Palliative Care in Adult Congenital Heart Disease-Associated Advanced Heart Disease.

The practice of palliative care (PC) strives to mitigate patient suffering through aligning patient priorities and values with care planning and via improved understanding of complex physical, psychosocial, and spiritual stressors and dynamics that contribute to patient-centered outcomes. Through representative 'case examples' and supportive data, the role and value of a PC consultant, within the framework of a comprehensive adult congenital heart disease (ACHD) team caring for ACHD with advanced heart disease, are reviewed.

Landzberg MJ 《Heart Failure Clinics》

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

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. The 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. The ARTORIA-R will provide robust information on current management and outcomes of adults with congenital heart disease suffering from advanced heart failure.

Sinning C ，Zengin E ，Diller GP ，Onorati F ，Castel MA ，Petit T ，Chen YS ，Lo Rito M ，Chiarello C ，Guillemain R ，Coniat KN ，Magnussen C ，Knappe D ，Becher PM ，Schrage B ，Smits JM ，Metzner A ，Knosalla C ，Schoenrath F ，Miera O ，Cho MY ，Bernhardt A ，Weimann J ，Goßling A ，Terzi A ，Amodeo A ，Alfieri S ，Angeli E ，Ragni L ，Napoleone CP ，Gerosa G ，Pradegan N ，Rodrigus I ，Dumfarth J ，de Pauw M ，François K ，Van Caenegem O ，Ancion A ，Van Cleemput J ，Miličić D ，Moza A ，Schenker P ，Thul J ，Steinmetz M ，Warnecke G ，Ius F ，Freyt S ，Avsar M ，Sandhaus T ，Haneya A ，Eifert S ，Saeed D ，Borger M ，Welp H ，Ablonczy L ，Schmack B ，Ruhparwar A ，Naito S ，Hua X ，Fluschnik N ，Nies M ，Keil L ，Senftinger J ，Ismaili D ，Kany S ，Csengeri D ，Cardillo M ，Oliveti A ，Faggian G ，Dorent R ，Jasseron C ，Blanco AP ，Márquez JMS ，López-Vilella R ，García-Álvarez A ，López MLP ，Rocafort AG ，Fernández ÓG ，Prieto-Arevalo R ，Zatarain-Nicolás E ，Blanchart K ，Boignard A ，Battistella P ，Guendouz S ，Houyel L ，Para M ，Flecher E ，Gay A ，Épailly É ，Dambrin C ，Lam K ，Ka-Lai CH ，Cho YH ，Choi JO ，Kim JJ ，Coats L ，Crossland DS ，Mumford L ，Hakmi S ，Sivathasan C ，Fabritz L ，Schubert S ，Gummert J ，Hübler M ，Jacksch P ，Zuckermann A ，Laufer G ，Baumgartner H ，Giamberti A ，Reichenspurner H ，Kirchhof P ... -  《ESC Heart Failure》

Advance care planning and palliative care in ACHD: the healthcare providers' perspective.

Steiner JM ，Oechslin EN ，Veldtman G ，Broberg CS ，Stout K ，Kirkpatrick J ，Kovacs AH ... -  《-》

Adult congenital heart disease nurse coordination: Essential skills and role in optimizing team-based care a position statement from the International Society for Adult Congenital Heart Disease (ISACHD).

Founded in 1992, the International Society for Adult Congenital Heart Disease (ISACHD) is the leading global organization of professionals dedicated to pursuing excellence in the care of adults with congenital heart disease (CHD) worldwide. Among ISACHD's objectives is to "promote a holistic team-based approach to the care of the adult with CHD that is comprehensive, patient-centered, and interdisciplinary" (http://www.isachd.org). This emphasis on team-based care reflects the fact that adults with CHD constitute a heterogeneous population with a wide spectrum of disease complexity, frequent association with other organ involvement, and varied co-morbidities and psychosocial issues. Recognizing the vital role of the adult CHD (ACHD) nurse coordinator (ACHD-NC) in optimizing team-based care, ISACHD established a task force to elucidate and provide guidance on the roles and responsibilities of the ACHD-NC. Acknowledging that nursing roles can vary widely from region to region based on factors such as credentials, scopes of practice, regulations, and local culture and tradition, an international panel was assembled with experts from North America, Europe, East Asia, and Oceania. The writing committee was tasked with reviewing key aspects of the ACHD-NC's role in team-based ACHD care. The resulting ISACHD position statement addresses the ACHD-NC's role and skills required in organizing, coordinating, and facilitating the care of adults with CHD, holistic assessment of the ACHD patient, patient education and counseling, and support for self-care management and self-advocacy.

Sillman C ，Morin J ，Thomet C ，Barber D ，Mizuno Y ，Yang HL ，Malpas T ，Flocco SF ，Finlay C ，Chen CW ，Balon Y ，Fernandes SM ... -  《-》

Medical Therapy and Monitoring in Adult Congenital Heart Disease Heart Failure.

Heart failure (HF) in adult congenital heart disease (ACHD) is an increasingly common problem facing ACHD and advanced heart disease and transplant providers. Patients are highly nuanced, and therapies are poorly studied. Standard HF medications are often used in patients who are not targets of large clinical trials. HF management in this data-free zone requires focused, comprehensive team-based care and close follow-up and communication with patients.

Nicolarsen J ，Mudd J ，Coletti A 《Heart Failure Clinics》