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Clinic Care Partner Standards

The Spina Bifida Association (SBA) has identified 12 Clinic Care Partner Standards. These Standards are practices and processes that contribute to the best outcomes for people with Spina Bifida. SBA’s Professional Advisory Committee approved these 12 standards. They have been updated for 2024. The Clinic Care Partner designation is in effect for five years.

Standard 1: Program delivers care to patients using the Guidelines for the Care of People with Spina Bifida.

Standard 2: The clinic must have a medical director from the medical or surgical disciplines. If the medical director has a surgical background (e.g., neurosurgery or urology), the clinic must demonstrate partnership with a provider from physiatry or medicine (general pediatrics, developmental pediatrics, internal medicine, internal medicine/pediatrics, or family medicine) to ensure that the comprehensive needs of the patient are met.

Standard 3: The clinic must have a clinical care team that consists of, at a minimum, the Medical Director and a nurse or nurse practitioner.

Standard 4: The Clinic Care Team collaborates with identified orthopedic surgeons, neurosurgeons, urologists, neuropsychologists, physical and/or occupational therapists, and, when necessary, nephrologists, gastroenterologists, and dietitians who have expertise and interest in comprehensively treating people with SB using the Guidelines for the Care of People with Spina Bifida.

Standard 5: Care is coordinated and integrated for each patient, through designated personnel available five days per week, during normal business hours.  In some practices, care coordination is shared among several staff.   If more than one person is named as a Care Coordinator, please describe the roles of each person.  Coordination of care includes, but is not limited to:

  • Communication among providers of care, including the primary care physician, so that care planned and executed between the providers and the patient/family is integrated.
  • Creation of a written plan of care between the person with SB/their family, and the healthcare team.
  • Follow-up on medical testing – scheduling tests, obtaining results, communicating results to the provider, and other relevant steps.
  • Triage of patient calls.
  • Plan for interprofessional training with a care coordination curriculum so that all members of the care team—including the patient and family—understand the importance of care coordination and why it is not the same as care provision.
  • Incorporation of performance measures of care coordination and care integration.
  • Development of a mechanism to receive and address urgent and emergency calls and care during non-business hours.

Standard 6: The clinic engages in an activity that either promotes knowledge about the care of people with SB, or promotes the improvement of care for people with SB, or both.

Standard 7: If the clinic serves newborns, within one year of this application if a new application, the clinic has or will be working to establish, a relationship with the department where SB diagnoses are made. The relationship will include consultation with the family receiving the diagnosis in a standardized way, e.g., using SBA’s Diagnosis to Birth + 3 Months Care Plan in development.

Standard 8 The clinic agrees to create a Patient/Family Advisory Committee (PFAC) which includes patients with SB and their families, and convene it within one year of this application, if a newly established partnership. The PFAC will meet regularly with support of clinic staff, and will advise the clinic of patient/family experiences and improvement opportunities. Members of the PFAC should represent ethnic diversity, geographic distribution and treatment modalities.

Standard 9: The clinic’s program for transition preparation and execution is documented within one year of this application.

Standard 10: The clinic will establish a bowel management program informed by SBA’s Lifespan Bowel Management Protocol (LBMP), and will designate staff to oversee its implementation.

Standard 11: Patient care is informed by comprehensive evaluation of the patient’s individual cognitive strengths and weaknesses (e.g., memory, executive functioning, visuospatial processing, speed of processing, etc.).  Provider knowledge of the patient’s unique cognitive strengths and weaknesses informs intervention, patient education, and transition planning.

  • It is recommended that individuals with SB undergo neuropsychological evaluation at least once before age 17, with consideration of neuropsychological evaluation at other key transition periods as well (e.g., kindergarten, fourth grade, middle school, etc.).
  • Ideally, neuropsychological testing report(s) should be reviewed by the SB care team and used to inform care. The clinic should also have a consultative relationship with a neuropsychologist familiar with SB who can support the integration of the findings into the provision of care.

Standard 12: The Spina Bifida Collaborative Care Network (SBCCN) works to improve the lives of people living with SB. This network includes people with SB, clinics, healthcare professionals, SBA Chapters, and SBA. The clinic must have an active relationship with SBA. The clinic exemplifies this relationship through two of the following means:

  • Using relevant resources developed by SBA and connecting patients to these resources.
  • Providing a speaker for at least one SBA educational program.
  • Participating on a committee or task force of the SBA.
  • Participating in SBA activities such as: Walk-N-Roll for Spina Bifida, Teal on the Hill, Awareness Month, Education Events World Congress on Spina Bifida Research and Care, and Clinical Care Meeting.
  • Joining and participating in both of SBA’s listservs: SB Researchers and Health Care Professionals, and SBA Clinic Care Partners.

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