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The natural history of spina bifida in children pilot project: research protocol
Ann I Alriksson-Schmidt1, Judy K Thibadeau, Mark E Swanson
1Musculoskeletal Sciences, Department of Orthopedics, Clinical Sciences Lund, Lund University, Lund, Sweden. ann.alriksson-schmidt@med.lu.se.
Insights
This pilot study aims to gather essential data on children with spina bifida, covering health, development, and family life. Findings will inform future research and improve care for this complex condition.
Area of Science:
- Pediatrics
- Developmental Pediatrics
- Public Health
Background:
- Limited population-based data exists for healthcare professionals caring for children with spina bifida.
- Spina bifida presents complex challenges impacting mobility, development, and overall well-being.
- A pilot project was initiated to gather comprehensive data across multiple domains.
Purpose of the Study:
- To inform a future multistate prospective study on the natural history of spina bifida.
- To provide empirical data for healthcare providers working with pediatric spina bifida patients.
- To enhance understanding of the lived experience of growing up with spina bifida.
Main Methods:
- Recruitment feasibility was assessed using diverse sources, including birth defect tracking systems and specialized clinics.
- A multidisciplinary module was piloted for data collection.
- Data retrieval methods were evaluated for utility.
- Descriptive data on living with spina bifida was summarized.
Main Results:
- This is an ongoing project; initial results are anticipated in 2013.
- The study is exploring the feasibility of identifying and recruiting participants.
- Data collection methods are being tested.
Conclusions:
- This project and its planned follow-up will offer valuable insights for healthcare professionals.
- The long-term goal is to increase knowledge about childhood spina bifida.
- Findings will guide healthcare practices through prospective cohort studies.
Background:
Population-based empirical information to inform health care professionals working with children with spina bifida currently is lacking. Spina bifida is a highly complex condition that not only affects mobility but many additional aspects of life. We have developed a pilot project that focuses on a broad range of domains: surgeries, development and learning, nutrition and physical growth, mobility and functioning, general health, and family demographics. Specifically, we will: (1) explore the feasibility of identifying and recruiting participants using different recruitment sources, (2) test a multidisciplinary module to collect the data, (3) determine the utility of different methods of retrieving the data, and (4) summarize descriptive information on living with spina bifida.
Objective:
The overall objective of the project was to provide information for a future multistate prospective study on the natural history of spina bifida.
Methods:
Families with a child 3 to 6 years of age with a diagnosis of spina bifida were eligible for enrollment. Eligible families were identified through a US population-based tracking system for birth defects and from a local spina bifida clinic.
Results:
This is an ongoing project with first results expected in 2013.
Conclusions:
This project, and the planned multistate follow-up project, will provide information both to health care professionals experienced in providing care to patients with spina bifida, and to those who have yet to work with this population. The long-term purpose of this project is to increase the knowledge about growing up with spina bifida and to guide health care practices by prospectively studying a cohort of children born with this condition.
