5  Transition


Maj Friberg Birkedal

Hæmofilicenter Rigshospitalet, Børne Unge Afdelingen, Copenhagen Denmark

1 Introduction

  • Transition is an organized, coordinated process that aims to ensure the young patient with a chronic disease a safe and consistent crossing from pediatric care to adult care. Transition is typically initiated around the age of 12 and continues until the patient is transferred to adult care.

1.1 Transition in a Nordic perspective

  • In the Nordic countries HTCs are not organized uniformly and models of care delivery differ. Some centers transfer patients to a new facility with a new HCP team typically at the age of 18. Other clinics keep the patients at the same facility and adjust the composition of the HCP team. Consequently, all patients have a need for a planned transition process from child to adult care, but not all patients will experience a transfer.

1.2 Purpose off transition

  • The overall purpose of transition is to increase the young person’s understanding of disease and selfcare, studies have shown that a lack of coordinated transition from pediatric to adult care leads to higher morbidity and higher mortality among young people with chronic disease [1].

  • In the transition to adult care the young person becomes responsible for; treatment, engagement in dialogue with HCP, attending appointments, and disease management. It is these new and substantial challenges the transition must prepare the young person for. The treatment of hemophilia is demanding, and many affected young people need parental assistance even in their later teen age years [2].

1.3 International guidelines for transition

  • While there currently is no consensus on the best approach to transition and transfer specific to young people with hemophilia. However, the latest decades have provided a selection of international guidelines for young people with chronic disease, guidelines developed with well-designed case-control-studies, experts opinions and rapports from expert committees [38].

2 Planning and timing

  • Involve an identified transition-coordinator.

  • Provide the young person with a transition plan, adapted to the young person’s development, maturity, and cognitive abilities.

  • Development adapted care consider the young person’s bio-psychosocial status as the basis for any transition strategy. Special attention must be paid to each young person’s capabilities, needs, and hopes. The process should be adapted to match the young person’s ever-changing needs and circumstance ex education, housing, substance use and fertility [9].

  • Most international guidelines recommend that the transition starts at the age of 12 (but there are variations in the guidelines) but no later than a year before transfer. Importantly the time of transfer take place at a time of relative stability in the young person’s life, and not solely be based on a rigid age threshold [9].

3 Communication

  • Adolescents are often challenged by insufficient adherence, and health professionals’ way of communicating has proved to be strongly linked to successful transition and adherence [10,11].

  • Meet the young person with empathy and a non-judgmental tone.

  • The young person must be involved in the planning of the intervention and the transition plan must take his/her understanding of disease, physical limitations, and future goals into account.

  • The communication must be aimed at the young person and not the parents.

  • Split visits are one way to strengthen the young person’s competencies and support the natural development towards independence. Split visits are a central part of transition and is internationally recommended [3,1216].

  • Furthermore, studies have shown that that the use of communicational and linguistical tools such as motivational interviews and structured youth interview models such as the HEADS-model, helps alleviate insecurities and make the young person feel at ease, while the HCP can explore signific subjects regarding the young person’s resources and challenges including sensitive and personal matters [10,11,17].

  • The primary barriers to adherence to prophylaxis adherence for young people with hemophilia have been identified to encompass a desire to be normal and perceived negative impact on activities and social participation [18].

  • Encourage the young person to share concerns in relation to ex. school, friends, and social relations.

4 Aim

  • During the transition process, it is the task of the treatment team and transition-coordinator to educate and train the young person in self-sufficiency concerning health matters [19].

  • The young person must be supported in the process towards self-efficacy and independence.

  • The aim is for the young person to acquire knowledge that renders him/her capable off planning and keeping appointments, understanding relevant medical terminology, and understanding when and whom to contact in case of emergency and/or questions. 

  • To acquire the skills necessary to order, administer, and register medicine.

  • To develop attitudes supporting adherence to treatment plans.

  • In addition, the young person must be introduced to his/her future treatment team and department [20].

4.1 Measuring the effect of transition

The impact of the intervention must be evaluated. Relevant outcome indicators for assessing the intervention can include:

  • Adherence to treatment plan.

  • Number of missed appointments.

  • Patient and parent satisfaction.

  • Self- efficacy skills.

  • Change in bleed pattern.

  • Understanding of haemophilia and its treatment.

  • Number of emergency contacts.

  • Number of contacts from parents instead of the young person [21].


  • Children with haemophilia should be gradually involved in their treatment in accordance with their age specific development starting from time of diagnosis.

  • All centers should have transition programs that support the gradual education of the patient.

  • The program should support the referral and development of responsibility, knowledge, and skills for the patient.

  • From the age of 12 a structured transition plan should be developed in collaboration with the patient, caregivers, and comprehensive healthcare team.

  • The effect of the program should be evaluated and adjusted accordingly.