- Email: [email protected]
Practical Tools to Monitor and Evaluate Transition
Practical Tools to Monitor and Evaluate Transition Lawrence W. Brown, M.D. The success of transition for children and youth with neurological disorders depends on leadership from the pediatric neurology team to encourage and support the patient’s firm knowledge base of the medical condition, gradual acceptance of self-management skills and confident self-advocacy. While the foundations of effective medical transition have been effectively outlined, the challenge remains to translate from principles to practice. The Child Neurology Foundation has published open source, practical guides which are designed to facilitate the ability to structure and monitor the process through adolescence as well as to insure an effective transfer of care to adult providers. In addition, this article provides one hospital;’s efforts to integrate the transition process into the electronic medical record. Semin Pediatr Neurol 36:100852 © 2020 Elsevier Inc. All rights reserved.
M
edical transition is the process of preparing youth to become autonomous in navigating the healthcare system and in managing their medical condition.1,2 For youth with severe cognitive or physical disabilities, transition may focus on readying both the family and the patient for less than complete adult independence. Medical transfer is an event; following an exchange of pertinent medical information, the patient is discharged from their pediatric provider to a new adult provider. Ttransition should happen across practices and institutions on a similar timeline for all youth. Transfer, however, can be individualized to the practice, the provider’s expertise and the patient. For example, family medicine providers will ready their patient for transition but there is not a need to transfer to a new provider. Because child neurologists are trained in adult neurology and often adult subspecialty care (e.g. neuromuscular, neurogenetics, movement disorders), the transfer may be individualized to the provider, practice and patient readiness. Medical transition is a lengthy process that coincides with adolescence and young adulthood. While few would challenge the importance of the development of skills for the self-management of their medical condition and full adult independence as goals for all youth, it can be
Perelman School of Medicine of the University of Pennsylvania, Children’s Hospital of Philadelphia, Philadelphia, PA. Address reprint requests toLawrence W. Brown, M.D., Perelman School of Medicine of the University of Pennsylvania, Children’s Hospital of Philadelphia, Philadelphia, PA 19104 E-mail: [email protected]
https://doi.org/10.1016/j.spen.2020.100852 1071-9091/11/© 2020 Elsevier Inc. All rights reserved.
difficult to incorporate this process into neurologic care. Obviously, the primary mission of the office visit is to address the neurologic disorder. However, there are many other important educational, emotional, behavioral and social issues that should be addressed in the appointment; these are necessary to lead to optimized quality of life. Furthermore, full self-care and social independence may be an unrealistic goal for many of the patients with severe intellectual and/or physical disabilitiesfollowed by child neurologists Even beyond the time constraints which may preclude adequate attention to such long term issues, transition may not be on the clinician’s radar. It is a relatively new concept which was never taught in training, and there are few guides or shortcuts to help the busy child neurologist3 5. Once the principles of neurology transition were developed and published in 2016, the efforts of the Transition Practice Advisory Committee (TPAC) of the Child Neurology Foundation (CNF) has tried to fill that gap so that transition could be translated into every day practice for all clinicians, patients and caregivers.6 This void is gradually becoming filled in, although the challenges remain overwhelming in a field as diverse as Attention Deficit Hyperactivity Disorder , cerebral palsy, Duchenne dystrophy, migraine, intellectual disability, autism, and epilepsy.7 10 This review will outline the tools developed by TPAC and other currently available approaches to address the goals of transition for neurologic conditions in general or specific disorders in particular, as well as future directions.
1
L.W. Brown
2
Figure 1 Model transition policy.
