Choosing the right questions – A systematic review of patient reported outcome measures used in radiotherapy and proton beam therapy.

• 39 PROMs were identified as being utilised within radiotherapy and PBT research. • But none received a high content validity score for use within clinical practise. • Most PROMs lacked specificity to radiotherapy side-effects. • Therefore, it is difficult to recommend which PROMs to use routinely. • Using inappropriate PROMs may mean patients do not get the support they need. The implementation of PROMs into clinical practice has been shown to improve quality of care. This systematic review aims to identify which PROMs are suitable for implementation within routine clinical practice in a radiotherapy or PBT service. The bibliographic databases MEDLINE, EMBASE and EMCARE were searched. Articles published between 1st January 2008 to 1st June 2023, that reported PROMs being utilised as an outcome measure were included. Inclusion criteria also included being written in English, involving human patients, aged 16 and above, receiving external beam radiotherapy or PBT for six defined tumour sites. PROMs identified within the included articles were subjected to quality assessment using the COSMIN reporting guidelines. Results are reported as per PRISMA guidelines. A total of 268 studies were identified in the search, of which 52 fulfilled the inclusion criteria. The use of 39 different PROMs was reported. The PROMs identified were mostly tumour or site-specific quality of life (n = 23) measures but also included generic cancer (n = 3), health-related quality-of-life (n = 6), and symptom specific (n = 7) measures. None of the PROMs identified received a high GRADE score for good content. There were 13 PROMs that received a moderate GRADE score. The remaining PROMs either had limited evidence of development and validation within the patient cohorts investigated, or lacked relevance or comprehensiveness needed for routine PROMs collection in a radiotherapy or PBT service. This review highlights that there are a wide variety of PROMs being utilised within radiotherapy research, but most lack specificity to radiotherapy side-effects. There is a risk that by using non-specific PROMs in clinical practice, patients might not receive the supportive care that they need. [ABSTRACT FROM AUTHOR]