Survey of the Relevance of Quality of Life (QoL) Questionnaires (QoLQs) Currently Used to Evaluate Multiple Myeloma (MM) Patients' Qol in Real-World MM Patients and Healthcare Professionals (HCPs)

Abstract

Background: Advances in treatment options for Multiple Myeloma (MM), have significantly improved life expectancy. MM related organ dysfunction, treatment toxicity, age and overall health comorbidities have major impact on patients' Quality of Life (QoL). Several QoL Questionnaires (QLQs) are used in clinical and research practice, although these were developed and validated years prior to the plethora of the current novel therapies. The aim of this study was to evaluate the relevance of these QoLQs to the QoL of MM patients in the current era. Methods: MM Patients and MM Healthcare Professionals (HCPs) (physicians, nurses, physiotherapists, dieticians and pharmaceutical representatives) were asked to complete online surveys assessing the relevance of the total of 149 questions from the internationally commonly used QoLQs (EORTC QLQ-C30, EORTC QLQ-MY20, EORTC QLQ-CIPN20, EQ-5D-3L, FACT-G, FACT-MM, FACT-N, FACIT-F) to the MM patients' QoL. HCPs and patient demographics, disease and treatment characteristics were collected for each survey. The relevance of each question of the MM QoLQs was graded using the 5-point Likert scale: not relevant, slightly relevant, relevant, fairly relevant, and very relevant. Separate analysis was performed for HCPs and MM patients' responses. MM patients' results were further stratified based on age, treatment lines, active treatment and time from diagnosis. Analysis was performed initially for (I) the not relevant versus very relevant questions and further analysis was conducted to sense relevance for (II) non relevant + slightly relevant versus the fairly relevant +very relevant and (III) non relevant + slightly relevant and the relevant+ fairly relevant +very relevant. Relevance was defined as agreement ³ 50% between respondents. Results: 224 MM patients of different age, racial origin, time from diagnosis and on different treatment regimens and 39 HCPs completed the surveys. From the MM patients' perspective, only eight questions addressing their social, family and emotional well-being [{FACT-G} GS2, GS4, GS5, GS6 GE2, GF3-4; {FACT-N} N2 ] were graded as very relevant irrespective of their age, disease status and prior therapy lines. Further subgroup analysis identified a trend for significant relevance between the ≤70 years vs >70 years old age groups for the FACTG QoL subscales: Physical (PWB), Functional (FWB), Emotional (EWB) and Social/Family (SWB) Well-Being and the FACT-N N2. Sub-analysis of the responses, revealed 5 further relevant questions in stage II: {FACT-G} GS1, GS2, GS4, GF3, GF4 and 28 in stage III of the analysis: {EORTC QLQ-C30} Q1, 2, 29, 30; {EORTC QLQ-MY20} Q48; {EORTC 5D-3L} Q16; {FACT-G} GS1-5, GE6, GF1-7; {FACT-MM} P2, N3, Leu6; {FACT-N} An5, N2-3; {FACIT-F} An5, 7, 13. These questions explore further aspects of FWB, EWB and SWB of the patients. However, 27/149 of the total QoL questions were considered as non-relevant by the MM patients. Interestingly, the >70 years old age-group did not consider the MM-associated mobility issues as relevant to their QoL that could be partially explained by the co-existing comorbidities. In contrast, HCPs survey response graded the majority of the existing QoL questions at least somewhat relevant. HCPs valued 61 questions referring -in addition to the emotional issues that patients raised- to reduced vitality, limitations in physical ability, effects on the family role, working capacity, neuropathy and pain as very relevant QoL aspects when caring for MM patients. Conclusions: This survey on assessing how MM patients and HCPs graded the relevance of the >15 years old, validated MM QoL questionnaires showed significant differences between the 2 groups' responses. From the MM patients' perspective, the majority of the current QoLQ were not relevant in representing their disease or treatment -related QoL issues. There was a trend for significant difference in QOL issues for age groups that could be incorporated with frailty. This survey results stress the need to develop an updated patient centric QoLQ, which would assist HCPs in therapy decision-making.