REVIEW CLINICAL PRACTICE Transitional Care for Young People with Movement Disorders: Consensus-Based Recommendations from the MDS Task Force on Pediatrics Tamara Pringsheim, MD,1,* Amit Batla, MD, FRCP,2 Ali Shalash, MD, PhD,3 Jitendra Kumar Sahu, DM,4 Carlos Cosentino, MD,5 Darius Ebrahimi-Fakhari, MD, PhD,6 Jennifer Friedman, MD,7 Jean-Pierre Lin, MBChB, PhD,8 Jonathan Mink, MD, PhD,9 Alexander Munchau, MD,10 Daniela Munoz, MD,11 Nardo Nardocci, MD,12 Belen Perez-Dueñas, MD, PhD,13 Zomer Sardar, MBBS, FCPS,14 Chahnez Triki, MD,15 Hilla Ben-Pazi, MD,16 Laura Silveira-Moriyama, MD, PhD,17 Monica Troncoso-Schifferli, MD,11 Kyoko Hoshino, MD,18 Russell C. Dale, MD, PhD,19 Victor S.C. Fung, PhD, FRACP,20 Manju A. Kurian, MBBChir, PhD,21 and Emmanuel Roze, MD, PhD22 Abstract: Background: Background The International Parkinson and Movement Disorders Society (MDS) set up a working group on pediatric movement disorders (MDS Task Force on Pediatrics) to generate recommendations to guide the transition process from pediatrics to adult health care systems in patients with childhood-onset movement disorders. Methods To develop recommendations for transitional care for childhood onset movement disorders, we used Methods: a formal consensus development process, using a multi-round, web-based Delphi survey. The Delphi survey was based on the results of the scoping review of the literature and the results of a survey of MDS members on transition practices. Through iterative discussions, we generated the recommendations included in the survey. The MDS Task Force on Pediatrics were the voting members for the Delphi survey. The task force members comprise 23 child and adult neurologists with expertise in the field of movement disorders and from all regions of the world. Results Fifteen recommendations divided across four different areas were made pertaining to: (1) team Results: composition and structure, (2) planning and readiness, (3) goals of care, and (4) administration and research. All recommendations achieved consensus with a median score of 7 or greater. 1 Department of Clinical Neurosciences, Psychiatry, Pediatrics and Community Health Sciences, University of Calgary, Calgary, AB, Canada; 2Department of Clinical and Movement Neuroscience, UCL Queen Square Institute of Neurology, London, UK; 3Department of Neurology, Faculty of medicine, Ain Shams Univeristy, Cairo, Egypt; 4Pediatric Neurology Unit, Postgraduate Institute of Medical Education and Research, Chandigarh, India; 5Department of Neurodegenerative Diseases, Instituto Nacional de Ciencias Neurologicas and School of Medicine, Universidad Nacional Mayor de San Marcos, Lima, Peru; 6Department of Neurology, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA; 7Departments of Neurosciences and Pediatrics, UC San Diego, San Diego, CA, USA; 8Children’s Neurosciences, Complex Motor Disorders Service (CMDS), Evelina London Children’s Hospital, Guy’s and St Thomas’ NHS Foundation Trust (GSTT), and Women and Children’s Health Institute Faculty of Life Sciences & Medicine, Kings Health Partners, King’s College London, London, UK; 9Department of Neurology, University of Rochester, Rochester, NY, USA; 10Institute of Systems Motor Science, University of Lübeck, Lübeck, Germany; 11Department of Paediatric Neurology, San Borja Arriaran Hospital. University of Chile, Santiago, Chile; 12Pediatric Neuroscience Department, Fondazione IRCCS Istituto Neurologico “C Besta”, Milan, Italy; 13Department of Pediatric Neurology, Hospital Universitari Vall d’Hebron, Universitat Autònoma de Barcelona. Centre for Biomedical Research of Rare Diseases (CIBERER), ISCIII, Madrid, Spain; 14FCPS, Department of Neurology, Columbia University Irving Medical Center/New York Presbyterian Hospital, New York, NY, USA; 15Department of child neurology, Hedi Chaker Hospital, LR10ES15, Sfax Medical School, University of Sfax Tunisia, Sfax, Tunisia; 16Movement Disorders Clinic, Assuta Ashdod, Ahdod, Israel; 17Department of Neurology, University of Campinas (UNICAMP), Campinas, Brazil; 18Segawa Memorial Neurological Clinic for Children, Tokyo, Japan; 19Children’s Hospital at Westmead Clinical School, University of Sydney, Sydney, NSW, Australia; 20Movement Disorders Unit, Department of Neurology, Westmead Hospital & Sydney Medical School, University of Sydney, Sydney, NSW, Australia; 21Developmental Neurosciences, Zayed Centre for Research into Rare Disease in Children, GOS-Institute of Child Health, UCL, London, UK; 22Sorbonne University, Paris Brain Institute, Assistance Publique—Hôpitaux de Paris, DMU