UNDERSTANDING HEALTH RELATED QUALITY OF LIFE CHANGES AND ISSUES RELATED TO DISEASE MODIFYING DRUGS AMONG MULTIPLE SCLEROSIS PATIENTS- A QUALITATIVE STUDY

Author(s)

Bhanegaonkar A1, Madhavan S1, Pawar GV1, Rajagopalan K2, Langlois J31West Virginia University, Morgantown, WV, USA, 2Biogen Idec, Wellesley, MA, USA, 3JKL Research Associates, Tampa , FL, USA

OBJECTIVES: The purpose of this study was to investigate changes in health related quality of life (HRQOL) experienced by patients with multiple sclerosis (MS) and to determine their experiences, opinions, and expectations related to disease modifying drugs (DMDs) used in MS. METHODS: A sample of 18 individuals with confirmed diagnosis of MS was recruited through a university hospital-based neurology clinic. Four focus group (FG) sessions involving semi-structured interviews were conducted.  The FG discussions were audio-recorded and were later transcribed for coding purpose.  Qualitative content analysis of transcribed data was performed by two blinded reviewers using QSR NVivo 8 software.  The data were coded into specific themes as per the research questions. RESULTS: Qualitative analysis indicated twelve major themes related to HRQOL associated with the disease condition and experiences with the DMDs used to treat MS: (1) HRQOL before the diagnosis of MS; (2) HRQOL after the diagnosis of MS; (3) Coping with MS; (4) Opinions regarding the current DMDs; (5) Clinical benefits; (6) Adverse events associated with the DMDs; (7) Side effects associated with DMDs; (8) Treatment adherence; (9) Convenience of DMD administration; (10) Treatment satisfaction; (11) Expectations from the future DMDs; and (12) Cost associated with DMDs.  HRQOL in social, physical, and psychological domains declined considerably among all participants since the diagnosis of MS.  Participants were content with clinical benefits associated with DMDs they were currently taking.  Future DMDs were expected to be safer and easier to administer. CONCLUSIONS: This study provides an in-depth understanding of the various factors that affect HRQOL of patients living with MS and the characteristics of DMDs that are of most value to MS patients.  Study results support the need to determine patient preferences for specific adverse events associated with DMDs against the clinical benefits in order to improve adherence with DMDs and consequent outcomes.

Conference/Value in Health Info

2011-05, ISPOR 2011, Baltimore, MD, USA

Value in Health, Vol. 14, No. 3 (May 2011)

Code

PND50

Topic

Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes

Disease

Neurological Disorders

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