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Understanding the experiences of individuals with immunosuppressive conditions during the COVID-19 pandemic (UNIFIED)
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Scientific Study Title:
Understanding the experiences of individuals with immunosuppressive conditions during the COVID-19 pandemic ( UNIFIED )
Start Date:
  • 2020
End Date:
  • 2023
Research Category
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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:
  • baseline (April – Sept 2020), and
  • 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.

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)

Media and Infographics

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