In 2011, a seminal paper was published by a coalition representing pediatricians, family practitioners and internists which addressed transition for youth from pediatric to adult primary care.11 It has since been updated in 2018.12 Beyond the emphasis on primary care, the authors challenged pediatric specialists to refine the broad generalities to the specific needs of their patients. While other programs (ie, sickle cell disease, cystic fibrosis, and chronic kidney disease) l established early disease-focused transition plans, child neurology was the first specialty to address the needs of all patients rather than a focus on a specific disorder. Based on the pioneering work which proposed 6 core elements of transition and since outlined comprehensively on the GotTransitions website13, the CNF writing committee developed what turned out to be 8 principles of neurologic transit).6 It began with the expectation of transition. Clearly, patients and families need time to prepare for eventual transfer to adult care. Those years would allow time to gradually increase competency in disease knowledge, self-management and advocacy skills as well as time to learn about differences in adult care models and health insurance. For those with cognitive and/or physical disabilities, there would also be time to coordinate with school transition under IDEA (Individuals with Disabilities Education Act). It was proposed that child neurologists should develop a
comprehensive transition plan and post a transition policy in their office, and make it available to all patients so that there are no surprises as the youth approaches the age of transfer. Figure 1 is such a model transition policy. Development of a practical transition plan is an evolving process that needs reassessment during the long process of adolescence with attention to age and intellectual capability. Fortunately, much work has been done to validate relatively simple measures of transition readiness.14 The TRAQ (Transition Readiness Assessment Questionnaire) is not a final examination, but rather an outline of those skills that reflect the goals of full adulthood. Does the patient know his medical diagnosis, his medications, what to do in an emergency, etc. This should not be a onetime assessment, but rather should be regularly reevaluated. Just as academic and social expectations change over the course of the teenage years, the knowledge about and the ability to self-manage one’s medical condition should become more sophisticated over time. It is during the annual review of the patient’s medical condition that other age-appropriate concerns should be addressed. This will include items like puberty, driving and risk-taking behaviors that affect and are affected by the neurologic diagnosis. Figure 2A is a self-care assessment that can not only guide the neurology team to better understand the patient’s
Practical Tools to Monitor and Evaluate
Figure 2 (A) Self-care assessment
3
patient version. (B) self-care assessment
progress in this process, but also give the youth a chance to assess his or her motivation and confidence in self-care. Figure 2B is a comparable form for caregivers to complete that can highlight agreement or dissonance with the patient in terms of abilities or expectations; it can also be completed by caregivers of those patients with IDD or physical disabilities who cannot complete the self-assessment. To simplify and organize the annual process, the CNF developed a Transitions Checklist that covers the evolving process. (Fig. 3). It is always important to involve the youth and his family in the process of transition, as goals may differ and it may be
caregiver version.
easier to coordinate the steps that lead to the individual’s desired outcome. (Fig. 4) There are special considerations for the large minority of patients with intellectual and developmental disabilities (IDD) who are not expected to ever achieve full independence. This includes evaluation of legal competency since there are legal consequences if the adolescent is unlikely to achieve independent financial/medical decision making. While it only becomes an issue upon reaching legal age (18 years), it should be recognized that guardianship, in particular, is often a long and expensive process. Starting such a
L.W. Brown
4
Figure 2 Continued.
discussion in advance can prevent delays and avoid unnecessary emotional challenges of an unprepared family. Those with milder degrees of IDD may benefit from limited power of attorney. This is less overwhelming in cost and impact, but carries similar legal implications and emotional burden of accepting less than full emancipation. Since patients with IDD are also in special education, it is easy to assume that schools will deal with this, but it is essential to recognize that school officials are not responsible for addressing this area. If competency is unclear, families should consider formal neuropsychological evaluation. Legal requirements for guardianship vary widely from state to state and even by county, so there is no single model to recommend. However, it should be noted that the main responsibility for the neurologist is to
make the family aware of the requirement, where, necessary and to point them to appropriate resources to avoid complications. Facilitating self-management knowledge and adult independence is not typically built into appointments with the neurologist. It may come up during office visits when failure to adhere to medication leads to an acute issue such as a teen with epilepsy presenting with a recurrent seizure or a teen with ADHD having an avoidable car accident. How could we improve the ability to take medication regularly? Do we leverage driving privileges as a way to get the youth to comply with the proposed medical regimen? Or is there a better way to engage him like an extended release drug that is only taken once daily? Now that cell phones are universal, it is
Practical Tools to Monitor and Evaluate
5
Figure 2 Continued.
