Abstract
BackgroundTo assess health-related quality of life (HRQoL) in children (8–11 years) and adolescents (12–18 years) who survived retinoblastoma (RB), by means of the KIDSCREEN self-report questionnaire and the proxy-report version.MethodsThis population-based cross-sectional study (participation rate 70%) involved 65 RB survivors (8–18 years) and their parents. Child/adolescents' and parents' perception of their youth's HRQoL was assessed using the KIDSCREEN, and the results were compared with Dutch reference data. Relations with gender, age, marital status of the parents, and visual acuity were analyzed.ResultsRB survivors reported better HRQoL than did the Dutch reference group on the dimensions "moods and emotions" and "autonomy". Increased ratings of HRQoL in RB survivors were mainly seen in perceptions of the younger children and adolescent girls. RB survivors with normal visual acuity scored higher on "physical well-being" than visually impaired survivors. Age was negatively associated with the dimensions "psychological well-being", "self-perception" (according to the child and parent reports) and "parent relations and home life" (according to the child). "Self-perception" was also negatively associated with visual acuity (according to the child). Only parents of young boys surviving RB reported lower on "autonomy" than the reference group, and parents of low visual acuity and blind RB survivors reported higher on "autonomy" than parents of visually unimpaired survivors. Survivors' perceptions and parents' perceptions correlated poorly on all HRQoL dimensions.ConclusionRB survivors reported a very good HRQoL compared with the Dutch reference group. The perceptions related to HRQoL differ substantially between parents and their children, i.e. parents judge the HRQoL of their child to be relatively poorer. Although the results are reassuring, additional factors of HRQoL that may have more specific relevance, such as psychological factors or coping skills, should be explored.
Highlights
To assess health-related quality of life (HRQoL) in children (8–11 years) and adolescents (12–18 years) who survived retinoblastoma (RB), by means of the KIDSCREEN self-report questionnaire and the proxy-report version
Participant's characteristics From the national Dutch RB register, 99 RB survivors appeared to be eligible for our study; of these RB survivors, 4 (4%) could not be traced due to missing or incorrect personal data
No information was available on visual acuity, living situation, life events, and education of the non-participating children
Summary
To assess health-related quality of life (HRQoL) in children (8–11 years) and adolescents (12–18 years) who survived retinoblastoma (RB), by means of the KIDSCREEN self-report questionnaire and the proxy-report version. Retinoblastoma (RB) is a malignant tumor affecting the retina and is the most common intraocular malignancy in children. In the Netherlands, the incidence is 1:17,000 newborns (approximately 10–15 new patients every year)[1]. The survival of children with RB has significantly improved to a 5-year disease-free rate of more than 90% in the western world [2]. The hereditary form of RB (40% of cases) is mostly bilateral and those patients are treated with enucleation and/ or external beam radiotherapy (EBRT), and/or thermochemotherapy. Patients with unilateral RB are mostly treated with enucleation; after enucleation a prosthesis is inserted
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