Heart Transplant Patient Confessions About Life Quality
Overview
Survival rates following heart transplantation (HTx) have markedly improved over recent decades, underscoring the need to examine the long-term quality of life (QoL) for these patients. This study assessed the QoL of 75 individuals who had survived 20 to 31 years (average 24.9 years) after orthotopic HTx. The evaluation process involved two primary steps: first, assessing the patients’ somatic health, and second, comparing their self-reported QoL, psychological well-being, and mental health with those of 58 control subjects. QoL was measured using the SF-36 questionnaire, psychological domains with the GBB-24 and HADS scales, and patterns in patient-reported outcomes were analyzed through cluster analysis.
Findings revealed that 95.7% of the HTx patients were classified as NYHA functional class I or II, with only 15.2% experiencing reduced left ventricular ejection fraction (LVEF). Compared to control subjects, long-term HTx patients reported significantly lower scores in the physical component summary (PCS) of QoL and on the GBB-24. However, their scores for the mental component summary (MCS) of QoL, anxiety, and depression were comparable to those of the controls. Cluster analysis identified two distinct patient groups: one with high functioning and another with lower functioning, which varied based on levels of social support.
In summary, while long-term HTx survivors generally maintain good functional and cardiac health, they report diminished physical QoL and higher levels of subjective complaints. The study highlights the critical role of social support in enhancing the overall well-being of HTx recipients.
Introduction
Since the 1980s, heart transplantation (HTx) has become the benchmark treatment for end-stage heart failure, achieving notable advances in survival rates due to improved immunosuppressive therapies, infection control, and management of comorbid conditions. The median survival for adult HTx recipients now stands at 12.5 years, with about 21% surviving for 20 years or more. While survival is a key outcome, the quality of life (QoL) following HTx is also crucial. QoL encompasses various dimensions including functional impairment, psychological and physical well-being, and interpersonal relationships, reflecting a broader measure of patient health.
Research indicates that patients with chronic heart failure experience significant QoL improvements within the first decade post-HTx. However, there is limited understanding of the long-term QoL—specifically beyond 20 years post-HTx. Previous studies, such as those by Galeone et al. and Delmo et al., have examined QoL in long-term survivors but are constrained by methodological limitations such as lack of matched controls or reference populations, which affect the generalizability of their findings.
To address this gap, the current study aims to assess and relate self-reported QoL, psychological health, and physical status in patients who have survived 20 to 31 years after HTx. It seeks to provide a comparative analysis of these measures against a specifically selected control group from the general population. The study hypothesizes that long-term HTx survivors will report a relatively high QoL and expects to find correlations between QoL metrics and variables such as somatic health, psychosocial factors, and demographic characteristics.
Method
A cross-sectional study with a control group design was conducted to evaluate outcomes in heart transplant (HTx) patients. The study recruited 121 patients from the Deutsches Herzzentrum der Charité (DHZC) who had undergone heterotopic HTx before December 1993 and had survived for over 20 years. Of these, 28 patients were excluded initially due to re-transplantation or lack of follow-up cooperation, and 18 additional patients were excluded due to language barriers, lack of interest, or insufficient cognitive or physical fitness. Ultimately, 75 patients met the inclusion criteria and participated in the study.
These participants were contacted through DHZC follow-ups or postal mail, and they completed psychometric questionnaires at home. Data quality varied among the participants: 38 patients provided both psychological and somatic data, 29 provided only psychological data, and 8 provided only somatic data.
A control group of 100 individuals was recruited from the general German population using random telephone sampling. To match the control group with the patient sample, 42 control subjects were excluded, resulting in a final control group of 58 individuals. This group was comparable to the patient sample in terms of age and gender, though one-to-one matching was not feasible due to resource constraints. All participants provided informed consent, and the study adhered to ethical standards as approved by the Ethics Committee of Charité–Universitätsmedizin Berlin.
The study employed various measures to assess health outcomes. Somatic data were collected from routine follow-ups and medical records, while psychological outcomes were measured using the following questionnaires: the 36-Item Short Form Health Survey (SF-36v2), which assesses quality of life (QoL) across eight dimensions; the Hospital Anxiety and Depression Scale (HADS), which evaluates symptoms of anxiety and depression; the Giessen Subjective Complaints List-24 (GBB-24), which gauges subjective complaints; the K-14 Social Support Questionnaire, which measures perceived social support; and the WHOQOL-BREF, a broad QoL assessment tool.
Statistical Analysis
Statistical analysis involved comparing patient and control groups using independent samples t-tests for continuous variables and chi-square tests for categorical variables. For smaller group sizes, permutation tests were used to ensure robust comparisons. Hierarchical clustering was applied to identify distinct patient groups based on psychological functioning, and clustering results were illustrated using heatmaps. Data analysis was performed with IBM SPSS 29.0 and MATLAB, with significance set at p < 0.05.
