Hidden Consequences of Success in Pediatrics: Parental Health-Related Quality of Life—Results From the Care Project

摘要: CONTEXT. The number of parents who care for a chronically ill child is increasing. Because advances in medical care, parental caring tasks are changing. A detailed description health-related quality life will add to the understanding impact child. This contribute pediatric family care. OBJECTIVE. Our goal was determine children compared with healthy schoolchildren. DESIGN, SETTING, AND PARTICIPANTS. survey 533 chronic conditions (10 diagnosis groups, aged 1–19 years, diagnosed 1 year ago, living at home) and 443 schoolchildren conducted between January 2006 September 2007. Parents were approached through Emma Children’s Hospital (which has tertiary referral regional function) parent associations. comparison group included Healthrelated assessed TNO-AZL Questionnaire Adult’s Health Related Quality Life. MAIN OUTCOME MEASURE. Health-related measures gross fine motor function, cognitive functioning, sleep, pain, social daily activities, sexuality, vitality, positive depressive emotions, aggressiveness. healthrelated study that group, effect sizes estimated. percentages risk low 25th percentile scores group. RESULTS. had significantly lower life. Subgroup analysis showed on emotions disease-specific groups. On average, 45% quality-of-life impairment. CONCLUSIONS. report seriously life, which should receive attention supportive if necessary. family-centered approach pediatrics recommended. Pediatrics 2008;122: e1030–e1038