Abstract

See related article, p 584At the 2010 World Congress of Internal Medicine in Melbourne, Russell Viner, one of the leading advocates of adolescent medicine in the United Kingdom, delivered a keynote address titled “Adolescent Health—The New Paediatrics.” Dr Viner described the shifts that have occurred in the balance of infant, child, and adolescent health in recent years and challenged his audience to acknowledge and embrace these changes by putting adolescent health at the heart of pediatrics.In the last decade, there has been an increasing recognition of the burden of health problems affecting adolescents and young adults and of the need for health services to adapt accordingly.1Kleinert S. Adolescent health: an opportunity not to be missed.Lancet. 2007; 369: 1057-1058Abstract Full Text Full Text PDF PubMed Scopus (79) Google Scholar, 2Viner R.M. Barker M. Young people's health: the need for action.BMJ. 2005; 330: 901-903Crossref PubMed Scopus (110) Google Scholar Common causes of morbidity in adolescents and young adults include injuries (intentional and non-intentional), mental health problems, drug and alcohol misuse, and sexual health problems. In contrast to the improvements seen in other age groups, such as infants and the elderly, key public health indicators in a number of priority areas of adolescent health, such as obesity, smoking, sexually transmitted infections, and teenage pregnancy, have shown adverse trends or no change in the past 20 years.2Viner R.M. Barker M. Young people's health: the need for action.BMJ. 2005; 330: 901-903Crossref PubMed Scopus (110) Google Scholar In addition, the number of adolescents and young adults growing up with chronic diseases of childhood is increasing as a result of improved treatment of these conditions.3Sawyer S.M. Drew S. Yeo M.S. Britton M.T. Adolescents with a chronic condition: challenges living, challenges treating.Lancet. 2007; 369: 1481-1489Abstract Full Text Full Text PDF PubMed Scopus (438) Google Scholar This not only places pressure on pediatric services, but also represents a challenge to adult health care providers.Young people with chronic health conditions such as spina bifida and cerebral palsy face more difficulties than their peers in negotiating adolescence.4Yeo M. Sawyer S. Chronic illness and disability.BMJ. 2005; 330: 721-723Crossref PubMed Scopus (48) Google Scholar The adolescent with disability must confront the major components of normal adolescence, such as increased body awareness and evolving sexuality, with the realization of the permanence of their disability. In this issue of The Journal, Liptak et al summarize well the literature that documents the reduced independence and quality of life of adolescents with chronic disability and report on the outcomes of a group of adolescents with spina bifida as they progress to young adulthood.5Liptak G.S. Kennedy J.A. Dosa N.P. Youth with spina bifida and transitions: health and social participation in a nationally represented sample.J Pediatr. 2010; 157: 584-588Abstract Full Text Full Text PDF PubMed Scopus (33) Google Scholar In their study, the authors highlight measures of social participation—for example, independent living, education and employment, relationships, and social interaction. This represents an attempt to move beyond a narrow focus on medical outcome measures (eg, neurological and musculoskeletal complications, renal and respiratory function deterioration) to a more comprehensive investigation of the lives of young adults with spina bifida. This is a natural consequence of the improvements in pediatric care that have occurred in recent decades.Liptak et al report certain factors that appear to be associated with improved measures of social participation in their cohort of young adults with spina bifida.5Liptak G.S. Kennedy J.A. Dosa N.P. Youth with spina bifida and transitions: health and social participation in a nationally represented sample.J Pediatr. 2010; 157: 584-588Abstract Full Text Full Text PDF PubMed Scopus (33) Google Scholar These include markers of education and employment (the level of educational attainment or employment of the “head of the household,” the degree of support received by the adolescent at school), having hobbies or special interests, and speaking English at home. Conversely, factors associated with reduced social participation include having difficulties with communication, learning difficulties, and being Hispanic. One area that is not addressed is mental health. Although physical impairments are a strong predictor of health status, they are not an accurate predictor of participation.6Wake M. Salmon L. Redihough D. Health status of Australian children with mild to severe cerebral palsy; cross sectional survey using the Child Health Questionnaire.Dev Med Child Neurol. 2003; 45: 194-199Crossref PubMed Google Scholar The mental health of both the adolescent and his/her family will also have a direct impact on the adolescent's capacity to participate. Depression itself is, of course, recognized as a further disability, which is associated with reduced adherence to specific treatment regimens.7Drotar D. Physician behaviour in the care of pediatric chronic illness: association with health outcomes and treatment adherence.J Dev Behav Pediatr. 