International guidelines and resources for transition in cerebral palsy
July 2020
The New Zealand Cerebral Palsy Clinical Network is working towards developing a nationwide transition service for young people with cerebral palsy that works in the New Zealand context. What follows is an overview of current international guidelines relevant to transition in cerebral palsy and commentary about their relevance in New Zealand. These guidelines are generally written for the use of health providers and service planners. However, they all have useful information for young people and caregivers seeking to understand and advocate for transition.
1. Royal Australasian College of Physicians (RACP) Transition of Young People with Complex and Chronic Disability Needs from Paediatric to Adult Health Services 2014
| Website address | https://www.racp.edu.au/docs/default-source/advocacy-library/transition-of-young-people-with-complex-and-chronic-disability-needs.pdf |
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| Useful for | Paediatricians and physicians |
| Summary | This transition statement acknowledges that most young people with disability in New Zealand are likely to have been seen regularly by a paediatrician and will be transitioning to an adult healthcare system in which the GP is the key doctor for their care. It recommends a ‘handover’ case conference with the young person and their family, the GP or other adult lead clinician and the paediatrician. The statement includes some specific recommendations about what should be included in a young person’s care and about documentation and communication. |
| Relevance to NZ context | This is a statement about transition in Australia and NZ and acknowledges the need for culturally appropriate care for Maori and Pacific |
2. NICE Guidelines (National Institute for Health and Care Excellence).
These are evidence-based guidelines from the UK which are developed through a rigorous process which is outlined in their documents. There are three guidelines which are relevant to healthcare transition in cerebral palsy.
Transition from children’s to adults’ services for young people using health or social care services. Published: 24 February 2016
| Website address | www.nice.org.uk/guidance/ng43 |
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| Useful for | Health providers, service planners |
| Summary | This guideline outlines many practical actions for individual young people and their service providers to follow in the transition process. There is also a significant amount of guidance that addresses service planning and infrastructure. There is a distinction between transition which is a purposeful and planned process over years and transfer which is the point at which care passes from paediatric to adult services. Many of the recommendations require resources. These include: a named worker to coordinate transition care and support; annual meetings during the transition process of the young person and all of the practitioners providing support; and training adult providers in developmentally appropriate care and person-centred practice |
| Relevance to NZ context | The guideline is designed for the UK context and refers to UK legislation and types of services. However, much of the guideline is relevant to the NZ context, for example it is recognised that for many young people moving out of paediatric care the equivalent adult service does not exist |
Cerebral palsy in under 25s: assessment and management. Published: 25 January 2017
| Website address | https://www.nice.org.uk/guidance/ng62 |
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| Useful for | Health providers |
| Summary | This guideline covers assessment and management of many aspects of cerebral palsy, focusing on maximising individual function, choice and independence. It addresses developmental and clinical comorbidities associated with cerebral palsy. Musculoskeletal aspects are addressed in a separate NICE guideline (Spasticity in under 19s, 2012, updated 2016 https://www.nice.org.uk/guidance/cg145). Transition is covered in recommendations 154-162 of the summary and section 29 of the full guideline. The most notable additional resource requirement of this guideline is the need to develop a more widespread professional expertise in the management of adults with cerebral palsy, including GPs and availability of medical specialists with a special interest in cerebral palsy in adults (such as rehabilitation physicians). It is noted that there are thought to be three times as many adults as children with cerebral palsy in the UK. |
| Relevance to NZ context | The guideline is designed for the UK context and refers to UK legislation and types of services. However, much of the guideline is relevant to the NZ context |
Cerebral palsy in adults. Published: 15 January 2019
| Website address | https://www.nice.org.uk/guidance/ng119 |
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| Useful for | Health providers, service planners |
| Summary | This is a detailed guideline on care and support for adults with cerebral palsy. It aims to improve health and wellbeing, promote access to services and support, participation and independent living. The guideline covers: Access to services and health reviews; support with communication, vocational skills and independent living, assistance technology and physical activity; managing spasicity and dystonia; assessing and monitoring bone and joint disorders, mental health, eating & nutrition, respiratory disorders, pain. |
| Relevance to NZ context | The guideline calls for resources that are not currently available in many parts of New Zealand, eg referral when indicated to “a multidisciplinary team experienced in the management of neurological impairments” and annual reviews for some adults with “a healthcare professional with expertise in neurodisabilities”.However, it also gives quite detailed information which would assist adult health services trying to build up knowledge and experience. |
3. Royal College of General Practitioners (UK) Medical Health Check Guide - Cerebral Palsy 2017
| Website address | https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/-/media/EAD4A4BA5238418CA895C99AD66D01D5.ashx |
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| Useful for | GPs, paediatricians. caregivers, young people with cerebral palsy |
