Objective: To investigate how our group of PwP coped with healthcare issues during the pandemic.

Background: COVID-19 pandemic led to changes in how healthcare services were delivered. Non-essential services were cancelled; obligatory testing, mandatory vaccination or compulsory masks added to the challenges of suffering from a progressive neurological disease such as Parkinson’s (PD).

Method: Questionnaire covering the period 03/2020–12/2022 (34 months) with 10 multiple choice and 2 open questions for personal comments. 293 questionnaires were sent by post to PwP known at our neurorehabilitation centre in Austria. 58% return rate, of these: 6 invalid, thus 164 valid responses. Age range 50-90 yrs (64% were over 71 yrs old); 63% male, 37% female; all stages of Hoehn & Yahr.

Results: 79% were on oral treatment, 5 % non-oral, 16% combination of oral and non-oral. Of the PwP on non-oral treatment 73,5% pump treatment (=25 PwP), all of them received home visits from their product specialists, only 2 with a lesser frequency. During the observation period only 45,7% reported a change in medication. 91,4% PwP had checkups with their neurologist and 95,1% with their general practitioner, most of them by personal contact. Nevertheless, 8,6% had no contact with a neurologist and 4,9% with their general practitioner. 80 patients had to have treatment in hospital, of them 52,4% experienced a variety of barriers (e.g. fear, no admission, etc.). Before the pandemic 60% had regular therapy with the allied health professions (most popular: physiotherapy), this reduced to 47% during the pandemic. 96% maintained social contacts within the close family, but 60% suffered from decreased frequencies of social contacts. A wide variety of open comments hint at problems with legislation, communication of information, visiting hours in health care establishments, personal treatment if not vaccinated, etc.

Conclusion: A neurodegenerative disease such as PD needs regular monitoring by neurologists and quality of life is influenced positively by non-medical treatment and social interaction. Our sample of PwP showed that despite many barriers encountered, treatment by health care professionals was mostly delivered, however reduced social and professional contacts were seen as problems. Being able to voice personal opinions in addition to multiple choice answers was generally regarded positively.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/healthcare-experiences-of-people-with-parkinsons-disease-pwp-during-covid-19-pandemic/