Developing a follow-up framework for newborns with congenital heart defects in Khyber Pakhtunkhwa: a randomized controlled trial.

Newborns with congenital heart defects in the intervention group will receive Follow-up care according to the proposed protocol: multidisciplinary care by a pediatrician, pediatric cardiologist, nutritionist, and physical therapist; a modified schedule of visits with reminders before the commencement of each visit. Each visit will comprise a comprehensive examination including oxygen saturation measurement, weight trend, heart rate, respiratory rate, feeding tolerance, examination for signs of heart failure, and wound assessment in case of any surgical intervention. Investigations such as echocardiography, electrocardiography, chest X-ray, INR for anticoagulant users, and sometimes computed tomography and magnetic resonance imaging if required. medication adjustment and caregiver counselling focusing on nutritional requirements and intake, growth and development of the child. A psychologist will reassure the caregiver, ensuring adherence and sustainability in care provision. For assessment, different validated tools will be utilized, such as Early Feeding Skills Assessment, Ages and Stages Questionnaire III, PeadsQL-Pediatric Quality of Life Inventory Infant Scales, and Peds-QL 3.0 Healthcare Satisfaction Parents’ Report. Caregivers will be informed through a text message and or phone call. Participants will be reviewed by all practitioners at each visit; medication adjustment by pediatric cardiologist while caregiving and other instructions related to diet, cleanliness, routine activities, checking oxygen saturation, looking for any cyanosis, and other early warning signs will be communicated by trained nursing staff. Frequency of visits depends on the type and severity, and each visit will take at least an hour. Adherence to the intervention will be monitored by recording data using Google Forms and maintaining an attendance checklist. Moreover, each participant will be reviewed by all practitioners at each visit, with at least 2 visits at 3 and 6 months after initial recruitment or baseline data collection, completing 6 months of intervention for each participant.