| Summary | This document is a concise summary of the NICE guidance for cerebral palsy health care for use by GPs carrying out an annual health check from age 14 and throughout adulthood. It is clearly written, practical and easy to follow and comes highly recommended. There is a small segment on transition. |
| Relevance to NZ context | The guide does include some information about documentation and process which is specific to the UK, but is otherwise relevant to NZ |
4. Agency for Clinical Innovation and Trapeze, The Sydney Children’s Hospitals Network, 2014: Transition of young people from paediatric care to adult health care
| Website address | https://aci.health.nsw.gov.au/__data/assets/pdf_file/0011/251696/Key_Principles_for_Transition.pdf |
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| Useful for | service planners, health providers |
| Summary | Principles of the guidelines have been based on the evidence that has been evaluated in systematic reviews (Crowley 2011, Kime 2013) and aligns with key documents such as the NSW Youth Health Policy, The Royal Australasian College of Physicians Transition Guidelines and WA Paediatric Chronic Diseases Transition Framework. Key principles include a systematic and formal transition process; preparation for transition as early as 14 years; appointment of a transition coordinator; individualised transition plan for the young person; good communication and shared responsibility; empowering the young person towards self-management and long term follow–up beyond the transfer to adult services. Checklists for young people, transition readiness assessments and transition plan templates are available to download from the website. The guidelines acknowledge that some young people who may never achieve independence or require on-going parental support may not benefit from the principles outlined in the document. There are added challenges for these young adults and their families that are not addressed by the principles and may need to be simplified or adapted for young adults with cerebral palsy who have cognitive or learning impairment. |
| Relevance to NZ context | This document provides evidence based guidance on the principles needed to deliver effective transition services and transition experience for young people. Significant structure, systems and processes needs to be in place in order for transition to occur. Provided these are in place, key elements/ steps of the transition process outlined can be included in the plans with potential to adapt existing checklists for use in the New Zealand health care setting. |
5. A Guideline for Transition from Paediatric to Adult Healthcare for Youth with Special Healthcare Needs: A National Approach.
Canadian Association of Paediatric Health Centres (CAPHC) 2016
| Website address | https://ken.childrenshealthcarecanada.ca |
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| Useful for | Health providers, service planners |
| Summary | This guideline makes recommendations at a person level, a clinical level and a system level. There is also a useful discussion about measurements, outcomes and valid evaluation of transition interventions. A repository of tools and summary of programs has been built on the CAPHC Knowledge Exchange Network. This includes, but is not limited to, tools for assessing self-management, health summaries, readiness checklists, health care skills for youth, parents and caregivers, and transfer summaries. Transition tools and resources The Six Core Elements of Health Care Transition is a framework to improve clinical practice. Current Assessment of Health Care Transition Activities is a self-assessment tool for providers. |
| Relevance to NZ context | Most of the recommendations are quite general, so are applicable to the New Zealand situation. |
6. Child Neurology Foundation (US) Transition of Care - 2016 with updates
| Website address | https://www.childneurologyfoundation.org/transitions/ |
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| Useful for | Paediatricians |
| Summary | This is an online tool based on the Child Neurology Foundation consensus statement published in July 2016. The model focuses on what might be achieved in annual reviews with a paediatrician or paediatric neurologist, in preparation for transfer to adult care. |
| Relevance to NZ context | There are some US specific elements such as details about health insurance and the model is based on transfer from a paediatric neurology team to an adult neurologist. However, there are useful tools including a sample transition policy, transition checklist, self-care assessments, care plan and medical summary templates. |
7. The Swedish Cerebral Palsy Follow-Up Program (CPUP)
| Website address | https://cpup.se/in-english/what-is-cpup-in-english/ |
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| Useful for | Health providers, physiotherapists |
| Summary | Follow-up of individuals with cerebral palsy through the transition years and description of adult life: The Swedish experience 2014. CPUP was developed as an effective way to survey children and young people with CP as a preventative measure to reduce the risk of hip dislocation or severe contractures. If necessary, appropriate treatment could be commenced at an early stage to optimise quality of life, including functional ability .CPUP monitoring commences in childhood and continues into adulthood. Physical assessments with measurement of joint range of motion of arms and legs are performed regularly by an occupational therapist and a physiotherapist. Their hips and back are examined regularly by a physiotherapist and radiographic examinations according to the healthcare programme. Operations and other treatments are recorded. The continuous and standardized monitoring enables early detection of any deterioration. After 10 years, a follow up survey in 2005 provided scientific evidence that there was prevention of hip dislocation and reduced numbers of children developed severe contractures, deformity and scoliosis. Children, young people and their families identified that CPUP had led to improved healthcare. A comprehensive manual includes: Information for parents Assessment form Physiotherapist children: 20181001 Gross Motor Function Classification System – Expanded and Revised (GMFCS-E&R) The Functional Mobility Scale – version 2 (FMS) Assessment form Occupational therapist children Manual Ability Classification System for Children with Cerebral Palsy 4-18 years (MACS) Critical values ROM children Assessment form Paediatric Neurology Assessment form adults Manual adults Critical values ROM adults Radiographic follow-up in CPUP to prevent hip dislocation Spinal follow-up in CPUP |
