Aktuelle Studien

Eur J Cardiovasc Nurs. 2008 Dec 17

Profile of adults with congenital heart disease having a good, moderate, or poor quality of life: A cluster analytic study

Moons P, Van Deyk K, Marquet K, De Bleser L, De Geest S, Budts W.
Contact: Centre for Health Services and Nursing Research, Katholieke Universiteit, Leuven, Belgium; Division of Congenital and Structural Cardiology, University Hospitals of Leuven, Belgium.

AIMS: The purpose of the study was to assess the profile of adult patients with congenital heart disease who reported a good, moderate, or poor quality of life.
We conducted a secondary analysis of data from a large-scale quality-of-life study that included 627 patients. Demographic and clinical variables were retrieved from the medical records and functional status from patient interviews. Overall quality of life was measured using a Linear Analogue Scale. Using K-means cluster analysis, we categorized subjects into a 3-cluster solution: good, moderate, or poor quality of life.
RESULTS: Four hundred ninety patients (78.1%) clustered into the good quality-of-life category; 126 patients (20.1%) clustered into the moderate quality-of-life category; and 11 patients (1.8%) clustered into the poor quality-of-life category. Poorer quality of life was associated with lower educational level, unemployment or disability, associated syndromes, instability of the heart disease, and a poorer functional status.
CONCLUSION: Over three-quarters of the patients had a good quality of life, whereas only a small proportion had a poor quality of life. Specific demographic and clinical characteristics associated with a poor quality of life could assists in identifying patients at risk for developing a poor quality of life.

Eur Heart J. 2008 Dec 9. (Epub ahead of print)

Self-estimated physical functioning poorly predicts actual exercise capacity in adolescents and adults with congenital heart disease.

Gratz A, Hess J, Hager A.
Contact: Department of Pediatric Cardiology and Congenital Heart Disease, Deutsches Herzzentrum München, Technische Universität München, Lazarettstr. 36, D-80636

AIMS: The aim of this study is to compare self-reported health-related quality-of-life (HRQoL) with the objective of exercise performance in patients with congenital heart disease (CHD) according to diagnosis.
METHODS AND RESULTS: 564 patients (255 females, 14-73 years) with various CHD (62 shunt, 66 left heart obstruction, 33 PS/PR, 47 Ebstein, 96 Fallot, 98 TGA after atrial switch, 38 other TGA, 31 Fontan, 32 palliated/native cyanotic, 61 others) and a group of 53 healthy controls (18 females, 14-57 years) completed a QoL questionnaire (SF-36) and performed a symptom-limited cardiopulmonary exercise test. Despite several limitations at exercise (P = 1.30 x 10(-33)), patients only reported reductions in HRQoL concerning physical functioning (P = 4.41 x 10(-15)) and general health (P = 6.17 x 10(-5)) and not psychosocial aspects. This could be confirmed in all diagnostic subgroups. Correlation to peak oxygen uptake was found in physical functioning (r = 0.435, P = 1.72 x 10(-27)) and general health (r = 0.275, P = 3.79 x 10(-11)). However, there was severe overestimation of physical functioning in most patients when compared with actual exercise test results.
CONCLUSION: Patients with CHD rate their HRQoL impaired only in physical functioning and general health and not in any psychosocial aspect. Self-estimated physical functioning poorly predicts actual exercise capacity.

Cardiol Young. 2008 Oct;18(5):494-501. Epub 2008 Jul 18.

