Objective: To quantify medication burden among people with Parkinson’s disease (PD) and explore factors which contribute to medication experience in PD.

Background: Individualised, complex medication regimens are central to symptom control in PD. Despite many interventions to support people with their PD medicines, little is known about patient’s experiences.^[1] Missed, delayed and incorrect doses can have significant impact on symptom control and quality of life.

Method: Adults diagnosed with PD were invited to participate in a cross-sectional study through the research network of a patient charity, Parkinson’s UK, between September and October 2025. A survey incorporating demographic and clinical factors was used. The survey was anchored on the validated Living with Medicines Questionnaire v3 (LMQ) which evaluates patient-reports of practical, physical and emotional burden of long-term medication.^[2] LMQ scores and visual analogue scale (VAS) of total burden responses were analysed using descriptive and inferential statistics to determine if relationships existed with demographic data and other medication related factors. Free text responses were analysed using directed content analysis guided by LMQ themes. Ethics approval from King’s College London: LRS-24/25-48658.

Results: 359 people with PD responded, with 341(95%) taking medications >3 times per day (see table 1 for descriptives). 323(90%) of participants had moderate or high medication burden. There were no significant differences in scores between male and female participants. Medication burden scores from LMQ correlated with self-reported VAS scores (r=0.420, p=0.01). The burden of medications reported increased with more PD medications (r=0.338, p =0.01) and more frequent doses (r=0.307, p=0.01). Of the 8 themes in the LMQ, the highest mean burden score as a percentage of possible total was ‘control/autonomy to vary regimen’ (10.4/15). The lowest score was in theme ‘cost related burden’ (4.6/15). Free text responses were left by 165(46%) of participants and were aligned with the LMQ themes e.g. practical difficulties (table 2).

Conclusion: The burden of medicines for people with PD is high. The results highlight a need for the healthcare system to address challenges including control and practicalities of accessing medicines in a sustainable way to enhance quality of life for people with PD and their carers.

Table 1: Participant Characteristics

Table 2: Free text response summary

References: 1. Jones S, Patel JP, Twigg MJ, Chaudhuri KR. What is known about the challenges people with Parkinson’s disease experience with their medicines and what solutions have been explored to overcome them? A scoping review. Int J Pharm Pract. 2024 Nov 14;32(6):431-445. doi: 10.1093/ijpp/riae051. PMID: 39285532.

2. Katusiime B, Corlett SA, Krska J. Development and validation of a revised instrument to measure burden of long-term medicines use: the Living with Medicines Questionnaire version 3. Patient Relat Outcome Meas. 2018 May 28;9:155-168. doi: 10.2147/PROM.S151143.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/medication-burden-and-associated-challenges-for-people-with-parkinsons-a-survey-of-359-uk-patients/