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BackgroundThe purpose of this study is to examine contributions to patient perceptions of transition readiness and satisfaction with care amongst adolescents and young adults (AYAs) with complex health conditions engaging in paediatric care.MethodsParticipants included 94 patients aged 14–20 years (M = 16.41, SD = 1.56) with cystic fibrosis (n = 31), sickle cell disease (n = 27), and solid organ transplants (n = 36). Participants completed self‐report questionnaires and medical providers completed measures of their medication regimen complexity. One‐way analysis of variance compared differences between disease groups on study variables. Pearson product–moment correlation coefficients and linear regression models evaluated factors associated with AYA reported transition readiness and satisfaction with health care.ResultsThere were no significant differences between disease groups on patient‐reported transition readiness, barriers to medication adherence, health care self‐management, or satisfaction. Patient age, self‐reported health‐care responsibility, medication barriers, and academic performance predicted a large portion of the variance in AYA perceptions of transition readiness (R2 = 0.27, F (4, 83) = 7.74, p < 0.001, Cohen's f2 = 0.37). Patient gender, self‐reported health‐care responsibility, and medication barriers predicted a medium portion of the variance in AYA satisfaction with health care (R2 = 0.23, F (3, 88) = 8.56, p < 0.001, Cohen's f2 = 0.30).ConclusionsPatient perceptions of health care self‐management and barriers to medication adherence are important predictors of readiness for transition and satisfaction with care. Considering a holistic approach that includes these factors allows for improved understanding of individual needs for transition interventions that can improve adult outcomes for individuals with complex health conditions.

PATIENTS:One hundred eighty-two infants undergoing one of three index operations: Norwood palliation, aortic arch reconstruction with ventricular septal defect closure, or arterial switch. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS:Core domains of developmental care encompassing pain assessment, feeding, infant holding, caregiver involvement, therapy, and psychosocial services were reviewed. Practices varied across individuals, institutions, and the hospital stay. At five of six sites, greater than 90% of individuals had physical or occupational therapy services as part of their care, but the day of first evaluation ranged from day of admission to postoperative day 28. Similar patterns were seen in feeding team and social work involvement. Consistent documentation of developmental care was dependent on the domain and site. Of the total days reviewed (n = 1,192), pain scores were documented in 95%. In those same days, documentation of whether or not a patient was out of the crib to be held varied by site from 11% to 93%. Type of oral feeding, breast versus bottle, was documented on the day prior to discharge 48% of the time. CONCLUSIONS:There are significant, quantifiable variations in documented developmental care practices at both the individual and site level. More reliable documentation of developmental care practices is required to associate these variables with later outcomes and investigate disparities in individualized developmental care practices.

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