Quality of life in multiple myeloma : longitudinal trajectories and monitoring symptoms and quality of life to improve quality of care

• Main Author: Ramsenthaler, Christina
• Other Authors: Higginson, Irene Julie ; Gao, Wei
• Published: King's College London (University of London) 2017
• Subjects: 362.19699
• Online Access: https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.718629

Background: Multiple myeloma is an increasingly common disease, but there is little evidence about the change in symptoms and problems in more advanced stages. Aim: To describe the health-related quality of life (QOL) trajectories in multiple myeloma, and to evaluate the longitudinal validity of the Myeloma Patient Outcome Scale (MyPOS), a questionnaire to monitor QOL and palliative care concerns. Methods: A national, multi-centre, observational study comprising (1) a cross-sectional analysis merging data from two studies, and (2) a longitudinal study, recruiting patients at various stages of the disease. Demographic and clinical data was collected alongside QOL measures. Analysis: (i) prevalence of symptoms and independently associated factors with poor quality of life, (ii) latent growth mixture analysis of quality of life trajectories, (iii) longitudinal validity and reliability via Rasch analysis, Generalizability theory and responsiveness to change. Results: (i) Cross-sectional study: 557 patients reported a mean of 7.2 symptoms with the most common symptoms, pain, fatigue and breathlessness, being present in 61-78% of patients. General symptom level, pain, anxiety and depression, physical decline, age and phase of illness had significant independent associations with high palliative care concerns. (ii) Longitudinal study: Four classes of individual QOL trajectories were identified (n=224): declining HRQOL over 8 months, stable moderate to good QOL, improving QOL, and fluctuating poor QOL. Logistic regression analysis revealed general symptom level (OR = 1.28), pain (OR=1.03) and presence of clinically relevant anxiety or depression (OR=1.19) to be predictors for a declining or poor QOL trajectory. (iii) The MyPOS demonstrated good to excellent test-retest reliability. Rasch analysis identified limitations of suboptimal scale-to-sample targeting, resulting in floor effects. Responsiveness analysis yielded an MID of +2.5 for improvement and -4.5 for deterioration. Conclusions: People with myeloma have four main trajectories of QOL which can be predicted by symptoms and psychological concerns. These could be tested as triggers for additional palliative support. The MyPOS is a valid and reliable outcome measure to monitor these indicators in routine clinical practice.