Judy Thibadeau

Redefining transition: Self-efficacy in urologic care

Betsy Hopson, Timothy Boswell, Ching Man Carmen Tong, Stacy T. Tanaka et autres

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Bowel continence in adult individuals with spina bifida: Who takes ownership of care?

Ching Man Carmen Tong, Savannah Petrus, James Stallworth, Alexandra N. Borden et autres

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Healthcare transition in spina bifida: A national mixed method study

Betsy Hopson, Kathy H. Huen, Molly Richardson, Rhonda Cady et autres

Introduction: Adolescents and young adults (AYA) with spina bifida (SB) face substantial challenges during the transition from pediatric to adult healthcare, including fragmented systems, limited adult provider availability, and gaps in self-management readiness. Despite national guidelines, little is known about how transition …

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Spina bifida as a congenital neurodevelopmental condition: Developing a philosophy of health care transition across the lifespan

Jonathan Castillo, Judy Thibadeau, Tim Brei, Heidi Castillo

Spina bifida (SB) is a broad term encompassing several subgroups of neural tube defects including myelomeningocele, meningocele, and lipomyelomeningocele. Myelomeningocele is the most common form of open SB, accounting for approximately 80% of all SB. For a significant subpopulation of historically underserved …

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Clinical priorities to improve the neuropsychological care of individuals with Spina Bifida: A consensus statement of the Spina Bifida Association and the Spina Bifida and Hydrocephalus Neuropsychology Collaborative

T. Andrew Zabel, D. J. Bernat, Rosalia Costello, Veronica Bordes Edgar et autres

Objective: Spina Bifida (SB) is a medical and neurodevelopmental disability that impacts multiple health and functional systems, including cognitive and neuropsychological functioning. Neuropsychological assessment and monitoring are integral components of SB-related clinical care, as outlined in the Spina Bifida Association’s (SBA) Neuropsychological …

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Global burden of chronic non-communicable diseases: Prenatal care and beyond, numerous challenges besiege investigation across the care continuum

Jonathan Castillo, Judy Thibadeau, Tim Brei, Heidi Castillo

Recently, the National Institutes of Health (NIH) announced possible restructuring of indirect and administrative costs for funded research. Many entities have raised concern about the impacts that such funding restructuring may have on the future progress of biomedical investigation. The NIH has …

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Financial Toxicity in Spina Bifida: Development of a Patient and Caregiver Questionnaire

Diana A. Aponte-Colon, Rafael Tua-Caraccia, Dandan Chen, Leonid I. Aksenov et autres

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Advances in spina bifida care: The global journey toward dignity, inclusion, and innovation

Jonathan Castillo, Judy Thibadeau, Tim Brei, Heidi Castillo

For nearly a decade, the special issue for spina bifida (SB) in the Journal of Pediatric Rehabilitation Medicine (JPRM) has become an epicenter for qualitative, state of the art, and innovative SB research. It has been noted that the concept of “blue …

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Paying to pee: A national survey of urinary catheter users’ costs and coverage

Maryellen S. Kelly, Hannah Damico, Dawne Widener-Burrows, Judy Thibadeau et autres

PurposeThis study aimed to survey individuals who regularly use urinary catheters to understand health insurance coverage and out-of-pocket costs they experience to advocate for health-policy change.MethodsSurvey content was generated by non-profit organizations and programmed into Qualtrics. It was distributed in Spanish and …

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Research Priorities for Children With Hypoxic-Ischemic Encephalopathy or Myelomeningocele: A Survey of Parents

Renée A. Shellhaas, Betsy Pilon, Judy Thibadeau, Stephanie M D Rau et autres

Sleep problems and disorders are highly prevalent in childhood1 and have important neurodevelopmental and general health consequences. Anecdotally, parents of children with developmental disabilities, including hypoxic-ischemic encephalopathy (HIE) and myelomeningocele, report concerns about sleep. We hypothesize that adverse effects of abnormal sleep …

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Release and highlights of the Lifespan Bowel Management Protocol produced for clinicians who manage neurogenic bowel dysfunction in individuals with spina bifida

Maryellen S. Kelly, Eileen Sherburne, Joy C. Kerr, Colleen Payne et autres

The Spina Bifida Association has spearheaded developing and releasing the first healthcare protocol for managing neurogenic bowel secondary to spina bifida.This protocol, the Lifespan Bowel Management Protocol (LBMP), was developed in collaboration with clinicians, researchers, parents of children with spina bifida, and …

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From prenatal care to spina bifida related mortality: The lifespan is marked by transitions experienced by increasing immigrant and international populations

Jonathan Castillo, Judy Thibadeau, Tim Brei, Heidi Castillo

Whether it is for collaboration on folic acid fortification or the standardization of care efforts concerning neurogenic bowel dysfunction, a global forum on neural tube defects related issues is needed. Propitiously, the 2023 Spina Bifida World Congress sponsored by the Spina Bifida …

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