Abstract
INTRODUCTION: Children with cerebral palsy (CP) are treated by well-co-ordinated multi-disciplinary neuromuscular teams. With a comprehensive multidisciplinary team, co-ordinating the transfer to adult care is a challenge. Orthopaedic care becomes fragmented as patients transfer from paediatric orthopaedic surgeons with training in multi-joint neuromuscular conditions (NMCs), to adult orthopaedic surgeons where this expertise rarely exists. Orthopaedic and spinal problems are a major unmet health need in this population. There is a lack of research in the literature regarding availability and access to orthopaedic services post transferring, which this study aimed to address. METHODS: This was a cross-sectional study conducted at an NHS referral centre for specialist paediatric services to evaluate the existing transfer program. A 10-item questionnaire was developed by senior clinicians for patients with CP or NMCs and their families to answer. It focused on three domains: Availability of a transfer of care plan, access to healthcare services and satisfaction with the services. RESULTS: There were 39 responses from patients, or their families received between December 2021 to April 2022. Patients were aged between 17 and 28 years at the time of answering. Availability of a transfer of care plan was poor, at only 20.5 % (8/39). Sixty-nine percent (27/39) stated there was not an orthopaedic surgeon overseeing their bone and joint health and a further 33.3 % (13/39) reported lack of supervision from a physiotherapist. Fifty-six percent (22/39) of respondents reported a decline in musculoskeletal health. Those that did receive ongoing orthopaedic care reported high rates of satisfaction. CONCLUSION: Our study has shown that the transfer of care for patients with CP and NMCs continues to remain poor, contrary to national guidelines, with lack of access to adequate musculoskeletal healthcare services after transfer to adulthood. The unmet needs of patients with CP or NMCs with orthopaedic and spinal pathologies are higher than previously reported. This area has been critically understudied, but this manuscript has highlighted an urgent need to improve and reform transfer practises, to fulfil the current deficit.