The impact of quality of life on treatment preferences in multiple sclerosis patients
Authors Lee Mortensen G, Rasmussen PV
Received 23 May 2017
Accepted for publication 23 September 2017
Published 19 October 2017 Volume 2017:11 Pages 1789—1796
Checked for plagiarism Yes
Review by Single-blind
Peer reviewers approved by Dr Amy Norman
Peer reviewer comments 3
Editor who approved publication: Dr Johnny Chen
Gitte Lee Mortensen,1 Peter V Rasmussen2
1Medical Anthropology Department, AnthroConsult, 2Department of Neurology, University Hospital of Aarhus, Aarhus C, Denmark
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.
Keywords: disease-modifying therapy, patient perspectives, quality of life, qualitative research, decision-making, needs
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