Growing Up and Getting Old(er) With Childhood-Onset Chronic Diseases: Paving the Way to Better Chronic Illness Care Worldwide
2009; Elsevier BV; Volume: 45; Issue: 6 Linguagem: Inglês
10.1016/j.jadohealth.2009.09.007
ISSN1879-1972
Autores Tópico(s)Childhood Cancer Survivors' Quality of Life
ResumoSee Related Article p. 551The ability to successfully manage childhood-onset chronic diseases is one of the greatest advances in pediatric medicine. Most notable has been the improved care of diseases such as type 1 diabetes, complex congenital heart disease, cystic fibrosis, and sickle cell disease [1Powars D.R. Chan L.S. Hiti A. et al.Outcome of sickle cell anemia: A 4-decade observational study of 1056 patients.Medicine. 2005; 84: 363-376Crossref PubMed Scopus (433) Google Scholar, 2Reid G.J. Webb G.D. Barzel M. et al.Estimates of life expectancy by adolescents and young adults with congenital heart disease.J Am Coll Cardiol. 2006; 48: 349-355Abstract Full Text Full Text PDF PubMed Scopus (61) Google Scholar, 3Hodson M.E. Simmonds N.J. Warwick W.J. et al.An international/multicentre report on patients with cystic fibrosis (CF) over the age of 40 years.J Cyst Fibros. 2008; 7: 537-542Abstract Full Text Full Text PDF PubMed Scopus (50) Google Scholar, 4Bellis G. Cazes M.H. Parant A. et al.Cystic fibrosis mortality trends in France.J Cyst Fibros. 2007; 6: 179-186Abstract Full Text Full Text PDF PubMed Scopus (51) Google Scholar]. When managed appropriately, many patients with previously lethal diseases can now expect to live near-normal lifespans. As a result, the pediatric medical community has come to face a new problem, namely, what to do with patients who are now adults. Traditional providers of adult care are increasingly faced with the challenge of inheriting these very complex patients. The article by Suris and colleagues [[5]Suris J.C. Akré C. Rutishauser C. How adult specialists deal with the principles of a successful transition.J Adolesc Health. 2009; 45: 551-555Abstract Full Text Full Text PDF PubMed Scopus (58) Google Scholar] in this issue of the Journal investigates the subspecialist perspective regarding youth with complex diseases as they transition from pediatric to adult-based services. Our Swiss colleagues found that less than half of adult subspecialty providers had an established means to coordinate transfer of young adults from pediatric care. They also found that adult subspecialists did not often address routine adolescent primary care issues that would affect an adolescent's general health.Anecdotal reports and various studies in the United States demonstrate that patients and families have difficulty switching to adult-focused care and often remain in pediatric care settings, despite being of adult age. In response, the American Academy of Pediatrics, The American College of Physicians, and the American Society of Family Practice [[6]American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians–American Society of Internal MedicineA consensus statement on health care transitions for young adults with special health care needs.Pediatrics. 2002; 110: 1304-1306PubMed Google Scholar], together with the Society of Adolescent Medicine [[7]Blum R.W. Garell D. Hodgman C.H. et al.Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine.J Adolesc Health. 1993; 14: 570-576Abstract Full Text PDF PubMed Scopus (983) Google Scholar], promulgated position statements about transitioning youth with chronic diseases to adult care. But why is transitioning youth with chronic diseases to adult-based health care such a problem? In the United States, the loss of insurance that frequently occurs during early adulthood is a major barrier to health care transitions [8Nicholson J.L. Collins S.R. Mahato B. et al.Rite of passage? Why young adults become uninsured and how new policies can help, 2009 update.Issue Brief (Commonw Fund). 2009; 64: 1-20PubMed Google Scholar, 9Okumura M.J. McPheeters M.L. Davis M.M. State and national estimates of insurance coverage and health care utilization for adolescents with chronic conditions from the National Survey of Children's Health 2003.J Adolesc Health. 2007; 41: 343-349Abstract Full Text Full Text PDF PubMed Scopus (26) Google Scholar]. However, insurance is only part of the problem. It is notable that our colleagues in countries with universal health care coverage, such as Australia, Great Britain, and Canada, also experience difficulties with health care transitions and transfer of care [10Logan S. In the UK the transition from youth to adulthood of people with cerebral palsy is poorly planned and co-ordinated.Child Care Health Dev. 1997; 23: 480-482Crossref PubMed Scopus (3) Google Scholar, 11Lam P.Y. Fitzgerald B.B. Sawyer S.M. Young adults in children's hospitals: Why are they there?.MedJ Aust. 2005; 182: 381-384PubMed Google Scholar, 12Clarizia N.A. Chahal N. Manlhiot C. et al.Transition to adult health care for adolescents and young adults with congenital heart disease: Perspectives of the patient, parent and health care provider.Can J Cardiol. 