CF Canada Opens Questionnaire Study of Disorder’s Social, Economic Costs
To examine the socioeconomic impact of cystic fibrosis (CF) on patients, caregivers, and society, Cystic Fibrosis Canada (CF Canada) is partnering for a questionnaire study with The Conference Board of Canada.
CF patients and caregivers across Canada wanting in taking part in this research, called “The Social and Economic Impact of Cystic Fibrosis in Canada: A Burden of Disease Study,” may go here to register through July 25.
Conducted by The Conference Board, the study aims to better understand what it means to live with CF or to care for those who have this progressive affecting, primarily, affects the lungs and digestive system. It’s estimated that 1 in every 3,600 children born in Canada has CF.
CF Canada, which is sponsoring the study, will use the collected information to shape its programming and inform how it advocates for patients, and their families and caregivers. The nonprofit will also use data gathered to help educate decision-makers. Findings are expected to be shared with the CF community later this year.
“Cystic fibrosis places a heavy burden on families impacted by the disease,” John Wallenburg, PhD, chief scientific offer, CF Canada, said in a press release. “Those living with the disease spend two hours a day on treatments, have frequent hospitalizations, and for some, a lung transplant is their only option. This disease takes a toll, and this survey will help us to provide a clear picture of what that toll is.”
To gain a holistic picture of life with cystic fibrosis, the survey poses questions about, for example, the amount of time spent outside the home receiving care, time spent away from work and school, and the amount of time and money spent on travel and medications, inhalers, home schooling, and the like.
The surveys, estimated to take about 45–60 minutes for patients and 20–30 minutes for caregivers (they need not be completed all at once), is open to adults, 18 or older, residing in Canada. Those younger than 18 wishing to participate need consent from a parent or guardian. For the study, a caregiver is described as anyone who helps a patient with daily life activities.
All information will be stored on a secure server and participants will remain anonymous.
To prepare for the survey, patients should have handy the following information, if applicable, from last year: medical appointments, hospitalizations, emergency room visits, medications, amounts spent on medications and equipment, amount of time spent administering treatment and care, days or time missed from work or school due to CF, household income, and insurance information. Caregivers need to know how much time and money they spent on caregiving.
To get a complete picture of what it costs to live with cystic fibrosis, and to minimize time spent completing the survey, patient participants will be asked permission to have their survey responses linked to Canadian CF Registry data. Registry information will help to identify such factors as genetic profile, pulmonary function, nutritional status, and hospitalization history.
The Conference Board of Canada is an independent applied research organization. Those needing more information about the study can send an email request to [email protected]