2009; 30: 246-254Crossref PubMed Scopus (66) Google Scholar This, in turn, can lead to a deterioration in health with time, as documented in this study.5Liptak G.S. Kennedy J.A. Dosa N.P. Youth with spina bifida and transitions: health and social participation in a nationally represented sample.J Pediatr. 2010; 157: 584-588Abstract Full Text Full Text PDF PubMed Scopus (33) Google Scholar Adolescents with chronic illness and disability are vulnerable to mental illness co-morbidity—particularly mood and anxiety disorders—because of a complex interplay of factors, such as awareness of a reduced life expectancy, exhaustion and demoralization, the impact of disability on body image and self-esteem, and functioning within systems that do not readily accommodate the needs of the chronically unwell individual. It would be interesting to look in more detail at the family functioning and mental health status of both the adolescents and their parents in this cohort and determine the relationship between these factors and participation.In addition, participation for the adolescent with chronic disability often requires specialized equipment, extra time commitments, or both. In a family dealing with significant extra medical and therapy regimens, it is often difficult to direct time and resources to participation. The numbers in the study by Liptak et al were not sufficient to examine the effects of insurance status on change in health care. However, the authors did note that 90% of requests to fund specialized equipment for participation were refused.5Liptak G.S. Kennedy J.A. Dosa N.P. Youth with spina bifida and transitions: health and social participation in a nationally represented sample.J Pediatr. 2010; 157: 584-588Abstract Full Text Full Text PDF PubMed Scopus (33) Google ScholarThese data provide support for the principles championed by advocates of adolescent and young adult health: that healthcare should interact with all areas of a young person's life and that health professionals should work with colleagues across disciplines and agencies to promote an adolescent's development from childhood dependence to adult independence.8Payne D. Martin C. Viner R. Skinner R. Adolescent medicine in paediatric practice.Arch Dis Child. 2005; 90: 1133-1137Crossref PubMed Scopus (28) Google Scholar This involves acknowledging the role of education and employment, the benefits of participating in activities and having special interests, the close relationship between physical and mental health, and, as demonstrated in the current study, the importance of being able to communicate effectively and to negotiate life in the adult health system and beyond.What are the important messages to take from this report? We would like to highlight two. First, although interdisciplinary teams, drawn from medicine, nursing, physiotherapy, and occupational therapy are an established feature in the treatment of adolescents with chronic illness and disability, input from mental health professionals and from the education system is not always present. Significant resources from psychological medicine need to be directed toward adolescents to optimize individual and family function, adherence to treatment, and health outcomes during this vulnerable period. Access to support from teaching staff experienced in working with adolescents with chronic illness and disability is invaluable in optimizing a young person's educational opportunities during school years and beyond. Education may be a low priority when a student is very unwell, but school programs linked to hospital programs play an important role in promoting socialization and interaction with peers, providing routine, and offering role models and vocational guidance.9Hospital School Services. Available at: www.hospitalschoolservices.wa.edu.au. Accessed June 29, 2010.Google Scholar A positive educational outcome is more likely when a partnership exists among education and health services and the student and their family.10Closs A. Stead J. Arshad R. Norris C. School peer relationships of “minority” children in Scotland.Child Care Health Dev. 2001; 27: 133-148Crossref PubMed Scopus (18) Google Scholar Current models of interdisciplinary care therefore should attempt to incorporate education staff into their teams as a matter of course.Second, the development of high-quality transition services, which assist and support young people and their families during the move from pediatric to adult services, are essential. Evidence from across the spectrum of chronic illness demonstrates that poorly coordinated transitions can lead to young adults dropping out of the health system, with serious adverse health consequences in later life.11Kennedy A. Sawyer S. Transition from pediatric to adult services: are we getting it right?.Curr Opin Pediatr. 2008; 20: 403-409Crossref PubMed Scopus (110) Google Scholar Experience suggests that building mutually respectful working relationships between pediatricians and adult physicians is a key factor if successful transition programs are to be established. For clinicians currently practicing in pediatrics and adult medicine, the focus on adolescent and young adult health is only going to increase. We encourage you to embrace the challenge. See related article, p 584At the 2010 World Congress of Internal Medicine in Melbourne, Russell Viner, one of the leading advocates of adolescent medicine in the United Kingdom, delivered a keynote address titled “Adolescent Health—The New Paediatrics.” Dr Viner described the shifts that have occurred in the balance of infant, child, and adolescent health in recent years and challenged his audience to acknowledge and embrace these changes by putting adolescent health at the heart of pediatrics. See related article, p 584 See related article, p 584 In the last decade, there has been an increasing recognition of the burden of health problems affecting adolescents and young adults and of the need for health services to adapt accordingly.1Kleinert S. Adolescent health: an opportunity not to be missed.Lancet. 