reasonable to have a medical summary including diagnosis, medications, and emergency plans uploaded? There are also phone apps that can record or monitor everything from seizure or headache diary to sleep-wake quantity and alarms to remind him to take medication. If one considers the office visit with the neurologist to include the entire neurology team, it makes it easier to incorporate discussion of these issues with the nurse, medical assistant or transition coordinator. The concept of a transition coordinator may be unrealistic in smaller practices, but it is becoming increasingly available in academic settings and other large health systems. Preparation of a medical summary and/or transition plan for the youth and family can be valuable for all youth. Interestingly, such a document can be especially useful in stable conditions, both in recognition of the adolescent’s emerging autonomy as well as the reality of patient drift. This loss to medical follow-upis more likely to occur when seizures have been well-controlled for an extended period of time or when daily medications are no longer being prescribed for condition like ADHD or migraine. Unfortunately, while many
individuals may do well without medical supervision, there are good reasons to maintain ongoing care with the specialist in order to identify subtle ongoing issues as well as to reinforce preventative measures including adherence to a medical regimen and good life style choices that can minimize the risk of relapse (from sleep deprivation to adequate hydration/ nutrition and avoidance of alcohol and street drugs). One doesn’t want even the well-intentioned youth to ask such questions as a recent patient did: “There is a fraternity party next week; if I am not supposed to drink while taking on medication, how long should I stop my anti-seizure medication before the party?” As the time approaches for completion of the transition process with transfer to adult health care providers, the first step for most should be identification of adult provider(s). An adult primary care provider who provides a “medical home” is important for all, but finding such a welcoming practice is critical for more complex patients. Youth and their family need to be aware that adult neurologists may be willing to treat primary neurologic problems but not necessarily
L.W. Brown
6
Figure 2 Continued.
Practical Tools to Monitor and Evaluate
7
Figure 2 Continued.
L.W. Brown
8
Figure 3 Transition checklist.
co-morbidities which the pediatric neurologist has addressed, particularly neuropsychiatric ones. Whether complicating another condition such as epilepsy or the primary disorder being followed by the child neurologist, conditions such as ADHD, autism and Tourette syndrome are not typically managed by adult neurologists. Such care usually requires an alternative provider typically primary care or psychiatry. Such issues need to be worked out in advance; this part of the transition process should begin at least a year
before expected transfer of care. To facilitate the hand-off, Figure 4 shows a model transition letter. The most important component of the communication between providers is the transition summary. (Fig. 5) This should include all diagnoses, current medications and ancillary treatments, neuro-imaging (including actual CD-ROM), EEG reports, pertinent lab data, as well as a complete list of previous medication trials and why they failed. Accurate documentation, both before and after the transition, can aid
Practical Tools to Monitor and Evaluate
9
Figure 4 Plan of care.
