Literature DB >> 18377516

Biomedical and psychosocial evaluation of "cured" adults with congenital heart disease.

Arwa S Saidi1, Joseph Paolillo, Frederick J Fricker, Samuel F Sears, Adrienne H Kovacs.   

Abstract

As a result of significant advances in diagnostic, surgical, interventional, and pharmacological approaches, up to 95% of infants born with a congenital heart defect now survive into adulthood and there are at least 800,000 adult congenital heart disease patients living in the United States. Unfortunately, many of these individuals consider themselves "cured" or "fixed" and might have the misperception of a cure for a variety of reasons. The "cured" label is problematic and congenital heart disease is most accurately considered a chronic condition. This article outlines the concerns associated with the cured label. This is followed by the presentation of 4 illustrating case studies. Members of an adult congenital cardiology healthcare team must be prepared to address the full spectrum of concerns faced by patients who experience unexpected health deterioration. This spectrum includes both biomedical and psychosocial factors.

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Year:  2007        PMID: 18377516     DOI: 10.1111/j.1747-0803.2007.00071.x

Source DB:  PubMed          Journal:  Congenit Heart Dis        ISSN: 1747-079X            Impact factor:   2.007


  3 in total

1.  Development of an Online, Evidence-Based Patient Information Portal for Congenital Heart Disease: A Pilot Study.

Authors:  Jonathan R G Etnel; Arie P J van Dijk; Jolanda Kluin; Robin A Bertels; Elisabeth M W J Utens; Eugene van Galen; Ad J J C Bogers; Johanna J M Takkenberg
Journal:  Front Cardiovasc Med       Date:  2017-05-01

2.  Patient information portal for congenital aortic and pulmonary valve disease: a stepped-wedge cluster randomised trial.

Authors:  Jonathan R G Etnel; Lidia R Bons; Frederiek De Heer; Daniëlle Robbers-Visser; Ingrid M Van Beynum; Bart Straver; Monique Rm Jongbloed; Philippine Kiès; Martijn G Slieker; Arie P J Van Dijk; Jolanda Kluin; Robin A Bertels; Elisabeth M W J Utens; Regina The; Eugene Van Galen; Barbara J M Mulder; Nico A Blom; Mark G Hazekamp; Jolien W Roos-Hesselink; Willem A Helbing; Ad J J C Bogers; Johanna J M Takkenberg
Journal:  Open Heart       Date:  2021-03

3.  Patient and physician view on patient information and decision-making in congenital aortic and pulmonary valve surgery.

Authors:  Jonathan R G Etnel; Willem A Helbing; Jolien W Roos-Hesselink; Regina The; Ad J J C Bogers; Johanna J M Takkenberg
Journal:  Open Heart       Date:  2018-11-10
  3 in total

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