Practical considerations towards the collection of patient reported outcome data among hematopoietic cell transplant recipients

Journal article

Background: There is increasing interest in using patient-reported outcome measures (PROMs) to assess quality of life (QoL) following hematopoietic cell transplant (HCT). However, there is limited consensus on how such data should be collected within HCT services. This survey study investigated health professionals (HCPs) views towards QoL data collection and factors affecting the use of PROMs within HCT centres in the UK. Method: Individual survey items were based upon the Consolidated Framework for Implementation Research (CFIR). The CFIR consists of five domains which are known to affect intervention (in this instance PROM) adoption and implementation. National coverage was achieved with survey responses received from all UK adult allograft HCT centres. Results: Findings indicated PROMs use in UK HCT services is ad hoc with PROMs mostly used as screening or diagnostic tools for emotional health or for service improvement activities including audits. HCPs reported that patient-reported outcome (PRO) data collection is limited by a lack of resource, infrastructure and referral pathways if the PROM were to flag a patient issue. A large proportion of HCPs (> 70%) noted that PRO data within their centre would be best enabled through dedicated research staff and data management infrastructure to support data collection and storage. Despite growing evidence of the utility of electronic data capture, most HCPs (> 50%) believed electronic PROMs (ePROMs) may be difficult to implement due to data protection issues and limited access to electronic devices. Conclusions: These findings highlight the opportunities and challenges to PRO data collection in UK HCT services and demonstrate the need for practical solutions. The development of a standardised approach to PROM use among HCT recipients and investment in workforce and data management infrastructure is needed to support an integrated approach to PRO data collection, storage and use.

Authors: Pugh, G; Yiallouridou, C; Hart, D; Miller, R; Danby, R

• Alternative title: Patient-Reported Outcome Measurement in the UK
• Publication status: Published
• Peer review status: Peer reviewed
• Publisher: Springer
• Journal: The Patient - Patient-Centered Outcomes Research
• Volume: 19
• Issue: 1
• Pages: 113-120
• Publication date: 2025-09-11
• Acceptance date: 2025-08-11
• DOI: 10.1007/s40271-025-00769-z
• EISSN: 1178-1661
• ISSN: 1178-1653
• Language: English