scholarly journals Optimizing Care for Adults with Congenital Heart Disease: Results of a Conjoint Analysis Based on a Nationwide Sample of Patients Included in the German National Register

2021 ◽  
Vol 10 (16) ◽  
pp. 3483
Author(s):  
Astrid E. Lammers ◽  
Paul C. Helm ◽  
Ulrike M. Bauer ◽  
Ann-Kathrin van Huelsen ◽  
Helmut Schneider ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Conjoint Analysis ◽  
Congenital Heart ◽  
Heart Defects ◽  
Significant Heterogeneity ◽  
Relative Importance ◽  
National Register ◽  
Specialized Care

(1) Background: Congenital heart disease (CHD) requires lifelong specialized care. Failure to follow up and gaps in care are common in this group and lead to increased morbidity/mortality. We evaluated patients’ perceived needs and expectations regarding specialized care using state-of-the-art statistical and market research techniques based on a nationwide sample of CHD patients. (2) Methods: A random sample of adults with CHD registered in the German National Register for Congenital Heart Defects were invited to answer an adaptive online questionnaire based on the conjoint analysis (CA) technique. CA determines the relative importance of various aspects of health care provision and allows individuals to trade between characteristics, thus recognizing limited resources. (3) Results: 637 patients participated (mean age 33.8 ± 12.6 years; 55.6% female; disease complexity: simple defect 12.6%, moderate complexity 40.3%, complex CHD 40.2%) in the analysis. Patients assigned the highest relative importance to aspects of patient–physician communication, physician qualifications, waiting time, medical care, and medical equipment. Comfort-related aspects such as driving time or hotel aspects of care received much lower scores. We identified four well-defined clusters of patients with differing expectation patterns: (i) time sensitive patients; (ii) excellence seeking patients; (iii) continuity seekers, and (iv) support seeking patients. (4) Conclusions: Adult CHD patients rank effective patient–physician interaction and communication as the most important factors. As we identified significant heterogeneity between CHD patients, centers should cater for individual preferences and integrate individual needs into treatment plans to prevent failure to follow up and ensure patient compliance.

scholarly journals Discontinuity of Cardiac Follow‐Up in Young People With Congenital Heart Disease Transitioning to Adulthood: A Systematic Review and Meta‐Analysis

2021 ◽  
Author(s):  
Philip Moons ◽  
Sandra Skogby ◽  
Ewa‐Lena Bratt ◽  
Liesl Zühlke ◽  
Ariane Marelli ◽  
...  
Keyword(s):  
United States ◽  
Systematic Review ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Heart Defects ◽  
Meta Analysis ◽  
Transition Programs ◽  
The United States

Background The majority of people born with congenital heart disease require lifelong cardiac follow‐up. However, discontinuity of care is a recognized problem and appears to increase around the transition to adulthood. We performed a systematic review and meta‐analysis to estimate the proportion of adolescents and emerging adults with congenital heart disease discontinuing cardiac follow‐up. In pooled data, we investigated regional differences, disparities by disease complexity, and the impact of transition programs on the discontinuity of care. Methods and Results Searches were performed in PubMed, Embase, Cinahl, and Web of Science. We identified 17 studies, which enrolled 6847 patients. A random effects meta‐analysis of single proportions was performed according to the DerSimonian‐Laird method. Moderator effects were computed to explore sources for heterogeneity. Discontinuity proportions ranged from 3.6% to 62.7%, with a pooled estimated proportion of 26.1% (95% CI, 19.2%–34.6%). A trend toward more discontinuity was observed in simple heart defects (33.7%; 95% CI, 15.6%–58.3%), compared with moderate (25.7%; 95% CI, 15.2%–40.1%) or complex congenital heart disease (22.3%; 95% CI, 16.5%–29.4%) ( P =0.2372). Studies from the United States (34.0%; 95% CI, 24.3%–45.4%), Canada (25.7%; 95% CI, 17.0%–36.7%), and Europe (6.5%; 95% CI, 5.3%–7.9%) differed significantly ( P =0.0004). Transition programs were shown to have the potential to reduce discontinuity of care (12.7%; 95% CI, 2.8%–42.3%) compared with usual care (36.2%; 95% CI, 22.8%–52.2%) ( P =0.1119). Conclusions This meta‐analysis showed that there is a high proportion of discontinuity of care in young people with congenital heart disease. The highest discontinuity proportions were observed in studies from the United States and in patients with simple heart defects. It is suggested that transition programs have a protective effect. Registration URL: www.crd.york.ac.uk/prospero . Unique identifier: CRD42020182413.

Implementation of Transition Programs can Prevent Another Lost Generation of Patients with Congenital Heart Disease

2008 ◽  
Vol 7 (4) ◽  
pp. 259-263 ◽  
Author(s):  
Philip Moons ◽  
Deborah Hilderson ◽  
Kristien Van Deyk
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Birth Defect ◽  
Congenital Heart ◽  
Transition Programs ◽  
Medical System ◽  
Lost Generation ◽  
Specialized Care ◽  
Lost To Follow Up

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.

Cause of death in adults with congenital heart disease — An analysis of the German National Register for Congenital Heart Defects

2016 ◽  
Vol 211 ◽  
pp. 31-36 ◽  
Author(s):  
Claudia C. Engelings ◽  
Paul C. Helm ◽  
Hashim Abdul-Khaliq ◽  
Boulos Asfour ◽  
Ulrike M.M. Bauer ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Cause Of Death ◽  
Congenital Heart Defects ◽  
Congenital Heart ◽  
Heart Defects ◽  
National Register

Changing prevalence of severe congenital heart disease: Results from the National Register for Congenital Heart Defects in Germany

2017 ◽  
Vol 12 (6) ◽  
pp. 787-793 ◽  
Author(s):  
Constanze Pfitzer ◽  
Paul C. Helm ◽  
Hannah Ferentzi ◽  
Lisa-Maria Rosenthal ◽  
Ulrike M. M. Bauer ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart Defects ◽  
Congenital Heart ◽  
Heart Defects ◽  
National Register ◽  
Severe Congenital Heart Disease

Congenital heart disease and inherited cardiac disorders

2014 ◽  
pp. 273-290
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Heart Defects ◽  
Cardiac Structure ◽  
Inherited Disorders ◽  
Wide Range ◽  
Cardiac Disorders ◽  
First Time

‘Congenital heart disease’ is a term used to cover a wide range of cardiac conditions that result from an abnormality of cardiac structure or function present at birth. Most conditions are a result of the heart, its valves, or its vessels not being properly formed. Some congenital heart defects are diagnosed in utero or soon after birth, whereas others might not be noted until later in life when symptoms become troublesome. Defects can be simple (requiring little or no intervention), moderate (requiring episodic intervention), or complex (with serious outcomes that require lifelong treatment and follow-up). The majority of children with congenital heart disease are managed in specialist paediatric centres, and as more children with congenital heart disease survive into adulthood, services that cater for adults with congenital heart disease (ACHD) have been developed. Most cardiac nurses working in the cardiac arena can be expected to care for adult patients with congenital heart disease at some time in their career. They might also care for patients who present for the first time in adulthood with inherited disorders that have significant cardiovascular problems. The focus of this chapter is to highlight some of the issues that ACHD patients might present with in cardiac areas that do not specialize in ACHD

Sign in / Sign up

Export Citation Format

Share Document