title: Participation in daily activities and quality of life in survivors of retinoblastoma.
abstract: OBJECTIVE
  To assess the participation and health-related quality of life (HRQOL) of survivors of childhood retinoblastoma (RB).
  
  
  METHODS
  Parents of 46 survivors of childhood RB between the ages of 2-18 were administered questionnaires relating to their children's participation (CFFS) and HRQOL (CHQ and PedsQL) and children were administered the PedsQL. Results of the HRQOL were compared to population-based norms.
  
  
  RESULTS
  The overall QOL of survivors of RB was similar to that of age norms. However, parents' rating of their children's general and emotional health was lower than that of age norms, and survivors reported lower QOL related to school. Survivors of bilateral RB participated less in daily activities and had lower emotional QOL compared to those with unilateral RB, and parents of children who had an eye enucleated reported that their children had lower self-esteem. The level of participation was related to the perceived QOL.
  
  
  CONCLUSIONS
  Our results indicate that children who are survivors of RB have an overall QOL that is similar to their age-peers. However, subgroups of survivors appear to have unique difficulties that require continued follow-up and intervention. Focus should be placed on their participation in daily activities both in the community and at school.
authors.affiliation: School of Occupational Therapy, Hadassah-Hebrew University School of Medicine, Jerusalem, Israel.
authors.forename: Naomi
authors.initials: N
authors.lastname: Weintraub
authors.forename: Ido
authors.initials: I
authors.lastname: Rot
authors.forename: Naomi
authors.initials: N
authors.lastname: Shoshani
authors.forename: Jacob
authors.initials: J
authors.lastname: Pe'er
authors.forename: Michael
authors.initials: M
authors.lastname: Weintraub
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D011788:Quality of Life; D019572:Retinal Neoplasms / Q000523:psychology*; D012175:Retinoblastoma / Q000523:psychology*; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*