RESUMO
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.
Assuntos
Comportamentos Relacionados com a Saúde , Cardiopatias Congênitas/epidemiologia , Ventrículos do Coração/anormalidades , Atividade Motora , Higiene Bucal , Transtornos Relacionados ao Uso de Substâncias/epidemiologia , Adolescente , Adulto , Fatores Etários , Consumo Excessivo de Bebidas Alcoólicas/epidemiologia , Estudos de Casos e Controles , Estudos Transversais , Dinamarca , Feminino , Cardiopatias Congênitas/diagnóstico , Humanos , Modelos Logísticos , Masculino , Fumar Maconha/epidemiologia , Razão de Chances , Fatores de Risco , Inquéritos e Questionários , Adulto JovemRESUMO
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.
Assuntos
Adaptação Psicológica , Técnica de Fontan/reabilitação , Ventrículos do Coração/anormalidades , Qualidade de Vida , Atividades Cotidianas , Adolescente , Adulto , Dinamarca , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Sobreviventes/psicologia , Adulto JovemRESUMO
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.
Assuntos
Indicadores Básicos de Saúde , Nível de Saúde , Cardiopatias Congênitas/classificação , Pacientes , Médicos , Qualidade de Vida , Inquéritos e Questionários , Adolescente , Adulto , Ansiedade/diagnóstico , Ansiedade/psicologia , Área Sob a Curva , Estudos Transversais , Depressão/diagnóstico , Depressão/psicologia , Feminino , Cardiopatias Congênitas/diagnóstico , Cardiopatias Congênitas/fisiopatologia , Cardiopatias Congênitas/psicologia , Humanos , Entrevistas como Assunto , Masculino , Variações Dependentes do Observador , Pacientes/psicologia , Satisfação Pessoal , Médicos/psicologia , Valor Preditivo dos Testes , Curva ROC , Reprodutibilidade dos Testes , Autorrelato , Senso de Coerência , Adulto JovemRESUMO
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.