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Diagnosis-Specific
This section focuses on articles that address health transition and/or adult health aspects of specific developmental and behavioral diagnoses as well as other childhood onset chronic illnesses. These articles are arranged by diagnosis with links to their PubMed citation.
This section includes articles from a series featured in Journal of Developmental and Behavioral Pediatrics called ‘Developmental and Behavioral Disorders Grown Up’. The articles in the series address the developmental course, treatment, and adult outcomes of major developmental and behavioral disorders and include a summary and implications for current practice. Topics include:
- Developmental and Behavioral Disorders Grown Up: Attention Deficit Hyperactivity Disorder
Article in the series on developmental and behavioral disorders grown-up. Uses a clinical vignette to discuss diagnostic criteria, approaches and epidemiology in children versus adults. Includes changes with age, functional/adaptive outcomes in adulthood, management and treatment support, suggestions for facilitating transition, and implications for practice and research. |
Antshel, Kevin M. PhD; Barkley, Russell PhD
J Dev Behav Pediatr. 2009 Feb;30(1):81-90
www.ncbi.nlm.nih.gov/pubmed/19218850 |
- Young adults with ADHD: An Analysis of Their Service Needs on Transfer to Adult Services
Analysis of medication and mental health status of 139 children age 14 and over at a pediatric neurodisability clinic in Sheffield, UK. Findings of the case note reviews are discussed in the context of the recent National Institute for Health and Clinical Excellence guidelines, which highlighted the need to provide transition services for young people with ADHD who have continuing impairment. The contributions identified for this study are:
• At transition to adult services, young people with ADHD often have ongoing symptoms needing medication and co-morbid conditions; they are at increased risk of committing criminal offences.
• These young people need continuing support in adulthood which could be provided by trained professionals including general practitioners, adult mental health teams and specialist ADHD nurses. |
Naomi Taylor, Amy Fauset, Val Harpin
Arch Dis Child 2010;95:513-517
www.ncbi.nlm.nih.gov/pubmed/20530525 |
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- Adolescents with Asthma: Consequences of Transition from Paediatric to Adult Healthcare
A prospective follow-up of adolescents with asthma designed to identify risk factors for deterioration during and after transfer from paediatric to adult healthcare. During a five-year follow-up of asthmatic adolescents leaving paediatric care, pulmonary function rarely deteriorated, but bronchial hyperresponsiveness persisted. Female gender and poor adherence to treatment exerted negative impact on bronchial hyperresponsiveness. Mild/moderate asthma was managed equally effectively with primary or specialized care. |
Sten-Erik Bergstro¨m, Kerstin Sundell, Gunilla Hedlin
Respiratory Medicine (2010) 104, 180e187
www.ncbi.nlm.nih.gov/pubmed/19889523 |
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- Social Participation in a Nationally Representative Sample of Older Youth and Young Adults with Autism
Study to describe social participation and identify factors that affect it in a nationally representative sample of adolescents and young adults with autism. A nationally representative sample of 725 youth with autism representing a weighted sample of 21,010 individuals was followed up for 4 years. The mean age at first interview was 15.4 years and 19.2 years at follow-up. More than half the youth at follow-up had not gotten together with friends in the previous year and 64% had not talked on the phone with a friend. Many adolescents and young adults with autism become increasingly isolated. Although each aspect of social participation had its own distinct pattern of factors related to it, the ability to communicate effectively, less severe autism, coming from an environment that was not impoverished and having parents who advocated were associated with more positive outcomes. These data provide insights into the factors that affect the participation of youth with autism during their transition years and should ultimately lead to interventions that could improve those transitions. |
Liptak, GS, Kennedy, JA, and Dosa, NP
Journal of Developmental and Behavioral Pediatrics 2011 Apr 15.
