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The use of health care resources by young adults with spina bifida
1Dept. of Rheumatology, Withington Hospital, Manchester, U.K.
Insights
Young adults with spina bifida (myelomeningocele) in Sheffield experienced significant health issues and relied heavily on parents for daily care. Many were dissatisfied with healthcare, needing more community nurses and physiotherapists.
Area of Science:
- Pediatric Health
- Neurology
- Rehabilitation Medicine
Background:
- Myelomeningocele is a severe birth defect impacting mobility and requiring lifelong medical care.
- Transitioning from pediatric to adult healthcare presents challenges for individuals with spina bifida.
- Understanding the healthcare needs of young adults with myelomeningocele is crucial for effective service provision.
Purpose of the Study:
- To assess the health status and healthcare resource utilization of 16-21 year olds with myelomeningocele in Sheffield.
- To identify dependence on carers and satisfaction with current healthcare services.
- To determine specific needs for improved community and allied health support.
Main Methods:
- A survey was conducted with 21 patients (49% response rate) aged 16-21 years with myelomeningocele.
- Data collected included morbidity in the past 12 months, healthcare usage, and carer dependence.
- Patient satisfaction with healthcare provision was also assessed.
Main Results:
- 71% reported illness related to spina bifida in the preceding year.
- 81% received hospital supervision, primarily from urologists, with many losing contact by age 18.
- Limited use of community services and GPs was noted; most relied on parents for incontinence and skin care. 52% were dissatisfied with care.
Conclusions:
- Young adults with myelomeningocele face ongoing health challenges and significant dependence on parental care.
- Existing healthcare services, particularly community-based support, are inadequate for this population.
- There is a clear need for enhanced services, including community nurses and physiotherapists, to improve care transitions and outcomes.
Abstract:
Residents of Sheffield, U.K., aged 16-21 years with myelomeningocele were interviewed to ascertain morbidity in the preceding 12 mths., current and past use of hospital and community health care resources, and dependence on carers. Twenty-one patients, representing 49% of those known to paediatric services, responded. In the previous year, 71% of the group had been ill due to their spina bifida. 81% of subjects received hospital supervision, mostly by a urologist. Many hospital contacts had been lost, mostly by age 18 years. Little use was made of community health services or general practitioners. The majority of patients were dependent on their parents for management of incontinence, and care of skin vulnerable to pressure sores. 52% of respondents were dissatisfied with current provision of health care. Particular need was expressed for community nurses and physiotherapists.