Understanding the experiences of patients with antiphospholipid antibodies
Scientific study title:
Exploring how Albertan lupus patients living with antiphospholipid antibodies access health information, communicate with physicians and experience their disease: a mixed methods approach.
Principal Investigator:
Megan RW Barber MD, PhD, Clinical Assistant Professor, Division of Rheumatology, Department of Medicine, Cumming School of Medicine, University of Calgary; Associate Director of Clinical Research and Clinical Trials, University of Calgary Lupus Centre of Excellence; Research Scientist, Arthritis Research Canada
Co-Principal Investigators:
Ann E Clarke, MD, Professor, Division of Rheumatology, Department of Medicine, Cumming School of Medicine, University of Calgary
Leslie Skeith, MD, Assistant Professor, Division of Hematology & Hematological Malignancies, Department of Medicine, Cumming School of Medicine, University of Calgary
Co-Investigators:
Susan J Elliott, PhD, Professor and University Research Chair, Department of Geography & Environmental Management, University of Waterloo
Francesca S Cardwell, PhD, Research Associate, Department of Geography & Environmental Management, University of Waterloo
Study Start Date:
September 2022
Study End Date:
August 2024
Why do this research?
Lupus is a problem where the body’s defense system makes a mistake and recognizes its own tissues as foreign and then attacks them. It can cause problems in the brain, skin, heart, lungs, kidney, joints and blood. Almost half of lupus patients are at risk for blood clots and related problems in pregnancy. These clotting issues are not well-understood and treatments are not clear-cut. Studies show that patients do not have the resources they need to understand this diagnosis, make decisions about it, or discuss it with doctors.
What will be done?
We will survey lupus patients with clotting problems on which information sources they use to understand their disease and how they feel about their interactions with doctors. We will interview patients about their diagnosis and ask them to share photographs about how their lives have been affected by this condition. This study will help us create learning resources for patients. We will also develop tools to improve communication between patients and doctors to help weigh difficult health care decisions. Ours is the first study to combine surveys, interviews, and photo sharing to describe the experiences of lupus patients in order to improve their care.
Who is involved?
Patients with clotting antibodies were recruited from the University of Calgary Lupus/APS Centre of Excellence.
How are Equity, Diversity and Inclusion addressed or taken into consideration?
Lupus is an illness that affects more women than men, and also disproportionately affects patients of certain racial/ethnic backgrounds. This study aims to include a wide range of people who are affected by lupus and clotting issues so that we can better understand how different factors affect how patients experience their illness. This will also help us develop learning resources that are meaningful to patients.
Funding Agency
MSI Foundation (Alberta)
