ABAHF neu Beitrag Pressemitteilung

Press release for the Day of the Heart Patient 2024: Patient organizations warn of a cardiac rehabilitation bottleneck for adults with congenital heart defects


As a patient representative, the Action Alliance for Congenital Heart Defects (ABAHF) complains about a serious shortage of care in cardiac rehabilitation for adults with congenital heart defects (EMAH)/Heart Foundation Board: “Fatal lack of rehabilitation services”

(Frankfurt a.M., May 5, 2024) It is vital for those affected. But it is currently associated with frustration and very stressful for the family and professional situation: the care of adults with congenital heart defects (EMAH) in cardiac rehabilitation. The rehabilitation for these patients must be EMAH-specific because it requires expertise focused on the complexity of over forty different congenital heart defects (CHF). But only a few aftercare clinics in this country are geared towards cardiac rehabilitation for EMAH patients. “This fatal, yet avoidable, deficiency must not lead to EMAH now falling into a supply gap. Ultimately, it is about the well-being of over 350,000 EMAH in Germany who are dependent on lifelong, specific follow-up care for their heart defect from birth. These also include patients with serious residual and subsequent cardiac conditions that require surgery,” warns Prof. Dr. Stefan Hofer, parent representative of children with heart disease on the board of the German Heart Foundation. As a rule, EMAH would have to wait several months to a year for inpatient rehabilitation, unless it is a follow-up treatment (AHB) immediately after a cardiac surgery or interventional procedure. The Action Alliance for Congenital Heart Defects (ABAHF), of which the Heart Foundation is a member, is drawing attention to the lack of cardiological rehabilitation services for EMAH in Germany on the Day of the Heart-Sick Child. The Heart Foundation offers information about rehabilitation for EMAH at https://herzstiftung.de/emah.

“Hardly qualified providers for guideline-compliant rehabilitation of EMAH”

Every year, 8,700 children are born with a heart defect. Thanks to advances in cardiac medicine, over 95 percent of them now reach adulthood and form a constantly growing patient group with over 350,000 EMAH. A group that is far too large for the few rehabilitation clinics with professional expertise in the care of EMAH. “The care of EMAH in cardiac rehabilitation is currently catastrophic,” says Christina Pack, herself an EMAH patient and first chairwoman of the federal association for young people and adults with congenital heart defects JEMAH eV. The federal association is a partner in the ABAHF. “EMAH are increasingly reporting to us that, with a few exceptions, there are currently hardly any qualified providers for guideline-compliant rehabilitation of EMAH in Germany,” reports Pack. It can be observed that EMAH, from an approved stay in a rehabilitation clinic for EMAH patients, are still assigned to a clinic without EMAH expertise. “From the perspective of those affected, this is dramatic and even catastrophic, because a lot can go wrong for these patients physically and psychologically,” says Pack.

A few exceptions among the rehabilitation clinics with proven EMAH expertise that look after patients are, for example, the Tannheim aftercare clinic in the Black Forest or the Höhenried clinic on Lake Starnberg. In both clinics, EMAH patients are treated by EMAH cardiologists who have additional training in “Special Cardiology for Adults with Congenital Heart Defects (EMAH)” in addition to specialist expertise. According to the German Society for Pediatric Cardiology and Congenital Heart Defects (DGPK), there are around 180 EMAH-certified cardiologists in Germany, the majority of them (more than 150) are pediatric cardiologists, all the rest are cardiologists. The vast majority of them work in the national EMAH centers and the regional EMAH focus practices and clinics. Their expertise is currently lacking in rehabilitation clinics. “This is also why patients have to expect waiting times of several months due to the high number of rehabilitation clinics with EMAH expertise,” admits rehabilitation specialist Dr. Christa Bongarth, chief physician in the cardiology department at the Höhenried Clinic. Your clinic looks after around 100 EMAH patients per year.

High intensity of care and too few EMAH doctors in rehabilitation clinics

There are many reasons for the enormous supply bottleneck. “Caring for EMAH is much more complex than for patients with acquired heart diseases who, for example, go to a rehabilitation clinic after a heart attack or after a pacemaker implantation,” explains Dr. Bongarth. Anyone who was born with a single-chamber heart as an EMAH has had several operations in childhood and adolescence. And even if it is successfully corrected, a “fontan heart,” so named after the first operator of this surgical procedure, requires further rehabilitation stays in the patient’s adult life. As the disease progresses, patients can also develop further cardiac complications such as arrhythmias, which require additional care. The situation is similar for patients with transposition of the large arteries (TGA). “At EMAH, the need for individual therapy is usually higher. And it requires a team of specialists for cardiological, psychosomatic, sports therapy and social medical care. This is personnel-, time- and cost-intensive,” says Dr. Bongarth. EMAH support also covers topics such as severe disabilities, starting a family, pregnancy or career planning or professional reorientation and reintegration into working life. Depending on the type and complexity of the heart defect, the physical resilience of EMAH and thus also the type and intensity of reasonable physical activity differs. This makes integration into a training group with other heart patients in a conventional rehabilitation clinic more difficult. All factors that are taken into account by pension insurance providers and health insurance companies, according to rehabilitation specialists such as Dr. Bongarth will not be taken into account in the remuneration for rehabilitation services provided by EMAH in clinics with EMAH expertise. This is already the case with heart transplant or artificial heart patients. “Better remuneration that would do justice to the amount of care required for these patients could create an incentive for other rehabilitation clinics to expand their care offerings for EMAH,” says rehabilitation specialist Dr. Bongarth convinced.

