title: Understanding what matters most to people with multiple myeloma: a qualitative study of views on quality of life.
abstract: BACKGROUND
  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. 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.
  
  
  METHODS
  The '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.
  
  
  RESULTS
  Main 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.
  
  
  CONCLUSIONS
  Existing 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.
authors.affiliation: Department of Palliative Care, Policy and Rehabilitation, King's College London, London, UK. thomas.osborne@kcl.ac.uk.
authors.forename: Thomas R
authors.initials: TR
authors.lastname: Osborne
authors.forename: Christina
authors.initials: C
authors.lastname: Ramsenthaler
authors.forename: Susanne
authors.initials: S
authors.lastname: de Wolf-Linder
authors.forename: Stephen A
authors.initials: SA
authors.lastname: Schey
authors.forename: Richard J
authors.initials: RJ
authors.lastname: Siegert
authors.forename: Polly M
authors.initials: PM
authors.lastname: Edmonds
authors.forename: Irene J
authors.initials: IJ
authors.lastname: Higginson
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009101:Multiple Myeloma / Q000473:pathology / Q000523:psychology*; D063868:Patient Outcome Assessment; D036301:Qualitative Research; D011788:Quality of Life; D011795:Surveys and Questionnaires / Q000592:standards*