A cardiac-specific health-related quality of life module for young adults with congenital heart disease: Development and validation

Abstract

This study represents the development and validation of a cardiac-specific module of the generic health-related quality of life (HRQoL) instrument, the TAAQOL (TNO/AZL Adult Quality Of Life), for young adults with congenital heart disease (CHD). Items were selected based on literature, an explorative previous study in CHD patients, interviews with patients, and the advice of experts. The newly developed Congenital Heart Disease-TNO/AZL Adult Quality of Life (CHD-TAAQOL) was tested in 156 patients with mild or complex CHD and consisted of three hypothesised subject scales: 'Symptoms' (9 items), 'Impact Cardiac Surveillance' (7 items), and 'Worries' (10 items). Cronbach's alpha for the three scales were 0.77, 0.78, and 0.82, respectively. Scale structure was confirmed by Principal Component Analysis, corrected item-scale and interscale correlations. Overall, 55% of reported health status problems were associated with negative emotions, which is an argument for assessing HRQoL as a concept distinct from health status. Convergent validity with validated generic instruments (TAAQOL and Short Form-36, SF-36) showed satisfactory coefficients. Discriminant validity was proven by significantly higher scores for mild CHD patients compared with those with complex CHD. In conclusion, the CHD-TAAQOL module together with the generic TAAQOL can be used to assess group differences for cardiac-specific HRQoL in young adults with CHD. Testing psychometric properties of the CHD-TAAQOL shows satisfactory results. However, to detect changes in HRQoL over time, further research is needed.

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.…”

“…A high percentage of the CHD samples were composed of individuals with acyanotic heart disease who were surgically repaired with one operation. 28,31,32,34 Furthermore, a portion of the patients with SV CHD who were sampled in these studies did not undergo Fontan completion and are living with residual cyanosis. 28,32,34 Future HRQOL studies need to provide evidence for reliability and validity of diseasespecific instruments and describe HRQOL in the SV Fontan population in the United States.…”

“…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.…”

“…31,33,35,37 The instruments are summarized in Table II. The PedsQL cardiac module and TAAQOL-CHD are designed as cardiac modules for an existing generic HRQOL tool.…”