Opinion
VIEWPOINT
Stefano Giuliani, MD, PhD Department of Pediatric and Neonatal Surgery, St George’s Healthcare NHS Trust and University of London, London, England. Dean M. Anselmo, MD Department of Pediatric Surgery, Children’s Hospital Los Angeles, University of Southern California, Los Angeles.
Viewpoint page 501
Supplemental content at jamasurgery.com
Corresponding Author: Stefano Giuliani, MD, PhD, Department of Pediatric and Neonatal Surgery, St George’s Healthcare NHS Trust and University of London, Blackshaw Road, London SW17 0QT, England (stefano.giuliani @nhs.net). jamasurgery.com
Transitioning Pediatric Surgical Patients to Adult Surgical Care A Call to Action Over the past 50 years, there has been a significant improvement in the outcomes for children with many complex congenital or acquired surgical conditions such as heart disease, gastroschisis, diaphragmatic hernia, anorectal malformations, spina bifida, and intestinal failure. As a result, the adult health care system is receiving a growing number of young adults, with chronic surgical issues, requiring lifelong assistance within a multidisciplinary model of care. In this emerging scenario, transitional care is vital for adolescents and young adults with active chronic surgical and medical problems who will require care from knowledgeable and well-trained adult physicians. In 2002, the American Academy of Pediatrics established that “the goal of a planned health care transition is to maximize lifelong functioning and well-being for all youth”1(p1304) and that transitional care is “a purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from childcentered to adult-oriented healthcare systems.”2(p571) An unsuccessful surgical transition may result in physical and mental health implications for young patients, negative long-term outcomes, and suboptimal use of health care resources.3 Currently, complex congenital heart disease is the only example of a rational and structured method of transition among pediatric and adult surgical practitioners. Heart defects are the most common form of congenital disease, and, in the past 4 decades, the survival rate has improved markedly from 25% to 75%. In 2011, the American Heart Association published a milestone article on how to transition the care of children with congenital heart disease into the adult health care system with special focus on epidemiology, timing and method of transition, quality of life, and social dynamics.4 Currently, there is a general lack of robust pathways for the transition of care in the majority of the other surgical specialties. A possible reason could be the absence of epidemiologic data assessing the number of children who require ongoing surgical and medical support into adulthood. However, there is a clear association between pediatric chronic surgical conditions, longterm medical and psychosocial issues, and poor quality of life. An example of this is children born with anorectal malformation. This is a congenital anomaly often associated with urologic, cardiac, skeletal, gastrointestinal, and spinal anomalies. It is good surgical practice, during childhood, to use a multidisciplinary approach to address the variety of issues (ie, severe constipation/ incontinence, neurogenic bladder, gynecologic and
sexual-related issues, and psychosocial problems) that are often present throughout early adulthood.5 In the United States, pediatric surgical subspecialties have developed, and in the late 1980s, they became further separated from adult medicine.6 This has resulted, on the one hand, in a significant improvement in the quality of general and specialty-specific pediatric surgical care. However, on the other hand, pediatric surgical services and adult surgical services have increasingly become more separated from each other. Moreover, surgeons working exclusively with adults are treating a growing number of patients with a history of major reconstructive surgeries during childhood, and these surgeons are doing this without the proper training or awareness of the medical issues that are peculiar to this group of young adults. Our eTable in the Supplement presents a review of the literature highlighting the overall paucity of data in the field of transition of surgical care. Who is then responsible for transitioning pediatric surgical patients to adult surgical care? Are the surgeons who normally treat and manage adult patients ready to treat and manage, often in a multidisciplinary way, the long-term issues of pediatric surgical patients? There are no straightforward answers. Surgeons working exclusively with adults may argue that it is the responsibility of the pediatric physicians to transfer the care of their surgical patients into the