2007; 369: 1057-1058Abstract Full Text Full Text PDF PubMed Scopus (79) Google Scholar, 2Viner R.M. Barker M. Young people's health: the need for action.BMJ. 2005; 330: 901-903Crossref PubMed Scopus (110) Google Scholar Common causes of morbidity in adolescents and young adults include injuries (intentional and non-intentional), mental health problems, drug and alcohol misuse, and sexual health problems. In contrast to the improvements seen in other age groups, such as infants and the elderly, key public health indicators in a number of priority areas of adolescent health, such as obesity, smoking, sexually transmitted infections, and teenage pregnancy, have shown adverse trends or no change in the past 20 years.2Viner R.M. Barker M. Young people's health: the need for action.BMJ. 2005; 330: 901-903Crossref PubMed Scopus (110) Google Scholar In addition, the number of adolescents and young adults growing up with chronic diseases of childhood is increasing as a result of improved treatment of these conditions.3Sawyer S.M. Drew S. Yeo M.S. Britton M.T. Adolescents with a chronic condition: challenges living, challenges treating.Lancet. 2007; 369: 1481-1489Abstract Full Text Full Text PDF PubMed Scopus (438) Google Scholar This not only places pressure on pediatric services, but also represents a challenge to adult health care providers. Young people with chronic health conditions such as spina bifida and cerebral palsy face more difficulties than their peers in negotiating adolescence.4Yeo M. Sawyer S. Chronic illness and disability.BMJ. 2005; 330: 721-723Crossref PubMed Scopus (48) Google Scholar The adolescent with disability must confront the major components of normal adolescence, such as increased body awareness and evolving sexuality, with the realization of the permanence of their disability. In this issue of The Journal, Liptak et al summarize well the literature that documents the reduced independence and quality of life of adolescents with chronic disability and report on the outcomes of a group of adolescents with spina bifida as they progress to young adulthood.5Liptak G.S. Kennedy J.A. Dosa N.P. Youth with spina bifida and transitions: health and social participation in a nationally represented sample.J Pediatr. 2010; 157: 584-588Abstract Full Text Full Text PDF PubMed Scopus (33) Google Scholar In their study, the authors highlight measures of social participation—for example, independent living, education and employment, relationships, and social interaction. This represents an attempt to move beyond a narrow focus on medical outcome measures (eg, neurological and musculoskeletal complications, renal and respiratory function deterioration) to a more comprehensive investigation of the lives of young adults with spina bifida. This is a natural consequence of the improvements in pediatric care that have occurred in recent decades. Liptak et al report certain factors that appear to be associated with improved measures of social participation in their cohort of young adults with spina bifida.5Liptak G.S. Kennedy J.A. Dosa N.P. Youth with spina bifida and transitions: health and social participation in a nationally represented sample.J Pediatr. 2010; 157: 584-588Abstract Full Text Full Text PDF PubMed Scopus (33) Google Scholar These include markers of education and employment (the level of educational attainment or employment of the “head of the household,” the degree of support received by the adolescent at school), having hobbies or special interests, and speaking English at home. Conversely, factors associated with reduced social participation include having difficulties with communication, learning difficulties, and being Hispanic. One area that is not addressed is mental health. Although physical impairments are a strong predictor of health status, they are not an accurate predictor of participation.6Wake M. Salmon L. Redihough D. Health status of Australian children with mild to severe cerebral palsy; cross sectional survey using the Child Health Questionnaire.Dev Med Child Neurol. 2003; 45: 194-199Crossref PubMed Google Scholar The mental health of both the adolescent and his/her family will also have a direct impact on the adolescent's capacity to participate. Depression itself is, of course, recognized as a further disability, which is associated with reduced adherence to specific treatment regimens.7Drotar D. Physician behaviour in the care of pediatric chronic illness: association with health outcomes and treatment adherence.J Dev Behav Pediatr. 2009; 30: 246-254Crossref PubMed Scopus (66) Google Scholar This, in turn, can lead to a deterioration in health with time, as documented in this study.5Liptak G.S. Kennedy J.A. Dosa N.P. Youth with spina bifida and transitions: health and social participation in a nationally represented sample.J Pediatr. 