COSMIN database

Measuring the psychosocial health of adolescent and young adult (AYA) cancer survivors: a critical review

Clinton-McHarg, T., Carey, M., Sanson-Fisher, R., Shakeshaft, A., and Rainbird, K.
BACKGROUND: Adolescent and young adult (AYA) cancer survivors require psychometrically rigorous measures to assess their psychosocial well-being. Without methodologically adequate scales the accuracy of information obtained on the prevalence of needs, predictors of risk, and the potential success of any interventions, can be questioned. This review assessed the psychometric properties of measures designed specifically to identify the psychosocial health of this unique population.

METHODS: Medline, PsycINFO, CINAHL and EMBASE databases were searched to identify measures developed to assess the psychosocial health of AYA cancer survivors. Searches were limited to the years 1998-2008. A search of Medline revealed that the number of publications related to the assessment of psychosocial well-being in AYA cancer survivors prior to this period were minimal. The psychometric properties of identified measures were evaluated against pre-determined and generally accepted psychometric criteria including: reliability (internal consistency and test-retest); validity (face, content, construct, and criterion); responsiveness; acceptability; and feasibility.

RESULTS: Seven quality of life measures met the inclusion criteria. No measures of unmet need were identified. All seven measures reported adequate internal consistency, face, content, and construct validity. Test-retest reliability, criterion (predictive) validity, responsiveness, acceptability, and feasibility were rarely examined.

CONCLUSIONS: There is a need to further evaluate the psychometric properties of existing quality of life measures for AYA cancer survivors. Valid, reliable, and acceptable measures which can assess the psychosocial needs of this population should also be developed.
Health Qual Life Outcomes
1477-7525 (Electronic)
Publication year:
Symptom status:
Cognitive/mental state
Emotional state
Physical state
Functional status:
Cognitive/mental functioning
Physical functioning
Social functioning
General health perceptions / HRQoL:
Health-related quality of life
Adults (18-65)
Children (0-18)
Neoplasms and related symptoms
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
AQoL - Adolescent Quality of Life Instrument
MMQL - Minneapolis-Manchester Quality of Life (Versions: MMQL-AF - Adolescent Form; MMQL-YF - Youth Form)
PCQL-32 - Pediatric Cancer Quality of Life Inventory
PCQL-Modular - Pediatric Cancer Quality of Life Inventory-Modular approach
PedsQL 3.0 Cancer Module-A - Pediatric Quality of Life Inventory Cancer Module Adolescent form
PedsQL 3.0 Cancer Module-C - Pediatric Quality of Life Inventory Cancer Module Child form
PIE - Perceived Illness Experience
QOL-CS - Quality of Life-Cancer Survivors