adult health care system. On the other end, pediatric surgeons may criticize their colleagues who provide adult care for their perceived disengagement from the transition process, their disregard in linking with pediatric services, their possible knowledge gap on the long-term issues of pediatric surgical diseases, and their indifference to the cost implications of young adults with chronic problems who are lost to appropriate follow-up into adulthood. This is a call to action for practitioners in all surgical specialties to take responsibility and provide leadership in developing a robust and structured network focused on child to adult transition of care. This challenge needs to be addressed in a systematic fashion, and the first step is to produce epidemiologic data about the specific pediatric surgical conditions requiring long-term care and their volume after puberty; the different types of hospitals and health care systems that centralize care for these patients (ie, children’s hospital vs general university hospital); the type of surgeons operating on complex pediatric anomalies (exclusively pediatric vs mixed practice); and the logistic, strategic, and educational differences present among specialties. This will identify the specific issues around the surgical transition of care that need to be further addressed. From the outset, pediatJAMA Surgery June 2014 Volume 149, Number 6
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://archsurg.jamanetwork.com/ by a Georgetown University Medical Center User on 05/25/2015
499
Opinion Viewpoint
ric surgical specialties would benefit from a national registry of all patients requiring transitional care in order to create a passporttype platform to be handed over to an adult health care system (ie, general practitioners, specialists, and community services). This approach will also facilitate the development of statistical models for risk stratification in order to predict outcomes and to allocate resources. The next step would be to develop specialty-specific models of transition to efficiently link heterogeneous pediatric surgical services to specialized adult ones. Managed care pathways and mixed adult/pediatric multidisciplinary teams are essential to transfer patient information and to exchange knowledge in a bidirectional way. The complexity of the care of some pediatric conditions requires a crossover of dedicated pediatric and adult practitioners working toARTICLE INFORMATION Published Online: April 2, 2014. doi:10.1001/jamasurg.2013.4848. Conflict of Interest Disclosures: None reported. REFERENCES 1. American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110(6, pt 2):1304-1306. 2. Blum RW, Garell D, Hodgman CH, et al. Transition from child-centered to adult health-care systems
500
gether on a long-term basis. Finally, comprehensive social and psychological support is an essential element throughout the transition process. Surgeons working with adults need to be aware of the complexity of the psychosocial issues of adolescents with chronic illness in terms of mental health and behavioral comorbidities, poor compliance, capacity of self-management, and health-related quality of life.7 In conclusion, the creation of a transitional care field across pediatric and adult surgery is a prerequisite for providing excellent lifelong quality of care for young patients with chronic illness who experience surgical problems. It will most certainly allow for better allocation of resources, improved outcomes and quality of life for these patients, and a significant reduction in health care costs.
for adolescents with chronic conditions: a position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993;14(7):570-576.
medical and psychosocial issues: a scientific statement from the American Heart Association. Circulation. 2011;123(13):1454-1485.
3. Lotstein DS, Inkelas M, Hays RD, Halfon N, Brook R. Access to care for youth with special health care needs in the transition to adulthood. J Adolesc Health. 2008;43(1):23-29.
5. Giuliani S, Midrio P, De Filippo RE, et al. Anorectal malformation and associated end-stage renal disease: management from newborn to adult life. J Pediatr Surg. 2013;48(3):635-641.
4. Sable C, Foster E, Uzark K, et al; American Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, Council on Clinical Cardiology, and Council on Peripheral Vascular Disease. Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and
6. Poley S, Ricketts T, Belsky D, Gaul K. Pediatric surgeons: subspecialists increase faster than generalists. Bull Am Coll Surg. 2010;95(10):35-38. 7. Sawyer SM, Drew S, Yeo MS, Britto MT. Adolescents with a chronic condition: challenges living, challenges treating. Lancet. 2007;369(9571): 1481-1489.
