Quality of life and perceived health status in surviving adults with univentricular heart

Abstract

Objective-To evaluate the quality of life in patients with univentricular heart and to determine the impact of sociodemographic and clinical characteristics. Design and setting-Retrospective, cross sectional study conducted in a regional paediatric cardiology centre. Patients-The health records of 89 survivors with univentricular heart (median age 21 years; range 17-49 years) were reviewed. Sixty seven answered the Duke questionnaire. Sociodemographic and clinical variables were similar in the responders and non-responders. The impact of sociodemographic and clinical variables on individual Duke's measures was assessed. Results-The Duke scores of adults with univentricular heart were similar to the normal population. Cyanosis predicted a worse score for physical (p = 0.05) and perceived health measures (p = 0.02). A higher educational level predicted a better score for physical (p = 0.004), mental (p = 0.01), and general health measures (p = 0.02). Orthopaedic problems worsened the social score (p = 0.05). Psychosocial problems worsened the pain score (p = 0.04). In comparison with the other anatomical types, mitral atresia worsened the perceived health score (p = 0.02). Patients younger than 23 years scored better for almost all health and dysfunction measures. Conclusions-Despite repeated interventions and other disease related everyday stresses, a selected group of adults with univentricular heart had a satisfying quality of life. (Heart 2001;86:69-73)

Health-related quality of life: A closer look at related research in patients who have undergone the Fontan operation over the last decade

“…6,9,28,29 Furthermore, the majority of HRQOL deficits were identified in physical function and role function domains. [31][32][33][34][35] The neurodevelopmental studies demonstrate normal IQ score but overall performance scores lower than that of the general population. The subgroup of those with HLHS were noted to have a higher risk for neurodevelopmental deficits associated with prolonged periods of DHCA, congenital brain abnormalities, or hypoxic-ischemic insult.…”

“…24,28,31,32,34 The studies used a combination of European and U.S. instruments. However, the generalizability of the result to the population with SV CHD in the United States is questionable because of cultural, social, and economic influences.…”

“…Some studies indicate deficits in physical function and role function domains, [31][32][33][34][35] whereas others show no significant difference compared with the general population. 24,32 Few studies have addressed HRQOL or QOL in only the SV Fontan patients. Most studies examine all subtypes of CHD, including the population with SV CHD, who usually represent a small portion of the study sample.…”

“…Results ranged from no difference from the general population to impairment in all subscales. [32][33][34] Saliba et al 32 evaluated QOL and perceived health status in adolescents and adults with both surgically corrected and shunt-palliated SV CHD. The subjects living with residual cyanosis had worse physical and perceived health status scores.…”

“…10,32 Contradictory results are identified from parent proxy reports and studies from the European population with SV CHD. [32][33][34] This further identifies the need for HRQOL studies in the U.S. population with SV CHD.…”