medical professionals in providing the best treatment. To help ensure that all of the parts are in place, the CNF developed a very brief transition summary designed for the final phases of transition. (Fig. 6) Transfer is the final stage of transition, but it is only completed after at least a first health care visit with the adult team. It is important for patient and provider alike to remember that the child neurology team is responsible for confirming transfer acceptance and receipt of the transfer packet plus to offer to serve as a resource as necessary. At that point, other providers can be notified and transfer documented in medical record. It is also important, however, to be sure the transfer is successful. If the patient or family opt not to continue with the provider or are lost to follow-up then the child neurologist should determine why and should use this information to improve quality improvement practices around transition. Clearly, these resources are only a basic set of tools that need to be fine-tuned to the particular needs of the medical practice and integrated into the electronic health care system in order to make the process seamless for reminders to busy practitioners and documentation that the work has been done. Many hospitals and individual practices are beginning to develop such tools. At the Children’s Hospital of Philadelphia there has been a team working on transition tools in
general to alert clinicians to the need to address transition as well as educational material for youth and their family. There is a clinical pathway available to all outlining best practices.15 Specific resources include an electronic alert when a patient turns 14 years old which allows the provider to opt in to open a variety of resources that can be downloaded and printed or incorporated into the after-visit summary. Such tools are both user friendly and take minimal time for the harried and time-restricted neurologists. (Figs. 7,8) At this point billing codes exist for transition, but few if any insurers are currently covering these services. It is unclear what it will take to convince them of the value added so that there will compensation for the additional time and personnel necessary to incorporate transition.16 Hopefully, model programs will soon demonstrate significant advantages for planned transition in terms of improved health outcomes, reduced costs (ED visits and hospitalization), improved treatment adherence and/or patient and caregiver satisfaction. A recent systematic review of transition initiatives outlined the increasing evidence that a structured process can show improvement in adherence to care, disease-specific health measures, quality of life, selfcare skills, satisfaction with care, and health care utilization. Even before that time, there is more than adequate face validity for following the guidelines and introducing these principles into daily practice.
L.W. Brown
10
Figure 5 Medical summary.
Practical Tools to Monitor and Evaluate
11
Figure 5 Continued.
L.W. Brown
12
Figure 5 Continued.
Practical Tools to Monitor and Evaluate
13
Figure 5 Continued.
L.W. Brown
14
Figure 6 Transition packet.
Practical Tools to Monitor and Evaluate
15
Figure 7 Screenshot of best practice advisory.
Figure 8 Screenshot of transition resources in EMR.
16
References 1. Cooley WC, Sagerman PJ: Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 128:182-200, 2011 2. White P, Cooley C: Transitions Clinical Report Authoring Group, American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 142: e20182587, 2018 3. Camfield P, Camfield C: Transition to adult care for children with chronic neurological disorders. Annals of Neurology 69:437-444, 2011 4. Tilton A: Transition of Children with Neurological Disorders. Current Neurology and Neuroscience Reports 18 14:1-7, 2018 5. Campbell F, Biggs K, Aldiss SK, et al: Transition of care for adolescents from paediatric services to adult health services. Cochrane Database Syst Rev 4:CD009794, 2016. https://doi.org/10.1002/14651858. CD009794.pub2. Accessed September 11 ,2020 6. Brown LW, Camfield P, Capers M, et al: The neurologist's role in supporting transition to adult health care: A consensus statement. Neurology 87:835-840, 2016. Accessed September 11 ,2020 7. Nabbout R, Andrade DM, Bahi-Buisson N, et al: Outcome of childhoodonset epilepsy from adolescence to adulthood: Transition issues. Epilepsy & Behavior 69:161-169, 2017 8. Oskoui M: Growing up with cerebral palsy: contemporary challenges of healthcare transition. Canadian Journal of Neurological Sciences 39:2325, 2012
