynthesis. International Journal of Nursing Studies, 51(1), 123–135.

Gray, W. N., Resmini-Rawlinson, A., Baker, P., Wagoner, S. T., Watson, S. E., Gesell, S., & Rea, K. (2018). Concordance of transition readiness in adolescent/young adult patients with inflammatory bowel disease and their parents. Journal of Pediatric Nursing, 39, 49–54.

Lotstein, D. S., Ghandour, R., Cash, A., McGuire, E., Strickland, B., & Newacheck, P. (2009). Planning for health care transitions: Results from the 2005–2006 National Survey of Children with Special Health Care Needs. Pediatrics, 123(1), e145–e152.

McManus, M., White, P., Barbour, A., Downing, B., Hawkins, K., Quion, N., Tuchman, L., Cooley, W. C., & McAllister, J. W. (2015). Pediatric to adult transition: A quality improvement model for primary care. Journal of Adolescent Health, 56(1), 73–78.

Sawicki, G. S., Lukens-Bull, K., Yin, X., Demars, N., Huang, I. C., Livingood, W., Reiss, J., & Wood, D. (2011). Measuring the transition readiness of youth with special healthcare needs: Validation of the TRAQ—Transition Readiness Assessment Questionnaire. Journal of Pediatric Psychology, 36(2), 160–171.

Schwartz, L. A., Tuchman, L. K., Hobbie, W. L., & Ginsberg, J. P. (2011). A social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions. Journal of Pediatric Psychology, 36(2), 160–171.

Van Staa, A., Jedeloo, S., van Meeteren, J., & Latour, J. M. (2011). Crossing the transition chasm: Experiences and recommendations for improving transitional care of young adults, parents and providers. Child: Care, Health and Development, 37(6), 821–832.

White, P. H., & Cooley, W. C. (2018). Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics, 142(5), e20182587.

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