The current study sought to investigate differences in parenting capacity variables across four disease groups. Parents (N = 425), the majority of whom were mothers, of children with either cancer, asthma, Type 1 diabetes, or cystic fibrosis, completed measures of parental overprotection, perceived child vulnerability, and parenting stress. After controlling for significant demographic variables, parents of children with cystic fibrosis and asthma reported higher perceived child vulnerability than parents of children with either diabetes or cancer, while parents of children with asthma and diabetes reported higher parenting stress than parents of children with cancer or cystic fibrosis. No differences between disease groups were found for parental overprotection. The current study provides support for an illness-specific approach to understanding parenting capacity variables in the context of childhood chronic illnesses.

Objective To review and critically evaluate the extant research literature pertaining to adherence in youth and adults with headache and to provide recommendations for future research. Background This article provides the first systematic review of pediatric headache adherence and updates a previous review of treatment adherence in adults with headache. Design Systematic review of empirical literature. Methods A literature search with no date restriction was conducted using PubMed and PsycINFO electronic databases and bibliographies of relevant articles. Results Adherence rates in adults with headache range considerably from 25% to 94% across treatment, assessment method, and definition of adherence utilized. Methods to assess adherence included retrospective prescription claims data, paper or electronic diaries, follow-up appointment attendance, written and verbal self-report of general adherence, verbal self-report of adherence over a specific amount of time via in person interview or telephone, validated adherence measures, adherence questionnaires without validation, and counselor ratings of homework. Each methodology and assessment tool demonstrated strengths and weaknesses. No studies have systematically examined medication adherence in children with headache, and the few available studies examining adherence to behavioral treatment have documented adherence rates ranging from 52% to 86%. Conclusions Adherence research in adults with headache is growing, but studies demonstrate a number of methodological shortcomings. Adherence research in children with headache, and adherence intervention research in both adults and children, is scant. Future research should use objective measures of adherence, consider over-the-counter medications and medication overuse, examine demographic, psychological, and behavioral correlates of adherence, assess adherence to botulinum toxin type A, and examine the efficacy of adherence interventions in individuals with headache.

Inclusion of several stakeholder groups allowed for the identification of commonalities across groups as well as their unique needs and concerns surrounding transition to adult care. Concerns and recommendations by participants should be targeted in future transition program efforts.

CHILD HEALTH QUESTIONNAIRE (CHQ) DescriptionPurpose. To measure health-related quality of life (HRQOL) in children and adolescents ages 5-18 years. This measure consists of child report (ages 10 -18 years) and 2 versions of parent-proxy report (ages 5-18 years) of the child's HRQOL. It can be used with healthy children and those with both acute and chronic health conditions. Content. Assesses for 14 physical and psychosocial domains: general health perceptions, physical functioning, role/social physical functioning, bodily pain, role/social emotional functioning, role/social behavioral functioning, parent impact-time, parent impact-emotional, self-esteem, mental health, behavior, family activities, family cohesion, and change in health.Number of items. The child-report questionnaire (CHQ-CF87) consists of 87 items. The long parent-report questionnaire (CHQ-PF50) consists of 50 items, and the short parent-report questionnaire (CHQ-PF28) consists of 28 items.Response options/scale. The response options for the CHQ are ordinal scales that vary by the item. Each item consists of 4 -6 response options. Additionally, each scale consists of varying numbers of items.Recall period for items. Varies by subscale. Most scales have a recall period of 4 weeks. The change in health subscale has a recall period of 1 year, and the global health, general health perception, and family cohesion subscales ask about the child's health "in general."

Background Previous studies of CF treatments have shown suboptimal adherence, though little has been reported regarding adherence patterns to ivacaftor. Electronic monitoring (EM) of adherence is considered a gold standard of measurement. Methods Adherence rates by EM were prospectively obtained and patterns over time were analyzed. EM-derived adherence rates were compared to pharmacy refill history and self-report. Results 12 subjects (age 6-48 years; CFTR-G551D mutation) previously prescribed ivacaftor were monitored for a mean of 118 days. Overall adherence by EM was 61%(SD=28%) and decreased over time. Median duration between doses was 16.9 hours (IQR 13.9-24.1 hours) and increased over time. There was no correlation between EM-derived adherence and either refill history (84%, r=0.26, p=0.42) or self-report (100%, r=0.40, p=0.22). Conclusions Despite the promising nature of ivacaftor, our data suggest adherence rates are suboptimal and comparable to other prescribed CF therapies, and more commonly used assessments of adherence may be unreliable.