Transfer of musculoskeletal care from paediatric to adult services for patients with cerebral palsy and chronic neuromuscular conditions: Identifying the unmet need

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 orth...

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Main Authors: Bhushan Sagade, Connor Thorn, Portia Ross, Catherine May, Evan Davies, Darius Rad, Caroline Edwards, Alexander Aarvold
Format: Article
Language:English
Published: Elsevier 2024-01-01
Series:Health Care Transitions
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Online Access:http://www.sciencedirect.com/science/article/pii/S2949923224000382
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author Bhushan Sagade
Connor Thorn
Portia Ross
Catherine May
Evan Davies
Darius Rad
Caroline Edwards
Alexander Aarvold
author_facet Bhushan Sagade
Connor Thorn
Portia Ross
Catherine May
Evan Davies
Darius Rad
Caroline Edwards
Alexander Aarvold
author_sort Bhushan Sagade
collection DOAJ
description 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.
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spelling doaj-art-93a3784fbcd74db0ada6e6ed0348594d2024-11-30T07:15:00ZengElsevierHealth Care Transitions2949-92322024-01-012100078Transfer of musculoskeletal care from paediatric to adult services for patients with cerebral palsy and chronic neuromuscular conditions: Identifying the unmet needBhushan Sagade0Connor Thorn1Portia Ross2Catherine May3Evan Davies4Darius Rad5Caroline Edwards6Alexander Aarvold7University Hospitals Southampton NHS Foundation Trust, Tremona Road, Southampton SO16 6YD, UKCorresponding author.; University Hospitals Southampton NHS Foundation Trust, Tremona Road, Southampton SO16 6YD, UKUniversity Hospitals Southampton NHS Foundation Trust, Tremona Road, Southampton SO16 6YD, UKUniversity Hospitals Southampton NHS Foundation Trust, Tremona Road, Southampton SO16 6YD, UKUniversity Hospitals Southampton NHS Foundation Trust, Tremona Road, Southampton SO16 6YD, UKUniversity Hospitals Southampton NHS Foundation Trust, Tremona Road, Southampton SO16 6YD, UKUniversity Hospitals Southampton NHS Foundation Trust, Tremona Road, Southampton SO16 6YD, UKUniversity Hospitals Southampton NHS Foundation Trust, Tremona Road, Southampton SO16 6YD, UKIntroduction: 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.http://www.sciencedirect.com/science/article/pii/S2949923224000382Transfer servicesCerebral PalsyTransfer of careMusculo-skeletal care
spellingShingle Bhushan Sagade
Connor Thorn
Portia Ross
Catherine May
Evan Davies
Darius Rad
Caroline Edwards
Alexander Aarvold
Transfer of musculoskeletal care from paediatric to adult services for patients with cerebral palsy and chronic neuromuscular conditions: Identifying the unmet need
Health Care Transitions
Transfer services
Cerebral Palsy
Transfer of care
Musculo-skeletal care
title Transfer of musculoskeletal care from paediatric to adult services for patients with cerebral palsy and chronic neuromuscular conditions: Identifying the unmet need
title_full Transfer of musculoskeletal care from paediatric to adult services for patients with cerebral palsy and chronic neuromuscular conditions: Identifying the unmet need
title_fullStr Transfer of musculoskeletal care from paediatric to adult services for patients with cerebral palsy and chronic neuromuscular conditions: Identifying the unmet need
title_full_unstemmed Transfer of musculoskeletal care from paediatric to adult services for patients with cerebral palsy and chronic neuromuscular conditions: Identifying the unmet need
title_short Transfer of musculoskeletal care from paediatric to adult services for patients with cerebral palsy and chronic neuromuscular conditions: Identifying the unmet need
title_sort transfer of musculoskeletal care from paediatric to adult services for patients with cerebral palsy and chronic neuromuscular conditions identifying the unmet need
topic Transfer services
Cerebral Palsy
Transfer of care
Musculo-skeletal care
url http://www.sciencedirect.com/science/article/pii/S2949923224000382
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