WANTED! 8000 Heart Patients

Vis, Jeroen C.; Velde, Enno T. van der; Schuuring, Mark J.; Engelfriet-Rijk, Lia C.J.M.; I, Harms; Mantels, Sylvia; Bouma, Berto J.; Mulder, Barbara J.M.

doi:10.1016/j.ijcard.2011.02.019

Cited by 20 publications

(3 citation statements)

References 14 publications

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“…7 In the CONCOR registry, mild diseases accounted for 44% of all cases, but this registry had launched a targeted campaign, specifically aimed at identifying patients without relation to the Dutch hospital system. 21 In the Euro Heart Survey on adult CHD, 22 the simple diseases summed up to 36% predominantly reported from tertiary centers.…”

Section: Discussionmentioning

confidence: 99%

Long-Term Nationwide Follow-Up Study of Simple Congenital Heart Disease Diagnosed in Otherwise Healthy Children

et al. 2016

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The study was conducted in Denmark, which had a population of approximately 5 million in 1970, of which <3% represented nonCaucasian citizens. The Danish National Health Service provides, then and now, tax-supported health care for all Danish citizens; free medical care is guaranteed for emergency and general hospital Background-Systematic follow-up is currently not recommended for patients with simple congenital heart disease; however, only a few data exist on the long-term prognosis of simple congenital heart disease. Methods and Results-We undertook a nationwide follow-up study of a cohort of 1241 simple congenital heart disease patients, diagnosed from 1963 through 1973, in otherwise healthy children and alive at 15 years of age. We identified 10 age-and sex-matched general population controls per patient. We followed the study population through Danish public registries from the age of 15 years up to January 1, 2013 with respect to mortality, cause of death, morbidity, and medical follow-up. The patients were followed for a total of 58 422 patient-years and had a median age at the end of follow-up of 47.4 years (interquartile range, 43.5-50.9). Mortality was increased compared with the general population, both overall (adjusted hazard ratio [aHR],1.9; 95% confidence interval [CI], 1.5-2.4)] and for patients (79%) without medical follow-up (aHR, 1.7; 95% CI, 1.3-2.2). The most common cause of death (40%) was sudden unexpected death (aHR, 4.3; 95% CI, 2.9-6.5). The incidence of critical cardiac morbidity was 3.9 per 1000 patient-years with the most frequent events being an adult (re)operation and hospitalization for heart failure or ventricular tachyarrhythmia. This corresponded to an aHR of 5.7 (95% CI, 4.6-6.9) when compared with the general population. Key Words: congenital heart disease ◼ death, sudden ◼ follow-up studies ◼ heart defects, congenital ◼ morbidity ◼ mortality © 2015 American Heart Association, Inc. Conclusions-Patients

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Section: Discussionmentioning

confidence: 99%

Long-Term Nationwide Follow-Up Study of Simple Congenital Heart Disease Diagnosed in Otherwise Healthy Children

et al. 2016

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“…However, many adults with CHD are affected lifelong by cardiac symptoms, reduced quality of life, and cardiac events [ 2 – 6 ]. These events often merit medical therapy, percutaneous interventions, and open-heart surgery to improve survival and quality of life [ 1 , 6 – 8 ]. Consequently, adults with CHD are frequently admitted to hospital, entailing high health-related and non-health-related costs to the affected individuals, employers, and to society at large.…”

Section: Introductionmentioning

confidence: 99%

Mobile health in adults with congenital heart disease: current use and future needs

et al. 2016

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ObjectiveMany adults with congenital heart disease (CHD) are affected lifelong by cardiac events, particularly arrhythmias and heart failure. Despite the care provided, the cardiac event rate remains high. Mobile health (mHealth) brings opportunities to enhance daily monitoring and hence timely response in an attempt to improve outcome. However, it is not known if adults with CHD are currently using mHealth and what type of mHealth they may need in the near future.MethodsConsecutive adult patients with CHD who visited the outpatient clinic at the Academic Medical Center in Amsterdam were asked to fill out questionnaires. Exclusion criteria for this study were mental impairment or inability to read and write Dutch.ResultsAll 118 patients participated (median age 40 (range 18–78) years, 40 % male, 49 % symptomatic) and 92 % owned a smartphone. Whereas only a small minority (14 %) of patients used mHealth, the large majority (75 %) were willing to start. Most patients wanted to use mHealth in order to receive more information on physical health, and advice on progression of symptoms or signs of deterioration. Analyses on age, gender and complexity of defect showed significantly less current smartphone usage at older age, but no difference in interest or preferences in type of mHealth application for the near future.ConclusionThe relatively young adult CHD population only rarely uses mHealth, but the majority are motivated to start using mHealth. New mHealth initiatives are required in these patients with a chronic condition who need lifelong surveillance in order to reveal if a reduction in morbidity and mortality and improvement in quality of life can be achieved.

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“…Unfortunately, many CHD patients have been lost-to-follow-up or discharged after repair [98,99] and current guidelines state that regular follow-up is not required in those with repair under the age of 25 without relevant complications or residuae [15]. Nevertheless, “successful” repair—of even simple defects like ASD—with reassuring short-term outcomes is not invariably equivalent to favorable long-term outcome.…”

Section: Interventional Approachesmentioning

confidence: 99%

The Changing Landscape of Pulmonary Arterial Hypertension in the Adult with Congenital Heart Disease

Dissel

Mulder

Bouma

2017

JCM

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Pulmonary arterial hypertension associated with congenital heart disease (PAH-CHD) is a common type of pulmonary arterial hypertension (PAH) and a frequent complication of congenital heart disease (CHD). PAH-CHD represents a heterogeneous patient population and it is important to distinguish between the underlying cardiac defects considering the prognostic and therapeutic implications. Improved interventional techniques have enabled repair or palliation of most cardiac defects, though a substantial number of patients remain at high risk for PAH after closure. Traditionally, the treatment and management of PAH-CHD patients has been limited to palliative and supportive care, and based on expert opinion rather than clinical trials. Recently, however, the availability of advanced PAH-specific treatment has opened up a new field for the clinical management of this condition. Nevertheless, there is limited evidence on the optimal therapeutic approach for PAH-CHD. Herein, we discuss the current and novel therapeutic options for PAH-CHD as well as highlight several challenges in the clinical management at present.

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WANTED! 8000 Heart Patients

Abstract: Open access under the Elsevier OA license.

Cited by 20 publications

References 14 publications

Long-Term Nationwide Follow-Up Study of Simple Congenital Heart Disease Diagnosed in Otherwise Healthy Children

Long-Term Nationwide Follow-Up Study of Simple Congenital Heart Disease Diagnosed in Otherwise Healthy Children

Mobile health in adults with congenital heart disease: current use and future needs

The Changing Landscape of Pulmonary Arterial Hypertension in the Adult with Congenital Heart Disease

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