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

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.