title: What issues matter most to people with multiple myeloma and how well are we measuring them? A systematic review of quality of life tools.
abstract: BACKGROUND
  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.
  
  
  OBJECTIVE
  (i) Identify HRQOL tools validated for use in myeloma; (ii) identify issues important to HRQOL from the point of view of patients with myeloma; (iii) describe the measurement properties of each HRQOL tool; (iv) evaluate the content validity of HRQOL tools in terms of their ability to capture all issues important to patients and (v) explore the suitability of each HRQOL tool for use in different settings.
  
  
  METHODS
  Systematic literature review of six databases with no limits by date or language.
  
  
  RESULTS
  Thirty-nine studies reported validation of 13 HRQOL instruments. Seven studies identified issues important to HRQOL from the patients' perspective. No instrument was comprehensive to all issues important to patients. The EORTC-QLQ-C30 and MY24 have undergone the most comprehensive psychometric validation. Most validation occurred in trial patients and not clinically representative groups. No studies evaluated clinical utility of tools alongside routine practice.
  
  
  CONCLUSIONS
  The best existing HRQOL tools are designed predominantly for use in research. Reliable, valid and responsive tools exist for this purpose, but may miss issues important to patients. The design of HRQOL measures should be guided by intended utility, whether for research or clinical practice, and further validation of HRQOL tools in clinically representative groups is needed. Development and validation of HRQOL tools for clinical use may be of value.
authors.affiliation: Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King's College London, and King's College Hospital, 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: Richard J
authors.initials: RJ
authors.lastname: Siegert
authors.forename: Polly M
authors.initials: PM
authors.lastname: Edmonds
authors.forename: Stephen A
authors.initials: SA
authors.lastname: Schey
authors.forename: Irene J
authors.initials: IJ
authors.lastname: Higginson
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D016206:Databases, Bibliographic; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009101:Multiple Myeloma / Q000276:immunology / Q000473:pathology / Q000523:psychology* / Q000628:therapy; D011594:Psychometrics / Q000458:organization & administration / Q000592:standards; D011788:Quality of Life / Q000523:psychology*; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires; D016896:Treatment Outcome