Few centers in the United Kingdom collected quality of life (QOL) data as part of their routine care of patients with multiple myeloma (MM), despite the increasing evidence of the importance of QOL information in understanding patient outcomes, according to the results of a survey study published in the British Journal of Nursing.
“Although QOL data has been collected for many years in myeloma studies, they have not be used to inform patient outcomes,” the authors wrote in their report. The aim of this study was to determine which QOL tools are being used as part of routine care.
In the study, an online and paper survey were circulated to contact lists from Bloodwise, Myeloma UK, Cancer Research UK, and at the UK Myeloma Forum. Data from 26 centers across England and Wales were collected.
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Just 3 of the 26 centers reported that they collect QOL data and 1 center reported conducting a Macmillan Holistic Needs Assessment during the standard care of patients with MM.
The Myeloma Patient Outcome Scale (MyPOS) was used by all 3 centers that reported collecting QOL data. In addition, 1 center also used the Functional Assessment of Cancer Therapy – Bone Marrow Transplantation (FACT-BMT) questionnaire, the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life of Cancer Patients (QLQ C30), or EORTC Quality of Life Multiple Myeloma (MY-24). Another center reported using the Quality of Life Index in addition to the MyPOS.
QOL tools were administered either before, during, or after a clinic visit, but not during a set point in the care pathway.
The authors concluded that these findings suggest that “There is a lack of evidence to confirm that health-related QOL is being addressed in standard care.” They added that “further work is required to explore…the impact of patient-reported outcome measures or holistic needs assessments in myeloma services in different contexts, to understand the clinicians’ and patients’ perspectives.”
Reference
Kirkpatric S, Campbell K, Harding S. A survey of quality-of-life tools used in the routine care of patients with multiple myeloma. Br J Nurs. 2023;32:S10-S14. doi: 10.12968/bjon.2023.32.5.S10
