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Qualitative factors shaping MS patients' experiences of infusible disease-modifying drugs: a critical incident
Janni Lisander Larsen1, Jakob Schäfer2, Helle Hvilsted Nielsen3
1Research Department, PharmaRelations Aps, Virum, Denmark janni.larsen@pharmarelations.dk.
Objective:
To explore factors shaping the experiences of patients with relapsing-remitting multiple sclerosis with infusible disease-modifying drugs in a hospital setting.
Design And Settings:
The critical incident technique served as a framework for collecting and analysing patients' qualitative account practices involving infusible disease-modifying drugs. Data were collected through semistructured interviews and one single-case study. Participants were recruited from all five regions in Denmark. Inductive thematic analysis was used to identify and interpret factors shaping patients' infusion journey over time.
Participants:
Twenty-two patients with relapsing-remitting multiple sclerosis receiving infusion with disease-modifying drugs (natalizumab, alemtuzumab and ocrelizumab).
Results:
Four time scenarios-preinfusion, day of infusion, long-term infusion and switch of infusion-associated with the infusion of disease-modifying drugs were analysed to reveal how different factors could both positively and negatively affect patient experience. Time taken to make the treatment decision was affected by participants' subjective perceptions of their disease activity; this may have set off a treatment dilemma in the event of a pressing need for treatment. Planning and routine made infusion practices manageable, but external and internal surroundings, including infusion room ambience and the quality of relationships with healthcare professionals and fellow patients, affected patients' cognitive state and well-being irrespective of the infusion regimen. Switching the infusion regimen can reactivate worries akin to the preinfusion scenario.
Conclusion:
This study provides novel insight into the positive and negative factors that shape patients' experience of infusion care practices. From a patient's perspective, an infusion practice is not a solitary event in time but includes planning and routine which become an integral part of their multiple sclerosis management. The quality of space and the ambience of the infusion room, combined with the relationship with healthcare professionals and fellow patients, can be a significant source of knowledge and support people with relapsing-remitting multiple sclerosis in their experience of agency in life.
Insights
Patient experiences with multiple sclerosis infusions are shaped by planning, routine, and the environment. Positive relationships with healthcare providers and fellow patients significantly impact well-being during infusion therapy.
Area of Science:
- Neurology
- Patient Experience Research
- Healthcare Management
Background:
- Relapsing-remitting multiple sclerosis (RRMS) requires long-term management with disease-modifying drugs (DMDs).
- Infusible DMDs are a common treatment modality for RRMS, necessitating hospital visits and impacting patients' lives.
Purpose of the Study:
- To explore factors influencing the experiences of patients with RRMS undergoing treatment with infusible DMDs in a hospital setting.
- To identify positive and negative elements affecting patient journeys throughout the infusion process.
Main Methods:
- Qualitative study utilizing the critical incident technique.
- Semistructured interviews and a single-case study with 22 RRMS patients across Denmark.
- Inductive thematic analysis of patient accounts related to preinfusion, infusion day, long-term infusion, and regimen switching.
Main Results:
- Treatment decisions were influenced by subjective perceptions of disease activity.
- Planning and routine facilitated manageable infusion practices.
- Infusion room ambience and relationships with healthcare professionals and peers significantly affected patient well-being.
- Switching infusion regimens could reintroduce preinfusion anxieties.
Conclusions:
- Infusion practices are integral to multiple sclerosis management, extending beyond the infusion event itself.
- The quality of the physical environment and interpersonal relationships are crucial for patient support and agency.
- Understanding these factors can optimize the infusion care experience for RRMS patients.
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