Thomas R. Osborne

What issues matter most to people with multiple myeloma and how well are we measuring them?: A systematic review of quality of life tools

Treatment advances in multiple myeloma have increased expected survival from months to years for some patients. Alongside improved survival emerges a need to better understand and measure health‐related quality of life (HRQOL), both in research and clinical settings.

Understanding what matters most to people with multiple myeloma: a qualitative study of views on quality of life

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.

Accuracy of prognosis prediction by PPI in hospice inpatients with cancer: a multi-centre prospective study

The Palliative Prognostic Index (PPI) is a prognostication tool for palliative care patients based on clinical indices developed in Japan and further validated by one study in the UK. The aim of this study was to test its prediction accuracy in a large inpatient hospice sample. The admitting doctor in three inpatient hospices calculated the PPI score on admission. Two hundred and sixty-two patients were included in this study. Based on the PPI score, three subgroups were identified. Group 1 corresponded to patients with PPI ≤4 and the median survival of 53 days (95% CI 40 to 80 days). Group 2 corresponded to those with PPI >4 and ≤6 and the median survival 15 days (95% CI 12 to 26 days) and Group 3 corresponded to patients with PPI >6 and the median survival of 5 days (95% CI 3 to 7 days). In this study, PPI was able to identify patients’ likelihood of dying within 3 weeks with a sensitivity of 64% and specificity of 83%. It was able to identify a 6-week survival chance with a sensitivity of 62% and specificity of 86%. A one-unit increase in PPI score was estimated to increase the hazard for death by a factor of 1.33 (95% CI 1.26 to 1.40), based on fitting a stratified Cox proportional hazards model. The authors conclude that PPI can be used to predict prognosis for patients with advanced cancer.

Epidemiology of Pain in Cancer

Pain is one of the most common and feared symptoms in patients with cancer, yet the exact number of cancer patients who experience pain is difficult to ascertain. Studies vary widely in the ways they define pain, the populations they study, and the tools they use to measure this complex symptom. These differences can make it difficult to accurately combine results across studies and to generalise their findings.

The Myeloma Patient Outcome Scale is the first quality of life tool developed for clinical use and validated in patients with follicular lymphoma

The development of novel agents and an ageing population has led to an increasing number of patients with follicular lymphoma (FL) living longer with their disease. Health‐related quality of life (HRQOL) is a priority for patients and should guide clinical decisions. The Myeloma Patient Outcome Scale (MyPOS), originally developed for myeloma, was validated in a cross‐sectional survey recruiting 124 FL patients.

PS43 What is Important to the Quality of Life of People with Multiple Myeloma? Implications for the Design Of Quality of Life Questionnaires

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.