2009; 25: e317-e322Abstract Full Text PDF PubMed Google Scholar].Young adults with chronic conditions in these countries remain vulnerable to attrition from health care [[13]Reid G.J. Irvine M.J. McCrindle B.W. et al.Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects.Pediatrics. 2004; 113: e197-e205Crossref PubMed Scopus (391) Google Scholar]. These studies highlight what appear to be universal challenges for patients during the transitioning period. For instance, the issues of finding a new provider, youth readiness for managing their own disease, providers having insufficient knowledge to care for a patient's needs, and lack of communication between the pediatric and adult provider all constitute barriers to transitioning.Why should we still be concerned about improving health care transitions? Not only have improvements in disease management led to longer life expectancies in general, children with more complex and more severe conditions are living well into adulthood. These young adult patients require both high-quality transitioning services and adult-based care available to transfer their medical care seamlessly and successfully. The article by Suris and colleagues highlights deficiencies in both the means to transition young adults and the subspecialist's coverage of general adolescent care issues. Their work emphasizes the need for a more formalized transition process between providers to ensure that the patient has both subspecialty and general care needs met. Thus, having a system in place to give timely, knowledgeable, coordinated, and appropriate health care is imperative. However, with many of these conditions, we have a limited window of opportunity to create a foundation to prevent the long-term sequelae of their disease processes.Yet, studies have shown that neither adult primary care physicians nor subspecialists are eager or ready to manage the care for patients with complex diseases of childhood [5Suris J.C. Akré C. Rutishauser C. How adult specialists deal with the principles of a successful transition.J Adolesc Health. 2009; 45: 551-555Abstract Full Text Full Text PDF PubMed Scopus (58) Google Scholar, 14Okumura M.J. Heisler M. Davis M.M. et al.Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood.J Gen Intern Med. 2008; 23: 1621-1627Crossref PubMed Scopus (116) Google Scholar]. So whose responsibility is it to ensure that these patients receive the health care that they need? Should we leave it to the patients to decide who would be the best person to be their health care provider? Should pediatric providers decide who would be the best “next” provider for the care of their patients? Should we send all our patients to specialized disease centers? While we focus on subspecialty issues, we must also ask another question: Do diseases that start in childhood make these young adults markedly different from any other chronic disease patient seen in adult medical practices? In fact, although disease-specific management is an important aspect of care, many transition issues are not unique to any one disease process nor specific to any one type of provider. The issues of lack of insurance and not wanting to leave a familiar physician are barriers that many patients face when transitioning, regardless of the underlying etiologies of their medical problems. Provider barriers include lack of time in clinic, lack of clinical support, and lack of adequate clinical reimbursement. These barriers are not unique to young adults with childhood-onset chronic diseases but in fact are system-level problems in general chronic disease management. It is important not to lose perspective on the universality of the patient experience for those living with chronic diseases, and on the need to support providers in their ability to provide high-quality chronic disease care. Young adult patients still need patient-centered care. They still need care coordination. They still need to understand why they have to take their medications. And they still need to have clinicians manage and advocate for their chronic illness care. These issues are basic to all adult patients with chronic diseases.How best to meet both subspecialty needs and general health needs in a manner that ensures the highest quality of care for young adult patients is still unclear. Regardless of whether a patient's care is based in a disease-specific subspecialty center or through a primary care doctor's office with subspecialty consultation, coordination between general and subspecialty care is critical for the well-being of these patients. Hopefully, with the insight of our Swiss colleagues, along with the current research being done in adolescent chronic disease management, we can develop policies to ensure that all patients have continuous, developmentally appropriate, high-quality, patient-centered chronic disease care. See Related Article p. 551 See Related Article p. 551 See Related Article p. 551 The ability to successfully manage childhood-onset chronic diseases is one of the greatest advances in pediatric medicine. Most notable has been the improved care of diseases such as type 1 diabetes, complex congenital heart disease, cystic fibrosis, and sickle cell disease [1Powars D.R. Chan L.S. Hiti A. et al.Outcome of sickle cell anemia: A 4-decade observational study of 1056 patients.Medicine. 