Related Experiment Video
Updated: Feb 1, 2026
Author Spotlight: Evaluating Clinicians' Adoption of Ultrasound-Guided Vascular Cannulation Through Simulation Training
Published on: August 9, 2024
The development of a lifetime care model in comprehensive spina bifida care
Betsy Hopson1, Brandon G Rocque2, David B Joseph3
1Spina Bifida Program, Children's of Alabama, University of Alabama at Birmingham, Birmingham, AL, USA.
Insights
Children
Area of Science:
- Pediatric Medicine
- Neurology
- Healthcare Management
Background:
- Limitations in lifelong care access for Spina Bifida (SB) patients identified.
- Need for a standardized, interdisciplinary approach to SB care across all life stages.
Purpose of the Study:
- To describe the development and implementation of the Children's of Alabama (COA) Spina Bifida (SB) Lifetime-Care-Model.
- To incorporate standardized care protocols and a seamless transition plan for SB patients.
Main Methods:
- Evaluation of care limitations through clinic surveys, observations, and caregiver reports.
- Development and implementation of a Lifetime-Care-Model with interdisciplinary partnerships.
- Evolution of the program to include standardized care protocols since inception.
Main Results:
- Since 2011, 42 prenatal clinics held, with 114 families receiving counseling and prenatal care.
- 106 deliveries at the center resulted in established pediatric care.
- Current patient numbers: 474 in pediatric and 218 in adult clinics.
Conclusions:
- Continuity of care throughout a patient's lifetime significantly benefits individuals with Spina Bifida.
- The COA Lifetime-Care-Model demonstrates successful evolution from early challenges to a comprehensive care system.
- This model provides a framework for other institutions to adapt and create tailored SB care programs.
Purpose:
To describe the development and implementation of the Children's of Alabama (COA) Spina Bifida (SB) Lifetime-Care-Model, including standardized care protocols and transition plan.
Methods:
In 2010, members of the pediatric team at COA began to evaluate limitations in access to care for patients with SB at various stages of life. Through clinic surveys, observations, and caregiver report, a Lifetime-Care-Model was developed and implemented. Partnerships were made with adult medicine colleagues to create an interdisciplinary model at each stage. Since developing this program, it has evolved to include standardized care protocols.
Results:
Since 2011, there have been 42 prenatal clinics; 114 families received counseling and prenatal care. Of these, 106 have delivered at our center and established care in our pediatric clinic. There are currently 474 patients in the pediatric and 218 in the adult clinics.
Conclusions:
Our institutional experience suggests that patients with SB benefit from continuity of care throughout their lifetime. This article describes early failures which led to an evolution in approach and implementation of a Lifetime-Care-Model which results in a smooth transition between all phases of life. We hope that other institutions may adapt and build upon it to create programs unique to their specific patient needs.
Related Concept Videos
01:21Interdisciplinary Care: The Health Care Team-I
Physicians
The physician's primary responsibility is to diagnose illness and direct the medical or surgical treatment of the condition. The authority to admit patients to a healthcare agency or institution and practice care within that setting is granted to physicians by the healthcare agency or institution...
01:18Interdisciplinary Care: The Health Care Team-II
Physical Therapist
A physical therapist (PT) aims to restore function or prevent additional impairment in a patient following an injury or disease. Massage, heat, cold, water, sonar waves, exercises, and electrical stimulation are some treatments used by PTs to treat...
01:25Continuing Care
01:22Standards of Care I
01:24Ostomy Care
An ostomy is a surgical procedure that creates an artificial opening from the intestines to the outside of the body, allowing for the rerouting of effluent. This opening is known as a stoma. A stoma usually protrudes above the skin surface, appearing pink or red, moist, and round, and it lacks nerve sensations.
There are different types of ostomies, including colostomies, ileostomies, and urostomies:
01:19Standards of Care II