Adults with spina bifida and/or hydrocephalus

Area of Science:

• Neuroscience
• Urology
• Psychology
• Rehabilitation Medicine

Background:

• Advances in medical technology allow individuals with complex disabilities, including spina bifida and hydrocephalus, to survive into adulthood.
• There is a recognized need for continued specialist healthcare and consistent service provision for adults with these conditions.
• Young adults with spina bifida and/or hydrocephalus often face neurological, urological, and psychosocial complications requiring ongoing management.

Purpose of the Study:

• To describe a new outpatient service designed to offer optimum care, continuity, and consistency for adults with spina bifida and/or hydrocephalus.
• To address the health and social problems identified in young adults with these conditions.
• To establish a multidisciplinary assessment unit to meet the complex needs of this patient population.

Main Methods:

• An audit of 86 young adults with spina bifida and/or hydrocephalus attending annual or more frequent assessments in 1992.
• Establishment of a multidisciplinary assessment unit at Chelsea and Westminster Hospital.
• Inclusion of medical and nursing specialists, therapists (occupational and physiotherapy), psychologists, and surgical opinions.

Main Results:

• The service treated a variety of health and social problems in the audited patient group.
• A multidisciplinary assessment unit has been established in response to demand.
• Adults with other disabilities are also seeking to utilize this service.

Conclusions:

• The new multidisciplinary outpatient service aims to meet the identified healthcare needs of adults with spina bifida and/or hydrocephalus.
• The service provides a comprehensive approach by integrating various specialist inputs.
• A longitudinal study is indicated to monitor the quality and outcomes of this new service.