- Hardships due to COVID-19 greatly affected a substantial proportion of Australians, particularly those living with chronic diseases such as MS.
- MS Australia-supported researchers investigated the link between hardships due to the COVID-19 pandemic and lockdown, and quality of life in people living with MS.
- Hardships due to the COVID-19 pandemic reduced the quality of life of people living with MS, particularly in terms of emotional wellbeing and maintaining self-care activities.
Why might COVID-19 affect quality of life?
In metropolitan Victoria, the state government enacted a COVID-19 lockdown that lasted 112 days. This lockdown may have particularly affected people living with MS, who could no longer access non-essential health and care services. Previous studies have shown that this could lower their quality of life.
Lockdowns can also isolate people who have complex and chronic illnesses from their support networks, raising their risk of mental health disorders.
What did the researchers do?
In this study, supported by MS Australia and led by Dr Julie Campbell, the researchers used the Assessment Quality of Life-Eight Dimensions (AQoL-8D) to measure health-related quality of life in people taking part in the Australia MS Longitudinal Study (AMSLS).
The AQoL-8D survey has 35 questions covering eight areas of health: three physical (independent living, pain, senses) and five psychosocial (happiness, relationships, coping, self-worth, mental health), plus two overall categories (physical and psychosocial). The AQoL-8D is effective in capturing both psychosocial and subjective wellbeing, as well as traditional health-related quality of life, offering a comprehensive view of overall health.
Published in the journal Quality of Life, the researchers looked at the data collected from the AQoL-8D survey and a specialised COVID-19 questionnaire that was completed by participants of the AMSLS from August 2020 to September 2020.
The questionnaires asked participants to rate the level of hardship due to the COVID-19 pandemic and lockdown for different health areas (emotional health, self-care activities, coping with MS, relationships with carers, relationships with family, living arrangements and finances).
The written answers of participants were also analysed for themes. About a fifth of the participants had experienced metropolitan lockdown, and the remaining participants had either not been exposed to lockdown or experienced regional lockdown, which was shorter and not as strict.
What did the researchers find?
Of the 1,666 people who completed the questionnaires, nearly half (44%) said they experienced minor or major hardship across the health areas and 74% reported at least minor hardship in at least one of the health areas.
. Participants also said that the pandemic and lockdowns isolated them from friends and family, reduced their social and disease management activities, and led to emotional and financial strain.
Overall, about a third of the participants had a clinically important decrease in their health-related quality of life. Those who experienced metropolitan lockdown were more likely to feel they experienced greater hardship. People with MS who experienced major hardships related to COVID-19 were about two-and-a-half times more likely to have had a significant decrease in their health-related quality of life.
Those who had experienced minor hardships were nearly twice as likely to have had a significant decrease in their health-related quality of life. The connection between experiencing hardships and lower health-related quality of life was strongest for emotional wellbeing and maintaining self-care activities.
Only 14% of study participants said they experienced benefits in at least one health area. However, researchers did not find a clinically important link between benefits due to the COVID-19 pandemic and health-related quality of life, suggesting that the lockdown and pandemic did not improve quality of life.
What is the significance of this?
A large proportion of Australians living with MS were greatly affected by hardships due to the COVID-19 pandemic. However, the connection between experiencing lockdown and health-related quality of life was not straightforward, possibly because participants outside the lockdown also experienced COVID-19 hardships, making the picture more complicated.
Overall, the findings raise awareness about the effects of pandemics and lockdowns on people with complex and chronic diseases such as MS.
These findings can help policymakers assess the impact of lockdowns and the effectiveness of measures in reducing the effects of pandemics.