Living with half a heart--experiences of young adults with single ventricle physiology: a qualitative study.

BACKGROUND AND RESEARCH OBJECTIVE: Approximately 3% of children with congenital heart disease born in Denmark have single ventricle physiology (SVP). In previous decades, these children did not survive into adulthood. However, because of new surgical techniques and improved medical care, they now have a 90% survival rate. Several studies have described the somatic status of SVP patients using clinical parameters; however, only a few studies have researched the life perspectives and coping skills in this patient group. The aim of this study was to investigate how young adults with an SVP diagnosis are coping with adulthood and the emotional experiences of daily life. SUBJECTS AND METHODS: Semistructured, qualitative interviews were held with 11 SVP respondents, selected by physical and psychological parameters identified in an earlier quantitative study. Data from the interviews were analyzed by a research group using a phenomenological methodology. RESULTS AND CONCLUSIONS: The goal for SVP patients is to gain control over their disease to live normal lives. Patients require special support from their core network to overcome physical and psychological challenges. Respondents underscored the need for friends and resource persons outside the family to help lift them out of their role as disabled cardiac patients and provide them with "normal" life experiences.

Patient-reported outcomes in adult survivors with single-ventricle physiology.

OBJECTIVES: Data on patient-reported outcomes (PROs) in patients with single-ventricle physiology (SVP) are scarce. We sought (1) to describe the perceived health status, quality of life, symptoms of anxiety and depression, and sense of coherence in adult survivors with SVP, (2) to compare PROs across functional classes, and (3) to compare PROs between patients and controls. METHODS: A case-control study in two adult congenital heart programmes with 62 adult survivors with SVP were matched to 172 healthy controls. A wide range of PROs were measured using validated questionnaires. The treating physician classified patients according to the Ability Index. RESULTS: Patients with SVP have a good functional status. Patients in Ability Index class I consistently reported the best scores, similar to those of healthy controls. Negative associations were found between functional class and outcomes of perceived health and quality of life. For patients in Ability Index class II and III, PROs were poorer. CONCLUSIONS: PROs in patients with SVP are generally good.

Screening for risk of cardiovascular disease is not associated with mental distress: the Inter99 study.

OBJECTIVE: To analyze mental distress in relation to participation in lifestyle intervention. METHODS: In 2000-2001 a total of 1948 consecutive participants, living in the suburbs of Copenhagen, were asked to complete a short version of SCL-90-R (anxiety, depression, and somatization) before screening, immediately after screening, and one and 10 months after screening. The screening classified participants into high or low risk individuals. High risk individuals received personal lifestyle counselling and were randomized to either group-based counselling (A) or referred care (B). Multilevel regression models taking into account repeated measurements and missing data at follow-up were performed. RESULTS: Before screening, high risk individuals had higher scores on anxiety, depression, and somatization than low risk individuals. All categories of participants decreased in scores after screening. The scores increased after 1 month, but were still significantly lower than before screening. After 10 months, low risk individuals and high risk individuals in group A still had significantly lower scores (except for depression) compared with pre-screening levels, whereas high risk individuals in group B reached the pre-screening level (except for anxiety). CONCLUSION: Screening for risk of cardiovascular disease followed by health counselling does not give rise to mental distress, but has a temporary beneficial effect.

Substance use, dental hygiene, and physical activity in adult patients with single ventricle physiology.

OBJECTIVES: The study aims to describe substance use, dental hygiene, and physical activity in adult survivors with single ventricle physiology (SVP) and to compare the behaviors with matched controls, while the patients are particularly at risk for general health problems. DESIGN: The present study is part of a larger research project on long-term outcomes in adult patients with SVP. A cross-sectional, case-control study including 59 patients out of 83 eligible patients participated in the study (response rate 71%). The patients were matched to 172 healthy controls. A questionnaire was mailed to the patients. Nonresponders did not differ significantly from the included participants on age, gender, or physical function. SETTING: The study was conducted at the Heart Center of Copenhagen University Hospital or the Department of Cardiology, Aarhus University Hospital. RESULTS: In these patients, 85% report alcohol consumption (92% in controls; odds ratio [OR] = 0.91; P = 0.575); 26% admit "binge drinking" (41% in controls; OR = 0.56; P = 0.041); 20% are cigarette smokers (36% in controls; OR = 0.59; P = 0.100); 12% have used cannabis over the past year (15% in controls; OR = 0.80; P = 0.596); 20% have had no dental visits during the last year (25% in controls; OR = 1.07; P = 0.684); 46% are not flossing their teeth (32% in controls; OR = 1.32; P = 0.239); and 39% are not physically active (24% in controls; OR = 1.63; P = 0.069). CONCLUSIONS: While in general there was no significant differences in overall health behaviors between SVP patients and controls, SVP patients are less physically active and are less likely to binge drink.

Explanatory value of the Ability Index as assessed by cardiologists and patients with congenital heart disease.

INTRODUCTION: The Ability Index was developed to classify patients with congenital heart disease into four functional classes. Functional class is typically determined by the cardiologist, based on data from a clinical interview. The validity of the Ability Index as assessed by the patient has never been scrutinized. OBJECTIVE: We tested the agreement between cardiologists and patients in assessing functional status using the Ability Index and compared the accuracy of the two assessments in explaining patient-reported outcomes (PRO). METHODS: The Ability Index Scale was completed for 57 patients, independently by cardiologists and patients. Cohen's Kappa coefficient with quadratic weighting (K(w)) was calculated. The area under the receiver operating characteristic (ROC) curve (AUC) (=C-index) was used to test the accuracy of the Ability Index in explaining PRO, as assessed by the cardiologist or the patient. RESULTS: Agreement was observed in 61.4% of the patients. The K(w) was 0.55, showing a moderate agreement; and the R(2) was 0.29, displaying a limited shared variance. The AUC for cardiologists' assessments of the Ability Index in explaining PRO was consistently lower than the AUC for patients' assessments. The appraisal of the patients was more accurate. DISCUSSION: When cardiologists and patients are assessing functional status using the Ability Index, two different constructs are measured. These assessments cannot be interchanged, but should be used complementarily. Because the assessment of the patients regarding the Ability Index is more precise in terms of explaining PRO, it could be valuable as a simple crude marker to identify patients at risk for poor functional and psychosocial outcomes.