L.W. Brown 9. Williams MD, van der Willigen T, White PH, et al: Improving health care transition and longitudinal care for adolescents and young adults with hydrocephalus: report from the Hydrocephalus Association Transition Summit. J Neurosurg 23. https://doi.org/10.3171/2018.6.JNS188, 2018. Published online November 10. Sawyer SM, Macnee S: Transition to adult health care for adolescents with spina bifida: research issues. Developmental Disabilities Research Reviews 16:60-65, 2010 11. Leeb RT, Danielson ML, Bitsko RH, et al. Support for Transition from Adolescent to Adult Health Care Among Adolescents With and Without Mental, Behavioral, and Developmental Disorders — United States, 2016–2017. MMWR Morb Mortal Wkly Rep 69:1156–1160, 2020. T a g ed P 1 2. Toolkit for Transition: http://www.childneurologyfoundation.org/ transitions 13. Steps to Transition: http://www.gottransition.org 14. Wood DL, Sawicki GS, Miller MD, et al: The Transition Readiness Assessment Questionnaire (TRAQ): its factor structure, reliability, and validity. Acad Pediatr 14:415-422, 2014 Tag edP15. https://www.chop.edu/clinical-pathway/transition-adult-care-outpatient-specialty-care-and-primary-care 16. Cohen B, Tilton A, Busis N, et al: Transition of Care from Child to Adult Neurologists: Implementation and Financial Strategies for Child and Adult Neurologists. Abstract presented at national meeting of the American Academy of Neurology May 2019. Accessed September 11 ,2020
M
edical transition is the process of preparing youth to become autonomous in navigating the healthcare system and in managing their medical condition.1,2 For youth with severe cognitive or physical disabilities, transition may focus on readying both the family and the patient for less than complete adult independence. Medical transfer is an event; following an exchange of pertinent medical information, the patient is discharged from their pediatric provider to a new adult provider. Ttransition should happen across practices and institutions on a similar timeline for all youth. Transfer, however, can be individualized to the practice, the provider’s expertise and the patient. For example, family medicine providers will ready their patient for transition but there is not a need to transfer to a new provider. Because child neurologists are trained in adult neurology and often adult subspecialty care (e.g. neuromuscular, neurogenetics, movement disorders), the transfer may be individualized to the provider, practice and patient readiness. Medical transition is a lengthy process that coincides with adolescence and young adulthood. While few would challenge the importance of the development of skills for the self-management of their medical condition and full adult independence as goals for all youth, it can be
Perelman School of Medicine of the University of Pennsylvania, Children’s Hospital of Philadelphia, Philadelphia, PA. Address reprint requests toLawrence W. Brown, M.D., Perelman School of Medicine of the University of Pennsylvania, Children’s Hospital of Philadelphia, Philadelphia, PA 19104 E-mail: [email protected]
https://doi.org/10.1016/j.spen.2020.100852 1071-9091/11/© 2020 Elsevier Inc. All rights reserved.
difficult to incorporate this process into neurologic care. Obviously, the primary mission of the office visit is to address the neurologic disorder. However, there are many other important educational, emotional, behavioral and social issues that should be addressed in the appointment; these are necessary to lead to optimized quality of life. Furthermore, full self-care and social independence may be an unrealistic goal for many of the patients with severe intellectual and/or physical disabilitiesfollowed by child neurologists Even beyond the time constraints which may preclude adequate attention to such long term issues, transition may not be on the clinician’s radar. It is a relatively new concept which was never taught in training, and there are few guides or shortcuts to help the busy child neurologist3 5. Once the principles of neurology transition were developed and published in 2016, the efforts of the Transition Practice Advisory Committee (TPAC) of the Child Neurology Foundation (CNF) has tried to fill that gap so that transition could be translated into every day practice for all clinicians, patients and caregivers.6 This void is gradually becoming filled in, although the challenges remain overwhelming in a field as diverse as Attention Deficit Hyperactivity Disorder , cerebral palsy, Duchenne dystrophy, migraine, intellectual disability, autism, and epilepsy.7 10 This review will outline the tools developed by TPAC and other currently available approaches to address the goals of transition for neurologic conditions in general or specific disorders in particular, as well as future directions.
1
L.W. Brown
2
Figure 1 Model transition policy.
