title: Role of health-related quality of life measures in the routine care of people with multiple sclerosis.
abstract: Health-related quality of life instruments are expected to be of particular value in routine care of people with multiple sclerosis (MS), where they may facilitate the detection of disease aspects that would otherwise go unrecognised, help clinicians appreciate patient priorities particularly in terms of treatment goals, facilitate physician-patient communication, and promote shared decision-making. However, it appears that these instruments are little used routine clinical approaches to people with MS. To address this issue, I performed a bibliographic search of studies that evaluated the efficacy of generic or disease-specific health-related quality of life (HRQOL) instruments in MS clinical practice from clinicians' or patients' perspectives. I found only one cross-sectional study, which compared preferences for three instruments, and assessed acceptability in people with MS. Reasons for lack of transfer of HRQOL measurements to clinical practice may be cultural, methodological, or practical. With regard to MS, the proliferation of instruments seems to constitute a barrier, with no particular instrument having gained wide popularity or consensus. Other barriers are lack of resources for the administration, collection and storage of the data, and inability of clinicians to score, interpret, and use HRQOL instrument to guide clinical care. It is therefore important to refine existing tools, extending clinical validation to wider contexts and cultures. More studies assessing acceptability and clinicians' and patients' preferences for different instruments are also required.
authors.affiliation: Epidemiology Unit, National Neurological Institute C, Besta, Via Celoria 11, 20133 Milan, Italy. solari@istituto-besta.it
authors.forename: Alessandra
authors.initials: A
authors.lastname: Solari
mesh_terms: D003657:Decision Making; D006801:Humans; D009103:Multiple Sclerosis / Q000503:physiopathology* / Q000523:psychology / Q000628:therapy; D017063:Outcome Assessment, Health Care; D011594:Psychometrics / Q000295:instrumentation*; D011788:Quality of Life; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires