On Your Own Feet: A Practical Framework for Improving Transitional Care and Young People’s Self-Management

Abstract

This chapter describes the lessons learnt from 10 years of the On Your Own Feet transitional care quality improvement programs in the Netherlands. It uses a framework that encompasses eight key elements of transitional care: youth participation, team collaboration, future-oriented, co-ordination, continuity of care, parent involvement, self-management, and psychosocial care. The framework distinguishes three core categories of interventions. The first aims at collaboration with young people (mirror meetings and independent consultations) and within multidisciplinary teams of professionals working in pediatric care and adult care (multidisciplinary team consultation meetings and shared vision). The second category aims at the organization of care (transition protocols or pathways, transition co-ordinators, and transition clinics). Interventions in the third category stimulate adolescents’ independence and self-management: individual transition plans (such as Ready Steady Go), parent group support, and routine measurement of quality of life. While evidence for the added value of these interventions is hard to find, they are valued by young people, parents, and professionals alike because they fit developmental needs and the principles of person-centered care. In our programs, nurses played a pivotal role as team leaders, designers, and implementers of transition interventions, and as connectors of pediatric and adult services.

Appendix

Framework ‘on your own feet ahead’	Six core elements of healthcare transition (Got Transition 2014; White et al. 2018)	Key elements for, and indicators of, a successful transition (Surís and Akré 2015)	NICE guideline on transition (National Institute for Health and Care Excellence 2016c)	Proposed beneficial features (Colver et al. 2017)	Consensus statement on successful transition (Mazur et al. 2017)	Components of interventions that improve transitions to adult care (Schultz and Smaldone 2017)
Future-oriented	The practice has an individual transition flow sheet or registry for identifying and tracking transitioning youth, ages 14 and older, or a subgroup of youth with chronic conditions as they progress through transition processes The practice consistently offers clinician time alone with youth after age 14 during preventive visits. Clinicians use a standardized transition readiness assessment tool, and self-care needs and goals are incorporated into the youth’s plan of care beginning at ages 14–16	Starting planning transition at an early age (and at least 1 year before the transfer boundary) If developmentally appropriate, seeing the adolescent alone at least for part of the consultation	Ensure a smooth and gradual transition Collaboration between paediatric and adult care providers Start early (13 years at latest) Make a transition plan Meet adult care providers in advance (a transition clinic could help to facilitate this) Provide information about services and support available in adult care	Meet adult team before transfer: this could be in a joint clinic where paediatrician and adult physician consult together; or the adult physician might visit the child clinic to be introduced; or the young person might be taken to the adult clinic by a member of the child team to meet the adult physician Promotion of health self-efficacy: the clinic has a written policy about how they will encourage the young person to take responsibility for their health and give them information about their condition Written transition plan, which should be created some time before transfer. It should include plans for wider transition, not just the transfer to adult health services The young person should have a copy of it and it should be updated	A structured, written policy involving child and adult healthcare providers. This should be available to adolescents and their family or caregivers Starting to create a healthcare transition plan as early as possible, for example, by the age of 14 or below or at least one year before the transfer itself The transition process and timing should be individualized	Transition clinics can provide a tailored approach to young adults, addressing issues specific to this age group
Co-ordination		Assuring a good co-ordination (such as timing of transfer, communication, follow-up, remaining available as a consultant, etc.) between paediatric and adult professionals	Appoint a named worker to coordinate the transition care and support	Key worker: a single person known to the young person whom they could easily contact or go to if there were any problems of co-ordination or misunderstandings that needed to be sorted out Transition manager for clinical team who facilitates good working relationships between adult and child services; ensures that there are appropriate materials available for things such as health education or the transition plan; and monitors whether the young person has a suitable appointment in adult services and whether the appointment is kept		A transition coordinator may be helpful in optimizing clinic attendance. They could provide assistance with scheduling appointments and following up if appointments were not attended
Continuity	The practice has a written transition policy or approach, developed with input from youth and families that includes privacy and consent information, a description of the practice’s approach to transition, and age of transfer. Clinicians discuss it with youth and families beginning at ages 12–14. The policy is publicly posted and familiar to all staff The practice sends a complete transfer package (including the latest transition readiness assessment, transition goals/actions, medical summary and emergency care plan, and, if needed, legal documents, and a condition fact sheet), and paediatric clinicians communicate with adult clinicians, confirming paediatric provider’s responsibility for care until young adult is seen in the adult practice The practice confirms transfer completion, need for consultation assistance, and elicits feedback from patients regarding the transition experience	Identifying an adult provider willing to take on the young patient before transfer Patient not lost to follow-up	Ensure a smooth and gradual transition Collaboration between paediatric and adult care providers	Age-banded clinic: an intermediate clinic setting such as a young person’s clinic or a young adult team	A structured, written policy, involving child and adult healthcare providers Continuity of care and cooperation, i.e. using common medical guidelines, keeping proper medical records, and performing follow-up evaluations Continuity of financing
Young person	The practice ensures equal representation of youth and families in strategic planning related to healthcare transition	Including young person’s views and preferences to the planning of transition	Involve young people and their caregivers in service design, delivery and evaluation of transition care Transition support must be developmentally appropriate Transition support must be strengths-based		Procedures should be available to adolescents and their family or caregivers, and should allow for some flexibility, depending on the adolescent’s developmental stage as well as the expectations and needs of the patient and relatives Active participation of the adolescents and the parents or caregivers should be sought The transition process and timing should be individualized
(Multidisciplinary) team	The practice has incorporated transition into its plan of care. All clinicians are encouraged to partner with youth and families in developing transition goals and updating and sharing the plan of care. Clinicians are also encouraged to address needs for decision-making supports. The practice has a vetted list of adult providers and assists youth in identifying adult providers		Collaboration between paediatric and adult care providers Meet adult care providers in advance (a transition clinic could help to facilitate this)	Age-banded clinic: an intermediate clinic setting such as a young person’s clinic or a young adult team Meet adult team before transfer: this could be in a joint clinic where paediatrician and adult physician consult together; or the adult physician might visit the child clinic to be introduced; or the young person might be taken to the adult clinic by a member of the child team to meet the adult physician Co-ordinated team of which the members need to work together and communicate well together, and demonstrate to the young person that this is happening. Co-ordination of appointments on the same day demonstrates this	Adequate staff training and sensitization to the needs and concerns of adolescent patients Interdisciplinary teams
Parent involvement	The practice ensures equal representation of youth and families in strategic planning related to healthcare transition	Discussing with patient and family about self-management	Involve young people and their caregivers in service design, delivery and evaluation of transition care	Appropriate parent involvement in their child’s care, but with changing responsibilities. Involvement concerns what happens in the clinic (parent being present or not and who does the talking) and also discussions at home about the young person’s health and how to manage it	Active participation of the adolescents and the parents or caregivers should be sought
Self-management	The practice consistently offers clinician time alone with youth after age 14 during preventive visits. Clinicians use a standardized transition readiness assessment tool, and self-care needs, and goals are incorporated into the youth’s plan of care beginning at ages 14–16	Discussing with patient and family about self-management If developmentally appropriate, seeing the adolescent alone at least for part of the consultation		Promotion of health self-efficacy: the clinic has a written policy about how they will encourage the young person to take responsibility for their health and give them information about their condition and the young person is asked “Have you received enough help to increase your confidence in managing your condition?” Holistic life-skills training for education, relationships, finances, employment, housing, social relationships etc. as well as health maintenance. The health service may not provide such training but staff in consultations inquire about such matters and referrals are made to other agencies as needed	The extent to which the adolescent has acquired some skills for self-management should be taken into account	Psychological support may help youth learn how to balance their multiple priorities as well as cope with challenges such as understanding how their illness affects their self-image and avoiding becoming isolated from their social circles
Psychosocial care		Although having a holistic approach to prepare young people for adulthood was not unanimously considered as essential or very important, it is an important part of transition. In fact, it seems that the consensual elements in the study of Surís and Akré (2015) are mainly limited to health outcomes	Using a person-centred (holistic) approach Involve primary care (general practitioner)	Written transition plan, which should be created some time before transfer. It should include plans for wider transition, not just the transfer to adult health services. The young person should have a copy of it and it should be updated Holistic life-skills training for education, relationships, finances, employment, housing, social relationships etc. as well as health maintenance. The health service may not provide such training but staff in consultations inquire about such matters and referrals are made to other agencies as needed	Young patients should not be transferred until they have the skills to function in an adult service and have finished growth and puberty. The extent to which the adolescent has acquired some skills for self-management should also be taken into account, as well as their own expectations Adolescent patients with chronic conditions have specific needs that go far beyond treating their condition. These concerns are usually better addressed by an interdisciplinary team	Transition clinics can provide a tailored approach to young adults, addressing issues specific to this age group including taking responsibility for their diabetes, experimenting with drugs or alcohol and managing diabetes away from home. Transition clinics can also give adolescents/young adults an opportunity to meet with providers of different disciplines