Readiness for transition and health-care satisfaction in adolescents with complex medical conditions.

BACKGROUND: The 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. METHODS: Participants 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. RESULTS: There 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). CONCLUSIONS: Patient 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.

A case study: Acceptance and commitment therapy for pediatric sickle cell disease.

OBJECTIVE: Sickle cell disease (SCD) negatively impacts patients' functioning and quality of life. Acceptance and Commitment Therapy (ACT) promotes acceptance of difficult sensations, emotions, and thoughts when doing so facilitates living a values-based life. This study describes ACT for improving functioning and quality of life for an adolescent with SCD and his parents. METHODS: A 16-year old with SCD and his parents attended an eight-session ACT program. Process (adolescent psychological flexibility, parent acceptance) and outcome (adolescent social anxiety, pain, functioning, quality of life; parent distress) measures were conducted prior to and following treatment and at 3-month follow-up. RESULTS AND CONCLUSIONS: Improvements were evident, especially at follow-up. Process measures suggest adolescent psychological flexibility and parent acceptance might explain positive effects. Anecdotal comments support these findings and provide additional evidence that ACT might effectively promote functioning and quality of life in adolescents with chronic diseases.

A Multidisciplinary Educational Approach for Children With Chronic Illness: An Intervention Case Study.

Chronic illness requires frequent medical treatments and lifestyle restrictions that increase academic and socioemotional stressors for families. This paper presents academic intervention recommendations based on a hospital's approach to improving educational outcomes for children with chronic illness. A case study on an intervention for a girl with sickle cell disease (SCD) and a history of stroke. SCD is a relatively common chronic illness that has physical and psychosocial side effects that are central to other chronic illnesses (Platt, Eckman, & Hsu, 2016). A quality improvement approach resulted in five cycles of interventions that were assessed with both qualitative and quantitative measures. The initial strategy of improving academics through collaboration among the school, hospital, and family resulted in psychosocial, but not academic, improvements. Frequent tutoring, which was most achievable using online platforms, resulted in the greatest gains. The girl passed previously failed classes and advanced to the next grade. Recommendations for how to improve academic outcomes for children with chronic illness using the presented intervention strategies are discussed.