Qualitative and quantitative study to explore the impact of covid-19 on community-dwelling adults living with Parkinson's disease (pd) in Maidstone, Kent
I embarked on this study to explore and comprehend the impact of Covid-19 Pandemic on our local Parkinson’s population in Maidstone. There had not been much research into this aspect and it was expected to yield valuable instinct into implementation of appropriate new strategies to patient care. Covid-19 pandemic had disproportionately impacted on the lives of people living with long term conditions, including Parkinson’s disease (PD) (Elbeddini, 2020). Anxiety and depression were as high as 30% in PD patients (Douma, 2020) pre-pandemic.
Two thirds of PD patients who did not contract Covid-19, reported worsening motor and non-motor symptoms during pandemic, according to a study conducted by University of California (George, 2020). Prevalence of PD and unfavourable outcomes from Covid-19 infection, both having a preponderance towards old age it’s not surprising to see considerable negative impacts of pandemic on this patient group(Elbeddini, 2020).
I posted out a quantitative questionnaire to Parkinson’s UK branch members (30). I also contacted patients attending to Parkinson’s clinic (both neurology and elderly care) in Maidstone and Tunbridge Wells NHS Trust, over the phone to go through the quantitative questions (11). Clinic patients were randomly selected from the list obtained through the audit department. I gathered qualitative data from 20 patients/ families by conducting a mini-telephone interview.
Our objectives were to explore,
The challenges faced by the community dwelling PD patients during pandemic.
Unfavourable effects as a result of Covid-19.
Patient preferences and what matters them most; in order to improve medical care and patient experience.
All the patients were aware how to contact the Parkinson’s nurse specialist (PNS) if the need arises. Most (56%) were grateful for the exceptional support from the family, neighbours and a few neighbourhood organisations. Exercise groups and singing classes via Zoom (Parkinsons’ UK, Maidstone branch) were received positively (24%) even though most lost interest over time. Majority (89%) had at least one telephone/ virtual appointment with PD medical team during the pandemic, which they found reassuring and helpful.
Nearly one third (36%) of the study group struggled due to breakdown of support network. Two third (61%) felt very anxious due to social isolation and fear of contracting Covid-19. More than half (56%) reported significant physical deterioration; 30% of PUK members attributed this to discontinuation of exercise programme. Social isolation and separation from families and loved ones were a main concern for 43%. Significant cognitive decline was reported by 17% (patients and carers). Only 32% had access to internet and a device; which enlightened their desire for face-to-face medical consultations and exercise activities (Figure 4).
We observed a trend of vicious cycle of deterioration. Very high anxiety levels, fear of leaving the house and discontinuation of exercise groups led to lack of stimulation, isolation and sedentary living. This contributed to worsening motor and non-motor symptoms, such as stiffness, bradykinesia, cognitive decline, freezing, poor sleep, constipation etc., which resulted in higher anxiety levels, and it continued. This deterioration had a profound effect on our patients’ wellbeing as well as carer burden on the families.
Majority of PD patients belonging to older age group and technology naïve (68%); this not only contributed to their social isolation but also limited their options regarding medical consultations. Even though PUK were able to offer Zoom exercise groups, singing classes and educational meetings, not many patients could benefit from this. Also many patients have felt the importance of human interactions within medical consultations and its worth during the pandemic. This study again reinforces the benefits of exercise groups on wellbeing and delaying disease progression in Parkinson’s’ disease.
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Parkinson's Academy, our original and longest running Academy, houses 17 years of inspirational projects, resources, and evidence for improving outcomes for people with Parkinson's. Led by co-founder and educational director Dr Peter Fletcher, the Academy has a truly collegiate feel and prides itself on delivering 'the stuff you can't get from books' - a practical learning model which inspires all Neurology Academy courses.