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.
Keywords: health services administration & management; multiple sclerosis; neurology; qualitative research; quality in health care.
© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.