2005; 84: 363-376Crossref PubMed Scopus (433) Google Scholar, 2Reid G.J. Webb G.D. Barzel M. et al.Estimates of life expectancy by adolescents and young adults with congenital heart disease.J Am Coll Cardiol. 2006; 48: 349-355Abstract Full Text Full Text PDF PubMed Scopus (61) Google Scholar, 3Hodson M.E. Simmonds N.J. Warwick W.J. et al.An international/multicentre report on patients with cystic fibrosis (CF) over the age of 40 years.J Cyst Fibros. 2008; 7: 537-542Abstract Full Text Full Text PDF PubMed Scopus (50) Google Scholar, 4Bellis G. Cazes M.H. Parant A. et al.Cystic fibrosis mortality trends in France.J Cyst Fibros. 2007; 6: 179-186Abstract Full Text Full Text PDF PubMed Scopus (51) Google Scholar]. When managed appropriately, many patients with previously lethal diseases can now expect to live near-normal lifespans. As a result, the pediatric medical community has come to face a new problem, namely, what to do with patients who are now adults. Traditional providers of adult care are increasingly faced with the challenge of inheriting these very complex patients. The article by Suris and colleagues [[5]Suris J.C. Akré C. Rutishauser C. How adult specialists deal with the principles of a successful transition.J Adolesc Health. 2009; 45: 551-555Abstract Full Text Full Text PDF PubMed Scopus (58) Google Scholar] in this issue of the Journal investigates the subspecialist perspective regarding youth with complex diseases as they transition from pediatric to adult-based services. Our Swiss colleagues found that less than half of adult subspecialty providers had an established means to coordinate transfer of young adults from pediatric care. They also found that adult subspecialists did not often address routine adolescent primary care issues that would affect an adolescent's general health. Anecdotal reports and various studies in the United States demonstrate that patients and families have difficulty switching to adult-focused care and often remain in pediatric care settings, despite being of adult age. In response, the American Academy of Pediatrics, The American College of Physicians, and the American Society of Family Practice [[6]American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians–American Society of Internal MedicineA consensus statement on health care transitions for young adults with special health care needs.Pediatrics. 2002; 110: 1304-1306PubMed Google Scholar], together with the Society of Adolescent Medicine [[7]Blum R.W. Garell D. Hodgman C.H. et al.Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine.J Adolesc Health. 1993; 14: 570-576Abstract Full Text PDF PubMed Scopus (983) Google Scholar], promulgated position statements about transitioning youth with chronic diseases to adult care. But why is transitioning youth with chronic diseases to adult-based health care such a problem? In the United States, the loss of insurance that frequently occurs during early adulthood is a major barrier to health care transitions [8Nicholson J.L. Collins S.R. Mahato B. et al.Rite of passage? Why young adults become uninsured and how new policies can help, 2009 update.Issue Brief (Commonw Fund). 2009; 64: 1-20PubMed Google Scholar, 9Okumura M.J. McPheeters M.L. Davis M.M. State and national estimates of insurance coverage and health care utilization for adolescents with chronic conditions from the National Survey of Children's Health 2003.J Adolesc Health. 2007; 41: 343-349Abstract Full Text Full Text PDF PubMed Scopus (26) Google Scholar]. However, insurance is only part of the problem. It is notable that our colleagues in countries with universal health care coverage, such as Australia, Great Britain, and Canada, also experience difficulties with health care transitions and transfer of care [10Logan S. In the UK the transition from youth to adulthood of people with cerebral palsy is poorly planned and co-ordinated.Child Care Health Dev. 1997; 23: 480-482Crossref PubMed Scopus (3) Google Scholar, 11Lam P.Y. Fitzgerald B.B. Sawyer S.M. Young adults in children's hospitals: Why are they there?.MedJ Aust. 2005; 182: 381-384PubMed Google Scholar, 12Clarizia N.A. Chahal N. Manlhiot C. et al.Transition to adult health care for adolescents and young adults with congenital heart disease: Perspectives of the patient, parent and health care provider.Can J Cardiol. 2009; 25: e317-e322Abstract Full Text PDF PubMed Google Scholar].Young adults with chronic conditions in these countries remain vulnerable to attrition from health care [[13]Reid G.J. Irvine M.J. McCrindle B.W. et al.Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects.Pediatrics. 