Implementing exercise for people living with congenital heart disease

Phase I: Stakeholder/Consumer Evaluation Phase I of this study will use surveys (and optional interviews) to identify perceived barriers, facilitators, and contextual needs for a Congenital Heart Disease exercise and lifestyle clinic. Participants may include key stakeholders such as cardiologists and other physicians, allied health professionals and/or nurses, people with CHD, parents and/or carers of people with CHD and clinical and operations staff. Phase I participants will be invited into Phase II. Phase I will further inform the design of Phase II. Phase II: The EXCEL Program Baseline consultations/investigations will take ~2–4 hours. Participants attend a clinic visit for multidisciplinary assessment and standardised tests such as CPET, anthropometry/body composition, muscular fitness, questionnaires, and 7-day accelerometry. Additional investigations may be completed if clinically required. Participants will then complete an 8-week exercise and lifestyle intervention prescribed by an exercise professional (e.g., exercise physiologist). Participants may elect to attend the follow-up exercise program consultation online or in-person. Depending on the individual clinical needs and preferences, participants will engage in a personalised progressive moderate-to-high intensity resistance and aerobic exercise program (~30–60 minutes). The personalised program will be offered multiple times a week by an exercise professional and may involve a combination of supervised, semi-supervised, and/or unsupervised physical activity (including structured exercise). Participants may also be invited to attend in person supervised group sessions within the CPC RPA Clinic and/or online via MS teams (or equivalent). An exercise professional will be present, supervising each of these sessions. In-person and/or remote support will be provided to enhance adherence and compliance to the program. Patients will also have weekly check-ins from the team to provide support, behaviour guidance and physical activity counselling. This will enable the study team to correct their exercise technique, monitor adherence, progress any of the exercises or provide education where needed. Once the patient completes the 8-week program, they will come back in for a follow-up consultation. The participant will then be prescribed a maintenance program before being discharged to the community from the program. This individualised maintenance program will build off their original program (progression of both aerobic and resistance training), adapting to fit their lifestyle and promote long term adherence. A subset of participants will be invited to attend the clinic ~1 year after their initial baseline visit for a repeat study investigation visit and update their maintenance program during their final follow-up exercise program consultation. Participants will be systematically invited to attend the 12-month follow-up for as long as completion of the follow-up period remains feasible within the grant end date.