Looking beyond the biophysical realm to optimize health: results of a survey of psychological well-being in adults with congenital cardiac disease

Balon YE, Then KL, Rankin JA, Fung T.
Contact: Adult Congenital Heart Clinic, Calgary Health Region and University of Calgary, Calgary, Alberta, Canada. yvonne.balon@calgaryhealthregion.ca

BACKGROUND: The purpose was to examine the relationship between the complexity of structural heart disease and psychological well-being in adults with congenital cardiac disease.
METHODS: A total of 380 patients registered at the Adult Congenital Heart Clinic in Calgary, Alberta, Canada were surveyed. The patients were mailed a socio-demographic questionnaire and an instrument to measure psychological well-being. The instrument of psychological well-being measures six dimensions: positive relations with others, autonomy, environmental mastery, personal growth, purpose in life, and self-acceptance. Of the 380 patients surveyed, 85 of 205 patients with simple structural malformation responded, giving a response rate of 41%, and 78 of 175 patients with complex malformations, thus giving a response of 45%.
RESULTS: There was no statistically significant difference in the mean scores of each of the six dimensions of psychological well-being between those patients with simple and complex malformations. Two-way analysis of variance, and multivariate analysis of variance, found significant differences in mean scores for dimensions when other socio-demographic variables were included in the analysis. For example, significantly higher mean scores for the dimension of purpose in life was found in patients who obtained a higher level of education (p = 0.009), and in patients who were employed (p < 0.001). We present the socio-demographic variables that statistically impact the mean scores for the dimension of psychological well-being.
CONCLUSION: Psychological well-being is not affected by the complexity of the structural congenital cardiac disease. Certain socio-demographic variables that impact psychological well-being, nonetheless, must be considered when developing multidisciplinary programmes to care for young adults with congenitally malformed hearts.

Int J Behav Med. 2008;15(3):232-40.

Interpretation bias for heart sensations in congenital heart disease and its relation to quality of life

Karsdorp PA, Kindt M, Rietveld S, Everaerd W, Mulder BJ.
Contact: Department of Psychology, University of Amsterdam, The Netherlands. p.karsdorp@dmkep.unimaas.nl

BACKGROUND: Previous studies have shown that patients with congenital heart disease (ConHD) report a diminished health-related quality of life. PURPOSE: This study examines the mechanisms by which ConHD affects health-related quality of life. We hypothesize that (1) the relation between trait anxiety and quality of life is mediated by a negative interpretation bias for heart sensations, specifically in ConHD, and that (2) the relation between trait anxiety and interpretation bias is mediated by state anxiety.
METHOD: Sixty-six patients with ConHD and 50 healthy participants read a vignette about a person experiencing ambiguous heart-related sensations. Interpretation bias to these sensations was assessed with the Implicit Models of Illness Questionnaire. Participants completed Spielberger trait and state anxiety questionnaires and the physical subscales of a quality-of-life questionnaire.
RESULTS: Path-analysis demonstrated that interpretation bias mediated the relation between trait anxiety and daily functioning. However, trait anxiety and interpretation bias were less influential with respect to gross motor functioning. Moreover, state anxiety mediated the relation between trait anxiety and interpretation bias.
CONCLUSION: These results suggest that patients with ConHD who display both elevated levels of trait and state anxiety exhibit the most pronounced negative interpretation bias for heart sensations and in turn diminished daily functioning.

The Journal of Pediatrics, 2008 Mar; 152(3): 349-55.

Health-related quality of life in children and adolescents after open-heart surgery

Landolt MA, Valsangiacomo Buechel ER, Latal B.
Contact: Department of Psychosomatics and Psychiatry, University Children's Hospital, Zurich, Switzerland.

OBJECTIVE: To assess health-related quality of life (HRQOL) in children with congenital heart disease (CHD) after open-heart surgery and to identify medical, individual, and family-related predictors of outcome.
STUDY DESIGN: Cross-sectional cohort study. 155 children with CHD (40% cyanotic type) who underwent open-heart surgery between 1995 and 1998 were eligible. One hundred and ten patients (response rate 71%) were investigated at a mean age of 10.4 years. Mean age at operation was 2.3 years (range, 0-8.7 years), mean duration of cardiopulmonary bypass was 95 minutes (range, 5-206 minutes), and circulatory arrest was performed in 9% of the children. Child- and parent-rated HRQOL was evaluated by the TNO-AZL Child Quality of Life Questionnaire. Scores were compared with healthy references.
RESULTS: Most dimensions of self-reported HRQOL were impaired, including autonomy and motor, social, and emotional functioning. In addition to the children's ratings, parents rated cognitive functioning of their children as diminished. Multivariate analyses revealed that duration of cardiopulmonary bypass, length of hospitalization, need for current cardiac medication, and adverse family relationships had a negative impact on parent- but not on child-rated HRQOL.
CONCLUSIONS: HRQOL is impaired in children with CHD after open-heart surgery. Medical variables and the quality of family relationships are important determinants

