Policy, service pathways and mortality: A 10-year longitudinal study of people with profound intellectual and multiple disabilities

Journal of Intellectual Disability Research

Volumn 51, Issue 5, 2007, Pages 366-376

  Hogg, J ^a   Juhlberg, K ^a   Lambe, L ^a  

^a UNIVERSITY OF DUNDEE   (United Kingdom)

Author keywords

Longitudinal study; Mortality; Multiple disabilities; Profound intellectual disability; Services

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; CAUSE OF DEATH; COMMUNITY CARE; DISABILITY; DYSPHAGIA; EPILEPSY; FAMILY COUNSELING; FEMALE; FOLLOW UP; HEALTH CARE DELIVERY; HEALTH CARE POLICY; HEALTH SURVEY; HEARING ACUITY; HUMAN; INTELLECTUAL IMPAIRMENT; INTERPERSONAL COMMUNICATION; LONGITUDINAL STUDY; MAJOR CLINICAL STUDY; MALE; MORTALITY; MOTOR PERFORMANCE; NONVERBAL COMMUNICATION; NURSING HOME; RESIDENTIAL HOME; RESPIRATORY TRACT DISEASE; SELF HELP; SURVIVOR; UNITED KINGDOM; VISUAL ACUITY;

ABNORMALITIES, MULTIPLE; ADOLESCENT; ADULT; COHORT STUDIES; FEMALE; FOLLOW-UP STUDIES; HUMANS; MALE; MENTAL RETARDATION; PILOT PROJECTS; PREVALENCE; PUBLIC POLICY; QUESTIONNAIRES; RESIDENTIAL FACILITIES; RESIDENTIAL TREATMENT; SELF EFFICACY; SEVERITY OF ILLNESS INDEX; SOCIAL SUPPORT;

EID: 33947645888     PISSN: 09642633     EISSN: 13652788     Source Type: Journal    
DOI: 10.1111/j.1365-2788.2006.00884.x     Document Type: Article

References (35)

