title: 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.
authors.affiliation: Department of Paediatrics (Cardiology), Leiden University Medical Centre, Leiden, The Netherlands. m.kamphuis@maatzorg.nl
authors.forename: M
authors.initials: M
authors.lastname: Kamphuis
authors.forename: K H
authors.initials: KH
authors.lastname: Zwinderman
authors.forename: T
authors.initials: T
authors.lastname: Vogels
authors.forename: H W
authors.initials: HW
authors.lastname: Vliegen
authors.forename: R P
authors.initials: RP
authors.lastname: Kamphuis
authors.forename: J
authors.initials: J
authors.lastname: Ottenkamp
authors.forename: S P
authors.initials: SP
authors.lastname: Verloove-Vanhorick
authors.forename: J
authors.initials: J
authors.lastname: Bruil
mesh_terms: D000293:Adolescent; D000328:Adult; D005260:Female; D006304:Health Status; D006330:Heart Defects, Congenital / Q000503:physiopathology / Q000523:psychology* / Q000601:surgery; D006801:Humans; D008297:Male; D009426:Netherlands; D025341:Principal Component Analysis; D011594:Psychometrics / Q000295:instrumentation*; D011788:Quality of Life / Q000523:psychology*; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires / Q000592:standards*