title: Missing content from health-related quality of life instruments: interviews with young adult survivors of childhood cancer.
abstract: OBJECTIVE
  Young adult survivors of childhood cancer (YASCC) are an ever-growing cohort of survivors due to increasing advances in technology. Today, there is a shift of focus to not just ensuring survivorship but also the quality of survivorship, which can be assessed with standardized instruments. The majority of standardized health related quality of life (HRQoL) instruments, however, are non-specific to this age group and the unique late effects within YASCC populations. The purpose of this study was to investigate the relevance and accuracy of standardized HRQoL instruments used with YASCC.
  
  
  METHODS
  In a previous study, HRQoL items from several instruments (SF-36, QLACS, QLS-CS) were examined for relevance with a population of YASCC. Participants (n = 30) from this study were recruited for a follow-up qualitative interview to expand on their perceptions of missing content from existing instruments.
  
  
  RESULTS
  Respondents reported missing, relevant content among all three of the HRQoL instruments. Results identified three content areas of missing information: (1) Perceived sense of self, (2) Relationships, and (3) Parenthood.
  
  
  CONCLUSIONS
  Existing HRQoL instruments do not take into account the progression and interdependence of emotional development impacted by a cancer diagnosis. The themes derived from our qualitative interviews may serve as a foundation for the generation of new items in future HRQoL instruments for YASCC populations. Further testing is required to examine the prevalence, frequency, and breadth of these items in a larger sample.
authors.affiliation: Health Outcomes and Behavior, H. Lee Moffitt Cancer Center and Research Institute, 12902 Magnolia Drive, MRC CANCONT, Tampa, FL 33612, USA. gwen.quinn@moffitt.org
authors.forename: Gwendolyn P
authors.initials: GP
authors.lastname: Quinn
authors.forename: I-Chan
authors.initials: IC
authors.lastname: Huang
authors.forename: Devin
authors.initials: D
authors.lastname: Murphy
authors.forename: Katie
authors.initials: K
authors.lastname: Zidonik-Eddelton
authors.forename: Kevin R
authors.initials: KR
authors.lastname: Krull
mesh_terms: D000293:Adolescent; D000328:Adult; D005260:Female; D006304:Health Status; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology*; D011594:Psychometrics / Q000295:instrumentation*; D036301:Qualitative Research; D011788:Quality of Life; D011795:Surveys and Questionnaires / Q000592:standards*; D017741:Survivors / Q000523:psychology*; D055815:Young Adult