Neurosciences, Paris, France *Correspondence to: Tamara Pringsheim, Department of Clinical Neurosciences, Psychiatry, Pediatrics and Community Health Sciences, University of Calgary, AB, Canada. E-mail: tmprings@ucalgary.ca This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. Received 12 December 2022; revised 25 February 2023; accepted 5 March 2023. Published online 4 April 2023 in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/mdc3.13728 MOVEMENT DISORDERS CLINICAL PRACTICE 2023; 10(5): 748–755. doi: 10.1002/mdc3.13728 748 © 2023 The Authors. Movement Disorders Clinical Practice published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society. PRINGSHEIM T. ET AL. REVIEW Conclusion Recommendations on providing transitional care for patients with childhood onset movement Conclusion: disorders are provided. Nevertheless several challenges remain in the implementation of these recommendations, related to health infrastructure and the distribution of health resources, and the availability of knowledgeable and interested practitioners. Research on the influence of transitional care programs on outcomes in childhood onset movement disorders is much needed. Pediatric movement disorders (PMDs) is a growing sub- The survey was disseminated to task force members using the specialty, encompassing a variety of mostly hyperkinetic disor- Survey Monkey platform. All recommendations were supported ders. It is a diverse scope of practice, with the most common by rationale statements which provide supporting information symptoms encountered including tics, stereotypies and tremor, for recommendations and appropriate citations. All recommen- with a growing list of recently identified genetic and acquired dations were rated by panelists on a 9-point Likert scale, with a disorders producing overlapping symptoms of paroxysmal or score of 1 representing “inappropriate” and 9 representing progressive dystonia, chorea, myoclonus, ataxia, spastic para- “appropriate.” The research team reviewed responses, calculating paresis and Parkinsonism. Children with PMDs are increasingly median results and incorporating narrative comments provided seen by subspecialists in movement disorders given their com- by panelists. Our established threshold for recommendation plexity, who may now offer a number of specialized therapies. appropriateness was a median score of ≥7, and inappropriate if Children with PMDs are surviving into adulthood and ulti- the median score was ≤5. If the median score fell between 5 and mately require transition to adult services. In general, adoles- 7, the recommendation was discussed for exclusion or revision cents transitioning to adult healthcare have a greater risk of with revoting. The recommendation was determined to generate poor health outcomes. Transition comes with challenges, due disagreement if one third of the participants rated the item <5. to the nature of pediatric compared to adult services. Pediatric All voting members of the Delphi survey could provide written services are typically family focused, with multidisciplinary comments so that statements could be altered if consensus was teams providing care in a single setting, compared to the more not achieved. individual focus of adult care, with non-physician services often provided in a less integrated fashion. In recognition of the chal- lenges in providing care to this population, the International Parkinson and Movement Disorders Society (MDS) set up a Results working group (MDS Task Force on Pediatrics) to generate All 23 members of the MDS Task Force on Pediatrics were recommendations on the transition process to adult health care invited to participate in the anonymous Delphi process, of in patients with PMDs. whom 19 completed the survey. Panel members were from all five continents and represented 17 countries. Table 1 presents the median and interquartile ranges for the recommendations Methods in the first round of the Delphi process. As all recommenda- tions achieved consensus with a median score of 7 or greater, We used a formal consensus development process, using a multi- and no recommendations had more than one third of partici- round, web-based Delphi survey. The Delphi method uses an pants scoring less than 5, a second round of voting was not anonymous voting system allowing an equal opportunity to required. express ideas and opinions. It provides more time to reflect on questions and make changes, using an iterative process that allows recommendations to be refined. The Delphi survey was developed in English by five of the authors (T.P., E.R., J.S., A.B., A.S.) based on the results of our Recommendations scoping review1 on this topic, and the survey of MDS members on transition practices.2 The scoping review identified transi- Transitional Care: Team tional care issues and transitional care models for youth with Composition and Structure chronic neurological conditions. Using this information as the Recommendation 1.1 foundation, we generated the recommendations included in the survey through iterative discussions among the five authors. The A transitional care service for young people with movement dis- MDS Task Force on Pediatrics were the voting members for the orders should comprise a multidisciplinary team. Based on per- Delphi survey. The task force members comprise 23 child and sonalized transition planning, this team may be composed of adult neurologists with expertise in the field of movement disor- both pediatric and adult care providers, including a transition ders and from all regions of the world. coordinator, physicians, social workers, nurses, physical, MOVEMENT DISORDERS CLINICAL PRACTICE 2023; 10(5): 748–755. doi: 10.1002/mdc3.13728 749 REVIEW TRANSITIONAL CARE FOR YOUNG PEOPLE WITH MD TABLE 1 Median and interquartile ranges for the recommendations young adults, with pediatric hospitals providing more services in the Delphi process and resources.4 Inadequate care and a disparate health care envi- Median Score and ronment and culture was described in the adult system.5–7 If the Recommendation Interquartile Range adult lead of transition service had better awareness and knowl- edge of transitional care issues in people with movement disor- 1.1 9 (7.75, 9) ders, this can help minimize the disparity in the healthcare 1.2 9 (8, 9) environment during the transition process. 1.3 9 (8, 9) 1.4 9 (7, 9) Recommendation 1.3 2.1 9 (8, 9) A transition coordinator should be assigned to each transitioning patient, who should take charge of documentation, sharing med- 2.2 9 (8, 9) ical records and communication with patients and families. 2.3 8 (7.25, 9) 3.1 9 (8, 9) Rationale for Recommendation 1.3 3.2 9 (8, 9) Communication and documentation can be challenging in com- 3.3 9 (8, 9) plex cases. A transition coordinator can help keep communica- 3.4 8 (7, 9) tion focused and ensure documentation. Usually a dedicated transition nurse can take this role. The survey results showed that 3.5 9 (9, 9) some teams already used this approach and some other studies 4.1 9 (8, 9) have highlighted the importance of transition coordinators in 4.2 9 (8, 9) improving health outcomes. The beneficial features of transition services include a written transition plan, appropriate parental 4.3 9 (8, 9) involvement, and involvement of a transition coordinator.8 occupational and mental health therapists and other allied health Recommendation 1.4 professionals. The transition service can look at adopting examples from best practice in other medical conditions like diabetes and neurologi- Rationale for Recommendation 1.1 cal disorders such as epilepsy that have been providing transition services within the same country, region or hospital. Multidisciplinary team transition models have been successfully applied for children with chronic neurological conditions includ- ing movement disorders. The survey conducted by the MDS Rationale for Recommendation 1.4 task force showed that current transition services follow a multi- There is very limited evidence on running a successful transition disciplinary approach. service for movement disorders, however, some successful models of transitional care in other neurology specialties exist Recommendation 1.2 and these have already identified local and global issues. Liaising with local teams running transition services for other conditions The adult physician assuming care of the transitioning patient might give better insights and best practice examples. should have necessary knowledge about the young person, expertise in neurological disorders starting in infancy/childhood and be attentive to the comprehensive care needs of young Transitional Care: Planning and adults. They should have awareness and knowledge of transi- Readiness tional care issues including intellectual disability and ability to participate in treatment planning, especially in people with Recommendation 2.1 movement disorders. A transitional planning period should occur, during which time transition readiness is assessed, the young person receives training in health self-efficacy, and a formal transition plan is developed Rationale for Recommendation 1.2 and