Transition to adult care for young people with cerebral palsy

Myers, Lisa L.; Nerminathan, Arany; Fitzgerald, Dominic A.; Chien, Jimmy; Middleton, A.; Waugh, Mary‐Clare; Paget, Simon P

doi:10.1016/j.prrv.2019.12.002

Cited by 11 publications

(9 citation statements)

References 68 publications

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“…This is in line with other studies indicating no systematic follow up of adults with CP (12). Some of the known issues surrounding the transition from paediatric-to adult-based health care are the local availability of appropriate services, management by multiple professionals, and coordination and management of comorbidities (10,23). Parents and adolescents with CP find it challenging to move from multidisciplinary paediatric services to specialty visits only addressing single complaints (23).…”

Section: Differences In Somatic Outpatient Visits Between Childhood and Adulthoodsupporting

confidence: 86%

“…Nearly all children with CP are monitored by paediatricians, but some young people with CP may experience barriers to accessing health care, and it is likely that adults with CP experience difficulties accessing the same health care treatments and services after they have left paediatric care (10)(11)(12). During childhood the choice of contact with the health care system is taken by the parents and often facilitated by existing paediatric follow-up systems, where children are allocated regular visits.…”

Section: Introductionmentioning

confidence: 99%

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Health Care Usage among Children and Adults with Cerebral Palsy

Michelsen

Flachs

Laursen

et al. 2020

CEJoP

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Objective − This paper aims to quantify and compare health care usage among children and adults with and without cerebral palsy (CP). Materials and Methods − A population-based study using public registries with follow-up of children and adults. Persons with CP born from 1950 to 2003 were identified in the Danish Cerebral Palsy Registry (4235 persons). Persons without CP were selected randomly from the Danish Civil Registration System and matched by birth year and gender (22,351 persons). Hospitalizations, visits to specialists, general practitioners and emergency health services were analysed. Children were born 1995-2003 and monitored until 2012 (1996-2012). Adults were born 1950-1985 and monitored for ten years (2003)(2004)(2005)(2006)(2007)(2008)(2009)(2010)(2011)(2012). Results − Significantly fewer adults with CP visited specialists compared with children with CP. At the same time, the differences in use of general practitioners and between persons with and without CP were smaller in adulthood compared to childhood. Persons with CP and the most severe impairments had an unexpected low frequency of acute admissions compared with children with CP. We did not find a high use of acute contact with the health care system among adults with CP. Conclusion − If acute contacts with the health care system could be assumed to be a direct measurement of serious illness, this study does not identify a larger risk of serious illness in adults with CP, but other factors, such as reduced access to the acute health care system may, however, also be a reason for the lower use in adulthood.

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Section: Differences In Somatic Outpatient Visits Between Childhood and Adulthoodsupporting

confidence: 86%

Section: Introductionmentioning

confidence: 99%

Health Care Usage among Children and Adults with Cerebral Palsy

Michelsen

Flachs

Laursen

et al. 2020

CEJoP

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“…Young adults' understanding of their care teams' roles is an important aspect of adjustment to adult care. It has been well established that many young people with disabilities do not have a thorough idea of what services are available to them (Myers et al, 2020; Roebroeck et al, 2009). Similar to the literature, our study found that those participants who had not received specialist care from an early age found it difficult determining appropriate services to engage with (Binks et al, 2007; Young et al, 2007).…”

Section: Discussionmentioning

confidence: 99%

Exploring the transition experiences of young adults with cerebral palsy

Clough,

Culnane,

Loftus

2023

Child

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BackgroundIt is important that young adults with a chronic health condition or developmental disability, such as cerebral palsy, receive adequate healthcare transition preparation and support to optimise the transition period and transfer from paediatric to adult health services. Understanding the healthcare experiences of young adults during and after the transition period will provide valuable insights into what enables a positive healthcare experience for young adults in the adult health setting.MethodsEleven young adults with cerebral palsy who had their last appointment at the Royal Children's Hospital between 2016 and 2018 were purposively recruited for this study. Ten participants completed one‐on‐one telephone interviews, and one participant provided written responses to interview questions. Five participated via parent proxy. Interviews were recorded, transcribed verbatim, and analysed using the Braun and Clarke six‐step thematic analysis to create an interpretive description of participants' transition experiences.ResultsThree themes were generated: (1) “preparedness of the young adult and parent,” which discussed the preparation for adult healthcare, with subthemes (a) expectations of adult care and (b) development of self‐management skills during transition; (2) “coordination of transfer process and continuity of care,” which illustrated the impact of transfer coordination on continuity of care; and (3) “adjusting to adult services,” which highlighted experiences of care in the adult setting, with subthemes (a) differences between paediatric and adult services, (b) availability and accessibility of adult and community services to meet needs, and (c) autonomy and agency.ConclusionDedicated transition support for young adults and their parents during transition from paediatric to adult healthcare plays an important role in ensuring a supportive and well‐coordinated transition and transfer of care. Experience of care in the adult setting is influenced by a combination of both transition experience and the capacity of adult services to cater for young adults' needs.

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“…Even though all of the reports revealed that scoliosis might be associated with GERD, the skeletal evaluations noted from the spinal X-rays in standing were incomplete. Moreover, no study showed any significant relationship between the curve of scoliosis and the symptoms of GERD [ 16 ]. This study analyzed the data obtained by X-rays of the whole spine of patients in the frontal as well as the sagittal view in standing, which further assisted in the assessment of spinal deformities with accuracy, as compared with the spinal mouse or chest X-rays of the partial spinal view [ 17 ].…”

Section: Discussionmentioning

confidence: 99%

Scoliosis and Gastroesophageal Reflux Disease in Adults

Eryilmaz

Ahmed

Rehmani

et al. 2021

Cureus

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Out of 210 patients, 146 were found to have degenerative scoliosis at the level of the lumbar and thoracolumbar spine. Fifty-two patients had a right convex curve, and 94 had a left convex curve. Sixty-nine patients had GERD. According to the analysis of the multivariate logistic regression, the Cobb angle was highly related to GERD (p-value <0.05 and odds ratio of 1.031). The participants were grouped according to the Cobb angle of curve at the lumbar spine (less than 30 degrees with a large right-sided convex curve, 30 and more with a small curve, and more than 30+ degrees with a large left-sided convex curve). The study revealed that a large left-sided convex curve was highly related to GERD, with a p-value <0.05 and odds ratio of 10.935. ConclusionsThe left-sided large convex curve at the thoracolumbar or lumbar spine, especially when the Cobb angle was more than 30 degrees, was highly associated with GERD. Therefore, the symptoms of GERD should be monitored in the elderly population with degenerative scoliosis.

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Transition to adult care for young people with cerebral palsy

Cited by 11 publications

References 68 publications

Health Care Usage among Children and Adults with Cerebral Palsy

Health Care Usage among Children and Adults with Cerebral Palsy

Exploring the transition experiences of young adults with cerebral palsy

Scoliosis and Gastroesophageal Reflux Disease in Adults

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