"It's very important that you measure throughout that journey…": patient perspectives towards quality-of-life data collection following haematopoietic cell transplant.

BACKGROUND

There is increasing interest in using Patient Reported Outcome Measures (PROMs) to provide evidence of how a haematopoietic stem cell transplant (HCT) affects blood cancer patients' long-term quality-of-life (QoL). The purpose of this qualitative study was to explore patients' opinions on what QoL data should be collected post-transplant, when this data should be collected, the use of this data beyond research, and how this data should be captured.

METHODS

Twenty-one HCT patients with median age of 45 years (range: 26-71 years) took part in a semi-structured interview. Two commonly used PROMs, the Functional Assessment Cancer Therapy - Bone Marrow Transplant (FACT-BMT) and Patient Reported Outcome Measurement Information System (PROMIS-29) were used as discussion prompts. All interviews were audio recorded, transcribed verbatim and analysed in NVivo using thematic analysis. A Patient Advisory Group (PAG) (n = 6 patients) co-designed the study and were involved in reviewing the coding framework and findings generated.

RESULTS

Patients expressed a strong preference for QoL data to be collected which is transplant specific and routinely captured over time. They felt QoL measurement could enable identification of post-transplant concerns, facilitate communication with health professionals, and facilitate access to personalised support. Many patients described being oblivious to the potential long-term implications of HCT and felt it would be reassuring to know the 'typical' trajectory of HCT recovery from patient outcome data collected > 100 days post-transplant. Patients were positive about electronic data capture but did acknowledge that depending on age, digital literacy, and access to electronic devices, a one-size-fits-all approach to QoL data collection would not suit all patients. Additional barriers to QoL measurement included the poor relevance and utility of the individual questionnaire items and concerns about whether PROMs were sensitive enough to capture day to day variation in wellbeing post-transplant.

CONCLUSIONS

Findings indicate patients are supportive of QoL data capture specific to transplant and feel such data could be used to support individual self-monitoring and post-transplant recovery. Patients feel that data should be collected routinely on a long-term basis via electronic methods.