We are not all equal during the lockdown. The easing of the lockdown won’t change anything. Beyond social, demographic and regional inequalities, immunosuppressed people are more affected than the average population. A CRCHUM research team is documenting the consequences of the pandemic on the healthy lifestyles and mental health of the immunosuppressed.

Whether they are recipients of a transplanted organ, tissue or stem cells, how are these immunosuppressed people adapting to the lockdown? How have their lifestyles and levels of stress or anxiety, among other things, changed? And how are their loved ones dealing with these extraordinary circumstances?

“In the particular context of COVID-19, immunosuppressed people are potentially at a higher risk of contracting serious health problems. They are compelled to follow stricter lockdown rules than the general public, and their lockdowns will likely end later than most of the population,” says Mélanie Dieudé, CRCHUM researcher and executive director at the Canadian National Transplant Research Program.

With the help of Isabelle Doré (CHRUM researcher) and Sylvain Bédard (a patient-partner at the Centre of Excellence for Partnership with Patients and the Public (CEPPP)), they form a complementary, close-knit and flamboyant trio of researchers. To hear them talk, you’d think they’ve known one other forever. Or almost forever.

With their research project, they are focusing on the pandemic’s impacts on the lifestyles (sleep, physical activity and sedentary behaviour) and mental health of immunosuppressed people (stress, psychological distress, symptoms of depression and anxiety, positive and negative thoughts, and resilience).

Can having a pet influence their owner’s stress levels, provide comfort or other health benefits? They’re studying this as well.

To this end, they speak freely once a week with about twenty participants who are members of a discussion group. To date, over 125 people have taken part in the project and answered questionnaires on their lifestyles and mental health. Many of them also fill out a daily questionnaire in which they share the activities and emotions they experience during the day. Recruitment is ongoing. The families and friends of immunosuppressed people are also invited to take part in the study.

A research project grows out of patients’ concerns

“From the beginning of the pandemic, during discussion sessions with immunosuppressed patients from the Canadian National Transplant Research Program, we felt that there were concerns regarding, for example, the fragility of their health or possible medicine shortages. Something needed to be done,” explains Sylvain Bédard, co-lead with Dr. Marie-Chantal Fortin of the Patient, Family and Donor Researcher Partnership Platform, himself a transplant recipient.

Accustomed to developing research projects involving patient-partners, Mélanie Dieudé and Sylvain Bédard embarked on this research project, ensuring that Isabelle Doré, whose research program focuses on physical activity and mental health, especially in young adults and cancer patients, joined them in the adventure.

The project’s complementary objective? To develop tools and strategies to support immunosuppressed people and those close to them. “We want to give back to the participants as soon as possible. Doing so involves a quick analysis of the data collected to develop, for example, webinars, toolkits and psychological first aid courses suitable for immunosuppressed people. We are also seeking funding to speed up this knowledge transfer and, in the long term, to build tools adapted to contexts other than the current pandemic,” says Isabelle Doré.

Together, they will compare their research findings to those of an international study on healthy lifestyles and well-being conducted by a team of colleagues at the University of British Columbia.

While COVID-19 has made it possible to solidify research collaborations with Canadian scientists (Quebec, Ontario, British Columbia, Saskatchewan), patients associations or even Health Canada, the CRCHUM’s trio of scientists hopes to build a research community to conduct long-term monitoring of the health, in its broadest sense, of immunosuppressed people, including their mental health and healthy lifestyles.

Unlike physical health, these aspects have so far been the poor cousin of research. This study may well change that.

If you would like more information or if you wish to participate in the study, contact Mélanie Dieudé (melanie.dieude@umontreal.ca) or Isabelle Doré (isabelle.dore@umontreal.ca).