How Do Youth with Cystic Fibrosis Perceive Their Readiness to Transition to Adult Healthcare Compared to Their Caregivers' Views?

Patient, Caregiver, and Provider Perceptions of Transition Readiness and Therapeutic Alliance during Transition from Pediatric to Adult Care in Epilepsy

“…Our data also suggest that provider perceptions of transition readiness are more influenced by age than patient or caregiver-reported TRAQ scores. Past studies have found that patient age is a strong predictor of higher transition readiness; 16,40,46 however, it is certainly not the only predictor. Several studies suggest that self-reported health care responsibility, gender, medication barriers, academic performance, communication with provider, self-efficacy, and resilience also predict transition readiness, above and beyond age.…”

“…Patients reported lower levels of transition readiness for appointment keeping and tracking health issues, measures also found to disagree in a study of caregiver, and AYA perception of transition readiness in cystic fibrosis. 16 These data indicate discordance between patients and caregivers regarding perceived transition readiness, with caregivers perceiving their AYA with epilepsy as managing more than they feel ready for. For example, caregivers perceived their AYA was ready to manage medications, track their own health, make and keep appointments, and manage their daily activities.…”

“…Our data are inconsistent with previous studies in other chronic illnesses where AYAs perceived greater transition readiness than caregivers. 12,16 There may be several reasons our AYAs with epilepsy reported lower transition readiness compared with their caregivers, including the unpredictable nature of seizures, the impact of psychological and cognitive comorbidities that impact self-management, and lower self-efficacy. [42][43][44][45] The clinical implications of such findings is that providers may need to consider a triadic partnership to ensure that there is parental support as patients take on more responsibility related to their care and frequent checkin related to AYAs comfort with skills necessary to transition.…”

“…12 Another study in AYAs with cystic fibrosis suggested that skill perception between AYAs and caregivers during transition differed significantly; however, trends over time were similar. 16 The greatest disparity between AYAs and caregivers was in appointment keeping and tracking health issues, two scales on the TRAQ. Multimethod assessment is typically the gold standard in pediatrics, but often parent and provider perceptions regarding transition readiness are absent in many measures of readiness.…”

“…It is hypothesized that patient, caregiver, and provider perceptions would differ, with patients reporting higher levels of readiness. 12,[15][16][17][18][19][20] Subgroup analyses will also be conducted to examine the level of agreement for two developmental groups: AYAs. The second aim was to examine (1) bond between providers and patients, (2) the relationship between bond scores and transition readiness, and (3) the influence of bond scores on provider perceptions of transition readiness.…”