Qualitative focus-group study exploring travel experiences, challenges, adaptations, and information needs of people living with Parkinson’s disease and their carers.

While of limited direct value for molecular or mechanistic therapeutic discovery, the findings inform patient-centered care, trial design, adherence considerations, and real-world outcome measures that can aid translation and implementation of PD interventions.

BACKGROUND: Travel is an important contributor to quality of life, independence and social participation. For people living with Parkinson's disease (PD), however, travel can pose unique health and logistical challenges. Despite the increasing emphasis on health-related quality of life in PD management, little is known about the travel needs of people living with PD. This study explored the travel experiences, needs, attitudes and practises of people living with PD, with the aim of informing future research, practice and guidance. METHODS: A qualitative study using the focus group methodology was conducted with 20 participants: 10 people living with PD and 10 carers. Data were analysed using a thematic content analysis. RESULTS: Four overarching main themes were identified: 1, Changing travel patterns; 2, Anxiety and stress of planning; 3, Travel challenges and adaptations, and 4, Addressing PD information gaps. CONCLUSION: Travel presents challenges for people living with PD and their carers. This study highlights the complexity of these travel-related health needs and the need for a multi-disciplinary and personalized approach. The implementation of dedicated information resources, training of operators and the promotion of support networks are fundamental steps to improving the autonomy and wellbeing of patients and their partners/carers during travel.