Seizure documentation in people living with epilepsy.

Seizure documentation is an essential component of epilepsy management. Not all persons with epilepsy choose to document their seizures, but many view the practice as essential to managing their disease. While seizure documentation is a valuable aspect of patient care, clinicians and patients must remain aware that seizure underreport and overreport commonly occur due to lack of seizure awareness. Additionally, in rare cases, persons with epilepsy may intentionally conceal their seizures from clinicians. The continued development of electronic seizure diaries and epilepsy self-management software provides patients with new and expanding options for seizure documentation and disease management. In order for these tools to be utilized most effectively, patient input must be central to their development. Given the limitations of seizure documentation, the development of accurate, non-invasive seizure detection devices is crucial for accurate seizure monitoring.

Care coordination guidelines for the care of people with spina bifida.

Care coordination is the deliberate organization of patient care activities between two or more participants (including the patient) involved in a person's care to facilitate the appropriate delivery of health care services. Organizing care involves the marshalling of personnel and other resources needed to carry out all required patient care activities. It is often managed by the exchange of information among participants responsible for different aspects of care [1]. With an estimated 85% of individuals with Spina Bifida (SB) surviving to adulthood, SB specific care coordination guidelines are warranted. Care coordination (also described as case management services) is a process that links them to services and resources in a coordinated effort to maximize their potential by providing optimal health care. However, care can be complicated due to the medical complexities of the condition and the need for multidisciplinary care, as well as economic and sociocultural barriers. It is often a shared responsibility by the multidisciplinary Spina Bifida team [2]. For this reason, the Spina Bifida Care Coordinator has the primary responsibility for overseeing the overall treatment plan for the individual with Spina Bifida[3]. Care coordination includes communication with the primary care provider in a patient's medical home. This article discusses the Spina Bifida Care Coordination Guideline from the 2018 Spina Bifida Association's Fourth Edition of the Guidelines for the Care of People with Spina Bifida and explores care coordination goals for different age groups as well as further research topics in SB care coordination.

Scientific methodology of the development of the Guidelines for the Care of People with Spina Bifida: An initiative of the Spina Bifida Association.

BACKGROUND: We combined literature review and consensus-building methodologies to develop health care guidelines for people with Spina Bifida across the life span. OBJECTIVE: The present paper describes the methodology used to update and expand this fourth edition of the Guidelines for the Care of People with Spina Bifida ("Guidelines"). This process was a fundamental initiative within the Spina Bifida Collaborative Care Network. METHODS: Working groups were formed consisting of international, multidisciplinary teams of clinical and research experts. A systematic review of multiple databases was conducted. The consensus building methodology, One-Text Procedure, was followed to draft and revise documents. Each section of the Guidelines was presented by working group chairs at a face-to-face meeting using the Nominal Group Technique (NGT). RESULTS: The Level 1 review resulted in 2449 abstracts being reviewed, and the Level 2 review resulted in 874 full text articles being archived for working groups. After working groups added and eliminated articles, a total of 803 manuscripts were included in the bibliography of the Guidelines. The final version of the Guidelines was then released in 2018. CONCLUSIONS: Evidenced based-research and consensus methodologies were used to develop the fourth edition of the Guidelines. It is hoped that this document will guide not only health care providers, but also patients and families, so that people with Spina Bifida can have the best and most scientifically-based care and treatments throughout ever-longer and higher-quality lives.

Needs assessment survey for children and adults with spina bifida in Georgia.

PURPOSE: We conducted a needs assessment among parents/guardians of children and independent adults with spina bifida, served by the Spina Bifida Association of Georgia (SBAGA). The objective was to assess if SBAGA is adequately meeting the needs of its constituents and to identify challenges and opportunities to improve services. METHODS: The survey targeted all members of SBAGA in 2017. Survey questions were drafted separately for parents/guardians of children, and independent adults with spina bifida. Both closed- and open-ended response options were provided. The survey was pilot-tested, and administered in English and Spanish, using email, post, or in person. RESULTS: A total of 119 individuals completed the survey. For parents/guardians (n= 96), the most important needs were bladder and bowel education, social and communication skills education, medical support, and transition and independence training. Independent adults (n= 23) responded that they mostly needed bladder and bowel education, medical support, and transition and independence training. Location of the SBAGA events and transportation to the events were the most frequent limiting factors for both groups. CONCLUSIONS: Our survey findings highlighted that SBAGA services are valued overall. The survey findings will be used to guide quality improvement of current programs, and develop programs addressing emerging needs and challenges.

Design and Methodological Considerations of the Centers for Disease Control and Prevention Urologic and Renal Protocol for the Newborn and Young Child with Spina Bifida.

PURPOSE: Care of children with spina bifida has significantly advanced in the last half century, resulting in gains in longevity and quality of life for affected children and caregivers. Bladder dysfunction is the norm in patients with spina bifida and may result in infection, renal scarring and chronic kidney disease. However, the optimal urological management for spina bifida related bladder dysfunction is unknown. MATERIALS AND METHODS: In 2012 the Centers for Disease Control and Prevention convened a working group composed of pediatric urologists, nephrologists, epidemiologists, methodologists, community advocates and Centers for Disease Control and Prevention personnel to develop a protocol to optimize urological care of children with spina bifida from the newborn period through age 5 years. RESULTS: An iterative quality improvement protocol was selected. In this model participating institutions agree to prospectively treat all newborns with spina bifida using a single consensus based protocol. During the 5-year study period outcomes will be routinely assessed and the protocol adjusted as needed to optimize patient and process outcomes. Primary study outcomes include urinary tract infections, renal scarring, renal function and bladder characteristics. The protocol specifies the timing and use of testing (eg ultrasonography, urodynamics) and interventions (eg intermittent catheterization, prophylactic antibiotics, antimuscarinic medications). Starting in 2014 the Centers for Disease Control and Prevention began funding 9 study sites to implement and evaluate the protocol. CONCLUSIONS: The Centers for Disease Control and Prevention Urologic and Renal Protocol for the Newborn and Young Child with Spina Bifida began accruing patients in 2015. Assessment in the first 5 years will focus on urinary tract infections, renal function, renal scarring and clinical process improvements.