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The Multiple Sclerosis Performance Test MSPT: An iPad-Based Disability Assessment Tool
Published on: June 30, 2014
The impact of quality of life on treatment preferences in multiple sclerosis patients
Gitte Lee Mortensen1, Peter V Rasmussen2
1Medical Anthropology Department, AnthroConsult.
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.
Insights
Patient preferences for multiple sclerosis (MS) treatments are complex, influenced by current quality of life and functioning, not just future efficacy. Clear neurologist recommendations are desired.
Area of Science:
- Neurology
- Patient-centered care
Background:
- Multiple sclerosis (MS) is a heterogeneous demyelinating disease impacting physical, cognitive, and psychosocial functioning, significantly reducing quality of life (QoL).
- Disease-modifying treatments (DMTs) exist to slow MS progression, but selecting the optimal therapy requires considering individual patient preferences.
Purpose of the Study:
- To explore key factors influencing patient preferences for multiple sclerosis treatments and healthcare.
- To understand how patient experiences and QoL shape treatment decisions in MS.
Main Methods:
- Qualitative study involving five focus groups with 40 participants across Denmark.
- Utilized a semistructured interview guide based on a systematic literature review on MS QoL and treatment preferences.
- Employed content analysis with a constructivist approach to analyze qualitative data.
Main Results:
- Disease symptoms, treatment side effects, and administration methods negatively impacted participants' physical, cognitive, and psychosocial QoL.
- Maintaining meaningful role functioning was a primary treatment priority for patients.
- Anticipated treatment efficacy was weighed against current QoL and functioning, influencing final treatment preferences.
- Identified an unmet need for information and support from neurology clinics, especially at diagnosis.
Conclusions:
- MS treatment preferences are a dynamic interplay of treatment efficacy, QoL, and individual life circumstances.
- Patients value clear, personalized DMT recommendations from neurologists that consider their current functioning and QoL priorities.
- Enhanced patient support and information are crucial, particularly during the initial diagnosis phase.
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