Long-term outcome and quality of life in adult patients after the Fontan operation

Bosch, Annemien E. van den; Roos‐Hesselink, Jolien W.; Domburg, Ron van; Bogers, Ad J.J.C.; Simoons, Maarten L.; Meijboom, Folkert J.

doi:10.1016/j.amjcard.2004.01.041

Cited by 142 publications

(92 citation statements)

References 19 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Subsequent contemporary reports have been small and/or limited to single surgical centers. [1][2][3][4][5][6][7][8][9][10][11][12][13][14][15] Hence, the Centers for Disease Control and Prevention has identified linkage of databases to assess the long-term outcomes of persons with CHD as filling a critical gap in knowledge. 16,17 As the oldest, and one of the largest, registries of CHD in the United States, the Pediatric Cardiac Care Consortium (PCCC) is uniquely placed to address the long-term outcomes of these patients.…”

mentioning

confidence: 99%

In‐Hospital Vital Status and Heart Transplants After Intervention for Congenital Heart Disease in the Pediatric Cardiac Care Consortium: Completeness of Ascertainment Using the National Death Index and United Network for Organ Sharing Datasets

Spector

Menk

Vinocur

et al. 2016

JAHA

View full text Add to dashboard Cite

Background The long‐term outcomes of patients undergoing interventions for congenital heart disease ( CHD ) remain largely unknown. We linked the Pediatric Cardiac Care Consortium ( PCCC ) with the National Death Index ( NDI ) and the United Network for Organ Sharing Dataset ( UNOS ) registries to study mortality and transplant occurring up to 32 years postintervention. The objective of the current analysis was to determine the sensitivity of this linkage in identifying patients who are known to have died or undergone heart transplant. Methods and Results We used direct identifiers from 59 324 subjects registered in the PCCC between 1982 and 2003 to test for completeness of case ascertainment of subjects with known vital and heart transplant status by linkage with the NDI and UNOS registries. Of the 4612 in‐hospital deaths, 3873 were identified by the NDI as “true” matches for a sensitivity of 84.0% (95% CI, 82.9–85.0). There was no difference in sensitivity across 25 congenital cardiovascular conditions after adjustment for age, sex, race, presence of first name, death year, and residence at death. Of 455 known heart transplants in the PCCC , there were 408 matches in the UNOS registry, for a sensitivity of 89.7% (95% CI , 86.9–92.3). An additional 4851 deaths and 363 transplants that occurred outside the PCCC were identified through 2014. Conclusions The linkage of the PCCC with the NDI and UNOS national registries is feasible with a satisfactory sensitivity. This linkage provides a conservative estimate of the long‐term death and heart transplant events in this cohort.

show abstract

mentioning

confidence: 99%

In‐Hospital Vital Status and Heart Transplants After Intervention for Congenital Heart Disease in the Pediatric Cardiac Care Consortium: Completeness of Ascertainment Using the National Death Index and United Network for Organ Sharing Datasets

Spector

Menk

Vinocur

et al. 2016

JAHA

View full text Add to dashboard Cite

show abstract

“…Even Dr. Wilkinson's modifications, however, do not take into account subtle residual defects that can conspire to induce irreversible changes to the myocardium, thus leading to attrition [3,15,20,29,40]. Without highlighting these residual defects, clinicians, when contemplating repair, often apply the same criteria to univentricular hearts that they would apply to biventricular hearts, which obviously have more reserve.…”

mentioning

confidence: 99%

Fontan “Ten Commandments” Revisited and Revised

Stern

2010

Pediatr Cardiol

View full text Add to dashboard Cite

Choussat's ''Ten Commandments,'' which describes the components of an ideal Fontan candidate, was first published in 1977. Despite the wisdom in these commandments, it is clear from a historic perspective that total compliance with all criteria does not necessarily portend excellent long-term survival. I believe the end point of the original commandments should be modified to include improvement in long-term survival. I suggest the following single commandment: ''Thou Shalt Be Perfect.''

show abstract

“…(1,2). The Fontan procedure (total cavopulmonary anastomosis) is usually successful in restoring near-normal systemic oxygen saturation, and extending the lives of patients with even the most complex forms of congenital heart disease.…”

mentioning

confidence: 99%

Design of a large cross-sectional study to facilitate future clinical trials in children with the Fontan palliation

Sleeper

Anderson

Hsu

et al. 2006

American Heart Journal

View full text Add to dashboard Cite

Background-Clinical trials in children with congenital heart disease are often limited by the absence of: 1) a primary outcome that can be observed in a reasonable period of time; 2) information regarding health-related quality of life; 3) knowledge of the correlation between health status and ventricular function and exercise performance; 4) a sufficient number of children at a single institution to provide adequate statistical power; and 5) procedural and management differences between and within institutions.

show abstract

Long-term outcome and quality of life in adult patients after the Fontan operation

Cited by 142 publications

References 19 publications

In‐Hospital Vital Status and Heart Transplants After Intervention for Congenital Heart Disease in the Pediatric Cardiac Care Consortium: Completeness of Ascertainment Using the National Death Index and United Network for Organ Sharing Datasets

In‐Hospital Vital Status and Heart Transplants After Intervention for Congenital Heart Disease in the Pediatric Cardiac Care Consortium: Completeness of Ascertainment Using the National Death Index and United Network for Organ Sharing Datasets

Fontan “Ten Commandments” Revisited and Revised

Design of a large cross-sectional study to facilitate future clinical trials in children with the Fontan palliation

Contact Info

Product

Resources

About