| Relevance to NZ context | While Sweden has effective child rehabilitation teams, it too has challenges with the process of transition to adulthood. There is a disconnect between paediatric and adult services in Sweden. The diligent monitoring that happens in childhood does not carry through to adulthood. The service received is dependent on the level of function of the person and the region of the country. Similar to the NZ experience, adult rehabilitation services in Sweden are primarily geared towards those with acquired disabilities and services organised for people with congenital or early-onset disabilities are not available in every region. While it is deemed useful to continue with CPUP in adult care to have long term access to data on their patients, there could be access to regional data which currently is absent. The CPUP combination prevention follow-up program and health care quality registry is internationally recognised as being effective and desirable, however, the use of this framework would require significant digital and clinical resources to carry this through into adulthood in NZ. |
8. “The Best Journey to Adult Life” For Youth with Disabilities An Evidence-based Model and Best Practice Guidelines For The Transition To Adulthood For Youth With Disabilities Canada 2009
| Website address | https://canchild.ca |
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| Useful for | Service planners |
| Summary | This document can be summarised as follows: a comprehensive review of the transition process and what engagement is required to make it successful. They frame transition in three phases: a) preparation; b) journey; and c) landing. ‘Preparation’ is the work that is done while the youth is still at school or another institution. This involves consultation and outreach amongst groups as well as written documentation. The ‘Journey’ during the transition itself, in which the young person is experiencing the changes and journeys from one developmental stage, environment or role to another. The ‘Landings’ in the adult world, which recognize that there will be phases of reaching a destination, with outcomes and goals being met, and time taken to ‘refuel’ before starting on another journey in one’s life course. Throughout the document, the authors refer to every person or organisation that is involved in the effective transition process. This includes the child/youth, parents, community, service providers and government policies. Each of the values are written around the effect on each group, e.g. what do service providers need to do. |
| Relevance to NZ context | The Canadian overview is highly theoretical. However, there are a few concepts that can be adapted easily for the New Zealand context. These include forming a systematic understanding of each of the groups involved in transition and their individual needs when it comes to making transition successful. Furthermore, New Zealand could adopt the notion of transition values especially as it comes to incorporating indigenous models of health and previous health codes of rights. |
Action points for New Zealand from this model
Develop a ‘values’ list for transition.
Break transition into each of its deliverable component parts, e.g. school preparation, active transition, adulthood experiences.
Have a comprehensive and working overview of every person and organisation involved in transition and outline their transition responsibilities clearly. This may include service providers and policy makers.
Carefully review the potential barriers or obstructions to effective transition early in the situation before they become a problem.
Appoint or nominate a transition navigator who has a good working knowledge of all the features involved.
Develop effective communication strategies between all the groups that are involved in the transition.
Start the transition process as early as possible and focus on youth communication across different media platforms.
The values that are the foundation of best practices should include:
Person first
Family centred
Culturally sensitive
Strengths/needs based (vs. diagnosis)
Equitable
Flexible
Have a life course philosophy
Future orientation
Choices & options offered (individualized)
include supportive environments community capacity building inclusive communities
Wellness promotion
Interdependence a focus (versus ‘independence’)
Outcomes of participation, contribution & belonging = citizenship
9. Transition to adult services pathway – Together for Short Lives, UK 2015
| Website address | https://www.togetherforshortlives.org.uk/resource/transition-adult-services-pathway/ |
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| Useful for | Service planners, health providers |
| Summary | ‘Stepping Up’ is a guide to enabling a good transition to adulthood for young people with life-limiting and life-threatening conditions. It is a care pathway for teenagers and young adults with life-threatening, life-limiting or complex medical conditions. The guide provides a generic and minimum framework that can be adapted locally to plan more detailed local service provision. The pathway sets out five standards across three phases of care for young people; Preparing for adulthood; preparing to move on, settling into adult services The five standards include; every person from 14 years to be supported and be at the centre of preparing for approaching adulthood; every young person to be supported to plan proactively for their future; every young person has an end of life plan which is developed in parallel to planning for ongoing care and support in adult services; children’s and adult services work together to enable a smooth transition; every young person is supported in adult services with a multi-agency team fully engaged in facilitating care and support |
| Relevance to NZ context | This approach could be adapted for NZ as good practice for young people living with CP |