Understanding the Experiences of Individuals With Immunosuppressive Conditions During the COVID-19 Pandemic (UNIFIED)

 

 

Scientific Study Title: 

Understanding the experiences of individuals with immunosuppressive conditions during the COVID-19 pandemic (UNIFIED)

 

 

Study Start Date: 

April 2020

End Date:

May 2023

 

Why Did We Do This Research?

In December 2019, SARS-COV-2 was identified as a new respiratory illness and eventually declared a global pandemic (COVID-19). To slow the spread of COVID-19, public health measures such as physical distancing and changes to the delivery of health care (e.g., virtual appointments, delayed surgery/treatment) were established.

Individuals with rheumatic diseases are particularly vulnerable to COVID-19, as they are at greater risk of other health issues and infections. To optimize healthcare delivery and provide better support to patients during the COVID-19 pandemic, we aimed to understand the impacts of COVID-19 on the care, treatment, and mental health of individuals living with rheumatic diseases. Specifically, we wanted to understand how patients felt about virtual health appointments during the pandemic and examine how loneliness and social isolation relate to depression and anxiety.

 

What Did We Do?

This study was conducted in two parts, both using international online surveys (available in English and French) to collect information from adults (age 18+) with rheumatic diseases. We recruited participants through social media, supported by patient partners and Arthritis Research Canada.

Part 1 included a survey that was open between April – June 2020 and asked about demographics, disease types, treatments, and experiences with virtual rheumatology care.

Part 2 included two surveys:

  1. baseline (April – Sept 2020), and
  2. follow-up (Dec 2020 – Feb 2021).

We asked about:

  • demographics, such as disease type and treatments. and
  • mental health, such as:
    • feelings of loneliness (via the UCLA Loneliness Scale),
    • social isolation (via the Lubben Social Network Scale),
    • depression (via the Patient Health Questionnaire), and
    • anxiety (via the Generalized Anxiety Disorder Scale).

 

 

What Did We Find?

Survey Part 1

Sample size 429
Average Age 41 years
% identified as female 91%
North American participants 73%
Disease type: Rheumatoid Arthritis 58%
Early pandemic: Reported change in treatment 26%
Early pandemic: stopped a prescribed medication 14%
Attended virtual rheumatology appointment 44%
Felt supported by rheumatology care providers 59%
Satisfied with virtual health care appointments 71%
Preference for in-person appointments when receiving difficult news 65%

 

Survey Part 2

Initial participation 718
Average Age 45 years
% identified as female 91%
Follow-up participation 344
Feeling lonely 51%
Feeling socially isolated 30%
Depression 43%
Anxiety 34%

Experiencing both loneliness and social isolation was linked to significantly higher depression and anxiety scores.

 

What Does This Mean?

This study revealed that the COVID-19 pandemic led to changes in the delivery of rheumatology care, with many healthcare providers offering virtual appointments. Based on our findings, we recommend that rheumatologists prioritize in-person appointments when discussing difficult news, ensure patient preferences are considered, and be mindful of resources.

This study also revealed that many people with rheumatic diseases experienced loneliness and social isolation during the COVID-19 pandemic, which was strongly associated with higher levels of depression and anxiety. Although COVID-19 restrictions are easing, it is important to remember that people with rheumatic diseases, who may have weakened immune systems, are still affected by the pandemic and may continue to suffer from loneliness and social isolation.

 

The Research Team

Principal Investigators:         

Mary De Vera, MSc, PhD, Senior Scientist, Arthritis Research Canada (University of British Columbia)

 

Additional Team Members:

Kamran Shojania, MD, FRCPC, Clinical Trialist, Arthritis Research Canada (University of British Columbia)

Eileen Davidson, Patient Partner, ARC Arthritis Patient Advisory Board

Hallie Dau, MPH, Research Coordinator at UBC Faculty of Pharmaceutical Sciences

J. Antonio Avina-Zubieta, MD, MSc, PhD, FRCPC, Senior Scientist, Arthritis Research Canada (University of British Columbia)

Louise Gastonguay, RN, BSc, MSA – University of British Columbia

Alyssa Howren, MSc, PhD, Former Trainee, Arthritis Research Canada (University of British Columbia)

Nevena Rebić, BScPharm, Former Trainee, Arthritis Research Canada (University of British Columbia)

 

 

Related Publications:     

  • Howren, A., Aviña-Zubieta, J. A., Rebić, N., Dau, H., Gastonguay, L., Shojania, K., Davidson, E., & De Vera, M. A. (2020). Virtual rheumatology appointments during the COVID-19 pandemic: an international survey of perspectives of patients with rheumatic diseases. Clinical rheumatology, 39(11), 3191–3193. https://doi.org/10.1007/s10067-020-05338-3
  • Howren, A., Avina-Zubieta, J. A., Puyat, J. H., Da Costa, D., Xie, H., Davidson, E., Rebić, N., Gastonguay, L., Dau, H., & De Vera, M. A. (2023). Impact of Loneliness and Social Isolation on Mental Health Outcomes Among Individuals With Rheumatic Diseases During the COVID-19 Pandemic. ACR open rheumatology, 5(5), 243–250. https://doi.org/10.1002/acr2.11539