The transition of adolescents with chronic conditions is a challenging task. This study aimed to explore the experiences and needs of adolescents with chronic conditions in the transition period and to apply these findings to the design of a generic patient education programme. Data were collected from a sample of 29 adolescents with chronic conditions from Northern Germany and Switzerland including a broad range of views due to variation in disease management and organisation of care both in paediatric and adult populations. Participants were interviewed in group (n = 18) or individual (n = 11) interviews between September 2011 and February 2012, and the data were analysed using qualitative content analysis. The findings revealed that the interviewees expressed high levels of competency in the management of their chronic conditions but identified gaps in healthcare and unmet needs during transition. In particular, they believed that they would benefit from opportunities to exchange ideas and more specific information with peers about vocational and medical issues concerning adolescent health. Identified themes reflecting adolescent needs were used to develop the transition workshop including modules regarding the following: transfer to adult medicine, their new role as a patient, orientation within the healthcare system, vocational issues, detachment from parents, social support, contraception, substance abuse, family planning, stress-management, activation of resources and developing personal goals. The workshop's content was largely generic and included some condition-specific components. The workshop was designed as a compact 2-day patient education programme in a group setting for adolescents prior to their transfer to adult care. The guiding principle was the idea of empowerment by supporting the adolescents through various interactive methods to develop adequate knowledge, skills, understanding and motivation regarding their chronic conditions. We conclude that patient education programmes promoting adolescent self-management and empowerment increase the preparedness for transition.

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BackgroundThe transition of health care of youth (age 15–25) with chronic conditions requires the assessment of adolescents’ access, use and needs as well as satisfaction with the health services they use. The aim of this study was to test the adolescent adaptation of the parent version “Child Health Care Questionnaire - Satisfaction, Utilization and Needs” (CHC-SUN) concerning its psychometric performance and appropriateness for adolescents and young adults.MethodsThe Youth Health Care Measure (YHC-SUN) was designed to allow self-report of youth and it was pilot-tested in a small sample using cognitive debriefing. A cross-sectional survey in a sample of youth with chronic conditions in the transition period was carried out.ResultsOne hundred eighty-two ambulatory care patients with three conditions participated in the survey. The subscales of the section on satisfaction with care showed excellent internal consistencies, uni-dimensionality and fit to the model of the parent version. There was no impact of gender and education on satisfaction with care. Associations with age, diagnosis, experiences with care and health literacy affecting the satisfaction with care indicate discriminatory and content validity.ConclusionsPotential applications of the new instrument are evaluations of health care services for adolescents and young adults using self-reports and evaluations of transition programs and interventions such as patient education.

The importance of health-related care and self-management responsibilities has been shown in recent research. The aim of this work is the development and psychometric testing of an instrument to assess health-related transition competence. The instrument was developed with psychometric and conceptual methods in several steps. Based on focus group and expert interviews, an item pool to assess health-related transition competence was developed. The instrument was tested and finalised in a pilot study with adolescents with chronic conditions (N=323). Three subscales "work-related preparedness" (3 items), "condition-related knowledge" (3 items) and "health-care competence" (4 items) with proper psychometric properties were identified. The subscales can be combined to a global score. The scales feature good psychometrics. They efficiently facilitate the standardised assessment of health-related transition competence in preparation and progress of the transition. This also enables for outcome assessment of health-care services related to transition competence (e. g., workshops).