Mental Health Challenges and Treatment Initiation in Adults with Congenital Heart Disease: Insights from a Nationwide Online Survey

Background: Adult patients with congenital heart disease (ACHD) are frequently limited in their daily lives, which increases the risk of psychological comorbidities. The diagnosis and treatment of mental illnesses and psychological impairment remains difficult in routine clinical practice.

Methods: We surveyed 1,486 ACHDs aged 18 to 85 (average age = 36.84 years; 60.8% female) online on their psychological well-being and the use of psychological treatment. Participants were recruited from the German National Register for Congenital Heart Defects (NRCHD). The analyses provide insight into currently, previously or currently and previously psychological, psychotherapeutic or psychiatric treatment (PST) in ACHD.

Results: Of the study participants, 487 (32.8%) were currently, previously, or currently and previously undergoing PST and 5.1% were waiting for a treatment appointment at the time of the survey. Of the 487 patients, 203 (41.7%) stated mental illness as the reason for treatment, 181 (37.2%) CHD was the reason for treatment, 159 (32.6%) reported problems at home/with family, 137 (28.1%) were in treatment for another reason, 123 (25.3%) stated problems in education/study/work, 45 (9.2%) reported problems with colleagues/acquaintances/friends, multiple answers were possible. In 223 cases (45.8%), PST was not recommended but was self-initiated, in 150 cases (30.8%) treatment was recommended by a doctor, 97 times (19.9%) friends/family recommended treatment and in 17 cases (3.5%) treatment was recommended by another person. In 94.3% of cases, treatment was performed by a psychologist/psychotherapist (78.6%) or a doctor (15.6%); in 5.7% of cases, treatment was performed by another person (e.g., alternative practitioner, social worker). In 412 cases (84.6%), treatment costs were covered in full by the health insurance, 37 times (7.6%) the costs were partially covered by the health insurance and in 38 cases (7.8%) the costs were borne by the patient.

Conclusion: The results illustrate that a significant proportion of ACHD experience mental distress and about one-third are currently or have previously undergone a corresponding therapy, with many of them initiating treatment on their own. Better clinical recognition and mental health support in this population is vital to meet their unique needs and ensure a holistic successful treatment approach.

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Artikel online veröffentlicht:
11. Februar 2025