[Epub Ahead Of Print]
www.ncbi.nlm.nih.gov/pubmed/21285894 |
- Beyond the Roadblocks: Transitioning to Adulthood with Asperger's Disorder
Growing up with Asperger’s disorder is complex and fraught with difficulty. Although the literature includes some research related to the transition of youth with Asperger’s disorder to school and employment, none pertains to the transition to adulthood and independent living. Although a marginal number of young adults with Asperger’s disorder eventually achieve independence, many of them continue to depend on families for supportive services. Currently, health care organizations and social services lack coherent, integrated systems to assist youth with Asperger’s disorder and their families with the out-of-home transition. To better facilitate the process, this article reviews the literature on Asperger’s disorder, leading to a comprehensive, evidence-based transition assessment guide framed by A. Maslow’s (1972) hierarchy of needs. |
Lawrence,D.H., Alleckson, D.A. and Bjorklund, P
Archives of Psychiatric Nursing, Vol. 24, No. 4 (August), 2010: pp 227–238
www.ncbi.nlm.nih.gov/pubmed/20650368 |
- Post–High School Service Use among Young Adults with an Autism Spectrum Disorder
Nationally representative telephone survey from April 2007 to February 2008 of parents and guardians of young adults with autism spectrum disorders aged 19 to 23 years. Asked about use of mental health services, medical evaluation and assessment, speech therapy, and case management in the prior 2 years or since leaving high school. Rates of service use ranged from 9.1% for speech therapy to 41.9% for case management. Thirty-nine% of youths with an autism spectrum disorder represented by the survey received no services. The adjusted odds of no services were higher among African American participants and those with low incomes. The adjusted odds of case management were lower among youths with high functional skills and those with low incomes. Rates of service disengagement are high after exiting high school. Disparities by race and socioeconomic status indicate a need for targeted outreach and services. |
Shattuck, P.T., Wagner; M., Narendorf, S., Sterzing, P. & Hensley, M.
Arch Pediatr Adolesc Med. 2011;165(2):141-146.
www.ncbi.nlm.nih.gov/pubmed/21300654 |
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- Oppositional Defiant Disorder and Conduct Disorder Grown-Up
Article in the series on Developmental and Behavioral Disorders Grown-up. Uses a case vignette model. Discusses diagnostic criteria and epidemiology of ODD and CD, developmental course and association between ODD and CD. Includes functional outcomes, treatment and management, and implications for current practice and research. |
Kimonis, E.R. & Frick, P.J.
Journal of Developmental & Behavioral Pediatrics. 31(3):244-254, April 2010.
www.ncbi.nlm.nih.gov/pubmed/20410703 |
- Developmental and Behavioral Disorders Grown Up: Tourette's Disorder
Article in the series on Developmental and Behavioral Disorders Grown-up. Uses a case vignette approach. Discusses diagnostic criteria and approaches and epidemiology of Tourette’s in children versus adults. Covers change and persistence of multiple symptoms and disease characteristics with age. Includes functional and adaptive outcomes in adulthood, both medical and psychosocial management/treatment support in adults versus children, and predictors/ mediators of adult outcomes. |
Zinner, S.H.; Coffey, B.J.
Journal of Developmental & Behavioral Pediatrics. 30(6):560-573, December 2009. www.ncbi.nlm.nih.gov/pubmed/19996902 |
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- Transitioning Childhood Cancer Survivors to Adult-Centered Healthcare: Insights from Parents, Adolescent, and Young Adult Survivors
Study to determine Latino adolescent and young adults (AYA) cancer survivors' perceived barriers or facilitators to transition from pediatric to adult-centered survivorship care and to also assess the parents' perspective of care. Twenty-seven Latino AYA survivors (⩾15 years of age) completed key informant interviews and 21 Latino parents participated in focus groups. Both AYA survivors and parents identified two major facilitative factors for survivorship care: Involvement of the nuclear family in the AYA's survivorship care in the adult healthcare setting and including symptom communication in late effects discussions. Barriers to care included: perceived stigma of a cancer history and continued emotional trauma related to discussions about the childhood cancer experience. |
Casillas, J., Kahn, K.L., Doose, M., Landier, W., Bhatia, S., Hernandez, J. & Zeltzer, L.K.