Congenital heart disease, 2007 Sep;2(5):301-13

Determinants of health-related quality of life in adults with congenital heart disease

Bruto VC, Harrison DA, Fedak PW, Rockert W, Siu SC.
Contact: University of Toronto, Toronto Congenital Cardiac Center for Adults, Department of Human Development and Applied Psychology (Associate Faculty), Toronto, Canada.

OBJECTIVE: To examine health-related quality of life (HR-QoL) of adults with congenital heart disease (CHD). DESIGN: The HR-QoL of a large consecutive series of adults with CHD was prospectively studied using the Medical Outcome Study-Short Form 36.
RESULTS: Except for very young men who report normal health, young adults describe poor health and exercise limitations relative to their peers in the community. In addition, middle-aged men report fatigue, psychological distress, impaired social functioning, and disability because of emotional difficulties. Among structurally defined subgroups, palliated and repaired cyanotic groups describe poor health. Patients with unoperated and palliated cyanotic lesions and men with repaired cyanotic defects or unoperated shunts also report exercise intolerance. Current cyanosis emerged as an important influence on HR-QoL. Patients with acquired cyanosis report poor health, exercise intolerance, fatigue, psychological difficulties, and social impairment. Chronic cyanosis was associated with only patient reports of poor health, exercise limitations, exercise-related disability, and social difficulties. Although adults with repaired cyanotic defects report poor health, no other HR-QoL deficits were reported by acyanotic patient groups. Pulmonary hypertension and rhythm disorders also influenced specific HR-QoL domains. Although gross structural and pathophysiologic factors influenced perceived health and exercise ratings, these variables were relatively poor predictors of self-reported health status and exercise capacity. Conclusions: Many adults with CHD do not meet normative expectations for perceived health status and exercise tolerance. The principal determinants of self-reported health status and perceived exercise tolerance in adults with CHD are not known. Gender differences in outcome require further investigation.

Is the severity of congenital heart disease associated with the quality of life and perceived health of adult patients?

Moons P, Van Deyk K, De Geest S, Gewillig M, Budts W.
Contact: Centre for Health Services and Nursing Research, Katholieke Universiteit, Leuven, Belgium. philip.moons@med.kuleuven.ac.be

OBJEKTIVE: To explore whether the severity of congenital heart disease is associated with the quality of life and perceived health status of adult patients.
DESIGN: Descriptive, cross sectional study.
Setting: Adult congenital heart disease programme in one tertiary care centre in Belgium.
PATIENTS: 629 patients (378 men, 251 women) with a median age of 24 years.
MAIN OUTCOME MEASURES: Disease severity was operationalised in terms of initial diagnosis (classification of Task Force 1 of the 32nd Bethesda Conference), illness course (disease severity index), and current functional status (New York Heart Association (NYHA) class, ability index, congenital heart disease functional index, and left ventricular ejection fraction). Quality of life was measured by a linear analogue scale, the satisfaction with life scale, and the schedule for evaluation of individual quality of life. Perceived health status was also assessed with a linear analogue scale.
RESULTS: Scores derived from the disease severity classification systems were weakly negatively associated with quality of life and health status, ranging from –0.05 to –0.27. The NYHA functional class and ability index were consistently associated with quality of life and perceived health.
CONCLUSIONS: This study showed that the severity of congenital heart disease is marginally associated with patients’ quality of life and perceived health. Functional status was more related to patients’ assessment of their quality of life than was the initial diagnosis or illness course.