What needs to be done to improve cardiac rehab for EMAH?

Not only for the sufferers themselves, but also in the interests of the health and social security system, something urgently needs to be changed about the rehabilitation care bottleneck for the constantly growing group of patients at the EMAH. “This lack of care affects the reintegration of EMAH into the labor market and the restoration of their ability to work. At the same time, valuable members of the community of contributors are lost. Anyone who has to wait a year for their rehabilitation program is missing out on the job market,” points out JEMAH chairwoman Christina Pack.

DGPK President and EMAH specialist Prof. Dr. Ulrike Herberg in rehabilitation clinics that offer rehabilitation treatments for chronically ill children and adolescents or family-oriented rehabilitation (FOR). These are the aftercare clinics Tannheim (FOR and young rehab), Bad Oexen (FOR) and the Ostseeklinik Boltenhagen (children’s rehab, mother-child cures). “We see younger EMAH up to the age of around 25 years well looked after in these clinics with topics such as career and life planning and starting a family,” says Prof. Herberg, head of the national EMAH center at Aachen University Hospital. For older EMAH patients aged 35 and over, the DGPK sees the need to expand the spectrum of rehabilitation clinics with EMAH expertise because these patients also have comorbidities or acquired cardiovascular diseases such as coronary heart disease and valve diseases or heart failure. “It would be desirable if, for example, three to five cardiological rehabilitation clinics would agree to take care of EMAH patients. “An EMAH cardiologist should then be available in the clinic during the rehabilitation measure, i.e. the inpatient or outpatient stay, and should individually recommend the necessary measures for the EMAH patient,” says Prof. Hostel. The specialist societies DGPK and the German Society for the Prevention and Rehabilitation of Cardiovascular Diseases (DGPR) would first have to discuss which rehabilitation clinics in northern, southern and central Germany could expand EMAH. “A network of rehabilitation clinics including facilities specializing in children and young people would be welcome and helpful,” explains the DGPK President. She does not see an insurmountable problem with health insurance or pension insurance providers covering costs.

Guideline-compliant aftercare from EMAH is vital

The OptAHF project recently demonstrated how important guideline-compliant care for people with AHF is with the help of data from the Federal Statistical Office and BARMER. According to the Federal Joint Committee (G-BA), the results of this project show, among other things, that “contrary to current guideline recommendations, almost 50 percent of adult patients with AHF were cared for exclusively by family doctors”, i.e. not in EMAH specialist practices and EMAH outpatient clinics EMAH centers or EMAH clinics. “This also affected over 25 percent of patients with complex AHF.” As the G-BA emphasizes, people with AHF “are dependent on lifelong, specific care”. The G-BA stated: “This care was associated with a significantly earlier and higher risk of death and the risk of serious adverse events.” The DGPK sees the health insurance companies as potential bodies, EMAH among their members about regular follow-up care for their heart defect EMAH-certified cardiologists.



Link to the OptAHF project: www.g-ba.de/presse/pressemitigungen-melden/1168/


The Heart Foundation offers information on rehabilitation for EMAH, including an EMAH guide, at herzstiftung.de/emah

For people with congenital heart defects, the online search service “Your Heart Lotse” at herzstiftung.de/dein-herzlotse can help you find a doctor and clinic.

The Action Alliance for Congenital Heart Defects (ABAHF)

In order to speak with one voice in public for better care for children, young people and adults with congenital heart defects and their families and to help them even more effectively, in 2014 on the initiative of the German Heart Foundation e. V. nationwide active patient organizations joined together to form the “Action Alliance for Congenital Heart Defects” (ABAHF). The organizations are: Federal Association of Heart Sick Children eV, Federal Association Jemah eV, Herzkind eV, The Heart Sick Child interest group and the Children’s Heart Foundation of the German Heart Foundation eV

Around 8,700 newborns with congenital heart defects are born in Germany every year. Today, around 95% of these children reach adulthood thanks to advances in pediatric heart surgery and pediatric cardiology. The number of adults with congenital heart disease (EMAH) is estimated at over 350,000. To the homepage: www.abahf.de/.

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