documented. In general, adult physicians are reported as having poor knowl- edge of neurological disease starting in childhood, including Rationale for Recommendation 2.1 intellectual disability3 and cerebral palsy.4 This may not apply to all neurologists specializing in movement disorders. Pediatricians Inadequate preparation of patients transitioning to adult services are considered more attentive to the often complex care needs of has been highlighted by several studies of youth with complex 750 MOVEMENT DISORDERS CLINICAL PRACTICE 2023; 10(5): 748–755. doi: 10.1002/mdc3.13728 PRINGSHEIM T. ET AL. REVIEW neurological conditions, intellectual impairment, and cerebral and experienced an abrupt termination of pediatric services with- palsy.3,4,6 A study of health outcomes of young people with dia- out appropriate assurance of future care in the adult setting. Par- betes, autism and cerebral palsy found that those with greater ents perceived very limited coordination of the transition and health self-efficacy were more satisfied with services related to lack of communication among health care professionals in the transition from pediatric to adult health care.9 Parents of children months before their child turned 18.6 Parents of children with with intellectual disability recommend the use of a transition intellectual disability report that although their child is the center planning document which includes all necessary steps for the of the transition, the parents experience the effects of the transi- transition, including legal and financial steps, and contact details tion and its different stages. However, they are often ignored in for all involved professionals and organizations.3 the transition process.3 Young adults with intellectual impair- ment require significant guidance from their parents for decision making related to their care, and this reliance on parents is Recommendation 2.2 unlikely to change over time. In a study of young people with The timing and approach of transition should be flexible and diabetes, autism and cerebral palsy, there were significant positive made collaboratively by the pediatric care providers, transitional associations between appropriate parental involvement (but with care team, patient and family. Evaluation of transition readiness changing responsibilities) and satisfaction with services during the should factor in the individual needs of the patient and their transition from pediatric to adult health services, as well as overall caregivers, their disease stage, and the presence of cognitive and wellbeing during this period. This study also found that meeting behavioral problems, as well as any systemic disease features, the adult care team before transfer was significantly associated rather than be based on age, per se. with autonomy in healthcare appointments.9 Rationale for Recommendation 2.2 Transitional Care: Goals of Care A qualitative study with parents of children with intellectual dis- Recommendation 3.1 abilities found that the decision to transition from pediatric to adult care at 18 years of age felt arbitrary to parents, as their Every youth with a movement disorder should have a planned young adult would always remain a “child” due to their intellec- transition of care with the goal to improve individual health out- tual impairment. Parents perceived that the instability of their comes and avoid adverse health or psychological outcomes dur- young adults’ health status was not truly appreciated by the pedi- ing this critical period. atric services during the process of transition, which in several cases lead to the need for acute hospitalization in the adult set- Rationale for Recommendation 3.1 ting.6 Young people with cognitive and behavioral conditions experience greater challenges in preparing for transition to adult Most children with chronic movement disorders are regularly health care. In a study of youth with type 1 diabetes, Turner seen by a pediatric neurologist or a pediatrician and allied special- syndrome, spina bifida and autism, significant differences in tran- ties. Integration into the adult healthcare system can be challeng- sition readiness were found according to diagnosis. While youth ing, making a planned and standardized approach to transition with type 1 diabetes did not differ from youth without chronic desirable. Insufficient preparation, poor anticipation and lack of a medical conditions, youth with Turner syndrome, spina bifida formalized transition plan have been identified as factors and autism had significantly lower transition