Aims More than 95% of children with sickle cell disease (SCD) survive into adulthood, making a successful transition from child to adult care an essential process. Poor management of this transition may result in reduced compliance, high non-attendance rates and adverse effects in later life. This study aimed to investigate the views of young patients in the process of transitioning with the long-term goal of improving previously poor engagement within the adolescent population.
Methods A questionnaire was given to all SCD patients between the ages of 13 and 21 who attended out-patient clinics over a four-month period.
Results 31 questionnaire responses were collected (response rate 94%).
Overall satisfaction with the transition process varied with age. The mean score was 7.4/10 among 16–21 year olds, but only 4/10 among 13–15 year olds.
Praise was given for transition services such as a previously organised tour of the adult department, a peer discussion day and an information pack.
48.4% were interested in speaking to peers about their experiences.
41.9% reported receiving a transition information pack of which 81% found it useful.
Adolescents recounted that the topic of transitioning had been first broached at a wide range of ages (see Figure 1).
Conclusion There are discrepancies between the planned transition programme and reported patient experience. The tour of adult department and peer discussion day were praised, however not every adolescent recounted experiencing these services. Feedback from clinicians suggests that even though adolescents like the idea of these transition services they still fail to attend. A focus group has been initiated to improve adolescent participation. The information pack was introduced in 2010 which may explain why under half reported receiving it. Notably the majority of those that received it found it useful, suggesting that it is an important component of transition. The age that the topic of transition is introduced could be optimised and standardised, as it is widely thought that beginning the transition process early is an essential element for successful transfer to adult care.
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