Hypothesis / aims of study
Approximately 25% of children in England suffer from a chronic health condition by the age of 16. (1) These conditions often have long-lasting effects that extend into adulthood, therefore, transitioning care from paediatric to adult services is crucial. This transition should empower young people to understand their condition and its management during a pivotal time when behaviours and habits are being established. (2) This study aims to evaluate the effectiveness of the transition process between paediatric and adult pelvic floor services.
Study design, materials and methods
This is a retrospective review of 28 patients, who have had their care transitioned to adult services following surgery for colorectal disorders including chronic functional constipation and megarectum, Hirschsprung disease and anorectal malformations between November 2020 and November 2024. Transition of care involves patients attending joint paediatric and adult colorectal surgery clinics and typically begins aged 14 years, with completion by age 16 years. We aim to provide uninterrupted, coordinated care, which is developmentally and psychosocially appropriate for the young person through a process of preparation rather than one of transfer.
We used the National Confidential Enquiry into Patient Outcome and Death (NCEPOD) Young Person and Carer questionnaire to assess the transition between child and adult pelvic floor services. (3) The study involved 12 females and 16 males, with an average age of 17.7 years (+/- 1.6). Nine participants had learning difficulties. The questionnaire included both qualitative and quantitative elements, focussing on the experiences of patients and caregivers. Qualitative data were obtained through binary responses and open-ended feedback regarding specific aspects of the transition process. Quantitative data included Likert scale responses, which were analysed using basic statistical methods and non-parametric tests, such as the Mann-Whitney U test.
Results
Participants rated their involvement in transition planning at an average of 2.4 (+/-1.6), on a scale of 1 to 5. Fifteen patients felt prepared for transition, citing reasons such as feeling ‘able to speak for themselves’, ‘mature enough’ and ‘uncomfortable in children’s services’. In contrast, 13 patients felt unprepared for transition, six of these having learning difficulties. For those ‘not ready’ to transition, contributing factors included ‘cognitive delays’, difficulty adapting to change due to learning difficulties, and requiring ‘more time’ with a ‘more staggered approach’.
Forty-six percent of participants identified poor communication as an issue during transition. On average, on a scale of 1 to 5, participants rated: communication about the difference between paediatric and adult services 2.1(+/-1.6); communication between the paediatric and adult teams as 2.6 (+/-1.7); communication in paediatric services at 4.2 (+/-1.1) and communication in adult services 2.3 (+/-1.4, p<0.05).
Furthermore, 57% of participants reported a lack of communication regarding important outcomes such as education and mental health. Employment and addictive substances were only addressed with two and three participants respectively.
Interpretation of results
Our findings indicate that communication is a significant issue within current services, particularly in adult services post-transition. We endeavour to improve this, including providing better mental health and educational support and connecting patients to relevant local services. Another focus for improvement is the provision of a developmentally appropriate service. We propose developing guidance to outline what patients and their caregivers should expect during transition, enhancing understanding of transition and providing a more supported, age-appropriate service.