readiness, with preventing an optimal transition in patients with chronic neuro- youth with autism having the lowest transition readiness scores. logical disorders.6,7,11 Transition planning instead was reported as Higher transition readiness scores were observed in youth who a potential solution to improve the transition process3,8 and early were older, lived in two parent households, and had higher levels transition preparation and planning has been recommended by a of health literacy.10 neurology transition consensus panel.12 Recommendation 2.3 Recommendation 3.2a A dedicated transition planning visit, including the patient, their The transitional care service should address the medical, cogni- family and the transitional care team should occur pre-transition. tive, rehabilitation, emotional, and social needs of the The case history, problem list, transitional goals and transitional transitioning youth and their family. plan should be first reviewed in depth during the transition plan- ning visit and again during the period of overlapping care. Recommendation 3.2b Rationale for Recommendation 2.3 Issues to be discussed during the transition process should ideally comprise the following, with some individual tailoring: Parents of children with chronic complex neurological condi- tions with intellectual impairment report that they received little 1. adolescent’s neurological condition and any co-occurring preparation for the transition from pediatric to adult health care medical or psychiatric conditions. MOVEMENT DISORDERS CLINICAL PRACTICE 2023; 10(5): 748–755. doi: 10.1002/mdc3.13728 751 REVIEW TRANSITIONAL CARE FOR YOUNG PEOPLE WITH MD 2. current medications, level of benefit in the patient and mandatory to ensure continuity of care and adequate continua- potential side effects. tion of drugs. It is therefore crucial to guide youth towards more 3. signs and symptoms of concern. autonomy for health-related issues taking into account the indi- 4. disease related comorbidities. vidual intellectual and behavioral abilities. 5. general health issues and wellbeing. 6. young person’s knowledge of their disease and medication. 7. genetic counseling (where relevant). Recommendation 3.4 8. effect of puberty on disease and medical treatment. Emotional support should be provided to the patient and their 9. sexuality, pregnancy (where appropriate) and reproductive family during the transition process by the transitional care team, implications of the condition. including preparing and accompanying patients to their first visit 10. alcohol, smoking and substance use. in the adult setting 11. emotional/psychological concerns. 12. perceived stigmatization. 13. change in family dynamics with increasing patient maturity. Rationale for Recommendation 3.4 14. vocational issues. Transition of care is a time of uncertainty associated with a 15. driving. heightened emotional response, whereas emotional needs are 16. ability to consent for medical treatment, legal and financial often neglected during the transition process.4,6 A significant transactions. proportion of patients with ADHD and their parents reported a need to have someone to speak with regarding their emotional needs during the process of transition.17 Transition-related factors Rationale for Recommendation 3.2 that could influence the emotional well-being of patients with (including 2a and 2b) neurological disorders during this period can comprise difficulties with the practical aspects of transition, a sense of abandonment, From a developmental point of view, youth age implies signifi- the combination of sadness at leaving a system with familiar cant changes in various domains of life.13 Childhood movement health professionals and trusted relationships and fear of the disorders encompass heterogeneous conditions with various com- unknown.4,6,17,18 Special attention should thus be paid to the orbidities14,15 implying distinct needs of the youth and her/his emotional support of the youth and parents during the transition family, not only for medical care and rehabilitation but also in to the adult care system. the domains of cognition, emotional and social well-being. These needs should be addressed in a holistic manner and some important issues are often not addressed during the transition Recommendation 3.5 process, such as addiction problems, driving, sexuality or preg- Both the pediatric and adult care providers should use the transi- nancy/reproductive issues. A checklist of key issues to be poten- tion process as an opportunity to reappraise the diagnosis and tially