What are the experiences and challenges people with Parkinson’s disease and their carers have with their Parkinson’s medications? A focus group study

Abstract Introduction There are no cures or disease modifying agents for Parkinson’s disease (PD). Disease management is based on symptom control through individualised medication regimens.1 Although medications are central to PD management, little research has been conducted to understand the lived experience and challenges of medications from the perspective of people with PD and their carers.2 Aim To explore and understand the experience people with PD and their carers have with their PD medications. Methods We performed a qualitative study employing focus groups. People with PD and their carers from across England were invited through professional networks including Parkinson’s UK Excellence Network to participate in focus groups conducted virtually (via Microsoft Teams). A topic guide was used to prompt discussion to explore experience, difficulties and impact of PD on taking medications. Data were analysed using inductive thematic analysis supported by NVivo v14 software. Results Ten people with PD (7 female) and five carers (3 female) all aged between 55 and 84 years old took part in four different focus groups between March 2024 and January 2025. Analysis of themes identified four key challenges people with PD experience with their medications: (i) complexity: encompassing challenges with taking medications multiple times a day including remembering and managing interactions with food and other medications, e.g. ‘I take six different things and they all clash with each other’; (ii) information provision: whereby information about medications received was felt to be insufficient, and problems with communication between healthcare professionals added to confusion, e.g. ‘it was never explained to us properly’; (iii) response to medications: including side effects and variation in effects of each dose which were difficult to manage e.g. ‘sometimes the tablets decide it for you’; and (iv) logistics of medication intake: which were clearly onerous including administrative tasks to ensure continued supplies, and physical challenges with packaging e.g. ‘I’m constantly ordering the next lot’. Conclusion Our work highlights key challenges faced by people with PD and their carers in managing their PD medications, including complexity, lack of information, response to medication, and actions involved. These findings underline the need for more personalised and supportive approaches in relation to PD medication management. Whilst we reached saturation of themes, the work represents a small sample of people with PD. Further work to validate these themes in a large population would help to inform effective interventions to improve medication experience.