Beyond multidisciplinary care: a new conceptual model for spina bifida services

Area of Science:

• Medical rehabilitation
• Spina bifida care
• Disability studies

Background:

• Multidisciplinary care is the standard for spina bifida, but may not fully optimize health and function.
• Advances in medical/surgical management and societal inclusion increase expectations for functional improvement.
• Integrating rehabilitation services into existing spina bifida programs presents challenges of complexity and fragmentation.

Purpose of the Study:

• To propose a novel model for integrated medical and rehabilitation services for individuals with spina bifida across the lifespan.
• To address the fragmentation and complexity in current spina bifida care models.
• To enhance health, function, and participation for people with spina bifida.

Main Methods:

• Conducted a MEDLINE literature search on integrating medical and rehabilitation services for spina bifida.
• Developed a new conceptual model for spina bifida services.
• Utilized the WHO framework (ICIDH-2) for coding disability, incorporating health, function, and participation.

Main Results:

• Limited literature exists on integrating medical and rehabilitation services for spina bifida.
• A new model emphasizing comprehensiveness, coordination, and longitudinality was developed.
• The model incorporates anticipatory guidance and transitional planning.

Conclusions:

• The proposed integrated model aims to improve the efficiency and effectiveness of spina bifida services.
• This lifespan approach seeks to better meet the complex needs of individuals with spina bifida.
• The model provides a framework for developing standards of care and policies.