Health literacy in adolescents and young adults with cerebral palsy: a mixed methods systematic review

Ding, Jacqueline Y.; Cleary, Stacey L.; Morgan, Prue E.

doi:10.1080/09638288.2024.2311879

Cited by 2 publications

(2 citation statements)

References 56 publications

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“…Our results indicated a lower rate of clinics visited for NDIS participants with CP. This result may re ect previous ndings that adults with CP face challenges nding healthcare providers with adequate knowledge of CP in adulthood, necessitating them to do their own 'digging' to locate suitable providers (7). Consequently, they may tend to visit the same clinic once they nd suitable support.…”

Section: Discussionsupporting

confidence: 61%

“…Despite frequently using GP services (8-11), people with neurological disability form only a small portion of GPs' patient load (11,12). Previous studies have identi ed a lack of disability-related expertise, coupled with time constraints, as barriers to delivering high-quality care (6,7,13). Additionally, continuity of care is a critical aspect of general practice that has been associated with positive patient experiences and outcomes for people with neurological disability (14,15).…”

Section: Introductionmentioning

confidence: 99%

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General practice utilization for adults with neurological disability who are National Disability Insurance Scheme Participants in Australia

Douglas,

Winkler,

McLeod

et al. 2024

Preprint

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Background Most adults with neurological disability rely on general practitioners for the management and early intervention of health needs. Understanding the frequency and patterns of service use across neurological disability subgroups is vital to inform effective practice and policy initiatives. This study analysed the patterns of general practice service utilisation of National Disability Insurance Scheme (NDIS) participants with Acquired Brain Injury, Cerebral Palsy, Multiple Sclerosis, Spinal Cord Injury, and Stroke and compared these patterns with those of the rest of the population. Methods This is a retrospective data linkage study using de-identified general practice electronic medical records from Victoria, Australia that have been linked with de-identified NDIS data. Patient records span July 2017 to February, 2023. To gain insight into patients’ utilisation of general practice services, we looked at: 1) frequency of clinic activities and general practitioner activities, 2) number of different general practice clinics visited and 3) number of distinct general practitioners seen. Results The study sample comprised 818,456 adult patients (2,104 NDIS participants with neurological disability; 816,352 rest of population). Our results indicate a consistent pattern of high general practice service utilisation among adults with neurological disabilities wherein service utilisation rates of all investigated neurological disability cohorts were approximately 2 times higher than rates found in the rest of the population (incidence rate ratio (IRR) 1.84 to 2.12, confidence interval (CI) range [1.84 to 2.33]). In further comparison to the rest of the population, a slightly lower rate of accessing different general practice clinics was found for participants with Cerebral Palsy (IRR = 0.85, CI [0.80, 0.90]). However, results suggest that adults with neurological disability consult multiple general practitioners and visit different clinics over available record years. Conclusions Findings from this administrative health data provides a valuable foundation and demonstrates that adults with neurological disability in Australia use general practice services more frequently than the rest of the population. Investigating the factors that influence general practice service utilization, as well as the quality of consultations and continuity of care experienced by adults with neurological disability, remains a critical area for future research.

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Section: Discussionsupporting

confidence: 61%

Section: Introductionmentioning

confidence: 99%

General practice utilization for adults with neurological disability who are National Disability Insurance Scheme Participants in Australia

Douglas,

Winkler,

McLeod

et al. 2024

Preprint

View full text Add to dashboard Cite

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Capacity Building goals in young people with cerebral palsy in Australia: Analysis of publicly available National Disability Insurance Scheme data

Ding,

Cleary,

Morgan

2024

Preprint

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Background The Australian National Disability Insurance Scheme (NDIS) aims to provide person- centred care for individuals with disabilities, promoting independence and participation in society. Young adults with cerebral palsy (CP) benefit from Capacity Building supports, which are critical for developing skills necessary across the lifespan. Methods A retrospective cross-sectional analysis was conducted using publicly available NDIS Participant and Payment datasets from the June 2023 Quarter. Data were extracted for young adults with CP aged 15–34 years and characteristics and funding allocation for Capacity Building goals examined. Comparisons of Capacity Building characteristics were made between NDIS participants with CP and NDIS participants with Down syndrome and Spinal Cord Injury (SCI). Results Overall, 99.5% (n = 6,273) of NDIS participants aged 15–34 with CP identified at least one Capacity Building goal, totalling 110,234 goals. Average annual payments for Capacity Building supports for NDIS participants with CP increased with age, from $27,000 for 15-18-year-olds to $59,000 for 25-34-year-olds. The most frequent Capacity Building goals identified by young adults with CP were ‘Daily Living’, ‘Social and Community Participation’, and ‘Health and Wellbeing’. The analysis highlighted variations in the type and funding allocation of Capacity Building supports accessed by young adults with CP compared to their peers with Down syndrome and SCI. Conclusion This study emphasises variations in NDIS funding allocation for young adults with CP during the transition into adulthood; tailored funding strategies are required to meet the evolving needs of people aging with CP. Individualised goal setting and personalised supports align with international best practices for disability supports, fostering independence and enhancing quality of life. Further research is needed to explore the short and long-term outcomes of NDIS-funded supports, ensure equitable resource distribution, and advance global discussions on inclusive policies that enable full participation for people with disabilities.

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Health literacy in adolescents and young adults with cerebral palsy: a mixed methods systematic review

Cited by 2 publications

References 56 publications

General practice utilization for adults with neurological disability who are National Disability Insurance Scheme Participants in Australia

General practice utilization for adults with neurological disability who are National Disability Insurance Scheme Participants in Australia

Capacity Building goals in young people with cerebral palsy in Australia: Analysis of publicly available National Disability Insurance Scheme data

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