Result
The study reports on survival and quality of life (QoL) outcomes for heart transplant (HTx) patients. The average survival time post-transplant is 24.49 years (± 2.39), with a range from 20 to 31 years. There are no significant age or time differences between men and women in the study cohort. The mean age at transplantation is 39.12 years (± 13.94), and this also does not vary between genders.
Pre-Transplant Diagnosis:
– 54% of patients had non-ischemic cardiomyopathy (NICM)
– 15% had hypertrophic cardiomyopathy (HCM)
– 14% had ischemic cardiomyopathy (ICM)
– 7% had valvular cardiomyopathy (VCM)
– 4% had restrictive cardiomyopathy (RCM)
– 6% had other conditions
Medication:
– 83% of patients received cyclosporine with other medications
– 15% were treated with Tacrolimus and additional drugs
– 2% used alternative combinations
– 89% were prescribed antihypertensive drugs
– 65% took acetylsalicylic acid or other platelet inhibitors
– 46% used diuretics
Post-Transplant Somatic Status (20-31 Years):
– Left ventricular ejection fraction (LVEF) and New York Heart Association (NYHA) functional class indicate overall good physical condition. Only 15.2% had reduced LVEF (< 55%).
– 87% of patients had cardiac allograft vasculopathy (CAV), leading to stent implantation in 37% and bypass surgery in 2.2%.
– 52.2% experienced renal insufficiency, and 28.2% required hemodialysis or kidney transplantation.
– 15.2% had post-transplant lymphoproliferative disorders (PTLDs), and 29.5% had malignant skin cancer.
Patient-Reported Outcomes (PROM):
– HTx patients reported significantly lower Physical Component Summary (PCS) scores on the SF-36 compared to controls (t(93.02) = 4.234, p < 0.0001), but there were no significant differences in Mental Component Summary (MCS) scores (t(92.98) = 0.705, p = 0.483).
– No significant differences were found between the groups for anxiety and depression on the HADS scales (anxiety: t(117) = 1.089, p = 0.278; depression: t(117) = -0.022, p = 0.982).
– The Global GBB-24 Score was significantly lower in HTx patients (t(121) = -2.218, p = 0.028), with notably higher levels of reported exhaustion (t(121) = -3.502, p = 0.001). No significant differences were found for gastrointestinal complaints, heart complaints, or limb pain.
Cluster Analysis:
– Two clusters emerged based on QoL and psychological variables:
– Cluster 1 (18 patients) showed significantly poorer psychological functioning across all measures compared to Cluster 2 (31 patients).
– Differences between the clusters were mainly in perceived social support, with Cluster 1 reporting significantly lower support (Cluster 1: 54.89 ± 8.3 vs. Cluster 2: 62.87 ± 5.63; p < 0.001).
This study underscores the need for attention to both physical and psychological aspects of care in long-term HTx survivors.
Conclusion
The study reveals that long-term survivors of heart transplantation (HTx) exhibit a generally favorable physical status 20-31 years post-surgery, as evidenced by strong somatic indicators. Most patients demonstrated good physical health, with high proportions classified under NYHA functional class I and II (95.7%) and unimpaired left ventricular ejection fraction (84.8%). This level of cardiac function surpasses that of transplant recipients studied 10 years after HTx, suggesting possible survival bias.
Despite the positive physical outcomes, patients reported significant impairments in body-related psychological aspects, such as physical functioning and symptoms of exhaustion, compared to a control group. However, there were no notable differences in strictly psychological domains, including mental health and anxiety/depression scales, between the HTx patients and controls. This pattern aligns with previous findings indicating that physical quality of life may be more adversely affected than mental health in long-term HTx survivors.
The cluster analysis within the HTx cohort identified two distinct groups: one with lower and another with higher levels of functioning. The primary difference between these clusters was the perceived social support, with the lower-functioning group reporting less support. This underscores the importance of ongoing social support for long-term HTx patients, although no significant differences were found in terms of living situation or other sociodemographic factors.
Long-term survivors generally adapt well to the challenges of post-transplant life, maintaining a high quality of life despite the adverse effects of immunosuppressive therapy. While physical health issues persist, including chronic allograft vasculopathy (CAV), renal failure, and tumors due to immune suppression, these do not necessarily predict poor quality of life or survival outcomes. Adaptation to health problems and coping strategies acquired over time contribute to sustained good mental health and overall quality of life.
In conclusion, the study demonstrates that successful HTx can result in a prolonged life with satisfactory health, particularly in physical and mental well-being. The long-term survivors in this study show a generally good quality of life, with social support playing a crucial role in maintaining high levels of functioning. Although the study highlights the positive outcomes of long-term HTx, it also points out the need for continuous support and management to address the enduring physical and psychological challenges faced by these patients.
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