RESEARCH
Burden of Illness Survey Reports
The burden of illness survey reports are dedicated to shedding light on the challenges faced by the pulmonary hypertension (PH) community in Canada. These pivotal reports offer deep insights into the lived experiences of individuals affected by pulmonary hypertension and their caregivers.
2023: The Socioeconomic Burden of Pulmonary Arterial Hypertension in Canada
In 2023, PHA Canada conducted a survey to explore further the financial and employment impacts of pulmonary arterial hypertension in Canada. The Socioeconomic Burden of Pulmonary Arterial Hypertension in Canada study aimed to understand how pulmonary arterial hypertension affects patients’ work and daily activities. Workplace- and activity-related limitations were assessed using the Work Productivity and Activity Impairment (WPAI) questionnaire. Additionally, the survey captured data about patients’ need for caregivers and the impact of supporting a patient with pulmonary arterial hypertension on caregiver work productivity.
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Adult patients (18 years+) with self-reported pulmonary arterial hypertension (Group 1 pulmonary hypertension) were invited to complete the survey online in French or English. In the end, 217 patients met the inclusion criteria for participation in the study.
Read the report
In an episode of the PHaware podcast, Dr. Jason Weatherald, a pulmonologist at the University of Alberta, delves into the findings of the survey. Dr. Weatherald explores how pulmonary arterial hypertension affects patients' ability to work and carry out daily activities, as well as the profound implications for their caregivers. The podcast uncovers the socioeconomic burden of PAH and discusses the urgent need for support systems to improve the quality of life for those affected by this rare condition.
2021: The Impact of Pulmonary Hypertension on Canadians
In 2021, over 400 PH patients, caregivers, and healthcare professionals responded to PHA Canada’s call and completed the Canadian Pulmonary Hypertension Community Survey. The summary report highlights the challenges faced by those living with pulmonary hypertension, from the journey to get an accurate diagnosis to the impact of PH on daily life, including during the COVID pandemic.
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It demonstrates the importance of innovation to improve the quality of life and access to clinical trials, new medicines, and services such as virtual care and exercise rehabilitation. PHA Canada is using the information gathered to determine how best to serve the pulmonary hypertension community, including addressing gaps in disease awareness, time to diagnosis, and the impacts of PH on quality of life.
2013: The Burden of Illness Report
In 2013, PHA Canada conducted an in-depth national survey of the burdens associated with a pulmonary hypertension diagnosis in Canada. This Burden of Illness (BOI) survey asked each respondent about their journey since their PH diagnosis.
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The report provides a comprehensive picture of daily living with pulmonary hypertension and has been an invaluable source of information for educating decision-makers in the complex lives of families affected by PH and a crucial advocacy tool.