Late Functional Status in a Cohort of Survivors with Pulmonary Artresia Intact Ventricular Septum from the Congenital Heart Surgeons Society Study

Doctor's Name: 
Brian W. McCrindle, M.D.
Hospital for Sick Children

The purpose of the study is to look at survivors of PAVIS (pulmonary artresia with intact ventricular septum) who have had different types of heart surgeries as to how they are doing regarding their ability to exercise and their overall physical and emotional functioning. This will be the first research study to investigate these types of issues in patients who have survived PAVIS. The results of the study will be very important to help patients and doctors to decide how best to treat a patient with PAVIS, and how this will have an important impact on how well they will do in the future as to what they can do and how well they can do it.

The new information from this research study will help the heart specialists and surgeons who take care of PAVIS patients to:

  • Make decisions as to what is the best way to repair their heart problems that are not just based on survival, but also based on how well the patient will do in the long-term from the perspective of how well they are functioning as they see it and as measured on the exercise test.
  • Talk to patients with PAVIS and their families and give a long term outlook that is both true and customized for a particular PAVIS patient.
  • Know how the ability to exercise is related to how functional the patient sees themselves.

This will be a unique study, as the Congenital Heart Surgeons Society is in the best position to enroll the largest number of patients into the study, to collect the data and to get the most information out of the results. This study will help lead the way towards improvements in care, and to helping those PAVIS patients who are most likely to get the most out of a program designed to give them some rehabilitation to improve how well they are doing.

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