Reduced health-related quality of life in older patients with congenital heart disease: A cross sectional study in 2360 patients
Introduction
Advances in diagnosis, surgical treatment and medical management have led to a dramatic increase in survival of infants and children with congenital heart disease (CHD). This resulted in a still increasing number of adolescents and adults with CHD [1]. As a result, the focus in long-term follow-up studies changed from a quantitative point of view on survival and redo procedures, to a more functional perspective involving hemodynamics, exercise performance and especially quality of life [2], [3].
However, the concept of quality of life is in debate. There are several questionnaires: for healthy people and for patients; as well as generic and disease specific ones. In general, the more disease specific they are, the better is the sensitivity in treatment studies, but the more they leave the primary goal to measure quality of life. The disease specific instruments mainly ask for typical symptoms and resemble more a perceived health status than real quality of life which is defined as “satisfaction with life” [4]. Generic multidimensional “health-related quality of life” (HRQoL) instruments are somewhere intermediate. They include domains that are a pure perceived health status, as well as domains closer to quality of life [5]. Therefore, we have chosen for such an instrument, the SF-36. In clinical outcome studies, it is an optimal addition to a cardiopulmonary exercise test (CPET). CPET objectively measures aerobic capacity which is considered the best substitute for cardiovascular fitness. On the other hand, the SF-36 covers physical, psychological, and social limitations as well as their impact on daily life. Whereas the domain of Physical Functioning as perceived health status correlates at least weakly with aerobic capacity [6], the self-reported domain of Mental Health closely resembles quality of life.
Assessing HRQoL in patients with CHD is important and frequently used to involve patients in the process of decision making especially before high risk procedures to evaluate how much the patient feels limited by his/her cardiac condition, as well as in the outcome evaluation [7], [8]. Also for prenatal counseling of future parents awaiting a child with a congenital heart defect, information regarding the patients short- and long-term HRQoL is of major interest for the decision whether or not to terminate the pregnancy [9].
Meanwhile, many studies have evaluated HRQoL of life in children, adolescents [10], [11], [12], [13] or adults [3], [14], [15], [16], [17], [18], [19], [20] in general, as well as with specific heart defects [11], [21], [22], [23], [24], [25], [26] or after a specific intervention [27], [28], [29]. They found coping strategies, denial mechanisms and pathways like the sense of coherence [2], [30] to mediate HRQoL. However, methodological heterogeneities, different age groups and specific congenital heart diseases led to controversial findings [7], [8]. Moreover, the majority of those studies evaluated younger patient groups. Data from older patients reaching an age beyond forty years were missing.
Therefore, this cross-sectional report aims to give a comprehensive answer to the HRQoL of patients with CHD with regard to their age and diagnosis.
Section snippets
Study subjects
We retrospectively analyzed our database of subjects referred for a cardiopulmonary exercise testing (CPET) in our institution from July 2001 to June 2013. All CPET were accompanied by a HRQoL assessment. Most patients were routinely recruited to CPET for evaluation of their functional status from our outpatient department and were not tested in cardiac decompensation to avoid a sampling bias towards a lower HRQoL. Less than 10% were inpatients, expecting surgery or heart catheterization.
From
Health-related quality of life (HRQoL)
In general, HRQoL was quite normal in patients with CHD when comparing all patients' mental component summary with the reference data (101.9 ± 18.1 %predicted; T = 5.1, df = 2359, p < .001, Table 1). In the physical component summary there was significant reduction (94.8 ± 15.0 %predicted; T = − 16.5, df = 2359, p < .001).
Males reported on a higher physical (male: 95.4 ± 13.7 %pred. vs. female: 94.0 ± 16.5 %pred; T = 2.2, df = 2359, p = .029) and woman on higher mental HRQoL components (male: 101.4 ± 16.4 %pred. vs.
Discussion
HRQoL is increasingly reduced in higher age-groups. This reduction is small, but more prominent in the mental components of HRQoL.
This comprehensive study gives a broad overview regarding the physical and mental components of HRQoL in patients with CHD measured with a generic instrument compared to reference data [32], [33]. Our results outline the pitfall of age and heterogeneity in the several published studies of patients with CHD. When looking on different diagnostic subgroups and different
Conclusion
HRQoL in patients with CHD is increasingly reduced in higher age-groups. This decline is small, but more prominent in the mental dimensions that more closely resemble the true quality of life. This should not be neglected in the clinical management of the aging population also in patients with CHD. This can only be achieved by an interdisciplinary approach with nurses, medical doctors and psychologists in the clinical setting, and more family enrolment in the home-based setting. The
Conflict of interest
No conflict of interest.
Funding
None.
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