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. Here, we present three pivotal reports that offer deep insights into the lived experiences of individuals affected by PH and their caregivers.
2023: The Socioeconomic Burden of Pulmonary Arterial Hypertension in Canada
In 2023, PHA Canada conducted a new survey to explore further the financial and employment impacts of PAH in Canada. The Socioeconomic Burden of Pulmonary Arterial Hypertension in Canada study was conducted from August 15 to September 10, 2023—the research aimed to understand how PAH 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 PAH on caregiver work productivity. Adult patients (18 years+) with self-reported Group 1 PAH were invited to complete the survey online. The survey was available in French and English and was promoted widely by email and multiple media channels. In the end, 217 patients met the inclusion criteria for participation in the study.
Click here to read the report
Tune in to the latest episode of the PHaware podcast, where Dr. Jason Weatherald, a pulmonologist at the University of Alberta, delves into the findings of the survey examining the impact of pulmonary arterial hypertension (PAH) on patients' lives. Through this national survey, Dr. Weatherald explores how PAH affects patients' ability to work and carry out daily activities, as well as the profound implications for their caregivers. Join us as we uncover the socioeconomic burden of PAH and discuss the urgent need for support systems to improve the quality of life for those affected by this rare condition.
Click here to listen to the podcast
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 PH Community Survey. The summary report highlights the challenges faced by those living with PH, from the journey to get an accurate diagnosis to the impact of PH on daily life, including during the COVID pandemic. It demonstrates the importance of innovation to improve quality of life and for 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 PH community, including addressing gaps in disease awareness, time to diagnosis, and the impacts of PH on quality of life.
Click here to read the report
2013: The Burden of Illness Report
In 2013, PHA Canada conducted an in-depth survey of the burdens associated with a PH diagnosis in Canada. This Burden of Illness (BOI) survey was national in scope and asked each respondent about their journey since their PH diagnosis. The resulting report provided a comprehensive picture of daily living with PH 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 in the years since.
Click here to read the report