Background Multiple myeloma is an incurable cancer, although recent treatment advances have improved expected survival from months to years in some cases. Increasing survival has elevated the importance of understanding and measuring patients’ quality of life (QOL) in research and clinical settings. A number of QOL questionnaires exist for use in myeloma, yet there is a paucity of research to understand what issues are important to QOL from the patients’ perspective.
This study explores the issues important to the QOL of people with myeloma, and how QOL is affected by the disease and its treatment. Implications for the design of QOL questionnaires are discussed.
Methods In-depth qualitative interviews with 20 myeloma patients to identify issues important to QOL and explore the impact of disease and treatment. Participants recruited from King’s College Hospital and St. Christopher’s Hospice, London. Purposive sampling by age, gender, performance status and disease stage. Thematic content analysis of interview transcripts was conducted.
Results Many participants started by discussing the importance of physical function and independence. There appeared to be a dominant role for participatory function in determining QOL – family life, leisure pursuits and other social activities were often identified as important. Physical symptoms such as pain or fatigue were frequently said to be affecting QOL, but often this was through their affect on social and participatory function. Sometimes symptoms were reported, but they did not affect QOL because functional and participatory aspects were maintained. Issues that prevented social engagement or participation were often therefore most deleterious to QOL – such as reduced mobility; susceptibility to infection; and fear of low-trauma fractures. Participants also often discussed the importance of quality, accessible healthcare – particularly good communication and receiving the right amount of information from professionals.
Conclusion These results support the broad consensus that quality of life is multidimensional, involving physical, psychological and social domains. The presence of symptoms per se did not necessarily impair QOL in this group. QOL questionnaires for use in myeloma should perhaps focus less on the presence, absence or severity of a symptom, but consider how much of a problem the symptom is in terms of its broader impact on function. This is particularly important when tools are applied in clinical practice, when the wider burden of symptoms is perhaps of greater interest. Tools for use in myeloma clinical practice should also consider items about the quality of healthcare – since this appears important to patients’ QOL.