2010; 157: 584-588Abstract Full Text Full Text PDF PubMed Scopus (33) Google Scholar Adolescents with chronic illness and disability are vulnerable to mental illness co-morbidity—particularly mood and anxiety disorders—because of a complex interplay of factors, such as awareness of a reduced life expectancy, exhaustion and demoralization, the impact of disability on body image and self-esteem, and functioning within systems that do not readily accommodate the needs of the chronically unwell individual. It would be interesting to look in more detail at the family functioning and mental health status of both the adolescents and their parents in this cohort and determine the relationship between these factors and participation. In addition, participation for the adolescent with chronic disability often requires specialized equipment, extra time commitments, or both. In a family dealing with significant extra medical and therapy regimens, it is often difficult to direct time and resources to participation. The numbers in the study by Liptak et al were not sufficient to examine the effects of insurance status on change in health care. However, the authors did note that 90% of requests to fund specialized equipment for participation were refused.5Liptak G.S. Kennedy J.A. Dosa N.P. Youth with spina bifida and transitions: health and social participation in a nationally represented sample.J Pediatr. 2010; 157: 584-588Abstract Full Text Full Text PDF PubMed Scopus (33) Google Scholar These data provide support for the principles championed by advocates of adolescent and young adult health: that healthcare should interact with all areas of a young person's life and that health professionals should work with colleagues across disciplines and agencies to promote an adolescent's development from childhood dependence to adult independence.8Payne D. Martin C. Viner R. Skinner R. Adolescent medicine in paediatric practice.Arch Dis Child. 2005; 90: 1133-1137Crossref PubMed Scopus (28) Google Scholar This involves acknowledging the role of education and employment, the benefits of participating in activities and having special interests, the close relationship between physical and mental health, and, as demonstrated in the current study, the importance of being able to communicate effectively and to negotiate life in the adult health system and beyond. What are the important messages to take from this report? We would like to highlight two. First, although interdisciplinary teams, drawn from medicine, nursing, physiotherapy, and occupational therapy are an established feature in the treatment of adolescents with chronic illness and disability, input from mental health professionals and from the education system is not always present. Significant resources from psychological medicine need to be directed toward adolescents to optimize individual and family function, adherence to treatment, and health outcomes during this vulnerable period. Access to support from teaching staff experienced in working with adolescents with chronic illness and disability is invaluable in optimizing a young person's educational opportunities during school years and beyond. Education may be a low priority when a student is very unwell, but school programs linked to hospital programs play an important role in promoting socialization and interaction with peers, providing routine, and offering role models and vocational guidance.9Hospital School Services. Available at: www.hospitalschoolservices.wa.edu.au. Accessed June 29, 2010.Google Scholar A positive educational outcome is more likely when a partnership exists among education and health services and the student and their family.10Closs A. Stead J. Arshad R. Norris C. School peer relationships of “minority” children in Scotland.Child Care Health Dev. 2001; 27: 133-148Crossref PubMed Scopus (18) Google Scholar Current models of interdisciplinary care therefore should attempt to incorporate education staff into their teams as a matter of course. Second, the development of high-quality transition services, which assist and support young people and their families during the move from pediatric to adult services, are essential. Evidence from across the spectrum of chronic illness demonstrates that poorly coordinated transitions can lead to young adults dropping out of the health system, with serious adverse health consequences in later life.11Kennedy A. Sawyer S. Transition from pediatric to adult services: are we getting it right?.Curr Opin Pediatr. 2008; 20: 403-409Crossref PubMed Scopus (110) Google Scholar Experience suggests that building mutually respectful working relationships between pediatricians and adult physicians is a key factor if successful transition programs are to be established. For clinicians currently practicing in pediatrics and adult medicine, the focus on adolescent and young adult health is only going to increase. We encourage you to embrace the challenge. Thank you to Hayden Wilson for assistance with this editorial. Youth with Spina Bifida and Transitions: Health and Social Participation in a Nationally Represented SampleThe Journal of PediatricsVol. 157Issue 4PreviewTo describe outcomes and identify factors that affect social participation in youth and young adults with spina bifida. Full-Text PDF

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