Health Related Quality of Life in Congenital Heart Disease Surgical Patients in a Low Middle Income Country, Pakistan

Abstract

Decreased mortality and increased survival in congenital heart disease (CHD) surgical patients has amplified the significance of exploring health related quality of life (HRQOL) in this population. Poor HRQOL has been identified in CHD surgical patients, with a dearth of evidence from low middle income countries (LMIC), where there is disproportionately high CHD burden and scarce resources. This thesis utilized mixed methods study aimed to explore HRQOL in CHD surgical patients compared to their age matched healthy siblings, identify predictors of poor HRQOL and provide in-depth explorations of the perceptions and experiences of these patients and their parents in a LMIC, Pakistan. Wilson and Cleary model guided the thesis study design, methods and analyses. A cross-sectional survey recruited a sample (n=252) including children and adolescents (n=193), their age matched healthy sibling (n=129), parents (n=193) and adults (n=59). Generic HRQOL (assessed by PedsQL 4.0. Generic core, PedsQL cognitive functioning questionnaire) in CHD surgical patients was significantly lower in all domains compared to age matched healthy siblings, particularly so for emotional (effect size d= -1.29) and physical functioning (d= -1.10). Within cardiac specific HRQOL (assessed by PedsQL 3.0. Cardiac module), the most affected domains were treatment related problems (d= -0.91) and cardiac related symptoms (d= -0.66) in complex compared to moderate CHDs. Patients at risk of poor HRQOL had complex CHD, more surgeries, longer cardiopulmonary bypass time, were prescribed cardiac medications and were female. While good health and education were highlighted as indicators of good HRQOL, resource constraints and sociocultural factors played a major role in framing their perceptions related to HRQOL in CHD following surgery. The need for clear communication and counselling to gain an understanding about CHD management, continuity of care and strategies to address functional issues and improve HRQOL was strongly evident. HRQOL screening should be part of routine clinical assessment.