Initiating levodopa pump therapy: a qualitative study of patient and caregiver perspectives.
10 affiliations
- 1Department of Clinical Sciences Lund, Faculty of Medicine, Lund University, Lund, Sweden. [email protected].
- 2Department of Neurology, Rehabilitation Medicine, Memory and Geriatrics, Skåne University Hospital, Lund, Sweden. [email protected].
- 3Department of Neurology, Rehabilitation Medicine, Memory and Geriatrics, Skåne University Hospital, Lund, Sweden.
- 4Neurodegenerative Disease Unit, Center for Rare Neurological Diseases (ERN- RND), Department of Neurosciences, Padua Neuroscience Center (PNC), University of Padova, Padova, Italy.
- 5Department of Clinical Sciences Lund, Faculty of Medicine, Lund University, Lund, Sweden.
- 6Department of Health Sciences, Faculty of Medicine, Lund University, Lund, Sweden.
- 7Memory Clinic, Skåne University Hospital, Malmö, Sweden.
- 8IRCCS San Camillo, Venice, Italy.
- 9Department of Medical Sciences, Neurology, Uppsala University, Uppsala, Sweden.
- 10Department of Care Sciences, Malmö University, Malmö, Sweden.
Abstract
Background
Parkinson's disease (PD) is a progressive neurodegenerative disorder affecting motor and non-motor functions. When oral medication no longer provides adequate control, device-aided therapies (DAT), including levodopa infusion therapy, may be introduced. Although DAT can improve symptom management, little is known about how people with PD (PwPD) and family caregivers (FC) experience the initiation process. This study explored PwPD and their FC perceptions during decision-making, therapy initiation, and subsequent adaptation to levodopa pump therapy.Methods
This qualitative study employed semi-structured interviews (6-24 months after treatment initiation) and latent reflexive thematic analysis with ten PwPD and nine FC recruited from two Swedish university hospitals.Results
Thematic analysis revealed four shared themes: (1) Living with the constraints of PD, (2) Sustaining hope in the face of therapeutic uncertainty, (3) Adapting to a new treatment while facing practical challenges, and (4) Relying on expertise while managing its absence. Pump therapy was often chosen due to limited alternatives and strong trust in the specialized multidisciplinary PD team. While both groups experienced symptom improvements, PwPD focused on autonomy whereas FC focused on responsibilities. Expectations were generally met, yet FC frequently felt underinformed about the realities of daily pump management.Conclusions
Our findings highlight that although symptom control improved, both PwPD and FC continued to face practical and emotional challenges. Supporting their adaptation process requires coordinated, person-centred preparation, guidance and follow-up from multidisciplinary, specialized PD teams.Clinical trial registration
Not applicable.
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BibTeX
@article{scharfenort2026initiating,
title = {{Initiating levodopa pump therapy: a qualitative study of patient and caregiver perspectives.}},
author = {Monica Scharfenort and Anette Nobrell and Michela Garon and Kristina Rosqvist and Gesine Paul and Maria H Nilsson and Angelo Antonini and Dag Nyholm and Per Odin and Elisabeth Mangrio},
journal = {BMC nursing},
year = {2026},
month = oct,
doi = {10.1186/s12912-026-05527-6},
url = {https://europepmc.org/article/MED/42908002},
note = {CC BY},
}
RIS
TY - JOUR
TI - Initiating levodopa pump therapy: a qualitative study of patient and caregiver perspectives.
AU - Monica Scharfenort
AU - Anette Nobrell
AU - Michela Garon
AU - Kristina Rosqvist
AU - Gesine Paul
AU - Maria H Nilsson
AU - Angelo Antonini
AU - Dag Nyholm
AU - Per Odin
AU - Elisabeth Mangrio
PY - 2026
DA - 2026/10/20
JO - BMC nursing
DO - 10.1186/s12912-026-05527-6
UR - https://europepmc.org/article/MED/42908002
AB - Background Parkinson's disease (PD) is a progressive neurodegenerative disorder affecting motor and non-motor functions. When oral medication no longer provides adequate control, device-aided therapies (DAT), including levodopa infusion therapy, may be introduced. Although DAT can improve symptom management, little is known about how people with PD (PwPD) and family caregivers (FC) experience the initiation process. This study explored PwPD and their FC perceptions during decision-making, therapy initiation, and subsequent adaptation to levodopa pump therapy.Methods This qualitative study employed semi-structured interviews (6-24 months after treatment initiation) and latent reflexive thematic analysis with ten PwPD and nine FC recruited from two Swedish university hospitals.Results Thematic analysis revealed four shared themes: (1) Living with the constraints of PD, (2) Sustaining hope in the face of therapeutic uncertainty, (3) Adapting to a new treatment while facing practical challenges, and (4) Relying on expertise while managing its absence. Pump therapy was often chosen due to limited alternatives and strong trust in the specialized multidisciplinary PD team. While both groups experienced symptom improvements, PwPD focused on autonomy whereas FC focused on responsibilities. Expectations were generally met, yet FC frequently felt underinformed about the realities of daily pump management.Conclusions Our findings highlight that although symptom control improved, both PwPD and FC continued to face practical and emotional challenges. Supporting their adaptation process requires coordinated, person-centred preparation, guidance and follow-up from multidisciplinary, specialized PD teams.Clinical trial registration Not applicable.
SN - 1472-6955
ER -