Background: The aim of our L.I.S.A. study was to determine quality of life in children with CHD and furthermore, prospectively examine the potential benefits of interventional strategies such as physiotherapy and family orientated rehabilitation (FOR) regarding the recovery process and health related quality of life (HRQOL) of these families.
Method: Patients who had undergone cardiac surgery or intervention in cardiac catheterization lab in our institution were consecutively recruited if they were aged between 3 and 18 years. We applied validated disease-specific questionnaires (PCQLI and ULQIE) to assess the physical and psychological well-being of our patients and their families at certain time points from baseline (whilst in hospital) to 3, respectively, 6-month follow-up at home. Patient-specific tailored recommendations for interventional strategies such as physiotherapy and FOR were given when defined thresholds of the questionnaires were not reached.
Results: The cohort comprised 125 patients. The increase in disease severity was associated with decrease in HRQOL, with the palliated single ventricle group having the lowest percentile rank in PCQLI score (−30.89 compared to mild HD; p < 0.001). Furthermore, greater number of previous surgeries (>2) and cardiac catheterizations led to significant lower HRQOL, whereas greater surgical complexity (stratified by the STAT-Score) added no additional clarification for the variance of PCQLI scores, nor did interventional complexity. The socioeconomic status was no impact factor for quality of life. Stepwise regression analysis demonstrated greater number of previous surgeries and parental quality of life as the most important predictors of patients HRQOL in our cohort. The interventions physiotherapy and FOR did not demonstrate a significant impact on HRQOL for the entire cohort; however, in patient with high disease burden, we were able to show statistically significant positive effect of these interventions in regard to the recovery process represented by increase in PCQLI score after 6 months.
Conclusion: Risk factors for lower HRQOL in our patients with CHD were increased disease severity and greater number of surgeries and interventions reflecting a higher disease burden. Importantly, parent's perception of their quality of life is a major predictor for the children's well-being and general functioning as well. This stresses the need of a holistic approach to the treatment of CHD in the long term. Tailored interventions such as physiotherapy and FOR seem to be supportive in the most affected and severe disease group.