In 2011, a seminal paper was published by a coalition representing pediatricians, family practitioners and internists which addressed transition for youth from pediatric to adult primary care.11 It has since been updated in 2018.12 Beyond the emphasis on primary care, the authors challenged pediatric specialists to refine the broad generalities to the specific needs of their patients. While other programs (ie, sickle cell disease, cystic fibrosis, and chronic kidney disease) l established early disease-focused transition plans, child neurology was the first specialty to address the needs of all patients rather than a focus on a specific disorder. Based on the pioneering work which proposed 6 core elements of transition and since outlined comprehensively on the GotTransitions website13, the CNF writing committee developed what turned out to be 8 principles of neurologic transit).6 It began with the expectation of transition. Clearly, patients and families need time to prepare for eventual transfer to adult care. Those years would allow time to gradually increase competency in disease knowledge, self-management and advocacy skills as well as time to learn about differences in adult care models and health insurance. For those with cognitive and/or physical disabilities, there would also be time to coordinate with school transition under IDEA (Individuals with Disabilities Education Act). It was proposed that child neurologists should develop a
comprehensive transition plan and post a transition policy in their office, and make it available to all patients so that there are no surprises as the youth approaches the age of transfer. Figure 1 is such a model transition policy. Development of a practical transition plan is an evolving process that needs reassessment during the long process of adolescence with attention to age and intellectual capability. Fortunately, much work has been done to validate relatively simple measures of transition readiness.14 The TRAQ (Transition Readiness Assessment Questionnaire) is not a final examination, but rather an outline of those skills that reflect the goals of full adulthood. Does the patient know his medical diagnosis, his medications, what to do in an emergency, etc. This should not be a onetime assessment, but rather should be regularly reevaluated. Just as academic and social expectations change over the course of the teenage years, the knowledge about and the ability to self-manage one’s medical condition should become more sophisticated over time. It is during the annual review of the patient’s medical condition that other age-appropriate concerns should be addressed. This will include items like puberty, driving and risk-taking behaviors that affect and are affected by the neurologic diagnosis. Figure 2A is a self-care assessment that can not only guide the neurology team to better understand the patient’s
Practical Tools to Monitor and Evaluate
Figure 2 (A) Self-care assessment
3
patient version. (B) self-care assessment
progress in this process, but also give the youth a chance to assess his or her motivation and confidence in self-care. Figure 2B is a comparable form for caregivers to complete that can highlight agreement or dissonance with the patient in terms of abilities or expectations; it can also be completed by caregivers of those patients with IDD or physical disabilities who cannot complete the self-assessment. To simplify and organize the annual process, the CNF developed a Transitions Checklist that covers the evolving process. (Fig. 3). It is always important to involve the youth and his family in the process of transition, as goals may differ and it may be
caregiver version.
easier to coordinate the steps that lead to the individual’s desired outcome. (Fig. 4) There are special considerations for the large minority of patients with intellectual and developmental disabilities (IDD) who are not expected to ever achieve full independence. This includes evaluation of legal competency since there are legal consequences if the adolescent is unlikely to achieve independent financial/medical decision making. While it only becomes an issue upon reaching legal age (18 years), it should be recognized that guardianship, in particular, is often a long and expensive process. Starting such a
L.W. Brown
4
Figure 2 Continued.
discussion in advance can prevent delays and avoid unnecessary emotional challenges of an unprepared family. Those with milder degrees of IDD may benefit from limited power of attorney. This is less overwhelming in cost and impact, but carries similar legal implications and emotional burden of accepting less than full emancipation. Since patients with IDD are also in special education, it is easy to assume that schools will deal with this, but it is essential to recognize that school officials are not responsible for addressing this area. If competency is unclear, families should consider formal neuropsychological evaluation. Legal requirements for guardianship vary widely from state to state and even by county, so there is no single model to recommend. However, it should be noted that the main responsibility for the neurologist is to
make the family aware of the requirement, where, necessary and to point them to appropriate resources to avoid complications. Facilitating self-management knowledge and adult independence is not typically built into appointments with the neurologist. It may come up during office visits when failure to adhere to medication leads to an acute issue such as a teen with epilepsy presenting with a recurrent seizure or a teen with ADHD having an avoidable car accident. How could we improve the ability to take medication regularly? Do we leverage driving privileges as a way to get the youth to comply with the proposed medical regimen? Or is there a better way to engage him like an extended release drug that is only taken once daily? Now that cell phones are universal, it is
Practical Tools to Monitor and Evaluate
5
Figure 2 Continued.
