Patient-Reported Outcomes in Sarcoma: A scoping review

Abstract

Purpose

Sarcoma is a heterogeneous group of tumours, usually affecting young patients and related to both endogenous and exogenous risk factors. The importance of obtaining the patient's perspective of the illness experience is imperative. Patient-reported outcomes (PROs) are the outcomes that come directly from the patient. They include symptoms, functional health, well-being, quality of life, psychological issues, among other indicators reported by the patients. The objective of this scoping review was to map the PROs in sarcoma patients and how they are measured.

Methods

The review process was guided by the Joanna Briggs Institute (JBI) checklist for scoping reviews.

Results

The search identified 116 potentially relevant studies, with 27 articles meeting the inclusion criteria. The most common PRO evaluated in the selected studies were health-related quality of life (HRQoL), followed by functional outcome, aspects of mental health, and specific symptoms. Generic HRQoL questionnaires were widely used. Quantitative studies usually applied more than one type of Patient-Reported Outcome Measures (PROMs) to measure different PROs.

Conclusions

PROs should be carefully analysed to better understand the sarcoma patient's needs. The PROMs used in the selected studies about sarcoma were not specific to sarcoma, therefore, to better reflect on the perceptions of sarcoma patients, a different new and specific measurement strategy should be considered.