Deterioration of people with Parkinson’s symptoms during COVID-19 lockdown: results of a web-based survey in Northwestern Italy

Abstract

Objectives

COVID-19 lockdowns were introduced to control the pandemic, however, they resulted in a global disruption of daily life and of individual and global health. Reduced accessibility of health services, unavailability of food and drugs, and mental health challenges had a huge impact on older people and on people living with disabling conditions such as Parkinson’s disease (PD). We assessed whether and to what extent the more disabled and vulnerable people with Parkinson’s (PwP) were affected by lockdowns.

Method

We analysed responses collected through a web-based survey of PwP according to their self-sufficiency [self-sufficient (SS); nearly self-sufficient (nSS); non-self-sufficient, cared for by family (NSS/F); non-self-sufficient, needs professional care (NSS/PC)].

Results

Fears due to COVID-19 and difficulties with food supply were highest in NSS/F PwP. Difficulties with the supply of Parkinson’s medication or other drugs were apparently not an issue, while problems accessing primary care physicians and neurologists were similar across all patient groups. On the contrary, difficulties with daily and motor activities were higher in NSS/F and NSS/PC PwP. PwP symptoms worsened in all groups, with NSS/F and NSS/PC participants experiencing the worst deterioration. Notably, the deterioration of PwP symptoms was specifically related to changes in daily and motor activities, with participants who reported less engagement in daily and motor activities experiencing the worst deterioration.

Conclusion

Findings strongly support the need for decision-makers and healthcare providers to carefully re-evaluate the risk–benefit ratio of limiting healthcare accessibility for PwP, since evidence shows that lockdown measures primarily impact the groups who are most fragile and vulnerable.

Keywords:

• COVID-19
• lockdown
• Parkinson’s disease
• deterioration of symptoms
• vulnerable participants

Acknowledgments

The authors wish to thank all the people living with Parkinson’s disease who accepted to take part to the survey. The authors wish to express their gratefulness for the valuable support in disseminating the survey among people living with Parkinson’s disease provided by Associazione Parkinson Insubria—AsPI, section of Varese (http://www.parkinson-insubria.org/), section of Cassano Magnago (http://aspicassano.wordpress.com/), section of Legnano (http://aspilegnano.wordpress.com/), section of Novara (http://www.aspi-novara.it/), section of Garbagnate Milanese (http://www.aspigroane.it/). The following Facebook groups of PD patients, families and caregivers also contributed to spread the questionnaire among people with PD, and their valuable support is gratefully acknowledged: Narrare il Parkinson (https://www.facebook.com/groups/1988851188064372/), Caregiver Italiani del Parkinson (https://www.facebook.com/groups/caregiverparkinson/), Giovani Parkinsoniani Italiani (https://www.facebook.com/groups/333979670087900/), Malattia di Parkinson novità? (https://www.facebook.com/groups/1351596784916854/), Malattia di Parkinson e Parkinsonismo–Di tutto e di più-Aiutiamoci! (https://www.facebook.com/groups/3066462883378918/members), Noi.parkinson (https://www.facebook.com/groups/noi.parkinson/), Per un mondo senza Parkinson (https://www.facebook.com/groups/1128641743919273/), PARKINSON-Vibrazioni-tremor senza paura (https://www.facebook.com/groups/561804557306472/members), About Parkinson (https://www.facebook.com/groups/aboutgianfri/members), Parkinson in Piemonte (https://www.facebook.com/groups/parkinsoninpiemonte/). The valuable collaboration of Dr. Elena Rossi and Dr. Stefano Martini (School of Specialization in Clinical Pharmacology and Toxicology, University of Insubria) in revising and managing the electronic dataset is gratefully acknowledged. Finally, the authors are grateful to Alexandra Wills for the kind help in linguistically revising the manuscript.

Disclosure statement

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.