# The impact of COVID-19 pandemic on patients with Huntington's disease and care-givers: A French survey

## TL;DR

This study found that the COVID-19 pandemic worsened symptoms and disrupted care for Huntington's disease patients and their caregivers in France.

## Contribution

The study provides new insights into the specific impact of the pandemic on Huntington's disease patients and caregivers in France.

## Key findings

- 48% of participants experienced worsening of pre-existing symptoms during the pandemic.
- 70.8% reported inappropriate care due to delays in medical access.
- 54.2% reported a negative impact on caregivers due to the pandemic.

## Abstract

Although the impact of the first wave of the COVID-19 pandemic on people with several neurological diseases has been largely investigated, little is available concerning people with Huntington's disease (HD).

The main objective of the study was to interview people with HD and their caregivers in the Auvergne-Rhone Alpes region, France.

The interview consisted of 16 items concerning general and medical information, and the impact of the first wave of COVID-19 pandemic on the medical care of people with HD and on their caregivers. The questionnaire was made available as online survey from October 1st, 2020 until November 15th, 2020.

Fifty-two subjects participated (13 men, 39 women, mean age of 47.3 ± 15.5 years). Almost half participants (48%) experienced a worsening of pre-existing symptoms, with new-onset symptoms in the 44% of cases. The most frequent worsening was reported in gait and balance issues (67%), fatigue (58%), anxiety (50%), and depression (50%). The 70.8% of participants reported an inappropriate overall care of HD due to long delays to access medical care (30%) and other health care teams (60%). More than half of the participants (54.2%) reported that the COVID-19 pandemic had a negative impact on their caregiver/family.

Our findings emphasize the negative impact of the first wave of COVID-19 pandemic on the healthcare of HD population and their caregivers. Not only some symptoms were aggravated, but new symptoms appeared during the pandemic. In the future, health policies should be considered to improve the care of patients with rare diseases such as HD.

•The impact of COVID-19 pandemic on Huntington's disease is largely unknown.•Almost half participants (48%) experienced a worsening of pre-existing symptoms.•A new-onset symptoms was observed in the 44% of cases.•The 70.8% of participants reported an inappropriate overall care of the disease.•More than half of participants reported a negative impact of pandemic on caregivers.

The impact of COVID-19 pandemic on Huntington's disease is largely unknown.

Almost half participants (48%) experienced a worsening of pre-existing symptoms.

A new-onset symptoms was observed in the 44% of cases.

The 70.8% of participants reported an inappropriate overall care of the disease.

More than half of participants reported a negative impact of pandemic on caregivers.