Initiating levodopa pump therapy: a qualitative study of patient and caregiver perspectives

People with Parkinson’s disease and their family caregivers described improvements in symptoms after starting levodopa pump therapy, while also reporting practical and emotional challenges during the transition to device-aided treatment. A qualitative study recruited 10 people with Parkinson’s disease and nine family caregivers from two Swedish university hospitals. Semi-structured interviews were conducted 6–24 months after treatment initiation, and the researchers used latent reflexive thematic analysis to examine experiences surrounding decision-making, treatment start-up and later adaptation.

Levodopa infusion therapy is a device-aided treatment that may be introduced when oral medication no longer provides adequate control of Parkinson’s disease symptoms. The study did not evaluate a numerical treatment effect or compare outcomes between groups. Instead, it focused on how patients and caregivers experienced the treatment process. The analysis identified four shared themes: living with the constraints of Parkinson’s disease, sustaining hope in the face of therapeutic uncertainty, adapting to a new treatment while facing practical challenges, and relying on expertise while managing its absence.

Pump therapy was often chosen when participants felt they had limited alternatives, and both patients and caregivers expressed strong trust in specialized multidisciplinary Parkinson’s disease teams. Participants generally reported that their expectations had been met, and both groups described symptom improvements. The priorities expressed by the two groups were not identical, however. People with Parkinson’s disease focused on autonomy, whereas caregivers focused more heavily on the responsibilities associated with treatment. The findings show that initiating and adapting to a levodopa pump involved adjustments in daily routines, responsibilities and expectations, not only changes in symptom experience.

Caregivers frequently said they had not been adequately informed about the realities of daily pump management. The study therefore identified a gap between access to specialist expertise and the practical information needed by families once treatment was underway. The authors concluded that supporting adaptation requires coordinated, person-centred preparation, guidance and follow-up from multidisciplinary specialist teams. Because the evidence comes from a small qualitative sample in two Swedish university hospitals, the findings describe the experiences reported by these participants and are not presented as a general measure of treatment effectiveness or long-term clinical benefit. The study was not a clinical trial, and its results center on perceptions and experiences rather than the prevention of complications or changes in motor-function endpoints.

Subject of Research: Patient and caregiver experiences of initiating levodopa pump therapy for Parkinson’s disease

Article Title: Initiating levodopa pump therapy: a qualitative study of patient and caregiver perspectives

Article References: Scharfenort, M., Nobrell, A., Garon, M., Rosqvist, K., Paul, G., Nilsson, M. H., Antonini, A., Nyholm, D., Odin, P., & Mangrio, E. (2026). Initiating levodopa pump therapy: a qualitative study of patient and caregiver perspectives. BMC Nursing. https://doi.org/10.1186/s12912-026-05527-6

Image Credits: AI Generated

DOI: 10.1186/s12912-026-05527-6

Keywords: Parkinson’s disease, levodopa pump therapy, device-aided treatment, qualitative research, patient perspectives, caregiver perspectives, treatment adaptation, multidisciplinary care, symptom management, Initiating, levodopa, pump