Introduction to Transition

Last modified by Lisa Stromquist on 2016/08/10 19:35

There is an increased need for direction in the development of programs for the transition of YSHCN from the paediatric system to adult health services as a result of various emerging concerns and barriers in this field. These barriers include the psychosocial concerns of adolescents and young adults with special health care needs; documented by outcomes related to poor transfer experiences and changes in health care environments.

Psychosocial and Unique Health Needs of YSHCN

As transitions occur at all points in the health care trajectory for Canadians, transition care planning is not exclusive to YSHCN. However, transition care can be particularly complex and challenging for YSCHN as these young people are at risk for additional psychosocial difficulties. This includes difficulties with social functioning 9, anxiety disorders 10, depression 9–12, suicidal ideation 10,11,13, and suicide attempts 11,13. In addition, adolescents with chronic health conditions are as likely or more likely, to engage in risky behaviours (e.g., dangerous sexual activity, and tobacco, alcohol and illicit drug use) compared to peers without medical conditions11,14,15.  A 2007 review suggested that “a chronic health condition in adolescence can represent a major psychosocial burden”16. Risk factors such as these can increase the complexity involved in transitioning from paediatric to adult care, place a higher burden on families and reduce the individual’s quality of life in the short term. This could also lead to the establishment of harmful long term behaviours that result in adverse health outcomes 17.  

An adolescent's transition from paediatric to adult health care can also be a stressful time for parents/caregivers, and may place a toll on their health or psychological well-being 18. Parents may experience competing demands, such as needing to provide care for their child with special health care needs, as well as themselves and other family members 18. Psychological distress in parents is associated with poor adolescent health outcomes. For instance, caregiver depressive symptoms, as mediated in part by perceived caregiver burden, were found to be related to poor glycaemic control in adolescents with type 1 diabetes 19. In addition, adolescents with cystic fibrosis were more likely to report psychological symptoms themselves if their parents reported symptoms of depression or anxiety 20

Research indicates that adolescence and young adulthood (often referred to in the literature as “emerging adulthood”) is a physically, socially and neurologically unique developmental period, and the attainment of adult-like behaviors now often extends to 25 years and beyond 21. This results in young adults remaining at home longer and reliant on their parents for support. While young people recognize that certain attributes are necessary to become an adult, the timing of acquiring these attributes differs 21. Therefore, a “one size fits all” model for preparing youth to transfer to adult care is not possible. Transition needs to be an individualized, coordinated and collaborative process between the youth, family and paediatric and adult care providers, occurring over time and spanning both adolescence and early adulthood 22. Understanding of this unique developmental period, by paediatric and adult providers, can help to facilitate transition for those with special health care needs 23.

Barriers for Transition

Advancements in medical treatment and technology have increased the life expectancy of children with special health care needs, most of whom are now living into adulthood. This means a greater number of YSHCN are transferring to adult care, placing more demand on adult specialists to treat individuals with childhood-onset conditions despite minimal knowledge and training with respect to these conditions 1. Youth and families also find themselves coordinating care in a new and more fragmented system, often lacking the skills and support required to navigate the system.  Adult specialists and primary care providers identify the lack of knowledge and/or training they receive regarding childhood onset conditions, their long-term complications, and the surveillance requirements, as contributing to these poor outcomes in patients 1,24.  Further, adult care providers report concern with the inadequate transfer of information and medical documentation 25. Hence, increase in stress and anxiety is reported by all parties involved in the transition of YSHCN from a paediatric to adult care setting.

Additionally, a growing pool of quantitative data reflects poor clinical outcomes post transfer.  For example, prior to initiating a transition program in Manitoba, 40% of young adults with type 1 diabetes dropped out of adult health care 3 resulting in an increased risk of amputation, blindness and even death. Another study found that prior to initiating a transition program in British Columbia kidney transplant patients had worse health outcomes, including a 24 percent incidence of graft loss and/or death within two years of transfer 4. Youth with chronic health conditions may also experience gaps in care during the years immediately following transfer 26. Data show transitioning from paediatric to adult care is associated with decreased clinic attendance 27, impeding the management of a chronic health condition and leading to an increased risk that young adults will not receive care until after complications arise 28.

When youth and their families face barriers and challenges as they transfer from paediatric to adult services, care can be disrupted, and financial costs can be incurred not only by the patient and family but also by the health care system. For example, patients may use health care resources like emergency departments more frequently, and experience increased hospitalizations and longer inpatient stays 29.  

