Abstract
Introduction
Multiple sclerosis (MS) is a demyelinating disorder with an unpredictable and often disabling course. MS symptoms are very heterogeneous and may lead to reduced physical, cognitive, and psychosocial functioning decreasing patients’ quality of life (QoL). Today, various disease-modifying treatments (DMTs) may prevent disease progression. However, it is increasingly complex to select the right therapy for a given patient and patient preferences should be considered when making treatment decisions. This study aimed to explore the main factors affecting patients’ preferences regarding MS treatment and health care.
Methods
Five qualitative focus group interviews were carried out with a total of 40 participants from across Denmark. A semistructured question guide included questions that were identified in a systematic literature study about QoL and treatment preferences in patients with MS. The participants were asked to describe their disease experiences, their health-related QoL, and reasons behind their preferences with regard to treatment and care. The data were analyzed using content analysis and a constructivist approach.
Results
The participants’ physical, cognitive, and psychosocial QoL and functioning were reduced by disease symptoms, treatment side effects, and mode of administration. Their ability to uphold meaningful role functioning was crucial to their treatment priorities. The preeminence of anticipated efficacy, ie, the patients’ hope that DMT might prevent disease deterioration in the future, was modified by their present QoL and functioning when ultimately framing their treatment preferences. There was an unmet information and support need from neurology clinics, particularly at the time of diagnosis.
Conclusion
The participants’ treatment preferences were influenced by a matrix of treatment and QoL-related factors and evolved with time and along with personal and professional changes in life. The patients preferred to receive a clear recommendation of DMT from the neurologist taking into account their individual functioning and present QoL priorities.
Acknowledgments
The authors wish to thank the Danish MS Society (Scleroseforeningen), particularly PhD and health policy consultant Lasse Skovgaard for his assistance with the inclusion of focus group participants and valuable methodological advice. GLM also thanks Biogen Idec, Denmark, for the unrestricted research grant funding the study. We are indebted to MA Ivan Bredbjerg Madsen for his research assistance at project preparations and data collection as well as anthropologist Steen Lee Mortensen for providing independent analysis and discussion of the qualitative data. Finally, we wish to thank Prof Emerit Michal Pugh and Philip Morley for copy editing the manuscript in English.
Disclosure
GLM is the owner of AnthroConsult who received an unrestricted research grant from Biogen Idec for the present study. AnthroConsult has previously received research grants and/or honoraria from Sanofi Pasteur MSD, Amgen, Pfizer, and Lundbeck A/S, though none related to studies of neurological disorders. PVR received a personal fee from Biogen Idec related to the present study. Within the past 2 years, he has participated in advisory board meetings with Biogen, Novartis, TEVA, Allergan, Roche, and Genzyme, acted as educator for TEVA, Allergan, and Novartis, and undertook letterbox assignments for Biogen. The authors report no other conflicts of interest in this work.