Category: Pediatric Movement Disorders
Objective: The aim of this audit was to explore the satisfaction and experience of young people with implantable Intrathecal baclofen pumps transitioning to an adult Spasticity Service from a paediatric Complex Motor Disorder Service.
Background: Transitioning young people from paediatric health care settings to the adult equivalent is an internationally renowned challenge. This challenge is heightened within the field of neurodisability and movement disorders (MD). Factors of poor health status, poly pharmacy and multi- morbidity mean adult neurologists and MD specialists are accepting and managing new generation of patients that without medical advances would not previously have survived. Their phenotypes and medications may be unfamiliar to the adult service. Parents are usually incredibly involved in their care.
Method: A satisfaction questionnaire was developed jointly by a paediatric and adult neurological nurse specialist. Questionnaires were distributed to 12 patients who had been transitioned to adult services within the previous 5 years. Patients and their carers were given 10 questions about their experience during and after the process of transition.
Results: 50% of the 12 patients completed the questionnaire. The patients’ diagnoses included cerebral palsy (CP), HABC syndrome and Acquired Brain Injury (ABI). All patients were GMFCS level 5 equivalent and amongst them had 12 other co-morbidities; indicating the level of disability and complexity. The mean age of transition was 18.
67% of patients felt nervous about the prospect of transition, and various factors and changes made them miss paediatric care. However, with team work, patients/carers expressed a sense of growing up, trust, safety, relief and good understanding following moving services; a mean level of satisfaction was 8.8/10. Contributing factors included good communication, understanding of complex conditions, smooth team work and sharing of knowledge.
Conclusion: Transition is often felt to be an overwhelming challenge in neurodisability and movement disorders. Parents, patients and clinicians can see it as a negative change and a burden. Our small audit has highlighted that young people with complex neurodisbility and motor disorders can thrive in adult services when both adult and paediatric services come together with good communication, shared goals and patient centred care.
To cite this abstract in AMA style:S. Perides, L. Keenan, V. Stevenson, M. Kaminska. Transition from paediatric to adult care – A satisfaction survey of young people with complex motor disorders and implanted devices. [abstract]. Mov Disord. 2022; 37 (suppl 2). https://www.mdsabstracts.org/abstract/transition-from-paediatric-to-adult-care-a-satisfaction-survey-of-young-people-with-complex-motor-disorders-and-implanted-devices/. Accessed December 5, 2023.
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