reasonable to have a medical summary including diagnosis, medications, and emergency plans uploaded? There are also phone apps that can record or monitor everything from seizure or headache diary to sleep-wake quantity and alarms to remind him to take medication. If one considers the office visit with the neurologist to include the entire neurology team, it makes it easier to incorporate discussion of these issues with the nurse, medical assistant or transition coordinator. The concept of a transition coordinator may be unrealistic in smaller practices, but it is becoming increasingly available in academic settings and other large health systems. Preparation of a medical summary and/or transition plan for the youth and family can be valuable for all youth. Interestingly, such a document can be especially useful in stable conditions, both in recognition of the adolescent’s emerging autonomy as well as the reality of patient drift. This loss to medical follow-upis more likely to occur when seizures have been well-controlled for an extended period of time or when daily medications are no longer being prescribed for condition like ADHD or migraine. Unfortunately, while many
individuals may do well without medical supervision, there are good reasons to maintain ongoing care with the specialist in order to identify subtle ongoing issues as well as to reinforce preventative measures including adherence to a medical regimen and good life style choices that can minimize the risk of relapse (from sleep deprivation to adequate hydration/ nutrition and avoidance of alcohol and street drugs). One doesn’t want even the well-intentioned youth to ask such questions as a recent patient did: “There is a fraternity party next week; if I am not supposed to drink while taking on medication, how long should I stop my anti-seizure medication before the party?” As the time approaches for completion of the transition process with transfer to adult health care providers, the first step for most should be identification of adult provider(s). An adult primary care provider who provides a “medical home” is important for all, but finding such a welcoming practice is critical for more complex patients. Youth and their family need to be aware that adult neurologists may be willing to treat primary neurologic problems but not necessarily
L.W. Brown
6
Figure 2 Continued.
Practical Tools to Monitor and Evaluate
7
Figure 2 Continued.
L.W. Brown
8
Figure 3 Transition checklist.
co-morbidities which the pediatric neurologist has addressed, particularly neuropsychiatric ones. Whether complicating another condition such as epilepsy or the primary disorder being followed by the child neurologist, conditions such as ADHD, autism and Tourette syndrome are not typically managed by adult neurologists. Such care usually requires an alternative provider typically primary care or psychiatry. Such issues need to be worked out in advance; this part of the transition process should begin at least a year
before expected transfer of care. To facilitate the hand-off, Figure 4 shows a model transition letter. The most important component of the communication between providers is the transition summary. (Fig. 5) This should include all diagnoses, current medications and ancillary treatments, neuro-imaging (including actual CD-ROM), EEG reports, pertinent lab data, as well as a complete list of previous medication trials and why they failed. Accurate documentation, both before and after the transition, can aid
Practical Tools to Monitor and Evaluate
9
Figure 4 Plan of care.
medical professionals in providing the best treatment. To help ensure that all of the parts are in place, the CNF developed a very brief transition summary designed for the final phases of transition. (Fig. 6) Transfer is the final stage of transition, but it is only completed after at least a first health care visit with the adult team. It is important for patient and provider alike to remember that the child neurology team is responsible for confirming transfer acceptance and receipt of the transfer packet plus to offer to serve as a resource as necessary. At that point, other providers can be notified and transfer documented in medical record. It is also important, however, to be sure the transfer is successful. If the patient or family opt not to continue with the provider or are lost to follow-up then the child neurologist should determine why and should use this information to improve quality improvement practices around transition. Clearly, these resources are only a basic set of tools that need to be fine-tuned to the particular needs of the medical practice and integrated into the electronic health care system in order to make the process seamless for reminders to busy practitioners and documentation that the work has been done. Many hospitals and individual practices are beginning to develop such tools. At the Children’s Hospital of Philadelphia there has been a team working on transition tools in
general to alert clinicians to the need to address transition as well as educational material for youth and their family. There is a clinical pathway available to all outlining best practices.15 Specific resources include an electronic alert when a patient turns 14 years old which allows the provider to opt in to open a variety of resources that can be downloaded and printed or incorporated into the after-visit summary. Such tools are both user friendly and take minimal time for the harried and time-restricted neurologists. (Figs. 7,8) At this point billing codes exist for transition, but few if any insurers are currently covering these services. It is unclear what it will take to convince them of the value added so that there will compensation for the additional time and personnel necessary to incorporate transition.16 Hopefully, model programs will soon demonstrate significant advantages for planned transition in terms of improved health outcomes, reduced costs (ED visits and hospitalization), improved treatment adherence and/or patient and caregiver satisfaction. A recent systematic review of transition initiatives outlined the increasing evidence that a structured process can show improvement in adherence to care, disease-specific health measures, quality of life, selfcare skills, satisfaction with care, and health care utilization. Even before that time, there is more than adequate face validity for following the guidelines and introducing these principles into daily practice.
