Patient reported measures, such as the quality of life, are indispensable to improve the care given to cardiac children. In this study, we aim to better understand what influences the quality of life of people affected by a congenital heart defect. The target population are children and adults with a heart defect.
In the first phase of the project, we want to test a platform for the collection of patient-reported measures that is automated and online. The objectives are to refine the data collection platform, to develop methods to solicit potential research participants, and to assess the response rate.
The second phase is an observational, 3-year prospective cohort study. The participants will complete 3 questionnaires on quality of life: the Satisfaction with Life Scale, the PROMIS Global Health Scale and the Pediatric Cardiac Quality of Life Inventory (PCQLI) questionnaires. The population for this phase includes all children and adults with a congenital heart disease in Québec.
The information collected will be linked with the type of heart defect and the different interventions or surgeries that these people could have had.
See also the dedicated page of the project to participate or for more information.
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