Quality of Life in Young Adults With Congenital Heart Disease
Condition: Congenital Heart Disease
MeSH terms: Heart Diseases; Heart Defects, Congenital
Study type: Observational

Summary: 
      This study aims to evaluate the psychosocial situation of adult congenital heart disease
      (CHD) patients in terms of health-related quality of life, mental health, academic
      achievement, and employment status. By assessing a wide variety of medical (e.g., disease
      severity) and psychosocial (e.g., life events, coping strategies, personality) risk factors
      it will be possible to better understand the variables that influence psychosocial outcome of
      young adults with congenital heart disease. This will further improve the understanding of
      the lifelong consequences of a congenital heart malformation. Factors that proof to be
      predictors of favorable outcome represent a resource of resilience and therefore should play
      an important role in the care of CHD patients. By implementing those results in patient care
      the investigators aim to achieve an improved psychosocial outcome among adult congenital
      heart disease (ACHD).

      Hypothesis 1: It is expected that perceived health status, health-related quality of life and
      psychological adjustment will not differ between the patient and the control group. However,
      academic achievement and employment status are expected to be poorer in young adults with
      congenital heart disease compared to healthy controls.

      Hypothesis 2: It is assumed that parental socioeconomic status, problems in emotional
      regulation and impaired social support will be related to a negative psychosocial outcome and
      health-related quality of life. Moreover, the investigators hypothesize that disease severity
      is associated with academic outcome and employment status.
    

Detailed description: 
      Background: With an incidence of 6 in 1000 live born children congenital heart disease is
      among the most common birth defects. Survival rates of children with CHD have significantly
      improved during the past decades due to better surgical and intensive care medicine.
      Nowadays, even children requiring open- heart surgery for CHD most frequently have a good
      cardiac outcome and survive into adulthood. Even those with the most complex forms of CHD
      have sufficient cardiac outcome. However, impaired quality of life, mental health and
      behavior problems, as well as neurocognitive and motor impairments have been described to
      occur more frequently in children with CHD compared to healthy children and may persist into
      adolescence.

      Current findings on QoL, psychological adjustment, and academic achievements in young adults
      with CHD are currently quite inconsistent due to methodological reasons. Moreover, little is
      known on risk factors for a negative outcome. To date, mainly medical risk factors have been
      examined while psychosocial characteristics (e.g., socioeconomic status, parenting, family
      characteristics) have not been systematically studied. Importantly, little is known about
      academic achievements and employment situations of young adults with CHD.

      Aims: In this study the investigators aim to evaluate the psychosocial situation of adult CHD
      patients in terms of health-related quality of life, mental health, academic achievement, and
      employment status.

      Methods: The study is designed as a case-control study beeing a mono-center project. The
      patient group will consist of a maximum of 350 patients with congenital heart disease treated
      at the cardiologic department of the University Hospital Zurich and a control group
      consisting of the same amount of also up to 350 individuals beeing good friends of the
      patients with same gender and similar age.

      Recruitment: Participants will be consecutively recruited from May 1st, 2015 to April 30th,
      2016. Eligible patients will be contacted by the study nurse during the outpatient
      consultation at the university hospital. Patients will be informed about the study during
      their consultation by the study nurse as well as the doctor with whom they have their
      appointment.The control group will be recruited as good friends (same gender, approx. same
      age) of the patients.
    

Intervention name(s): no intervention
Intervention type(s): Other
Intervention description(s): no intervention
Observational model: Case-Control
Time perspective: Cross-Sectional
Sampling method: Non-Probability Sample
Study population: 
        Yound adult patients with congenital heart disease
      
Keywords: quality of life; young adults; congenital heart disease