L.W. Brown
10
Figure 5 Medical summary.
Practical Tools to Monitor and Evaluate
11
Figure 5 Continued.
L.W. Brown
12
Figure 5 Continued.
Practical Tools to Monitor and Evaluate
13
Figure 5 Continued.
L.W. Brown
14
Figure 6 Transition packet.
Practical Tools to Monitor and Evaluate
15
Figure 7 Screenshot of best practice advisory.
Figure 8 Screenshot of transition resources in EMR.
16
References 1. Cooley WC, Sagerman PJ: Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 128:182-200, 2011 2. White P, Cooley C: Transitions Clinical Report Authoring Group, American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 142: e20182587, 2018 3. Camfield P, Camfield C: Transition to adult care for children with chronic neurological disorders. Annals of Neurology 69:437-444, 2011 4. Tilton A: Transition of Children with Neurological Disorders. Current Neurology and Neuroscience Reports 18 14:1-7, 2018 5. Campbell F, Biggs K, Aldiss SK, et al: Transition of care for adolescents from paediatric services to adult health services. Cochrane Database Syst Rev 4:CD009794, 2016. https://doi.org/10.1002/14651858. CD009794.pub2. Accessed September 11 ,2020 6. Brown LW, Camfield P, Capers M, et al: The neurologist's role in supporting transition to adult health care: A consensus statement. Neurology 87:835-840, 2016. Accessed September 11 ,2020 7. Nabbout R, Andrade DM, Bahi-Buisson N, et al: Outcome of childhoodonset epilepsy from adolescence to adulthood: Transition issues. Epilepsy & Behavior 69:161-169, 2017 8. Oskoui M: Growing up with cerebral palsy: contemporary challenges of healthcare transition. Canadian Journal of Neurological Sciences 39:2325, 2012
L.W. Brown 9. Williams MD, van der Willigen T, White PH, et al: Improving health care transition and longitudinal care for adolescents and young adults with hydrocephalus: report from the Hydrocephalus Association Transition Summit. J Neurosurg 23. https://doi.org/10.3171/2018.6.JNS188, 2018. Published online November 10. Sawyer SM, Macnee S: Transition to adult health care for adolescents with spina bifida: research issues. Developmental Disabilities Research Reviews 16:60-65, 2010 11. Leeb RT, Danielson ML, Bitsko RH, et al. Support for Transition from Adolescent to Adult Health Care Among Adolescents With and Without Mental, Behavioral, and Developmental Disorders — United States, 2016–2017. MMWR Morb Mortal Wkly Rep 69:1156–1160, 2020. T a g ed P 1 2. Toolkit for Transition: http://www.childneurologyfoundation.org/ transitions 13. Steps to Transition: http://www.gottransition.org 14. Wood DL, Sawicki GS, Miller MD, et al: The Transition Readiness Assessment Questionnaire (TRAQ): its factor structure, reliability, and validity. Acad Pediatr 14:415-422, 2014 Tag edP15. https://www.chop.edu/clinical-pathway/transition-adult-care-outpatient-specialty-care-and-primary-care 16. Cohen B, Tilton A, Busis N, et al: Transition of Care from Child to Adult Neurologists: Implementation and Financial Strategies for Child and Adult Neurologists. Abstract presented at national meeting of the American Academy of Neurology May 2019. Accessed September 11 ,2020