Psycho-Oncology, Volume 19, Issue 9, pages 982–990, September 2010
www.ncbi.nlm.nih.gov/pubmed/20017115 |
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- Cerebral Palsy Grown Up
Article in the series on Developmental and Behavioral Disorders Grown-up. Uses case vignette model to demonstrate potential of individuals with severe CP. Covers diagnostic criteria and functional classification, prevalence, change in function with age, functional outcomes, predictors/mediators of adult outcomes and care coordination differences in adulthood. |
Glew, GM & Bennett, FC
Journal of Developmental and Behavioral Pediatrics 2011, Jul-Aug:32(6): 469-75
www.ncbi.nlm.nih.gov/pubmed/21654334 |
- Health and Well Being of Adults with Cerebral Palsy
Reviews what is known about the health and well being of adults with cerebral palsy. It also addresses the factors known to affect the areas identified in the World Health Organization International Classification of Functioning model as being critical for optimal health and well being. Recent findings: As adolescents with cerebral palsy progress to adulthood, they decrease their utilization of health and related services, in part because the transition to adult services is less than optimal. Adults with cerebral palsy have a high prevalence of comorbid and secondary conditions like pain. They have been shown to have regression in several areas of functioning including mobility. Adults with cerebral palsy also have less participation in areas such as social interactions, employment, marriage, and independent living than adults without cerebral palsy. Factors such as cognitive abilities, the severity of the cerebral palsy and age all affect participation. Very few studies have been done in adults to identify interventions that will help them achieve better health and well being. |
Liptak, G.S.
Current Opinion in Neurology 2008, 21:136–142
www.ncbi.nlm.nih.gov/pubmed/18317270 |
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- Canadian consensus guidelines: Primary care of adults with developmental disabilities
[Note: The terms developmental disabilities (DD) or intellectual disabilities are used synonymously in Canada (equivalent to learning disabilities in the United Kingdom) to refer to a range of conditions in which lifelong limitations in intellectual functioning and conceptual, social, and practical skills are noticeable before age 18 years.]
Update of the 2006 Canadian guidelines for primary care of adults with developmental disabilities (DD) with practical recommendations based on current knowledge to address the particular health issues of adults with DD. Adults with DD have complex health issues, many of them differing from those of the general population. Good primary care identifies the particular health issues faced by adults with DD to improve their quality of life, to improve their access to health care, and to prevent suffering, morbidity, and premature death. These guidelines synthesize general, physical, behavioral, and mental health issues of adults with DD that primary care providers should be aware of, and present recommendations for screening and management. |
Sullivan WF et al.
Canadian Family Physician. 57:541-553. 2011.
www.cfp.ca/content/57/5/e154.abstract |
- Developmental and Behavioral Disorders Grown-Up — Intellectual Disability
Article in the series on Developmental and Behavioral Disorders Grown-up. Uses case vignette model for discussion. Covers diagnostic criteria, history and legislation, and epidemiology. Discusses the change in prevalence of ID from childhood into adulthood and possible reasons. Includes functional/adaptive outcomes in adulthood as well as predictors and mediators of outcomes. Includes management and treatment support for children versus adults. |
Huang, P. & Blum, N.J.
Journal of Developmental and Behavioral Pediatrics, Vol. 31, No. 1, January 2010
www.ncbi.nlm.nih.gov/pubmed/20081439 |
- Transition for Teenagers with Intellectual Disability: Carers’ Perspectives
Teenagers with intellectual disabilities (ID) have significantly more health problems than the rest of the population and many encounter difficulties accessing the services they need during the transition from children’s to adult services. A multidisciplinary, interagency study was carried out in one area of the UK with the intent to estimate the number of teenagers with ID between the ages of 16 and 19, their levels of mental and physical healthcare needs, their carers’ perceptions of the transition process to adult services and unmet needs, and to make recommendations on how to address unmet needs. Authors found that carers were concerned about the lack of information concerning transition planning and adult services, and wanted earlier, more coordinated transition planning. The data confirmed the need for quality information and validated standardized tools that could be used for transition planning. Recommendations are that integrated referral systems for health and social care need to be developed, with links to clear care pathways, and that individual and systemic outcomes should be monitored. |
Bhaumik, S., Watson J., Barrett M., Raju, B., Burton T. & Forte, J.
