Additional file 1: of Spinal disease in myeloma: cohort analysis at a specialist spinal surgery centre indicates benefit of early surgical augmentation or bracing

Description of Data: Mechanism of vertebral compression fractures and sagittal spinal alignment. Mechanism of progressive spinal deformity. Measurements of radiographic parameters. (DOCX 1192 kb

Are we using the relevant questionnaires to assess health related quality of life in multiple myeloma patients in the era of new generation targeted and novel immunotherapies?

  Therapeutic advances have significantly improved the survival of multiple myeloma (MM) patients. Clinicians and researchers should ensure that patients with this incurable cancer are not only living longer, but also living better. Several validated questionnaires are available and frequently used to assess health related quality of life (HRQOL). However, they were developed >20 years ago before the era of new generation treatments, which have unique toxicity profiles. Introduction of new treatment combinations and maintenance therapies also means that these questionnaires may not be able to fully capture all HRQOL aspects. To better understand which of these aspects are truly important, we asked MM patients and healthcare professionals (HCP) from a single centre to indicate the level of relevance of each item in 9 HRQOL questionnaires. Our results revealed that patients ranked items related to social functioning, receiving information about MM and involvement in their management as most relevant. In contrast, HCPs placed highest relevance to items corresponding to symptoms from MM or treatment toxicities. Subgroup analysis of patients revealed additional topics that were deemed relevant: those ≤70 y.o. were more concerned about disease progression whereas those >70 y.o. prioritised items related to physical function; patients with renal impairment and bone disease found having energy and pain more relevant than in the general MM cohort. These findings can contribute to guiding the content development of new HRQOL tools relevant to both MM patients as a whole, as well as specific subgroups receiving newer treatments. </p