Integrating interactive web-based technology to assess adherence and clinical outcomes in pediatric sickle cell disease.

Research indicates that the quality of the adherence assessment is one of the best predictors for improving clinical outcomes. Newer technologies represent an opportunity for developing high quality standardized assessments to assess clinical outcomes such as patient experience of care but have not been tested systematically in pediatric sickle cell disease (SCD). The goal of the current study was to pilot an interactive web-based tool, the Take-Charge Program, to assess adherence to clinic visits and hydroxyurea (HU), barriers to adherence, solutions to overcome these barriers, and clinical outcomes in 43 patients with SCD age 6-21 years. Results indicate that the web-based tool was successfully integrated into the clinical setting while maintaining high patient satisfaction (>90%). The tool provided data consistent with the medical record, staff report, and/or clinical lab data. Participants reported that forgetting and transportation were major barriers for adherence to both clinic attendance and HU. A greater number of self-reported barriers (P < .01) and older age (P < .05) were associated with poorer clinic attendance and HU adherence. In summary, the tool represents an innovative approach to integrate newer technology to assess adherence and clinical outcomes for pediatric patients with SCD.

Disease management, coping, and functional disability in pediatric sickle cell disease.

BACKGROUND: Youth with sickle cell disease (SCD) experience chronic symptoms that significantly interfere with physical, academic, and social-emotional functioning. Thus, to effectively manage SCD, youth and caregivers must work collaboratively to ensure optimal functioning. The goal of the current study was to examine the level of involvement in disease management tasks for youth with SCD and their caregivers. The study also examined the relationship between involvement in disease management tasks, daily functioning, and coping skills. The study utilized collaborative care and disease management theoretical frameworks. METHODS: Youth and caregivers participated in the study during an annual research and education day event. Forty-seven patients with SCD aged 6 to 18 years and their caregivers completed questionnaires examining level of involvement in disease management tasks, youth functional disability, and youth coping strategies. Caregivers also completed a demographic and medical history form. RESULTS: Parents and youth agreed that parents were significantly more involved in disease management tasks than youth, although level of involvement varied by task. Decreased parent involvement was related to greater coping strategies used by patients, including massage, prayer, and positive thinking. Higher functional disability (lower functioning) was related to greater parent involvement in disease management tasks, suggesting that greater impairment may encourage increased parent involvement. CONCLUSIONS: Health professionals working with families of youth with SCD should discuss with parents and youth how disease management tasks and roles will be shared and transferred during adolescence. Parents and youth may also benefit from a discussion of these issues within their own families.

Parent-adolescent discrepancies in adolescents' competence and the balance of adolescent autonomy and adolescent and parent well-being in the context of Type 1 diabetes.

This study examined whether intrafamily discrepancies in perceptions of the adolescent's competence and independence were associated with autonomy and well-being for adolescents and parents. The ways in which mothers and fathers consistently differed from their adolescent across measures of independence and competence regarding Type 1 diabetes, a stressful context for families, were examined with the latent discrepancy model. A sample of 185 adolescents (mean age = 12.5 years, SD = 1.3), their mothers, and participating fathers completed measures of the adolescent's independence in completing diabetes tasks, problems with diabetes management, adherence to the medical regimen, measures of well-being, and metabolic control. The latent discrepancy model was conducted via structural equation modeling that generated latent discrepancies from the adolescent for mothers and fathers. Both mothers and fathers viewed the adolescent's competence more negatively than did the adolescent. These discrepancies related to more parental encouragement of independence and adolescent autonomy but also to poorer metabolic control and poorer parental psychosocial well-being. The results are interpreted within a developmental perspective that views discrepancies as reflecting normative developmental processes of autonomy but as being associated with disruptions in well-being in the short term.