Clinical characteristics and outcomes of patients with adult congenital heart disease listed for heart and heart‒lung transplantation in the Eurotransplant region

Becher, Peter Moritz; Schrage, Benedikt; Weimann, Jessica; Smits, Jacqueline M.; Magnussen, Christina; Reichenspurner, Hermann; Goßling, Alina; Rodrigus, Inez; Dumfarth, Julia; Pauw, Michel De; François, Katrien; Caenegem, Olivier Van; Ancion, A; Cleemput, Johan Van; Miličić, Davor; Moza, Ajay; Schenker, Peter; Röhrich, Luise; Schönrath, Felix; Thul, Josef; Steinmetz, Michael; Schmack, Bastian; Ruhparwar, Arjang; Warnecke, G.; Rojas, Sebastián V.; Sandhaus, T.; Haneya, Assad; Eifert, Sandra; Welp, Henryk; Ablonczy, László; Wagner, Florian; Westermann, Dirk; Bernhardt, A.; Knappe, Dorit; Blankenberg, Stefan; Kirchhof, Paulus; Zengin, Elvin; Sinning, Christoph

doi:10.1016/j.healun.2020.07.012

Cited by 12 publications

(17 citation statements)

References 34 publications

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“… 10 , 14 On the other hand, multiple organ involvement with renal dysfunction, liver failure, complex anatomy, and pulmonary arterial hypertension (PAH) contributes to deterioration, which can result in delisting or death while being on the waiting list. 10 , 17 , 18 , 19 In ACHD, 1 year mortality after transplantation is high due to procedure related risk factors and advanced HF at the time of transplantation, but survival rates at 10 years are comparable or even better than those of patients with acquired heart disease. 17 , 18 , 19 The reason for the better long‐term survival is often attributed to the younger age at transplantation and the lower infection and malignancy rates following transplantation.…”

Section: Discussionmentioning

confidence: 99%

“… 10 , 17 , 18 , 19 In ACHD, 1 year mortality after transplantation is high due to procedure related risk factors and advanced HF at the time of transplantation, but survival rates at 10 years are comparable or even better than those of patients with acquired heart disease. 17 , 18 , 19 The reason for the better long‐term survival is often attributed to the younger age at transplantation and the lower infection and malignancy rates following transplantation. 19 In general, predictors of a poor outcome on the waiting list are comparable between ACHD and non‐ACHD with the exception that previous cardiac surgery was more often related to a poor outcome in non‐ACHD.…”

Section: Discussionmentioning

confidence: 99%

“…Transplantation is complicated by scarring caused by previous surgery, collateral vessels, and bleeding issues. 1 , 14 , 18 There is the need of more data regarding the exact anatomic diagnosis of the underlying heart defects, lacking in these recent studies 17 , 18 , or only mentioned as a general congenital heart defect 10 , 19 ; thus, a register specifically obtaining this granular data will significantly contribute to this debate.…”

Section: Discussionmentioning

confidence: 99%

“…Co‐morbidities are often present in ACHD listed for heart or heart/lung transplantation with PAH being very common. 1 , 17 , 18 , 26 More data are needed to study how this co‐morbidity affects the outcome of patients on the waiting list. Especially the most advanced form of PAH with Eisenmenger syndrome due to an uncorrected shunt lesion is reported to have a poor outcome.…”

Section: Discussionmentioning

confidence: 99%

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Study design and rationale of the pAtients pResenTing with cOngenital heaRt dIseAse Register (ARTORIA‐R)

Sinning¹,

Zengin²,

Diller³

et al. 2021

ESC Heart Failure

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Aim Due to improved therapy in childhood, many patients with congenital heart disease reach adulthood and are termed adults with congenital heart disease (ACHD). ACHD often develop heart failure (HF) as a consequence of initial palliative surgery or complex anatomy and subsequently require advanced HF therapy. ACHD are usually excluded from trials evaluating heart failure therapies, and in this context, more data about heart failure trajectories in ACHD are needed to guide the management of ACHD suffering from HF. Methods and resultsThe pAtients pResenTing with cOngenital heaRt dIseAse Register (ARTORIA-R) will collect data from ACHD evaluated or listed for heart or heart-combined organ transplantation from 16 countries in Europe and the Asia/Pacific region. We plan retrospective collection of data from 1989-2020 and will include patients prospectively. Additional organizations and hospitals in charge of transplantation of ACHD will be asked in the future to contribute data to the register. The primary outcome is the combined endpoint of delisting due to clinical worsening or death on the waiting list. The secondary outcome is delisting due to clinical improvement while on the waiting list. All-cause mortality following transplantation will also be assessed. The data will be entered into an electronic database with access to the investigators participating in the register. All variables of the register reflect key components important for listing of the patients or assessing current HF treatment. ConclusionThe ARTORIA-R will provide robust information on current management and outcomes of adults with congenital heart disease suffering from advanced heart failure.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

See 2 more Smart Citations

Study design and rationale of the pAtients pResenTing with cOngenital heaRt dIseAse Register (ARTORIA‐R)

Sinning¹,

Zengin²,

Diller³

et al. 2021

ESC Heart Failure

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“…In 2020, there were multiple articles published on the survival of these patients following HTx. Becher et al 22 looked at all the ACHD HTxs from 1999 to 2015 in the Eurotransplant region. Two hundred and four ACHD patients were listed for heart, heart-lung, or heart-another organ transplantation during that time.…”

Section: Heart Transplantationmentioning

confidence: 99%

The Year 2020 in Review: Noteworthy Literature for Thoracic Transplant Anesthesiologists

Abrams

Wilkey

2021

Semin Cardiothorac Vasc Anesth

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The year 2020 was a monumental year in medicine, and this review focuses on selected articles for cardiothoracic anesthesiologists and perioperative physicians involved in the care of heart and lung transplant patients. In the field of lung transplantation, significant strides were made in our knowledge of risk stratification during the preoperative assessment of potential recipients, perioperative transfusion medicine, and the administration of coagulation factor concentrates. In addition, variations in perioperative management and outcomes between institutions were studied across an assortment of metrics regarding lung transplantation, including case volumes and anesthetic practices. Transitioning to topics in the field of heart transplantation, consideration was given to recipients with adult congenital heart disease, and separately, approaches to expanding the donor pool through donation after circulatory death. With regard to preoperative support, outcomes for the total artificial heart as well as the MitraClip as bridges to transplantation were published.

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When to refer adult patients with congenital heart disease for transplantation: Which criteria to use, which work-up?

Bruaene

Droogné

Cleemput

et al. 2021

International Journal of Cardiology Congenital Heart Disease

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Clinical characteristics and outcomes of patients with adult congenital heart disease listed for heart and heart‒lung transplantation in the Eurotransplant region

Cited by 12 publications

References 34 publications

Study design and rationale of the pAtients pResenTing with cOngenital heaRt dIseAse Register (ARTORIA‐R)

Study design and rationale of the pAtients pResenTing with cOngenital heaRt dIseAse Register (ARTORIA‐R)

The Year 2020 in Review: Noteworthy Literature for Thoracic Transplant Anesthesiologists

When to refer adult patients with congenital heart disease for transplantation: Which criteria to use, which work-up?

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