The development of the pediatric cardiac quality of life inventory: a quality of life measure for children and adolescents with heart disease

Abstract

The PCQLI has patient and parent-proxy forms, has wide age range, and discriminates between CHD subgroups. The ID and PI subscales of the PCQLI have excellent IC and correlate well with each other and the TS.

Quality-of-Life Concerns Differ Among Patients, Parents, and Medical Providers in Children and Adolescents With Congenital and Acquired Heart Disease

“…The development of the Pediatric Cardiac Quality of Life Inventory made use of the data identified in this study to proportionally select the items in the instrument to reflect the importance of the physical dimension. 22 QoL studies in other pediatric chronic disease populations have revealed the central importance of the physical dimension relative to other dimensions 22,26,27 but less has been written about other dimensions. The results of this study demonstrate that children endorsed items in the psychological dimension less frequently than parents and providers, which is similar to results obtained by Boggs and Durning in pediatric patients with cancer.…”

“…Focus group participant selection and recruitment has been previously described in detail. 22 Potential participants were patients with either congenital or acquired HD, who were 8 to 18 years of age, English speaking, and had at least 1 cardiac-related admission to the CHOP over a 2 year period. Patients with a previous cardiac-related admission were selected for participation because they were more likely to have physical and psychosocial morbidities from their HD that would affect their QoL.…”

“…Each group met only once. 22 After item generation and voting, the note cards were collected and a list of all items and votes was compiled for each type of focus group. Votes from physician and nurse focus groups were combined by respective patient age group and have been classified as "health care provider."…”

Neurodevelopmental Outcomes in Children With Congenital Heart Disease: Evaluation and Management

“…192,247 QOL research in children with CHD has been further advanced with the development of the cardiac-specific module of the PedsQL (Pediatric Quality of Life Inventory) 248,249 and the cardiac-specific Congenital Heart Adolescent and Teenager Questionnaire, 250 ConQol, 251 and Pediatric Cardiac Quality of Life Inventory. 252 The cardiac-specific module of the PedsQL includes a cognitive problems subscale and a communication subscale. 249,253 Using the PedsQL cardiacspecific module, Uzark and colleagues 192 found that children with severe cardiovascular disease have lower parentreported and self-reported QOL scores on the cognitive problems subscale and lower parent-reported QOL scores on the communications subscale than children with less severe cardiovascular disease.…”

Linguistic Ratification and Validation of Pediatric Quality of Life Inventory 3.0 Cardiac Module

“…Наиболее распространенным в мире для оценки качества жизни у детей с заболеваниями сердца явля-ется специальный модуль общего опросника Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core ScalePedsQL 3.0 Cardiac Module [4]. Многие зарубежные исследователи доказали удовлетворительные психо-метрические свойства данного модуля, что позволяет использовать его в детской кардиологии [5][6][7].…”