Journal of Policy and Practice in Intellectual Disabilities,
Vol 8 Num 1 pp 53–61 March 2011
http://onlinelibrary.wiley.com/doi/10.1111/j.1741-1130.2011.00286.x/citedby |
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- Parent–adolescent Communication and Diabetes: An Integrative Review
This paper presents a synthesis of findings from empirical studies about communication and interaction between parents and their adolescents with diabetes. A search of published studies from 1985 to 2006 featuring communication or interaction between parents and adolescents with type 1 diabetes was implemented through a computerized search. Main findings listed in study were:
• Perceptions of both parents and adolescents about their communication about diabetes management are relevant to diabetes outcomes.
• Communication of parental support and parental involvement through communication continues to be important to adolescents and diabetes management during adolescence.
• Assisting parents to decrease controlling communications may diminish conflict, increase parent–adolescent relationship satisfaction and enhance diabetes quality of life during the transition through adolescence. |
Dashiff C., Hardeman T. & Mclain R. (2008)
Journal of Advanced Nursing 62(2), 140–162
www.ncbi.nlm.nih.gov/pubmed/18394028 |
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- Part II: Clinical Practice Guidelines for Adolescents and Young Adults with Down Syndrome: 12 to 21 Years.
This article will summarize the current clinical guidelines for persons with DS from 13 to 21 years and review relevant issues related to the health care of this population, including sexuality concerns that arise at the time of puberty (Cohen, 1999; American Academy of Pediatrics [AAP] Committee on Genetics, 2001). In addition, we will discuss educational issues, focusing specifically on the process of transition. |
Cleve, V., Cannon, S. & Cohen, W.I.
J Pediatr Health Care 2006 May-Jun;20(3):198-205.
www.ncbi.nlm.nih.gov/pubmed/16675381 |
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- Development and Implementation of an Adolescent Epilepsy Transition Clinic
This article describes the collaborative development of a nurse-led transition clinic within the Comprehensive Epilepsy Program at the Stollery Children’s Hospital and at the University of Alberta Hospital. Concerns expressed by teens and their parents in health care provider transition included fear of the unknown, change in appointment location, loss of established relationships, and anticipated decrease in the quality of care post transition. Concerns of adult and pediatric healthcare providers related to the adolescents’ working knowledge of how their particular type of epilepsy and its management interact with typical adolescent developmental challenges and future career and lifestyle choices. The results from a process evaluation are presented and offer new insights for improving adolescent transition. |
Jurasek, L., Ray, L. & Quigley, D.
Journal of Neuroscience Nursing: Volume 42, Number 4, August 2010
www.ncbi.nlm.nih.gov/pubmed/20804112 |
- The Prevalence and Management of Epilepsy in Secondary School Pupils with and without Special Educational Need
Retrospective observational study to (i) determine the prevalence of epilepsy (including the various epilepsies and epilepsy syndromes) in a secondary school population; and (ii) compare the management of epilepsy between secondary school pupils with and without special educational needs. Health records were examined to determine the prevalence, characteristics and management of the epilepsy, and the presence of any special educational needs, other learning difficulties or physical disability. Results The prevalence of epilepsy was 4.1 per 1000, being 10 times higher among adolescents who had special educational needs. Pupils with epilepsy and special educational needs had more poorly controlled epilepsy, but did not have a higher number of focal seizures nor were they taking a greater number of anti-epileptic drugs. A physical disability occurred five times more often in those with special educational needs and epilepsy. While epilepsy in pupils at mainstream school without special educational needs was better controlled, one-fifth of these subjects had poorly controlled epilepsy and a few also had physical disabilities.
