Quality of life among adolescents with sickle cell disease: Mediation of pain by internalizing symptoms and parenting stress

<p>Abstract</p> <p>Background</p> <p>This study aimed to clarify associations between pain, psychological adjustment, and family functioning with health-related quality of life (HRQOL) in a sample of adolescents with sickle cell disease (SCD) utilizing teen- and parent-report.</p> <p>Methods</p> <p>Forty-two adolescents (between the ages of 12 and 18) with SCD and their primary caregivers completed paper-and-pencil measures of pain, teen's psychological adjustment, and HRQOL. In addition, primary caregivers completed a measure of disease-related parenting stress. Medical file review established disease severity.</p> <p>Results</p> <p>Pearson correlations identified significant inverse associations of pain frequency with physical and psychosocial domains of HRQOL as rated by the teen and primary caregiver. Generally, internalizing symptoms (i.e. anxiety and depression) and disease-related parenting stress were also significantly correlated with lower HRQOL. Examination of possible mediator models via a series of regression analyses confirmed that disease-related parenting stress served as a mediator between pain frequency and physical and psychosocial HRQOL. Less consistent were findings for mediation models involving internalizing symptoms. For these, parent-rated teen depression and teen anxiety served as mediators of the association of pain frequency and HRQOL.</p> <p>Conclusion</p> <p>Results are consistent with extant literature that suggests the association of pain and HRQOL and identify concomitant pain variables of internalizing symptoms and family variables as mediators. Efforts to improve HRQOL should aim to address internalizing symptoms associated with pain as well as parenting stress in the context of SCD management.</p

A problem-solving intervention for children with persistent asthma: a pilot of a randomized trial at a pediatric summer camp

Pediatric summer camps are emerging as a means to increase social support and improve children's attitudes about their chronic illness. Because of the high rate of camp attendance, it may be feasible to implement interventions within that setting; however, it has yet to be determined what components of camp are beneficial. The objective of this pilot study was to determine the efficacy of a problem-solving intervention targeting disease management in improving psychosocial functioning of children with persistent asthma, over and above the benefits of participation in a pediatric summer camp. Fifty campers were randomly assigned to receive camp plus a nightly problem-solving intervention activity or camp as usual. Changes in self-reported asthma knowledge and problem-solving skills and self- and parent-reported child self- and social competence health-related quality of life were assessed thrice: before camp, on the last day of camp, and 3-months post-camp. There were no significant differences between the problem-solving intervention group and the camp as usual group in change across psychosocial variables from before camp to last day of camp or before camp to 3-months post-camp. Increases in asthma knowledge and problem-solving were found 3-months post-camp when groups were combined. Although support was found for improvements in disease knowledge and problem-solving skills after camp participation, there were no identified benefits to the problem-solving intervention. Children with asthma who participated in camp were functioning at a high level in terms of knowledge, problem-solving, and social and self-competence, suggesting that interventions may be more effective if targeted to patients with identified problems with disease management