Coping among parents of children with special health care needs with and without a health care home.

INTRODUCTION: Having a health care home has been shown to be associated with positive health outcomes for children with special health care needs (CSHCN), but its relationship to parental coping has not been established. The purpose of this study was to explore the health care home as a process of care related to parental coping with day-to-day demands of raising a CSHCN. METHOD: Data are from a sample of 18,352 CSHCN in the 2007 National Survey of Children's Health. Using the Behavioral Model of Health Services Use as a framework, this secondary analysis explored relationships between child and household factors and parental coping among CSHCN with and without a health care home. RESULTS: CSHCN in a health care home were more likely to have parents who were coping well. Parents who received sufficient care coordination were more satisfied with provider communication, and those who reported that care was family-centered reported better coping. DISCUSSION: Results suggest that the health care home represents a process of care that may help families manage the daily demands of caring for CSHCN through family-centered care, provider-to-provider communication, and provision of care coordination.

Clinical and pharmacogenetic influences on response to hydroxychloroquine in discoid lupus erythematosus: a retrospective cohort study.

The recommended systemic therapy of choice for discoid lupus erythematosus (DLE) is the 4-aminoquinolone antimalarial hydroxychloroquine. There is limited published information on the likelihood of clinical response and, in particular, what factors influence outcome. We conducted a multicenter observational and pharmacogenetic study of 200 patients with DLE treated with hydroxychloroquine. The primary outcome was clinical response to hydroxychloroquine. We investigated the effects of disease attributes and metabolizing cytochrome P450 (CYP) polymorphisms on clinical outcome. Although the majority of patients responded to hydroxychloroquine, a significant proportion (39%) either failed to respond or was intolerant of the drug. Cigarette smoking and CYP genotype did not have any significant influence on response to hydroxychloroquine. Moreover, multivariate analysis indicated that disseminated disease (odds ratio (OR): 0.21; 95% confidence interval (CI): 0.08-0.52; P<0.001) and concomitant systemic lupus erythematosus (SLE; OR: 0.06; 95% CI: 0.01-0.49; P = 0.009) were significantly associated with lack of response to hydroxychloroquine. These findings suggest that baseline lupus severity and SLE are predictors of response to hydroxychloroquine. A prospective study is now required to further investigate the relationship between disease activity and response to hydroxychloroquine. This will have the potential to further inform the clinical management of this disfiguring photosensitive disease.