title: Adults with spina bifida and/or hydrocephalus.
abstract: Recent advances in medical technology enable many children with complex disabilities to survive into adulthood and to have certain expectations of life. One of these expectations is the continuity of specialist health care in an adult setting. This paper describes a new out-patient service which aims to provide optimum care, continuity and consistency of service for adults with spina bifida and/or hydrocephalus. The need for specialist health input into this service, in order to monitor the neurological, urological and psychosocial complications often associated with spina bifida and/or hydrocephalus is recognised. In one year (1992), 86 young adults with spina bifida and/or hydrocephalus attended for annual or more frequent assessment, either independently or with their families or carers. A variety of health and social problems were treated. In response to demand, a multi-disciplinary assessment unit, which includes the services of both medical and nursing specialists, occupational and physiotherapists, psychologists and access to specialist surgical opinions has recently opened at the Chelsea and Westminster Hospital. This new service attempts to meet some of the needs described in the outpatient audit. Adults with other disabilities are requesting to use this service. A longitudinal study to monitor quality, and outcome is indicated from this initial survey.
authors.affiliation: Chelsea and Westminster Hospital, London, UK.
authors.forename: D J
authors.initials: DJ
authors.lastname: Morgan
authors.forename: M
authors.initials: M
authors.lastname: Blackburn
authors.forename: M
authors.initials: M
authors.lastname: Bax
mesh_terms: D000328:Adult; D000553:Ambulatory Care / Q000458:organization & administration; D001519:Behavior; D003266:Continuity of Patient Care; D005260:Female; D006760:Hospitalization; D006801:Humans; D006849:Hydrocephalus / Q000150:complications / Q000534:rehabilitation*; D008131:London; D008297:Male; D010044:Outpatient Clinics, Hospital / Q000458:organization & administration*; D010342:Patient Acceptance of Health Care; D010348:Patient Care Team; D017060:Patient Satisfaction; D016135:Spinal Dysraphism / Q000150:complications / Q000534:rehabilitation*; D014549:Urinary Incontinence / Q000209:etiology