Long-term patient-reported outcomes following congenital heart surgery in adults

Thibault Schaeffer (München)1, P. Bossers (München)1, M. Strbad (München)1, J. Cleuziou (München)1, M. Ono (München)1, O. Tutarel (München)2, P. Ewert (München)2, J. Pabst von Ohain (Stuttgart)3, J. Hörer (München)1

1Deutsches Herzzentrum München Klinik für Chirurgie angeborener Herzfehler und Kinderherzchirurgie München, Deutschland; 2Deutsches Herzzentrum München Klinik für angeborene Herzfehler und Kinderkardiologie München, Deutschland; 3Sana Herzchirurgie Stuttgart GmbH Stuttgart, Deutschland


Objective: To investigate the quality of life (QOL) in adults with congenital heart disease (ACHD) after cardiac surgery during adulthood.

Methods: Patients with congenital heart disease (CHD) who underwent cardiac surgery at the age of 18 years or more were included in a cross-sectional study. The patients completed self-reported questionnaires for multi-facet assessment of QOL: current and perceived health status (Veterans RAND 12-item mental and physical scores [VR-12], EuroQol 5-Dimension Level [EQ-5D-5L]), psychological functioning (Patient Health Questionnaire [PHQ-8]), and life satisfaction (Satisfaction with Life Scale [SWLS]). Results were compared to representative samples from international and German national surveys. Health behaviors (Health-Behavior Scale–Congenital Heart Disease [HBS-CHD]), sense of coherence (Orientation to Life [SOC-13]), and illness-perception (Illness Perception Questionnaire [IPQ-R]) were also explored. Additional medical and socio-demographic variables were collected as potential explanatory variables. Severity of CHD was classified according to the Bethesda disease complexity classification.

Results: The study included 196 ACHD patients, 54% females and 55% with a history of more than one cardiac surgery during their lifetime. The median age at survey was 43 years (interquartile range [IQR] 28 – 80) with a median time interval since the last cardiac surgery of 13 years (IQR 3 – 18). Results of the VR-12 mental and physical scores (mean [x̄] 49% and 50%, standard deviation [±] 10% and 8%, respectively), EQ-5D-5L (x̄ 78% ± 17%), PHQ-8 (x̄ 4/24 ± 3.9/24), and SWLS (x̄ 25/35 ± 6.3/35) were similar to representative samples from the German population. Severity of CHD, age at cardiac operation in adulthood, and the number of previous cardiac operations had no significant impact on QOL. HBS-CHD dental hygiene, substance use, and health risk scores revealed low risk behaviors (x̄ 9% ± 17%, x̄ 9% ± 19%, and x̄ 15% ± 14%, respectively). SOC-13 demonstrated an overall fair sense of coherence (x̄ 66% ± 13). Illness perception was significantly impacted by the severity of the underlying disease. The greatest impact of CHD severity was measured on the following subscales of the IPQ-R score: “identity” (odds ratio [OR] 10.1 [confidence interval 3.1 – 33.0], p < 0.001), “timeline acute/chronic” (OR 2.9 [2.4 – 3.6], p < 0.001), “consequences” (OR 1.6 [1.4 – 2.0], p < 0.001), and “emotional representations” (OR 1.4 [1.2 – 1.7], p = 0.001).

Conclusions: Overall, ACHD patients report good QOL after cardiac surgery in adulthood regardless of the severity of the underlying disease and age at the operation in adulthood. Illness perception is significantly influenced by the severity of CHD.

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