title: Quality of life as conveyed by pediatric patients with cancer.
abstract: Quality-of-life instruments have provided important advances in measuring the quality of life of pediatric patients receiving treatment for cancer. However, the bases of these instruments have not included first-hand reports from the patients; thus, these instruments may be conceptually incomplete. We directly solicited from pediatric patients their perspectives regarding their quality of life during treatment for cancer. We conducted two pilot studies: 23 patients (aged 8-15 years) participated in the first, a cross-sectional study; and 13 patients (aged 10-18 years) participated in the second, a 2-year longitudinal study. Data were analyzed by using a semantic-content method, and the following six domains were recognized in data from both of the studies: symptoms, usual activities, social/family interactions, health status, mood, and the meaning of being ill. These domains were compared with those of seven established pediatric oncology quality-of-life instruments, none of which included all six of these domains; the domain most frequently missing was the meaning of being ill domain. Here we present a new definition of the quality of life of pediatric oncology patients that is based on six domains; this definition may ensure the completeness and sensitivity of these important instruments.
authors.affiliation: Patient Care Services, St. Jude Children's Research Hospital, Memphis, Tennessee 38105-2794, USA. pam.hinds@stjude.org
authors.forename: P S
authors.initials: PS
authors.lastname: Hinds
authors.forename: J S
authors.initials: JS
authors.lastname: Gattuso
authors.forename: A
authors.initials: A
authors.lastname: Fletcher
authors.forename: E
authors.initials: E
authors.lastname: Baker
authors.forename: B
authors.initials: B
authors.lastname: Coleman
authors.forename: T
authors.initials: T
authors.lastname: Jackson
authors.forename: A
authors.initials: A
authors.lastname: Jacobs-Levine
authors.forename: D
authors.initials: D
authors.lastname: June
authors.forename: S N
authors.initials: SN
authors.lastname: Rai
authors.forename: S
authors.initials: S
authors.lastname: Lensing
authors.forename: C H
authors.initials: CH
authors.lastname: Pui
mesh_terms: D000293:Adolescent; D002173:Cancer Care Facilities; D002648:Child; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D009369:Neoplasms / Q000503:physiopathology / Q000523:psychology* / Q000628:therapy; D010372:Pediatrics; D010865:Pilot Projects; D000297:Psychology, Adolescent; D002666:Psychology, Child; D011594:Psychometrics / Q000295:instrumentation / Q000379:methods*; D011788:Quality of Life / Q000523:psychology*; D012647:Self-Assessment; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires; D013714:Tennessee