{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,9,10]],"date-time":"2025-09-10T22:14:39Z","timestamp":1757542479090},"reference-count":14,"publisher":"Oxford University Press (OUP)","issue":"831","license":[{"start":{"date-parts":[[1995,1,1]],"date-time":"1995-01-01T00:00:00Z","timestamp":788918400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/pages\/standard-publication-reuse-rights"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[1995,1,1]]},"abstract":"<jats:title>Summary<\/jats:title>\n               <jats:p>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.<\/jats:p>","DOI":"10.1136\/pgmj.71.831.17","type":"journal-article","created":{"date-parts":[[2008,12,29]],"date-time":"2008-12-29T21:25:21Z","timestamp":1230585921000},"page":"17-21","source":"Crossref","is-referenced-by-count":20,"title":["Adults with spina bifida and\/or hydrocephalus"],"prefix":"10.1093","volume":"71","author":[{"given":"D J R","family":"Morgan","sequence":"first","affiliation":[{"name":"Chelsea and Westminster Hospital , London SW10 , UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"M","family":"Blackburn","sequence":"additional","affiliation":[{"name":"Chelsea and Westminster Hospital , London SW10 , UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"M","family":"Bax","sequence":"additional","affiliation":[{"name":"Chelsea and Westminster Hospital , London SW10 , UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"286","published-online":{"date-parts":[[1995,1,1]]},"reference":[{"key":"ref_1","article-title":"The health and social needs of young adults with physical disabilities","author":"Thomas, A.P.; Bax, M.C.O.; Smyth, D.P.L.","year":"1989","unstructured":"Thomas AP, Bax MCO, Smyth DPL. The health and social needs of young adults with physical disabilities. Oxford: Mac Keith Press, Blackwells S-ientific Publications, 1989."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"1040","DOI":"10.1136\/bmj.283.6298.1040","article-title":"The young adult with spina bifida","volume":"283","author":"Castree, B.J.; Walker, J.H.","year":"1981","unstructured":"Castree BJ, Walker JH. The young adult with spina bifida. BMJ 1981; 283: 1040-2.","journal-title":"BMJ"},{"key":"ref_3","article-title":"Incidence of spina bifida on Family Fund Register: year of birth 1957-1991","author":"Lawton, D.","year":"1992","unstructured":"Lawton D. Incidence of spina bifida on Family Fund Register: year of birth 1957-1991. York: Family Fund, 1992."},{"key":"ref_4","article-title":"An assessment of health and related needs of physically handicapped young adults","author":"Chamberlain, M.A.; Guthrie, S.; Kettle, M.; Stowe, J.","year":"1993","unstructured":"Chamberlain MA, Guthrie S, Kettle M, Stowe J. An assessment of health and related needs of physically handicapped young adults. London: DOH, 1993."},{"key":"ref_5","article-title":"Last on the list: community services for people with physical disabilities","author":"Beardshaw, V.","year":"1991","unstructured":"Beardshaw V. Last on the list: community services for people with physical disabilities. London: Kings Fund Institute, 1991."},{"key":"ref_6","first-page":"169","article-title":"The effects of spina bifida upon learning and behaviour","volume-title":"Current concepts in spina bifida and hydrocephalus","author":"Tew, B.","year":"1991","unstructured":"Tew B. The effects of spina bifida upon learning and behaviour. In: Bannister CM, Tew B, eds. Current concepts in spina bifida and hydrocephalus. Oxford: Mac Keith Press, Blackwell Scientific Publications, 1991; p 169."},{"key":"ref_7","article-title":"Abuse of children with disabilities","author":"Westcott, H.","year":"1993","unstructured":"Westcott H. Abuse of children with disabilities. NSPCC Policy & Practice Research Series, 1993.","journal-title":"NSPCC Policy & Practice Research Series"},{"issue":"1","key":"ref_8","first-page":"39","article-title":"Sex education provision for young adults with spina bifida and hydrocephalus: evaluation of a pilot training video","volume":"2","author":"Blackburn, M.C.; Bax, M.C.O.","year":"1992","unstructured":"Blackburn MC, Bax MCO. Sex education provision for young adults with spina bifida and hydrocephalus: evaluation of a pilot training video. Eur J Paediatr Surg 1992; 2 (suppl 1): 39-40.","journal-title":"Eur J Paediatr Surg"},{"issue":"2","key":"ref_9","first-page":"22","article-title":"Myths and facts about sexual abuse and children with disabilities","volume":"5","author":"Marchant, R.","year":"1991","unstructured":"Marchant R. Myths and facts about sexual abuse and children with disabilities. Child Abuse Rev 1991; 5(2): 22-4.","journal-title":"Child Abuse Rev"},{"issue":"2","key":"ref_10","first-page":"129","article-title":"Continuity and change in medical care for young adults with disabilities","volume":"21","author":"Parker, G.; Hirst, M.","year":"1987","unstructured":"Parker G, Hirst M. Continuity and change in medical care for young adults with disabilities. JR Coll Physicians 1987; 21(2): 129.","journal-title":"JR Coll Physicians"},{"key":"ref_11","article-title":"Report on the Newcastle young adult clinic for the disabled. Newcastle upon Tyne","author":"Robson, B.J.","year":"1982","unstructured":"Robson BJ. Report on the Newcastle young adult clinic for the disabled. Newcastle upon Tyne. Department of Orthopaedics, Freeman Hospital, 1982."},{"key":"ref_12","article-title":"Unequal opportunities: growing up disabled","author":"Hurst, M.A.; Baldwin, S.M.","year":"1994","unstructured":"Hurst MA, Baldwin SM. Unequal opportunities: growing up disabled. HMSO 1994. ISBN 0117018287."},{"key":"ref_13","article-title":"Parents perceptions and needs in supporting the young adult with spina bidfida and\/or hydrocephalus. Link (Journal for people with spina bifida and\/or hydrocephalus)","author":"Blackburn, M.C.","year":"1994","unstructured":"Blackburn MC. Parents perceptions and needs in supporting the young adult with spina bidfida and\/or hydrocephalus. Link (Journal for people with spina bifida and\/or hydrocephalus) 1994; Oct\/Nov."},{"key":"ref_14","first-page":"341","article-title":"The functional assessment measures in medical rehabilitation: current staus","volume":"65","author":"Keith, R.A.","year":"1984","unstructured":"Keith RA. The functional assessment measures in medical rehabilitation: current staus. Arch Phys Med Rehabil 1984; 65: 341-5.","journal-title":"Arch Phys Med Rehabil"}],"container-title":["Postgraduate Medical Journal"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/pmj\/article-pdf\/71\/831\/17\/50218766\/postgradmedj-71-17.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/pmj\/article-pdf\/71\/831\/17\/50218766\/postgradmedj-71-17.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,5,10]],"date-time":"2023-05-10T22:04:05Z","timestamp":1683756245000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/pmj\/article\/71\/831\/17\/7044150"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[1995,1,1]]},"references-count":14,"journal-issue":{"issue":"831","published-online":{"date-parts":[[1995,1,1]]},"published-print":{"date-parts":[[1995,1,1]]}},"URL":"https:\/\/doi.org\/10.1136\/pgmj.71.831.17","relation":{},"ISSN":["0032-5473","1469-0756"],"issn-type":[{"value":"0032-5473","type":"print"},{"value":"1469-0756","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[1995,1]]},"published":{"date-parts":[[1995,1,1]]}}}