The lack of preparation for and awareness of the differences between paediatric and adult care are identified as common barriers to successful transition 30. The paediatric model of care is usually multidisciplinary and holistic in nature, with attention to psychosocial functioning, development, and navigational support. Paediatric care is also family centred, and parents or caregivers are actively involved in making medical decisions and delivering care. In contrast, in adult health care, the patient is seen as responsible and self-reliant, and expected to advocate for themselves, manage their own health and make informed, independent treatment decisions 31. Young adults who are not prepared for the more autonomous environment of adult health care or who require psychosocial or navigational support often struggle to adapt. One of the reasons YSHCN may lack the personal responsibility and self-managed health care behaviours required in the adult medical system is that parents are expected to be highly involved in their care in paediatrics. This often leads to decreased opportunities for YSHCN to meet with health care providers on their own or practice self-directing their care as they approach the age of transfer 32,33.

In addition, youth and their families often struggle with the transfer to adult care because of their emotional attachment to paediatric health care providers and the grief and loss they experience when these trusting relationships end 34. Fear of the unknown and uncertainty about the future are also commonly experienced by youth and their families during this time 18,35,36

Of note, transition (which includes transfer) is more complex and generally more difficult for youth with medical complexity or who have multi-system issues, co-morbidities and physical and/or cognitive challenges. The difficulties in transition among such youth can be related to fragmentation in care, a decreased level of resources and support available for young adults, and difficulty finding a primary care provider to coordinate their care 18,37. Increasing patient complexity requires parent/caregiver involvement in transition planning and often requires support with navigating the adult health care system 18. Accessing navigational support during the transition to adult health care can be a challenge and additionally risky for this fragile population.

Statement of Need

While a significant amount of qualitative data is available related to patient, parent and health care provider perceptions of barriers to successful transition and related transfer outcomes, there is a lack of research to definitively define and identify transition practice outcomes. This further supports the need for a review of both the published research literature and descriptions of current practices to determine common principles to foster a national Guideline with recommendations for transitioning from paediatric to adult health care.  

Resources

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van Walleghem N, MacDonald C, Dean H. Evaluation of a systems navigator model for transition from pediatric to adult care for young adults with type 1 diabetes. Diabetes Care. 2008;31(8):1529-1530. doi:10.2337/dc07-2247.4. Prestidge C, Romann A, Djurdjev O, Matsuda-Abedini M. Utility and cost of a renal transplant transition clinic. Pediatr Nephrol. 2012;27(2):295-302. doi:10.1007/s00467-011-1980-0.

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13. Smith, A., Poon, C., Stewart, D., Hoogeveen, C., Saewyc, E.  and the MCS. Making the Right Connections: Promoting Positive Mental Health Among BC Youth. Vancouver; 2011.

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16. Kennedy A, Sloman F, Douglass JA, Sawyer SM. Young people with chronic illness: The approach to transition. Intern Med J. 2007;37(8):555-560. doi:10.1111/j.1445-5994.2007.01440.x.

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21. Arnett JJ. Emerging adulthood: A theory of development from the late teens through the twenties. Am Psychol. 2000;55(5):469-480. doi:10.1037//0003-066X.55.5.469.

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23. Colver A, Longwell S. New understanding of adolescent brain development: relevance to transitional healthcare for young people with long term conditions. Arch Dis Child. 2013;98(11):902-907. doi:10.1136/archdischild-2013-303945.

24. Borlot F, Tellez-Zenteno JF, Allen A, Ali A, Snead OC, Andrade DM. Epilepsy transition: Challenges of caring for adults with childhood-onset seizures. Epilepsia. 2014;55(10):1659-1666. doi:10.1111/epi.12752.

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32. Gray WN, Resmini AR, Baker KD, et al. Concerns, barriers, and recommendations to improve transition from pediatric to adult IBD care: Perspectives of patients, parents, and health professionals. Inflamm Bowel Dis. 2015;21(7):1641-1651. doi:http://dx.doi.org/10.1097/MIB.0000000000000419.

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34. DiFazio RL, Harris M, Vessey JA, Glader L, Shanske S. Opportunities lost and found: Experiences of patients with cerebral palsy and their parents transitioning from pediatric to adult healthcare. J Pediatr Rehabil Med. 2014;7(1):17-31. doi:10.3233/PRM-140276.

35. Joly E. Transition to Adulthood for Young People with Medical Complexity: An Integrative Literature Review. J Pediatr Nurs. 2015;30(5):e91-e103. doi:10.1016/j.pedn.2015.05.016.

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37. Okumura MJ, Kerr E a, Cabana MD, Davis MM, Demonner S, Heisler M. Physician views on barriers to primary care for young adults with childhood-onset chronic disease. Pediatrics. 2010;125(4):e748-e754. doi:10.1542/peds.2008-3451.

Created by Lisa Stromquist on 2016/06/30 18:13