addressed depending on each youth situation would thus treatment of the patient help the transition teams. Rationale for Recommendation 3.5 Recommendation 3.3 For many patients presenting in early childhood, the diagnostic Special attention should be paid to guide the transitioning patient odyssey may have occurred several years prior to transition, and towards more autonomy (where possible) for health-related thus re-appraising the diagnosis based on interim scientific issues, including self-management training which takes into advances is important to ensure diagnostic accuracy. A study account the intellectual and behavioral functioning of each focused on patients with a childhood-onset movement disorder patient. demonstrated that a multidisciplinary approach involving a team with a pediatrician, a movement disorders specialist, a metabolic disorder expert and a geneticist can promote a high diagnostic Rationale for Recommendation 3.3 yield (34%) in formerly undiagnosed patients and also result in Youth with chronic neurological disorders tend to not have the treatment adjustment with positive consequences in more than level of independence and knowledge about their disease that is 40% of patients.19 In a study about a transitional care clinic in expected in adult settings, as clearly identified in patients with patients with childhood-onset epilepsy, diagnosis was revised in epilepsy.16 In addition, cognitive deficits and behavioral distur- 12% of patients and 55% received adjustment of the anti- bances represent major brakes on the development of transition epileptic medication.20 The core medical component of transi- readiness.10 Autonomy is considered as a major ethical principle tion process includes a review of history, examination findings in adult health care and can influence the care trajectory. With along with investigations and discussion in a multidisciplinary moving towards adulthood, the focus of the health care environ- manner. Therefore, it offers a unique opportunity to reappraise ment should thus gradually move from a family-based approach the diagnosis and treatment of the youth with childhood-onset towards more autonomy in adult health care system. It is movement disorders. 752 MOVEMENT DISORDERS CLINICAL PRACTICE 2023; 10(5): 748–755. doi: 10.1002/mdc3.13728 PRINGSHEIM T. ET AL. REVIEW Transitional Care: Administration there is limited data on the outcome of transition programs and their cost-effectiveness. Therefore, more studies are required to and Research determine the needs and outcomes specific to this clinical Recommendation 4.1 population. Financial resources for the transition care services should be pro- vided for well-organized continuous and satisfactory transi- tional care Discussion Rationale for Recommendation 4.1 When a migrant has no alternative but to leave his country, he/she can make substantial efforts to get ready for the journey, Establishing transition care services requires resources to cover but the true adventure actually starts when setting foot on land costs of services setting and documentation, funded therapy and in the new country. Adolescents with PMDs are migrants of care fees for clinicians, nurses, social workers. Lack of resources was and the transition to adult medical care is a major milestone. identified as a barrier to successful and satisfactory transition Adult movement disorders departments should implement coor- care.8,11,21,22 Moreover, lack of resources was more apparent in dinated transitional care, considering the growing number of adult services, in contrast to pediatric hospitals and facilities.4,22 patients and the specific issues related to this age group and the Therefore, additional resources are required to establish continu- transition of care. Based on our scoping review1 and interna- ous and satisfactory transition care services. tional survey2 on transition practices and transition issues, we have proposed recommendations to help implement such a care program. Recommendation 4.2 Our approach was based on data from the literature and field There should be a framework for assessment, feedback, and qual- knowledge to optimize and standardize translational care prac- ity improvement for transitional care services tice. We use a structured expert consensus method, which is rec- ommended to address complex healthcare issues and limits the influence of individual bias. The level of agreement for all rec- Rationale for Recommendation 4.2 ommendations was very high. Nevertheless, some limitations Previous studies reported inconsistent practices