Best Practices in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues
| Autor: | Katherine Bjornsen, Paul J. Sagerman, Graham J. Reid, Sangeeta Shah, Elizabeth Tong, Arwa Saidi, Kenneth N. Rosenbaum, Rhonda Schonberg, Karen Uzark, Michelle Gurvitz, Thomas P. Graham, John Reiss, Craig Sable, Heidi M. Connolly, Roberta G. Williams, Adrienne H. Kovacs, Elyse Foster, Alison K. Meadows, Mary M. Canobbio |
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| Rok vydání: | 2011 |
| Předmět: |
Adult
Heart Defects Congenital Gerontology medicine.medical_specialty Adolescent Heart disease Best practice Population Specialty patient-centered care Physiology (medical) Health care Humans Medicine Young adult education education.field_of_study business.industry Age Factors congenital Disease Management American Heart Association Continuity of Patient Care medicine.disease United States AHA Scientific Statements Practice Guidelines as Topic heart defects Life expectancy Physical therapy adolescence Cardiology and Cardiovascular Medicine business Psychosocial |
| Zdroj: | Paediatrics Publications |
| ISSN: | 1524-4539 0009-7322 |
| Popis: | Many children born with complex childhood illnesses that historically caused early death are now surviving into adulthood with the expectation of leading meaningful and productive lives. They will ultimately need to transition their care from pediatric to adult-centered care. Unfortunately, in the absence of structured programs to guide this transition, there is often delayed or inappropriate care, improper timing of the transfer of care, and undue emotional and financial stress on the patients, their families, and the healthcare system. At its worst, and as frequently happens now, patients are lost to appropriate follow-up. In fact, the number of adults with congenital heart disease (CHD) in the United States is rising exponentially and now exceeds 1 000 000.1,–,7 At least half of these patients may have complex CHD. Fewer than 30% of adults with CHD are seen by appropriate specialized providers. Fewer than 15% of these patients, who are seen in specialty adult CHD (ACHD) clinics, have CHD that is classified as severe.8 Thus, adolescents with CHD constitute a growing population of individuals for whom a well-planned and well-executed “transition process” is essential. The goals of a formal transition program are to prepare young adults for transfer of care. It should provide uninterrupted health care that is patient centered, age and developmentally appropriate, flexible, and comprehensive. It should include age-appropriate education about medical conditions and promote skills in communication, decision making, self-care, and self-advocacy.9,–,13 It should foster greater personal and medical independence and a greater sense of control over health, healthcare decisions, and psychosocial environment. The ultimate goal of a transition program is to optimize the quality of life (QOL), life expectancy, and future productivity of young patients.14 We acknowledge that the development of ideal transition programs is a … |
| Databáze: | OpenAIRE |
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