Health-related quality of life for children with rare diagnoses, their parents' satisfaction with life and the association between the two.

ABSTRACT:

Purpose

To examine children's health-related quality of life and parents' satisfaction with life and explore the association between the two in families where a child has a rare disorder.

Methods

We used a cross-sectional study design. A questionnaire was sent to parents of 439 school children (6-18 years) with congenital rare disorders. Children's health-related quality of life (HRQOL) was examined by Pediatric Quality of Life InventoryTM 4.0 (PedsQL) Norwegian version. Satisfaction with life was examined by Satisfaction with Life Scale (SWLS).

Results

The response rate was 48% (n = 209). The average age of the children was 12 years and 50% were girls. The parents scored their children with reduced physical, emotional, social and school functioning. The reductions we

SUBMITTER: Johansen H 

PROVIDER: S-EPMC3844436 | biostudies-literature | 2013 Sep

REPOSITORIES: biostudies-literature