Abstract
BackgroundMultiple myeloma is an incurable haematological cancer that affects physical, psychological and social domains of quality of life (QOL). Treatment decisions are increasingly guided by QOL issues, creating a need to monitor QOL within clinical practice. The development of myeloma-specific QOL questionnaires has been limited by a paucity of research to fully characterise QOL in this group. Aims of the present study are to (1) explore the issues important to QOL from the perspective of people with multiple myeloma, and (2) explore the views of patients and clinical staff on existing QOL questionnaires and their use in clinical practice.MethodsThe ‘Issues Interviews’ were semi-structured qualitative interviews to explore the issues important to QOL in a purposive sample of myeloma patients (n = 20). The ‘Questionnaire Interviews’ were semi-structured qualitative interviews in a separate purposive sample of myeloma patients (n = 20) to explore views on existing QOL questionnaires and their clinical use. Two patient focus groups (n = 7, n = 4) and a focus group of clinical staff (n = 6) complemented the semi-structured interviews. Thematic content analysis resulted in the development of a theoretical model of QOL in myeloma.ResultsMain themes important to QOL were Biological Status, Treatment Factors, Symptoms Status, Activity & Participation, Emotional Status, Support Factors, Expectations, Adaptation & Coping and Spirituality. Symptoms had an indirect effect on QOL, only affecting overall QOL if they impacted upon Activity & Participation, Emotional Status or Support Factors. This indirect relationship has implications for the design of QOL questionnaires, which often focus on symptom status. Health-service factors emerged as important but are often absent from QOL questionnaires. Sexual function was important to patients and difficult for clinicians to discuss, so inclusion in clinical QOL tools may flag hidden problems and facilitate better care. Patients and staff expressed preferences for questionnaires to be no more than 2 pages long and to include a mixture of structured and open questions to focus the goals of care on what is most important to patients.ConclusionExisting QOL questionnaires developed and validated for use in myeloma do not capture all that is important to patients and may not be well suited to clinical use.
Highlights
Multiple myeloma is an incurable haematological cancer that affects physical, psychological and social domains of quality of life (QOL)
This is the first study to report a theoretical model of QOL in multiple myeloma, and the first report of the preferences of myeloma patients and clinical staff for the design and clinical utility of QOL questionnaires
There is clear utility for symptom items in clinical QOL tools, where they might uncover hidden problems and help prioritise or monitor changing symptoms over time. One impact of these findings is that QOL questionnaires should be designed to probe beyond a simple assessment of symptom status (“What is your current level of pain from 1 to 10?”), and instead ask for an evaluation of symptom impact (“How much does pain currently interfere with your life from 1 to 10?”)
Summary
Multiple myeloma is an incurable haematological cancer that affects physical, psychological and social domains of quality of life (QOL). Treatment decisions are increasingly guided by QOL issues, creating a need to monitor QOL within clinical practice. Whilst myeloma remains incurable the survival of patients has significantly improved in the course of the last 15 years as a result of increased availability of more active and less toxic drugs [5]. A number of models of QOL have been reported throughout the literature These include those based on human need [6]; expectations [7]; functioning, disability and health [8]; personal characteristics as mediators [9]; and phenomenological models based on individual perceptions [10]. A recent systematic review found Wilson and Cleary’s model to be the most widely used in the literature [12]
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