and lack of transi- exist. First, consensus methods inherently contain risk of bias in tion plans, protocols, and outcomes, implying the need for eval- the selection of panel participants. Our panel did not include uation of these transition care programs. Evaluation of transition people with lived experience with PMDs. However, our panel practices identifies the challenges, limitations, outcomes and satis- involved physicians from five continents with a variety of cul- faction of patients and their families.11,20,22,23 Evaluating patient- tural origins and living standards. Many of the studies in the related outcomes including, health, educational, and vocational scoping review were qualitative studies with people undergoing issues reflects the effectiveness of transition services,24 and pro- transition, allowing their perspectives to be incorporated. Sec- vides an important metric in optimizing transitional care models. ond, the needs of the target population have been poorly studied Additionally, regular assessment of transition care is essential to and this might have hampered our abilities to properly anticipate evaluate and adapt services to sustain family satisfaction and com- the optimal care pathway. Third, during the expert discussions, it munity provider satisfaction.25 Therefore, assessment of transition appeared that, depending on the country, accessibility to transi- care services is warranted to evaluate patients’ outcome, cost- tional care programs can be restricted because resources or infra- effectiveness, limitations, difficulties, and inappropriate practices. structure are limited and/or because public or private health insurance does not cover related costs. Fourth, beyond the issue of optimization and standardization of transitional care practice, a Recommendation 4.3 major problem is likely the insufficient number of neurologists Research is needed and should be encouraged to evaluate the adequately trained to take care of young adults with PMDs. This different aspects of transitional issues and the outcome and cost is possibly due to lack of interest, insufficient opportunity for effectiveness of transitional care programs in different populations training, and the lack of training standards in this area. Finally, all over the world while the international survey we used as foundational informa- tion was sent to all members of the MDS, only 2% participated. During the process, expert discussion revealed shortcomings in Rationale for Recommendation 4.3 knowledge in the field and opened avenues for future research Our recent review showed only 56 articles discussed transition and education. (1) Studies are mandatory to clarify the specific care issues, and only two articles included patients with move- needs and patient-desired outcomes of youth with PMDs. We ment disorders. Most of these studies were from the USA, UK need further insight into what patients and families experience as and Canada. Moreover, most transitional care studies were cross good care, and what kind of harms are engendered when that sectional with limited subjects’ number.1 Few studies reported standard is not met. We suggest focusing on motor disability and on care models and evaluated their outcome.25–27 Additionally, psychiatric comorbidities, which are frequently encountered in MOVEMENT DISORDERS CLINICAL PRACTICE 2023; 10(5): 748–755. doi: 10.1002/mdc3.13728 753 REVIEW TRANSITIONAL CARE FOR YOUNG PEOPLE WITH MD this context. Likewise, the level of perceived stigmatization and this work. The authors confirm that patient consent was not body image concerns should be investigated as they likely repre- required for this work. We confirm that we have read the sent a significant determinant of quality of life in young people Journal’s position on issues involved in ethical publication and with visible movement disorders.28 (2) The influence of transi- affirm that this work is consistent with those guidelines. tional care programs on population health and individuals is diffi- Funding Sources and Conflicts of Interest: This study was cult to evaluate because we need validated tools to measure it funded by the International Parkinson’s and Movement Disor- and a definition of successful transition in movement disorders. ders Society. The authors have no financial disclosures or con- This will allow proper investigation of cost-effectiveness of trans- flicts of interest concerning the research related to the lational care programs. (3) The success of transition depends on manuscript. the availability and efficacy of the