Individual quality of life in adults with congenital heart disease: a paradigm shift

Aims During the last decade, a paradigm shift has emerged in the measurement of quality of life, from the use of standard questionnaires towards a more individualized approach. Therefore, this study examined individual quality of life in adults with congenital heart disease and explored potential differences with those reported by matched, healthy control subjects. Methods and results We examined 579 adults with congenital heart disease. A subsample of 514 of these patients was matched for age, gender, educational level, and employment status with 446 healthy counterparts. Individual quality of life was assessed using the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW). Twelve domains affecting patients' quality of life were identified. Family, job/education, friends, health, and leisure time were the most prominent quality of life domains. Significantly fewer patients than control subjects considered financial means and material well-being and future to be important determinants of quality of life. Conclusion Assessment of quality of life in adults with congenital heart disease that focusses on the individual is appropriate for obtaining in-depth information on issues relevant for patients' quality of life. This represents a paradigm shift in the measurement of this concep

Gluren bij de buren: Cardiovasculaire verpleegkunde in België

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The NYHA classification, employment, and physical activities are poor indicators of quality of life after congenital cardiac surgery

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Cardiovascular nursing in Belgium: at the crossroad

This article presents considerations for the design and testing of electronic interventions to improve recovery outcomes in cardiac patients. A brief description of the design and testing of 2 telehealth interventions for cardiac patients is provided: HeartCare and E-CHANGE. The HeartCare project was a randomized trial of a home support program for patients after coronary artery bypass graft surgery. E-CHANGE is an Internet-based home support program designed to increase lifestyle exercise after a cardiac event. Lessons learned from these 2 projects regarding design considerations, system use, effectiveness, and research challenges are discussed. Methods to promote the preservation of nursing values in electronic systems are described, as well nursing roles in the use of computer-assisted care.status: publishe

Implementation of transition programs can prevent another lost generation of patients with congenital heart disease

Congenital heart disease is the most frequently occurring birth defect. To date, more than 90% of the children born with a heart defect reach adulthood. Since many patients are prone to residua and sequelae, lifelong specialized care is required. However, studies indicate that about one-half to three-quarters of the patients are lost to follow-up when they have grown up. This has resulted in a virtual lost generation. Lapse of care is associated with significant morbidity. Therefore, implementation of strategies to prevent patients from failing to continue regular follow-up is critical. It is argued that transition programs that inform patients about the rationale for ongoing follow-up and that teach them how to navigate the medical system can avoid another lost generation.status: publishe

Patent foramen ovale closure and migraine: Are we following the wrong pathway?

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Educational and behavioral issues in transitioning from pediatric cardiology to adult-centered health care

It is assumed that when they begin growing up, a child with congenital heart disease will take personal responsibility for his or her care. For this purpose, patients need sufficient knowledge on the heart defect, treatment,and measures to prevent complications. However, empirical studies indicated that the levels of knowledge and understanding of both parents and children with congenital heart disease are poor. Therefore, sound patient education is imperative, particularly when patients are transitioned from pediatric cardiology to adult congenital cardiology. In this respect, the focus of communication shifts from the parent to the young patient; moreover, education should be tailored according to the developmental level of the patient. Issues that should typically be covered by educational programs for adolescents with congenital heart disease are information on the heart defect, treatment, endocarditis, sexuality and reproduction, sports, employability and insurability, and cardiovascular risk factor. International guidelines indicate that advanced practice nurses are key in developing and implementing patient education programs during the transition from pediatric cardiology to adult-centered health care.status: publishe

Prevention of stroke by percutaneous left atrial appendage closure: Short term follow-up

Preliminary studies suggest that left atrial appendage (LAA) closure might be beneficial in the prevention of stroke in patients with atrial fibrillation (AF). We evaluated the preliminary clinical efficacy of percutaneous LAA closure using the PLAATO-device (ev3 Endovascular, Inc., North Plymouth, MN) and found that none of the patients suffered from thrombo-embolic events within a time period of 2 years after successful LAA closure. Therefore, we believe that percutaneous closure of the LAA might be a valuable technique for AF patients with contra-indications for or failure of oral anticoagulation to prevent thrombo-embolic events.status: publishe