O’Brien Institute researchers awarded $1.8M in Canadian Institutes of Health Research (CIHR) funding

Improving patient-reported outcome measures and bettering healthcare for people living with cancer are some of the projects that garnered O’Brien Institute members an $1.8 million haul in the latest CIHR competition.

The Project Grant program is designed to capture ideas with the greatest potential for important advances in health-related knowledge, health care, health systems, and health outcomes by supporting research in all areas of health.

Awarded projects

Dr. Miranda Fidler-Benaoudia, PhD
Oncofertility among adolescent and young adult cancer survivors in Alberta: a mixed methods study
Each year, approximately 7,600 adolescents and young adults (AYA) are diagnosed with cancer in Canada. Since people are having children later in life, more AYA cancer patients have not started a family at the time of diagnosis. As a result, fertility is the second biggest concern among AYA cancer patients due to the negative effects radiotherapy and chemotherapy treatments can have on fertility.

Fidler-Benaoudia’s project studies the impact of cancer and its treatment during adolescence and young adulthood on fertility and cancer-related fertility care in Alberta. In particular, she will use data linkages, questionnaires and focus groups to understand oncofertility knowledge and experiences, as well as factors influencing reproductive choices.

Dr. Pietro Ravani, MD

Understanding the trajectory of severe chronic kidney disease and ways to improve patient-centered care

Calculators are often used by clinics to assess the risk of kidney failure in people with severe chronic kidney disease. Risks measuring above a certain amount prompt a discussion about management options for kidney failure without considering that the risk of death usually exceeds that of kidney failure in this patient population. This can lead to decisions that may not be aligned with a patient’s personal preference.

This project will address these issues by examining how people move across states of chronic kidney disease and identify the factors that people believe matter when discussing prognosis and treatment options for kidney failure, including advance care planning.

Dr. Tolulope (Tolu) Sajobi, PhD

Unsupervised learning approaches to improve patient-reported outcome measures

Patient-reported outcome measures (PROMs) are designed to be used by patients to describe their health, including their quality of life, pain, fatigue, and functional abilities. PROMs can also be used by clinicians and healthcare decision makers to describe outcomes of care, inform treatment decisions and improve quality of care provided to patients. Sometimes, PROMs are not consistent with what was expected because patients with different characteristics may not understand or interpret questions about their health in the same way, or their interpretations may change over time.

Differential interpretations and responses in PROMs data could be a result of positive adaptations to health challenges, such as a chronic illness or a healthcare treatment. They are often difficult to detect and, if ignored, could lead to incorrect conclusions about the outcomes of care. Sajobi’s research focuses on data-driven machine-learning and psychometric methods to efficiently group patients with similar patterns of differential item functioning or response shifts in order to improve the ability to accurately interpret patient-reported information when measuring the effectiveness and responsiveness of the healthcare system.

Dr.  Aynharan Sinnarajah, MD (Co-PI: Dr Jessica Simon)

Automatic palliative care referrals: acceptability and uptake by patients with advanced lung cancer

People living with advanced cancers are not routinely provided timely palliative care, a therapy  proven to help people feel better, reduce depression and anxiety, and support quality of life—this is due to barriers like cancer clinic time constraints and patient and healthcare provider concerns.

To overcome these barriers, Sinnarajah’s study will develop processes where people recently diagnosed with advanced lung cancer are automatically phoned by a palliative care provider and offered a consultation, and will measure patient and provider acceptability and uptake.

Dr. Jennifer Zwicker, PhD
ACCESS: assessing the continuum of care and eligibility for services and supports for children with neurodevelopmental disabilities and their families
Challenges accessing appropriate services is a reality for the estimated 1 in 11 children in Canada that have a neurodevelopmental disability. Ninety per cent of these youth need access to services and professional supports spanning health, education and social services, and a lack of access to these services was identified as a critical gap across all Canadian provinces. Through analysis of linked administrative data and qualitative interviews with families and service providers, Zwicker’s team is focused on understanding disparities in access to existing health, education and social services for youth with neurodevelopmental disabilities and their families in British Columbia and Alberta, and the impact of these disparities on outcomes of across the life course.