title: What is quality of life in children with bone sarcoma?
abstract: Quality of life measures have neglected to include a critical self-assessment component in pediatric sarcoma patients. Our report shows how children rate their own quality of life and how that varies over time after surgery. Using the Pediatric Outcomes Data Collection Instrument, quality of life data was prospectively collected and combined with a retrospective review of clinical parameters on 43 children with primary bone sarcoma, with an average followup of 3 years. Children reported good yet variable scores in five of the six domains. Lower scores were noted in the Sports/Physical Functioning domain, particularly in the first 12 months after surgery, with improvement seen up to 24 months after surgery. Tumor specific factors such as size larger than 8 cm and lower extremity location were negative predictors for Sports/Physical Functioning. The only demographic factor that predicted perceived quality of life scores was gender, with girls reporting lower scores in Sports/Physical Functioning, Pain/Comfort, and Global Functioning domains. The Pediatric Outcomes Data Collection Instrument gives discriminatory detailed textured evaluation of the outcome of children treated for skeletal sarcoma. Further development of quality of life measures is needed to allow its use in treatment selection.
authors.affiliation: Stony Brook University Hospital, Stony Brook, NY, USA. jennymfrances@aol.com
authors.forename: Jenny M
authors.initials: JM
authors.lastname: Frances
authors.forename: Carol D
authors.initials: CD
authors.lastname: Morris
authors.forename: Alexandre
authors.initials: A
authors.lastname: Arkader
authors.forename: Zarko G
authors.initials: ZG
authors.lastname: Nikolic
authors.forename: John H
authors.initials: JH
authors.lastname: Healey
mesh_terms: D000293:Adolescent; D001859:Bone Neoplasms / Q000473:pathology / Q000523:psychology* / Q000601:surgery; D002648:Child; D015331:Cohort Studies; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D011788:Quality of Life; D020127:Recovery of Function; D012189:Retrospective Studies; D012509:Sarcoma / Q000473:pathology / Q000523:psychology* / Q000601:surgery; D012649:Self Concept; D013997:Time Factors; D016896:Treatment Outcome