2004; 113: e197-e205Crossref PubMed Scopus (391) Google Scholar]. These studies highlight what appear to be universal challenges for patients during the transitioning period. For instance, the issues of finding a new provider, youth readiness for managing their own disease, providers having insufficient knowledge to care for a patient's needs, and lack of communication between the pediatric and adult provider all constitute barriers to transitioning. Why should we still be concerned about improving health care transitions? Not only have improvements in disease management led to longer life expectancies in general, children with more complex and more severe conditions are living well into adulthood. These young adult patients require both high-quality transitioning services and adult-based care available to transfer their medical care seamlessly and successfully. The article by Suris and colleagues highlights deficiencies in both the means to transition young adults and the subspecialist's coverage of general adolescent care issues. Their work emphasizes the need for a more formalized transition process between providers to ensure that the patient has both subspecialty and general care needs met. Thus, having a system in place to give timely, knowledgeable, coordinated, and appropriate health care is imperative. However, with many of these conditions, we have a limited window of opportunity to create a foundation to prevent the long-term sequelae of their disease processes. Yet, studies have shown that neither adult primary care physicians nor subspecialists are eager or ready to manage the care for patients with complex diseases of childhood [5Suris J.C. Akré C. Rutishauser C. How adult specialists deal with the principles of a successful transition.J Adolesc Health. 2009; 45: 551-555Abstract Full Text Full Text PDF PubMed Scopus (58) Google Scholar, 14Okumura M.J. Heisler M. Davis M.M. et al.Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood.J Gen Intern Med. 2008; 23: 1621-1627Crossref PubMed Scopus (116) Google Scholar]. So whose responsibility is it to ensure that these patients receive the health care that they need? Should we leave it to the patients to decide who would be the best person to be their health care provider? Should pediatric providers decide who would be the best “next” provider for the care of their patients? Should we send all our patients to specialized disease centers? While we focus on subspecialty issues, we must also ask another question: Do diseases that start in childhood make these young adults markedly different from any other chronic disease patient seen in adult medical practices? In fact, although disease-specific management is an important aspect of care, many transition issues are not unique to any one disease process nor specific to any one type of provider. The issues of lack of insurance and not wanting to leave a familiar physician are barriers that many patients face when transitioning, regardless of the underlying etiologies of their medical problems. Provider barriers include lack of time in clinic, lack of clinical support, and lack of adequate clinical reimbursement. These barriers are not unique to young adults with childhood-onset chronic diseases but in fact are system-level problems in general chronic disease management. It is important not to lose perspective on the universality of the patient experience for those living with chronic diseases, and on the need to support providers in their ability to provide high-quality chronic disease care. Young adult patients still need patient-centered care. They still need care coordination. They still need to understand why they have to take their medications. And they still need to have clinicians manage and advocate for their chronic illness care. These issues are basic to all adult patients with chronic diseases. How best to meet both subspecialty needs and general health needs in a manner that ensures the highest quality of care for young adult patients is still unclear. Regardless of whether a patient's care is based in a disease-specific subspecialty center or through a primary care doctor's office with subspecialty consultation, coordination between general and subspecialty care is critical for the well-being of these patients. Hopefully, with the insight of our Swiss colleagues, along with the current research being done in adolescent chronic disease management, we can develop policies to ensure that all patients have continuous, developmentally appropriate, high-quality, patient-centered chronic disease care. How Adult Specialists Deal with the Principles of a Successful TransitionJournal of Adolescent HealthVol. 45Issue 6PreviewTo evaluate whether adult specialists comply with the basic principles for a successful transition of adolescents with chronic disorders, and to determine whether the characteristics of the adult specialists have an influence on applying these principles. Full-Text PDF
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