Consensus statement on transition for Diabetes
About this work
The Paediatric Society of New Zealand Clinical Network, Children and Young People's Diabetes Services recognises there are significant differences throughout New Zealand in the transition of young people with diabetes from paediatric and adolescent diabetes services to either young adult or adult diabetes services, or alternative services such as general medicine or general practice. This variation in the transition process is primarily due to differences in the availability of resources, geographical location and regional policies and models of care.
Over the past 15 months the Network, in consultation and collaboration with consumer representatives and multidisciplinary diabetes teams, has undertaken significant work focussed on the examination of resources and processes relating to the transition of adolescents from paediatric diabetes services to adult diabetes services across New Zealand. Gaps in the area of transition were uncovered and collaborative work on the development of specific resources designed to support a consistent approach to safe and effective transition of youth with diabetes entailed.
The primary outcome of this work has been the development of the Consensus Statement on Transition. This document will provide for healthcare professionals working with youth, a guide for consistent standards of transition care of young people with diabetes within New Zealand.
The Consensus Statement on Transition is the original work of collaboration between the Clinical Reference Group of PSNZDCN and a national working group of clinicians from a variety of disciplines across both paediatric and adult diabetes services in both tertiary and primary care settings. It is based on current best practice evidence for diabetes care for young people with diabetes mellitus (ISPAD 2014, APEG 2011).
The Statement and associated resource templates are provided for use in secure PDF format only. The expectation is that the clinicians use the templates as a guide to consistent practice in this area. The content and wording is not to be changed however locally relevant additional content attached to the existing templates may further improve the quality of the documents. In the absence of high quality evidence the following recommendations are based on expert opinion only.
The Statement and associated templates will be reviewed and updated bi-annually to reflect any changes in clinical best practice diabetes care. Questions or comments about the plans are welcome, and should be directed to Rosalie Hornung, Nursing Work Stream Leader at firstname.lastname@example.org
The Consensus Statement on Transition
Preparation for transition
The Paediatric team should work with and prepare the young person and their family/ whānau for transition at least one year prior to transfer of care but ideally from early adolescence (11-12 years) (see Transition Toolkit Starter Pack).
Preparation should include:
Information about the differences between the Paediatric and Adolescent Diabetes Services and the receiving service (e.g. Young Adult or Adult Diabetes Services, (or alternative service such as satellite outreach clinics; university clinics, private sector providers etc).
Gradual transfer of diabetes self-management skills from the parents/whānau to the young person as developmentally appropriate
Provision of a youth health model where the young person is given the opportunity for privacy and confidentiality (without parents/ whanau present).
Development of self-advocacy and communication skills, knowledge of issues relating to confidentiality and healthcare rights and knowledge of adult service options and information about these services.
Assessment of psychosocial and mental health concerns particularly depression; disordered eating and diabetes-related distress (see Transition Tookit HEeADSSS interview).
Access to specialist allied health services (for example, diabetes dietitians and psychologists) trained in the management of childhood and adolescent diabetes.
Education, support, and resources appropriate to the developmental stage and cognitive ability for the young person and their family/whānau regarding diabetes-related management; nutrition, complications, and adolescent health issues in relation to sexual health and fertility, alcohol, drugs and smoking, driving and other lifestyle related risk issues, and educational (school)/vocational support and guidance. These should be provided in a variety of mediums including in person, paper based and on line.
Provision of general contact details along with the name and contact details of a "link person" within the Young Adult or Adult Diabetes Services or alternative, prior to transfer
The young person and their family/whānau meeting the Young Adult or Adult Diabetes Services or alternative prior to transfer where possible (For example, joint clinic or a formal "welcome event" with peer support provided).
Development of a clear emergency plan if the young person requires care (hospital admission or community based) prior to first contact with the receiving service.
Timing of transition
If agreed by both the Paediatric and Adolescent Diabetes Service and the receiving Young Adult or Adult Diabetes Services (or alternative service), the timing of the transfer of care may be individualised depending on developmental stage, availability of resources, readiness of transition (see Transition Toolkit Readiness Preparation Pack and Transition Satisfaction Survey and Consent), psychosocial issues, educational/vocational stage or other reasons. Hospital admissions that are required for acute healthcare management (wherever possible) should remain within the Paediatric setting until such a time that transition to adult services is complete.