JAMA Surgery June 2014 Volume 149, Number 6
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://archsurg.jamanetwork.com/ by a Georgetown University Medical Center User on 05/25/2015
jamasurgery.com
VIEWPOINT
Stefano Giuliani, MD, PhD Department of Pediatric and Neonatal Surgery, St George’s Healthcare NHS Trust and University of London, London, England. Dean M. Anselmo, MD Department of Pediatric Surgery, Children’s Hospital Los Angeles, University of Southern California, Los Angeles.
Viewpoint page 501
Supplemental content at jamasurgery.com
Corresponding Author: Stefano Giuliani, MD, PhD, Department of Pediatric and Neonatal Surgery, St George’s Healthcare NHS Trust and University of London, Blackshaw Road, London SW17 0QT, England (stefano.giuliani @nhs.net). jamasurgery.com
Transitioning Pediatric Surgical Patients to Adult Surgical Care A Call to Action Over the past 50 years, there has been a significant improvement in the outcomes for children with many complex congenital or acquired surgical conditions such as heart disease, gastroschisis, diaphragmatic hernia, anorectal malformations, spina bifida, and intestinal failure. As a result, the adult health care system is receiving a growing number of young adults, with chronic surgical issues, requiring lifelong assistance within a multidisciplinary model of care. In this emerging scenario, transitional care is vital for adolescents and young adults with active chronic surgical and medical problems who will require care from knowledgeable and well-trained adult physicians. In 2002, the American Academy of Pediatrics established that “the goal of a planned health care transition is to maximize lifelong functioning and well-being for all youth”1(p1304) and that transitional care is “a purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from childcentered to adult-oriented healthcare systems.”2(p571) An unsuccessful surgical transition may result in physical and mental health implications for young patients, negative long-term outcomes, and suboptimal use of health care resources.3 Currently, complex congenital heart disease is the only example of a rational and structured method of transition among pediatric and adult surgical practitioners. Heart defects are the most common form of congenital disease, and, in the past 4 decades, the survival rate has improved markedly from 25% to 75%. In 2011, the American Heart Association published a milestone article on how to transition the care of children with congenital heart disease into the adult health care system with special focus on epidemiology, timing and method of transition, quality of life, and social dynamics.4 Currently, there is a general lack of robust pathways for the transition of care in the majority of the other surgical specialties. A possible reason could be the absence of epidemiologic data assessing the number of children who require ongoing surgical and medical support into adulthood. However, there is a clear association between pediatric chronic surgical conditions, longterm medical and psychosocial issues, and poor quality of life. An example of this is children born with anorectal malformation. This is a congenital anomaly often associated with urologic, cardiac, skeletal, gastrointestinal, and spinal anomalies. It is good surgical practice, during childhood, to use a multidisciplinary approach to address the variety of issues (ie, severe constipation/ incontinence, neurogenic bladder, gynecologic and
sexual-related issues, and psychosocial problems) that are often present throughout early adulthood.5 In the United States, pediatric surgical subspecialties have developed, and in the late 1980s, they became further separated from adult medicine.6 This has resulted, on the one hand, in a significant improvement in the quality of general and specialty-specific pediatric surgical care. However, on the other hand, pediatric surgical services and adult surgical services have increasingly become more separated from each other. Moreover, surgeons working exclusively with adults are treating a growing number of patients with a history of major reconstructive surgeries during childhood, and these surgeons are doing this without the proper training or awareness of the medical issues that are peculiar to this group of young adults. Our eTable in the Supplement presents a review of the literature highlighting the overall paucity of data in the field of transition of surgical care. Who is then responsible for transitioning pediatric surgical patients to adult surgical care? Are the surgeons who normally treat and manage adult patients ready to treat and manage, often in a multidisciplinary way, the long-term issues of pediatric surgical patients? There are no straightforward answers. Surgeons working exclusively with adults may argue that it is the responsibility of the pediatric physicians to transfer the care of their surgical patients into the adult health care system. On