Patient focused research

The purpose of PrEQoL is to pilot the collection of demographic (namely ethnicity and socioeconomic status) and quality of life data among allogeneic HCT recipients using a digital web-based tool hosted by Anthony Nolan. Allogeneic HCT patients will be invited to complete a brief demographic and quality of life questionnaire at four timepoints: before transplant conditioning, on the day of their transplant, 28 days post-transplant and 100 days post-transplant. The primary outcome of PrEQoL is percentage uptake (recruitment rate) at baseline and percentage drop-out (participant retention) at each data collection interval (Day 0, Day 28, and Day 100). Secondary outcomes include completion rates of outcome measures, patterns of missing data, and participant experience and satisfaction with participation within the study (collected via feedback forms). The PrEQoL study will inform a subsequent study tilted SEQoL ‘Scaled collection of socioEconomic and Quality of Life data from patients undergoing allogeneic haematopoietic cell transplantation in the UK’. We anticipate the findings from PrEQoL and SEQoL will provide insight on inequity at both the individual patient and the system level and influence planning and provision of future HCT services.

Background: Patient Reported Outcome Measures (PROMs) are being increasingly used to assess the impact of disease and treatment on patient quality of life (QoL) and symptoms. At present patient reported outcome (PRO) data is not routinely collected in hematopoietic cell transplant (HCT) centres. Little is known about health professionals’ views or the factors influencing PRO data collection and PROMS use.

Aim: The purpose of this study is to identify enablers and barriers to PRO data collection and PROMs use at HCT centres in the UK. This study will include investigating the knowledge and attitudes of HCT professionals towards PRO data collection and existing PROM tools.

Method: An online survey will be distributed to health professionals within the UK who identify as working with HCT recipients. Survey items will be developed based on the Consolidated Framework for Implementation Research (CFIR) which classifies barriers and enablers to practice adoption into intervention, external organisational, internal organisational, individual and process related factors.

Results: Data from this survey will be used to identify enablers and barriers to PRO data collection across the HCT community in the UK. Specifically, this survey will provide insight on factors internal to specific HCT centres which may impact on PRO data collection including resource, capacity, knowledge and beliefs about PROMs.

Impact: The study findings will be used to the roll-out strategy of the ‘SEQoL’ programme which aims to collect socioeconomic and QoL data from HCT recipients.

The research team are working with Patient Advisory Group members to co-design a qualitative interview study to explore patient views about how socioeconomic and PRO data should be collected in the HCT setting. It is hoped that during the interview study patients will share their perspectives on i) how and when this type of data should be collected and II) whether existing PRO tools reflect the patient experience of wellbeing after a stem cell transplant.