Conclusions: Epilepsy is more challenging to control in adolescents with special educational needs attending special schools. However, some pupils in mainstream secondary schools had poorly controlled epilepsy even when they did not have recognized special educational needs. Health and education professionals working across the range of secondary school environments need to be able to support pupils with challenging epilepsy, many of whom will also have special educational needs and some a physical disability, as an increasing number of adolescents with these difficulties are being placed in mainstream schools. |
Swiderska, N., Gondwe, J., Joseph, J. & Gibbs, J.
Child: Care, Health and Development May 2010
www.ncbi.nlm.nih.gov/pubmed/20637024 |
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- Adolescents' Transition to Self-Management of a Chronic Genetic Disorder
Self-management of chronic illness requires acquisition of self-care skills such as seeking knowledge, adhering to recommendations, practicing healthy behaviors, and life-long self-surveillance. This article describes the core problem and psychosocial processes by which parents transfer, and children take on, the responsibility for managing a chronic genetic condition. Individuals with Marfan syndrome (MFS), their parents, and health care providers were the sources of empirical data. A sample of 108 providers, parents, and individuals with MFS were recruited through a genetics clinic and the National Marfan Foundation. The core problem of “becoming fit and fitting in” is resolved via concurrent psychosocial processes: shifting perspective, shifting orientation, shifting sphere, shifting ownership, and shifting reasoning. Transition to self-management is more than planning the transfer of services from pediatric to adult care, and involves gradual changes in knowledge, attitudes, and behavior influenced by parents, peers, and health care providers. Transition to self-management is part of an evolving model of participation in life-long surveillance. |
Giarelli, E., Bernhardt, B.A., Mack, R. & Pyeritz, R.E.
Qualitative Health Res 2008; 18; 441
www.ncbi.nlm.nih.gov/pubmed/18354044 |
- Supporting Transition to Adulthood among Youth with Mental Health Needs: Action Steps for Policymakers
This Policy Brief calls attention to the challenges faced by youth and young adults with mental health needs during their transition to adulthood and provides information to help policymakers at the state and local level develop and improve service delivery systems for this population. Of particular importance is the discussion of how many young adults face differences in eligibility for mental health care services after age 21. |
Larson, M.
Policy Brief: National Collaborative On Workforce and Disability for Youth, Issue 2, September 2009
www.ncwd-youth.info/policy-brief-02 |
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- Special Needs Fact Sheets for Providers and Caregivers
Fact sheets for 14 mild to moderate manifestations of special needs conditions have been developed for Dental Professionals, Medical Professionals & Parents and Caregivers. Content for the fact sheets were developed by a group of experts affiliated with the University of Washington and the Washington State Department of Health - Oral Health Program. Fact Sheets for the 14 conditions can be downloaded at this website in versions for dental professionals, medical professionals and parents. In addition, there are general oral health guidance sheets for dental and medical professionals and a guidance sheet on recognizing child abuse for dental providers. |
http://dental.washington.edu/departments/omed/decod/special_needs_facts.php |
- Facilitating the Transition of Patients with Special Health Care Needs from Pediatric to Adult Oral Health Care
This article reports a survey of 4,000 pediatric dentists about their transition of adolescent patients with and without special health care needs (SHCNs) to adult care. Survey response rate was 42%, with most respondents reporting that they did provide transition services and that the predominant barrier to transitioning to adult care was availability of general dentists and specialists who were willing to accept these new patients. Pediatric dentists’ answers paralleled those of pediatricians for the most part in terms of services provided and barriers to transition. |
Nowak, A.J., Casamassimo, P.S. & Slayton, R.L.
J Am Dent Assoc November 2010 141(11): 1351-1356
www.ncbi.nlm.nih.gov/pubmed/21037193 |
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- Poverty Grown Up: How Childhood Socioeconomic Status Impacts Adult Health
Article in the series on Developmental and Behavioral Disorders Grown-up. Uses clinical scenario to discuss three main influences related to children’s socioeconomic status that impact long-term health. Covers specific influences of childhood socioeconomic status that affect adult health outcomes. Suggests implications for clinical practice and health policy. |
Conroy, K., Sandel, M. & Zuckerman, B.