the other end, pediatric surgeons may criticize their colleagues who provide adult care for their perceived disengagement from the transition process, their disregard in linking with pediatric services, their possible knowledge gap on the long-term issues of pediatric surgical diseases, and their indifference to the cost implications of young adults with chronic problems who are lost to appropriate follow-up into adulthood. This is a call to action for practitioners in all surgical specialties to take responsibility and provide leadership in developing a robust and structured network focused on child to adult transition of care. This challenge needs to be addressed in a systematic fashion, and the first step is to produce epidemiologic data about the specific pediatric surgical conditions requiring long-term care and their volume after puberty; the different types of hospitals and health care systems that centralize care for these patients (ie, children’s hospital vs general university hospital); the type of surgeons operating on complex pediatric anomalies (exclusively pediatric vs mixed practice); and the logistic, strategic, and educational differences present among specialties. This will identify the specific issues around the surgical transition of care that need to be further addressed. From the outset, pediatJAMA Surgery June 2014 Volume 149, Number 6
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://archsurg.jamanetwork.com/ by a Georgetown University Medical Center User on 05/25/2015
499
Opinion Viewpoint
ric surgical specialties would benefit from a national registry of all patients requiring transitional care in order to create a passporttype platform to be handed over to an adult health care system (ie, general practitioners, specialists, and community services). This approach will also facilitate the development of statistical models for risk stratification in order to predict outcomes and to allocate resources. The next step would be to develop specialty-specific models of transition to efficiently link heterogeneous pediatric surgical services to specialized adult ones. Managed care pathways and mixed adult/pediatric multidisciplinary teams are essential to transfer patient information and to exchange knowledge in a bidirectional way. The complexity of the care of some pediatric conditions requires a crossover of dedicated pediatric and adult practitioners working toARTICLE INFORMATION Published Online: April 2, 2014. doi:10.1001/jamasurg.2013.4848. Conflict of Interest Disclosures: None reported. REFERENCES 1. American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110(6, pt 2):1304-1306. 2. Blum RW, Garell D, Hodgman CH, et al. Transition from child-centered to adult health-care systems
500
gether on a long-term basis. Finally, comprehensive social and psychological support is an essential element throughout the transition process. Surgeons working with adults need to be aware of the complexity of the psychosocial issues of adolescents with chronic illness in terms of mental health and behavioral comorbidities, poor compliance, capacity of self-management, and health-related quality of life.7 In conclusion, the creation of a transitional care field across pediatric and adult surgery is a prerequisite for providing excellent lifelong quality of care for young patients with chronic illness who experience surgical problems. It will most certainly allow for better allocation of resources, improved outcomes and quality of life for these patients, and a significant reduction in health care costs.
for adolescents with chronic conditions: a position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993;14(7):570-576.
medical and psychosocial issues: a scientific statement from the American Heart Association. Circulation. 2011;123(13):1454-1485.
3. Lotstein DS, Inkelas M, Hays RD, Halfon N, Brook R. Access to care for youth with special health care needs in the transition to adulthood. J Adolesc Health. 2008;43(1):23-29.
5. Giuliani S, Midrio P, De Filippo RE, et al. Anorectal malformation and associated end-stage renal disease: management from newborn to adult life. J Pediatr Surg. 2013;48(3):635-641.
4. Sable C, Foster E, Uzark K, et al; American Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, Council on Clinical Cardiology, and Council on Peripheral Vascular Disease. Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and
6. Poley S, Ricketts T, Belsky D, Gaul K. Pediatric surgeons: subspecialists increase faster than generalists. Bull Am Coll Surg. 2010;95(10):35-38. 7. Sawyer SM, Drew S, Yeo MS, Britto MT. Adolescents with a chronic condition: challenges living, challenges treating. Lancet. 2007;369(9571): 1481-1489.
JAMA Surgery June 2014 Volume 149, Number 6
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://archsurg.jamanetwork.com/ by a Georgetown University Medical Center User on 05/25/2015
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