1. Blair E., Watson L., Badawi N. & Stanley F. J. (2001) Life expectancy among people with cerebral palsy in Western Australia. Developmental Medicine and Child Neurology 43, 508-13.
2. Chaney R. H. & Eyman R. K. (2000) Patterns of mortality over 60 years among persons with mental retardation in a residential facility. Mental Retardation 38, 289-93.
3. Corry P. C. (2002) Intellectual disability and cerebral palsy in a UK community. Community Genetics 5, 201-4.
4. Day S., Strauss D., Shavelle R. & Wu Y. W. (2003) Excess mortality in remote symptomatic epilepsy. Journal of Insurance Medicine (Seattle) 35, 155-60.
5. Department of Health (1989) Caring for People: Community Care in the Next Decade and Beyond. Department of Health, London.
6. Dunteman G. H. (1989) Principal Components Analysis: Quantitative Applications in the Social Sciences. Sage University Paper 69. Sage, London.
7. Durvasula S., Beange H. & Baker W. (2002) Mortality of people with intellectual disability in northern Sydney. Journal of Intellectual Disability Research 27, 255-64.
8. Eyman R. K., Grossman H. J., Chaney R. H. & Call T. L. (1990) The life expectancy of profoundly handicapped people with mental retardation. New England Journal of Medicine 323, 584-9.
9. Forsgren L., Edvinsson S. O., Nystrom L. & Blomquist H. K. (1996) Influence of mortality in mental retardation: An epidemiologic study. Epilepsia 37, 956-63.
10. Fryers T. (1984) The Epidemiology of Severe Intellectual Impairment. Academic Press, London.
11. Hatton C., Emerson E., Robertson J., Gregory N., Kessissoglou S., Perry J., Felce D., Lowe K., Walsh P., Lineham C. & Hillery J. (2001) The adaptive behavior scale-residential and community (part I): Towards the development of a short form. Research in Developmental Disabilities 22, 273-88.
12. Hogg J. & Lambe L. (1988) Sons and Daughters with Profound Retardation and Multiple Handicaps Attending Schools and Social Education Centres: Final Report. Mencap, London.
13. Hollins S., Attard M. T., von Fraunhofer N., McGuigan S. & Sedgwick P. (1998) Mortality in people with learning disability: Risks, causes, and death certification findings in London. Developmental Medicine and Child Neurology 40, 50-6.
14. Kastner T., Nathanson R. & Friedman D. (1993) Mortality among individuals with mental retardation living in the community. American Journal of Mental Retardation 98, 285-92.
15. McGrother C., Thorp C., Taub N. & Machado O. (2001) Prevalence, disability and need in adults with severe learning disabilities. Tizard Learning Disability Review 6, 4-13.
16. Menard S. (1995) Applied Logistic Regression Analysis: Quantitative Applications in the Social Sciences. Sage University Paper 106. Sage, London.
17. Miles J. & Shevlin M. (2001) Applying Regression and Correlation: A Guide for Students and Researchers. Sage, London.
18. Morgan C. I., Baxter H. & Kerr M. P. (2003) Prevalence of epilepsy and associated health service utilization and mortality among patients with intellectual disability. American Journal of Mental Retardation 108, 293-300.
19. Nakken H. & Vlaskamp C. (2002) Joining forces: Supporting individuals with profound multiple learning disabilities. Tizard Learning Disability Review 7, 10-15.
20. Office for National Statistics (2004a) Key Population and Vital Statistics: Local and Health Authorities. The Stationary Office, Norwich.
21. Office for National Statistics (2004b) National Statistics: Regional Trends 2004 Edition, No. 38. The Stationary Office, Norwich.
22. Patja K., Iivanainen P. K., Vesala H., Oksanen H. & Ruoppila I. (2000) Life expectancy of people with intellectual disability: A 35-year follow-up study. Journal of Intellectual Disability Research 44, 591-9.
23. Patja K., Molsa P. & Iivanainen M. (2001) Cause specific mortality of people with intellectual disability in a population-based, 35-year old follow-up study. Journal of Intellectual Disability Research 45, 30-40.
24. Rumeau-Rouquette C., du Mazaubrun C., Cans C. & Grandjean H. (1998) Définition et prevalence des polyhandicaps àl'âge scolaire. Archive Pédiatrice 5, 739-44.
25. Schaie K. W. (ed.) (1983) Longitudinal Studies of Adult Psychological Development. New York, Guilford.
26. Scottish Executive (2000) The Same As You? A Review of Services for People with Learning Disabilities. Scottish Executive, Edinburgh.
27. Scottish Executive (2002a) Care Homes for People with Learning Disabilities: National Care Standards. Scottish Executive, Edinburgh.
28. Scottish Executive (2002b) Day Care (Support) Services: National Care Standards. Scottish Executive, Edinburgh.
29. Scottish Executive (2002c) Promoting Health, Supporting Inclusion: The National Review of the Contribution of All Nurse and Midwives to the Care and Support of People with Learning Disability. Scottish Executive, Edinburgh.
30. Scottish Office (1994) Scottish Abstract of Statistics 1993. Government Statistical Service, Edinburgh.
31. Scottish Parliament Information Centre (1999) Care in the Community: Research Note 99/53. Scottish Parliament Information Centre, Edinburgh.
32. Singer R. B., Strauss D. & Shavelle R. (1998) Comparative mortality in cerebral palsy patients in California. Journal of Insurance Medicine (Seattle) 30, 240-6.
33. Strauss D., Ashwal S., Shavelle R. & Eyman R. K. (1997) Prognosis for survival and improvement in function in children with severe developmental disabilities. Journal of Pediatrics 131, 712-17.
34. Suzuki H., Sone S. & Hirayama Y. (2002) Mortality patterns of non-institutionalized severely retarded children in Tokyo. Brain and Development 34, 479-83.
35. World Health Organization (1992) International Statistical Classification of Diseases and Related Health Problems, 10th edn. World Health Organization, Geneva.