Journal of Developmental & Behavioral Pediatrics. 31(2):154-160, February/March 2010.
www.ncbi.nlm.nih.gov/pubmed/20145476 |
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- Adult Outcomes of Preterm Children
Article in the series on Developmental and Behavioral Disorders Grown-up. Uses case example. Covers history of neonatal care for preterm infants, an overview of adult outcome studies, including specific neurodevelopmental outcomes, educational attainment and employment, health outcomes, specific behavioral problems and evidence for psychopathology. |
Hack, M.
J Dev Behav Pediatr 30:460–470, 2009
www.ncbi.nlm.nih.gov/pubmed/19823140 |
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- The Challenges of Transferring Chronic Illness Patients to Adult Care: Reflections from Pediatric and Adult Rheumatology at a US Academic Center
Report of a study to examine changes in disease status, treatment and health care utilization among adolescents transferring to adult care at the University of California San Francisco (UCSF). Records of 31 patients who transferred from pediatric to adult care over a period of ten years were examined. A significant percentage of patients had active disease at the time of transfer, and disease flares were common during the transfer period. These findings highlight the importance of a seamless transfer of care between rheumatology providers. |
Hersh, A.O., Pang, S., Curran, M.L., Milojevic D.S. & and von Scheven, E.
Pediatric Rheumatology 2009, 7:13doi:10.1186/1546-0096-7-13
www.ped-rheum.com/content/7/1/13 |
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- Management Goals for the Spina Bifida Neurogenic Bladder: A Review from Infancy to Adulthood
Patients with spina bifida require longitudinal urological care as they transition from childhood to adolescence and then to adulthood. Issues important to urological health, such as protection of the upper tracts and prevention of incontinence, need vigilant follow-up throughout the patient's life. As the child ages, additional issues such as sexual functioning also become increasingly important for social integration. Despite this need for regular assessment, many adult patients with spina bifida lose coordinated urological care after leaving specialized pediatric spina bifida clinics. Consequently, urologists frequently encounter an adult patient with spina bifida in practice and they need to understand the basic urological treatment goals and potential complications for this population. |
Mourtzinos, A. & Stoffel, J.T.
Urologic clinics of North America (0094-0143), 37 (4), p. 527.
www.ncbi.nlm.nih.gov/pubmed/20955904 |
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- Dedicated Clinic Can Ease Transition to Adult Urology Service
Presented April 19, 2010. A multidisciplinary clinic can help facilitate the move from a pediatric to an adult urology service for adolescents with complex urological conditions and the physicians who treat them. Description of a presentation that describes some of the transition issues for adolescents and how they are addressed in a clinic established to manage the transitional care of complex pediatric urology. |
Stein, J.
European Association of Urology (EAU) 25th Annual Congress: Abstract 811.
www.medscape.com/viewarticle/720663 |
- Health Care Transition in Thalassemia: Pediatric to Adult-Oriented Care
Improved technology and medical advances have increased the lifespan for people with thalassemia. As thalassemia is no longer exclusively a pediatric blood disorder, consideration must now be given to transition planning from pediatric to adult care. The complexity of thalassemia disease, coupled with the changing face of U.S. health care, creates barriers to transitional planning. Additional barriers develop because this chronic disease is less common in adults, leaving caregivers unprepared to facilitate proper adult treatment. This paper will discuss two common U.S. health care settings where care is provided to adults with thalassemia. It will also offer health care administrators, providers, policy makers, and the thalassemia community at large some recommendations on the provision of comprehensive, quality care to assure the best possible outcomes no matter what setting is available to adult patients living with thalassemia. |
Levine, L. & Levine. M.
Ann. N.Y. Acad. Sci. 1202 (2010) 244–247
www.ncbi.nlm.nih.gov/pubmed/20712800 |
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