Transfer (or handover) of care
Preferably, there should be identified health care professionals from both the Paediatric and Adolescent Diabetes Services and the Young Adult or Adult Diabetes Services (or alternative service) who coordinate the transition process and engage in joint discussions and collaborations. The referral process should be documented clearly to ensure explicit understanding of transition roles and responsibilities of all health professionals involved in order to streamline transfers in a consistent manner. These professionals need to establish in collaboration with the young person and their family/whānau transition action plans inclusive of shared goals within a specified timeline, in order to facilitate effective communication between both teams and the young person and their family/whānau (see Transition Toolkit Transition Record, Transition Readiness Preparation Pack and Transition Toolkit HCP Checklist). Joint Paediatric and adult transition clinics may not always be possible particularly with challenges in geography but there are always opportunities for videoconferencing facilities which may aid joint handover sessions. Closure with Paediatric services should ideally occur via formal documentation (see Transition Toolkit Closure letter)
see (http://www.endocrinetransitions.org/wp-content/uploads/2014/02/Clinical_Summary.pdf) for an example template of a clinical summary for a new health care team.
The Paediatric team should provide a written summary of the young person's care (see Transition Record) including:
A list of current concerns.
Information regarding the diagnosis of the type of diabetes (e.g. type 1 versus type 2 versus monogenic diabetes).
Current management (inclusive of special authority numbers and eligibility criteria wherever relevant).
Present and past glycaemic control.
Independence with diabetes self-management skills.
Psychosocial and/or mental health issues summary.
Dietetic review summary.
Young person's health management goals.
Young person's signed consent prior to the release of health information to another service (see Transition Toolkit Satisfaction Survey and Consent).
Post transition care
The Young Adult or Adult Diabetes Service (or other receiving service) should see the young person within three months of transfer. Ongoing review is recommended thereafter at least every three months as clinically appropriate. The Young Adult or Adult Diabetes Service or alternative should provide individualised management including:
A formal system of orientating young people and families (see http://www.endocrinetransitions.org/wp-content/uploads/2014/02/Welcome.pdf for example template of a welcome letter to a new healthcare service).
Care from an Endocrinologist/Physician and Diabetes Nurse Specialist/Practitioner who has a special interest or has been trained in managing young adults with diabetes.
Access to a specialised diabetes dietitian.
Access to a psychological service with knowledge of diabetes and/or chronic health conditions.
Ability to see young people in a private and confidential environment (without parents/ whānau).
Provision of a youth-friendly approach to care integrating wherever possible technologies such as social media apps and/or websites into engagement frameworks.
Appropriate screening and management of diabetes-related microvascular and macrovascular complications.
Assessment of psychosocial and mental health concerns particularly diabetes-related distress, disordered eating, and depression, and ongoing developmentally-appropriate education as listed above (Point 1).
Education should include management of diabetes with educational (school)/vocational support and guidance.
A formal system for identifying patients that are 'lost' to follow-up and an intervention framework for these patients.
A formal transition process for transfer of care to Adult Diabetes Services or alternative (if from a Young Adult Diabetes Service).
Review of transition
The transition process of patients from Paediatric and Adolescent to Young Adult or Adult Diabetes Services (or alternative services) should ideally be undertaken in accordance with a formal Transition Policy that has been developed locally with input from consumers. The process and associated policy should be continually reviewed to ensure transition care remains coordinated, effective, comprehensive, patient-centred and culturally appropriate. This can be done using tools such as transition satisfaction surveys (see Transition Toolkit Satisfaction Survey and Consent) & evaluation tools. Transition of patients should be documented within a registry or database identifying adolescents and their respective stage of transition inclusive of transfer plans and tracking of capture rates and healthcare outcomes throughout the transition period.
American College of Physicians in collaboration with ISPAD/Endocrine Society (https://www.acponline.org/clinical-information/high-value-care/resources-for-clinicians/pediatric-to-adult-care-transitions-initiative/condition-specific-tools)
Starship Transition Programme documentation
NDSS, Diabetes Australia and the Australian Centre for Behavioural Research in Diabetes. Moving on Up. A guide for Young Adults with Diabetes. E-book. http://ebooks.edocumentonline.com/BUCKNER/moving_up_ebook/
Melbourne RCH Transition Service,http://www.rch.org.au/transition/
Society of Youth Health Professionals New Zealand (http://www.rch.org.au/transition/)
Centre for Youth Health https://www.healthpoint.co.nz/public/paediatrics/kidz-first-centre-for-youth-health/
Definition of terms
Adolescent/Youth/Young people: While the terms adolescent and young person may be used loosely and interchangeably, the World Health Organisation (WHO) defines young people as aged 10 - 24 years. This age bracket includes the overlapping categories of adolescents, aged 10 to 19 years, and youth aged 15 - 24 years.
Transition: Purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-oriented health care systems (Blum, 2003).
Youth Health Service: A service that addresses developmental aspects of adolescence and provides young people confidential and private care, whilst respecting family values and connection.