In April 2020, SPIN launched the SPIN-COVID-19 Cohort to study mental health concerns during the pandemic. For the study, and with advice from the SPIN-COVID-19 Patient Advisory Team, the SPIN Team developed the COVID-19 Fears Questionnaire for Chronic Medical Conditions, the first measure assessing pandemic-related fears among patients vulnerable due to pre-existing illnesses (findings can be found here and here). Over 800 participants enrolled in the study and were invited to complete a series of questionnaires, initially every 2 weeks, then every 4 weeks. The study's published results described mental health symptom changes during COVID-19 overall and compared changes in Canada, the USA, the UK, and France. This study is the first to report mental health symptom changes during COVID-19 in a vulnerable population with a pre-existing medical condition and the first to compare symptom changes across countries. Take a look at our research infographic here or read the full article here.
Series of SPIN-COVID-19 cohort questionnaires still ongoing and responses continue to be collected and analyzed.
Wu Y, Kwakkenbos L, Henry RS, Tao L, Harb S, Bourgeault A, Carrier ME, Levis B, Sun Y, Bhandari PM, Carboni-Jiménez A, Gagarine M, He C, Krishnan A, Negeri Z, Neupane D, Bartlett S, Benedetti A, Thombs BD, Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 Investigators,12 SPIN COVID-19 Patient Advisory Team. Validation of the COVID-19 Fears Questionnaires for Chronic Medical Conditions: a Scleroderma Patient-centered Intervention Network COVID-19 Cohort Study. J Psychosom Res. 2020;139:110271. Link
Thombs BD, Kwakkenbos L, Henry RS, Carrier ME, Patten S, Harb S, Bourgeault A, Tao L, Bartlett SJ, Mouthon L, Varga J, Benedetti A, SPIN Patient Advisors, SPIN Investigators. Changes in mental health symptoms from pre-COVID-19 to COVID-19 among participants with systemic sclerosis from four countries: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort Study. J Psychosom Res. 2020;139:110262. Link
Wu Y, Kwakkenbos L, Henry RS, Carrier ME, Gagarine M, Harb S, Bourgeault A, Tao L, Carboni-Jiménez A, Negeri Z, Patten S, Bartlett SJ, Mouthon L, Varga J, Benedetti A, Thombs BD, SPIN Patient Advisors and SPIN Investigators. Factors associated with fears due to COVID-19: a Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 Cohort study. J Psychosom Res. 2021;140:110314. Link.
The SPIN-COVID-19 study has been funded by the Canadian Institutes of Health Research, the MI4 McGill University Interdisciplinary Initiative in Infection and Immunity Emergency COVID-19 Research Fund, Scleroderma Canada (made possible by an educational grant for patient support programming from Boehringer Ingelheim), the Scleroderma Society of Ontario, Sclérodermie Québec, Scleroderma Manitoba, Scleroderma Atlantic, the Scleroderma Association of BC, Scleroderma SASK, Scleroderma Australia, Scleroderma New South Wales, Scleroderma Victoria, Scleroderma Queensland.