Achieving Consensus on a Prenatal Patient Education Resource about Spina Bifida
Education and Research Strategies
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Primary Categories:
- General Education
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Secondary Categories:
- General Education
Introduction:
Patients who receive ultrasound findings or maternal serum screening results indicative of a neural tube defect during pregnancy are often left with complex questions about reproductive options and what medical and surgical interventions to pursue if they continue a pregnancy. Research also shows that patients want additional information about available supports and services and life outcomes for people with Spina Bifida (Agrawal et al., 2024). Consequently, a team of representatives from national medical, genetics, and advocacy organizations collaborated to develop "Understanding a Spina Bifida Diagnosis" for patients learning about a prenatal diagnosis of Open Spina Bifida.
Methods:
To develop this resource funded by the Joseph P. Kennedy, Jr. Foundation, the Lettercase National Center for Prenatal and Postnatal Resources brought together representatives of The American Academy of Pediatrics, The American College of Obstetricians and Gynecologists, The Association of University Centers on Disabilities, The Fetal Therapy Nurse Network, The National Society of Genetic Counselors, Redefining Spina Bifida, and the US Spina Bifida Association to collaborate on the development of a resource specifically for patients first learning about screening results indicative of a diagnosis of Spina Bifida. The interdisciplinary team followed the same iterative steps used in the development of "Understanding a Down Syndrome Diagnosis," a patient education resource has been recommended in ACMG, NSGC, and ACOG guidelines for discussing Down syndrome and prenatal screening results. Collaborators followed a process of doing a targeted literature assessment across both medical issues and psychosocial outcomes, drafting the patient resource, holding three rounds of reviews with 11 interdisciplinary review team members from the medical, genetic, advocacy, and medical specialist communities including neurologists and self advocates with Spina Bifida. Moreover, the document was optimized for health literacy by defining scientific terms using plain language; using readable.com to reduce the reading level to ninth grade or below; and collecting and taking racially, ethnically, and ability diverse photos of individuals with Spina Bifida.
Results:
Similar to the Down syndrome resource, the Spina Bifida resource includes sections on prenatal screening and testing, first year medical issues, families, development and healthcare, educational services, spina bifida resources, and adoption. Both groups needed information about supports and services that are critical for addressing social determinants of health among people with disabilities, including Medicaid, Early Intervention, Social Security, ABLE savings accounts, and the Individuals with Disabilities Education Act. Unlike the DS resource, the review team for the SB resource also drafted a section on prenatal and postnatal treatment to address the different options for prenatal and postnatal surgical interventions for closing the exposed spinal cord. Notably, photos also follow a similar pattern of showing people with Spina Bifida engaged in daily activities from different and racial backgrounds. Another consideration for the Spina Bifida resource introduced by the team was to include equal representation among people who use wheelchairs, walkers, and prosthetic supports to demonstrate different modes of ambulation. A common theme was the importance of referring parents to specialized Spina Bifida clinics for detailed information and clinical care.
Conclusion:
The process of developing "Understanding a Down Syndrome Diagnosis" was largely generalizable to the development of the Spina Bifida resource and still flexible enough to be customizable for a different condition. All of the supports and services identified as important to the Down syndrome advocacy organizations were similarly identified as important to the Spina Bifida advocacy organizations. These findings suggest that resources about genetic conditions need to be accessible and inclusive of both medical and psychosocial outcomes, as well as supports and services and photos to meet the health literacy and functional needs of parents of children with disabilities.
Patients who receive ultrasound findings or maternal serum screening results indicative of a neural tube defect during pregnancy are often left with complex questions about reproductive options and what medical and surgical interventions to pursue if they continue a pregnancy. Research also shows that patients want additional information about available supports and services and life outcomes for people with Spina Bifida (Agrawal et al., 2024). Consequently, a team of representatives from national medical, genetics, and advocacy organizations collaborated to develop "Understanding a Spina Bifida Diagnosis" for patients learning about a prenatal diagnosis of Open Spina Bifida.
Methods:
To develop this resource funded by the Joseph P. Kennedy, Jr. Foundation, the Lettercase National Center for Prenatal and Postnatal Resources brought together representatives of The American Academy of Pediatrics, The American College of Obstetricians and Gynecologists, The Association of University Centers on Disabilities, The Fetal Therapy Nurse Network, The National Society of Genetic Counselors, Redefining Spina Bifida, and the US Spina Bifida Association to collaborate on the development of a resource specifically for patients first learning about screening results indicative of a diagnosis of Spina Bifida. The interdisciplinary team followed the same iterative steps used in the development of "Understanding a Down Syndrome Diagnosis," a patient education resource has been recommended in ACMG, NSGC, and ACOG guidelines for discussing Down syndrome and prenatal screening results. Collaborators followed a process of doing a targeted literature assessment across both medical issues and psychosocial outcomes, drafting the patient resource, holding three rounds of reviews with 11 interdisciplinary review team members from the medical, genetic, advocacy, and medical specialist communities including neurologists and self advocates with Spina Bifida. Moreover, the document was optimized for health literacy by defining scientific terms using plain language; using readable.com to reduce the reading level to ninth grade or below; and collecting and taking racially, ethnically, and ability diverse photos of individuals with Spina Bifida.
Results:
Similar to the Down syndrome resource, the Spina Bifida resource includes sections on prenatal screening and testing, first year medical issues, families, development and healthcare, educational services, spina bifida resources, and adoption. Both groups needed information about supports and services that are critical for addressing social determinants of health among people with disabilities, including Medicaid, Early Intervention, Social Security, ABLE savings accounts, and the Individuals with Disabilities Education Act. Unlike the DS resource, the review team for the SB resource also drafted a section on prenatal and postnatal treatment to address the different options for prenatal and postnatal surgical interventions for closing the exposed spinal cord. Notably, photos also follow a similar pattern of showing people with Spina Bifida engaged in daily activities from different and racial backgrounds. Another consideration for the Spina Bifida resource introduced by the team was to include equal representation among people who use wheelchairs, walkers, and prosthetic supports to demonstrate different modes of ambulation. A common theme was the importance of referring parents to specialized Spina Bifida clinics for detailed information and clinical care.
Conclusion:
The process of developing "Understanding a Down Syndrome Diagnosis" was largely generalizable to the development of the Spina Bifida resource and still flexible enough to be customizable for a different condition. All of the supports and services identified as important to the Down syndrome advocacy organizations were similarly identified as important to the Spina Bifida advocacy organizations. These findings suggest that resources about genetic conditions need to be accessible and inclusive of both medical and psychosocial outcomes, as well as supports and services and photos to meet the health literacy and functional needs of parents of children with disabilities.