In-person when necessary and available, remotely when possible - How telemedicine can support palliative care for persons with Parkinson's disease: a qualitative study.

BACKGROUND: Essential components of optimal palliative care for people with Parkinson’s disease (PD) include adequate access and timely initiation of palliative care conversations. However, care for people with PD faces several challenges, including limited access, time constraints for healthcare professionals, cognitive decline, and emotional barriers around end-of-life discussions. Telemedicine may help address some of these challenges. This study explored how telemedicine could support palliative care for people with PD from the perspectives of people with PD, family caregivers, and healthcare professionals. METHODS: Conducted alongside the European PD_Pal project, this qualitative study explored how telemedicine could support different aspects of palliative care for people with PD. Between September 2022 and January 2023, we interviewed 58 stakeholders. Participants were primarily recruited from the Netherlands, but also from France, Germany, Greece, Italy, Sweden, and the United Kingdom, including 15 people with PD, six family caregivers, and 37 healthcare professionals. The semi-structured interview guide was co-created with a patient advisor panel and addressed remote communication, remote monitoring, and online education information provision. Data were analysed using thematic analysis. RESULTS: We identified four themes describing how telemedicine can support palliative care for people with PD. (1) Talking about palliative care remotely enhanced access for people with PD and their family caregivers but reduced emotional connection due to the loss of physical proximity. (2) Gaining a complete picture of the person with PD remained dependent on in-person examinations, while remote monitoring offered complementary at-home data of variable perceived usefulness. (3) Transferring knowledge about palliative care was facilitated by online platforms that improved communication and coordination among healthcare professionals and provided trustworthy, understandable, and up-to-date information for people with PD and family caregivers. (4) Prerequisites for successful implementation included addressing barriers such as low digital literacy, advanced age, and cognitive decline, whereas proactive engagement and independence facilitated telemedicine. Participants also highlighted privacy, ethical, and financial concerns. CONCLUSIONS: Participants generally preferred to discuss palliative care topics in person, but remote consultationscan sustain someone’s access to care when an in-person visit is no longer possible or feasible. Telemedicine waswelcomed for transferring palliative care knowledge between healthcare professionals and to people with PD andfamily caregivers.