transition care model but also Financial Disclosures for Previous 12 months: Tamara Pri- on the capacity of patients and families to manage this period ngsheim has received research support paid to her institution and the related constraints. More information is needed to deter- from the Public Health Agency of Canada, Alberta Health and mine the individual and community factors influencing manage- the Owerko Center of Alberta Children’s Hospital Research ment capacity of patients and families. (4) We need to improve Institute. Amit Batla has received speaker honorarium from Ipsen attractivity of transition care in general, and of transition care for Pharma and receives royalties from the book “Understanding PMDs in particular, as well as training in this field. Research Parkinsonism” (Jaypee brothers 2017). Jitendra Kumar Sahu has should be done on how to integrate transition curricula from received honorarium from the Indian Journal of Pediatrics for undergraduate to postgraduate levels. working as a Section Editor. He also received research grant sup- port paid to his institution from the Indian Council of Medical Research, New Delhi. Darius Ebrahimi-Fakhari has received speaker honoraria from the Movement Disorder Society, pub- Author Roles lishing royalties from Cambridge University Press, and research grants from the NIH/NINDS, the CureAP4 Foundation, the (1) Research project: A. Conception, B. Organization, CureSPG50 Foundation, the Spastic Paraplegia Foundation, the C. Execution; (2) Statistical Analysis: A. Design, B. Execution, Tom-Wahlig Foundation, the BPAN Warriors, the Boston Chil- C. Review and Critique; (3) Manuscript Preparation: A. Writing dren’s Hospital Office of Faculty Development, the Manton of the first draft, B. Review and Critique. Center for Orphan Disease Research, and a joint research agree- T.P.: 1A, 1B, 1C, 2A, 2B, 2C, 3A ment with Astellas Pharmaceuticals Inc. JP Lin has received sup- A.B.: 1B, 1C, 2C, 3A port from the Guy’s and St Thomas Charity New Services and A.S.: 1B, 1C, 2C, 3A Innovation Grant G060708; the Dystonia Society UK Grants J.K.S.: 1B, 1C, 2C, 3A 01/2011 and 07/2013; Action Medical Research GN2097 and C.C.: 2C, 3C unrestricted educational grants from Medtronic Ltd. Jonathan D.E.F.: 2C, 3C Mink has received compensation for consulting with Biogen, J.F.: 2C, 3C Amicus, Taysha, and Polaryx. He receives research funding from J.P.L.: 2C, 3C Neurogene. He serves on Data and Safety Monitoring Boards J.M.: 2C, 3C for PTC and Passage Bio. He serves as a central rater for a clinical A.M.: 2C, 3C trial sponsored by TEVA and a clinical trial executive committee D.M.: 2C, 3C for Applied Therapeutics. He receives research funding from the N.N.: 2C, 3C NIH. Alexander Munchau has received honoraria for lectures B.P.-D.: 2C, 3C from Takeda, support from the Deutsche Forschungsgemeinschaft Z.S.: 2C, 3C (DFG: SFB 936, and FOR 2698), and the European Reference C.T.: 2C, 3C Network—Rare Neurological Diseases (ERN – RND; Project H.B.-P.: 2C, 3C ID No 739510) and royalties for the book Neurogenetics (Oxford L.S.-M.: 2C, 3C University Press). Hilla Ben-Pazi, Recived grant form Israeli Inno- M.T.-S.: 2C, 3C vation Authority and Women-Tech grant from the EU. Laura K.H.: 2C, 3C Silveira-Moriyama has received honorary for Teva, Ipsen and R.C.D.: 2C, 3C Roche-FQM, has received support from SAS Brasil, and editorial V.S.C.F.: 1A, 2C, 3B fees for Brain and Behavior. Victor Fung receives a salary from M.A.K.: 1A, 1B, 2C, 3B NSW Health, has received unrestricted research grants from the E.R.: 1A, 1B, 1C, 2A, 2B, 2C, 3A Michael J. Fox Foundation, Abbvie and Merz, has been on Advi- sory Boards for Abbvie, Allergan, Ipsen, Merz, Seqirus, Stada, Teva and UCB, and receives royalties from Health Press Ltd. Disclosures Emmanuel Roze received honorarium for speech from Orkyn, Aguettant, Elivie and for participating in an advisory board from Ethical Compliance Statement: The authors confirm that the Merz-Pharma. He received research support from Merz-Pharma, approval of an institutional review board was not required for Orkyn, Elivie, Everpharma, Fondation Desmarest, AMADYS, 754 MOVEMENT DISORDERS CLINICAL PRACTICE 2023; 10(5): 748–755. doi: 10.1002/mdc3.13728 PRINGSHEIM T. ET AL. REVIEW ADCY5.org, Fonds de dotation Patrick Brou de Laurière, Agence Child Neurol 2011;53(12):1077–1084. https://doi.org/10.1111/j.1469- 8749.2011.04134.x. Nationale de la Recherche, Dystonia Medical Research Founda- 15. Koy A, Lin JP, Sanger TD, Marks WA, Mink JW, Timmermann L. tion. 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