Introduction: Children, adolescents, and young adults with cancer are a vulnerable population in whom improvements in psycho-oncology care would be valuable. We previously published a scoping review exploring what is known about positive psychological constructs in this population. A key finding was that evidence-based patient-reported outcome measures (PROMs) were needed to standardize psycho-oncology research.
Methods: We undertook a systematic review of measurement properties focused on PROMs in the pediatric and adolescent/young adults (AYAs) with cancer populations. We searched for PROMs that measured at least 1 of 15 previously identified, key positive constructs. This systematic review followed COSMIN guidelines, considered the gold standard manual for systematic reviews of measurement properties.
Results: We identified 20 (22 if proxy reports are counted separately) unique PROMs that met inclusion criteria. Of those, only five were recommended for use given the current evidence. The remainder may be used if no alternative exists. Only eight PROMs had any evidence of content validity, considered the most important psychometric property by COSMIN. Many studies were at risk of bias owing to incomplete or suboptimal methods.
Discussion: Five PROMs are considered reliable for the pediatric and AYA with cancer populations. A number of PROMs require additional research to ensure their items and instructions are comprehensive, relevant, and comprehensible to children and AYAs. Given the overall lack of research, this review may be considered a starting point for the future refinement of a core set of PROMs to measure positive psychological constructs.
- measurement properties
- patient-reported outcome
- psychometric review
- quality of life
- systematic review