Factors predicting mortality in midlife adults with and without Down syndrome living with family

Journal of Intellectual Disability Research

Volumn 51, Issue 12, 2007, Pages 1039-1050

  Esbensen, Anna J ^a   Seltzer, M M ^a   Greenberg, J S ^a  

^a UNIVERSITY OF WISCONSIN MADISON   (United States)

Author keywords

Down syndrome; Family; Intellectual disability; Mortality

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; BEHAVIOR DISORDER; CARDIOVASCULAR DISEASE; CAUSE OF DEATH; CONTROLLED STUDY; DEMOGRAPHY; DOWN SYNDROME; FAMILY; FEMALE; FUNCTIONAL STATUS; HOME; HUMAN; MAJOR CLINICAL STUDY; MALE; MENTAL DEFICIENCY; MORTALITY; PREDICTION; RESPIRATORY TRACT DISEASE; RISK FACTOR;

ADULT; DOWN SYNDROME; FAMILY; FEMALE; HEALTH STATUS; HUMANS; LONGITUDINAL STUDIES; MALE; PREVALENCE; PROSPECTIVE STUDIES; PSYCHOLOGY; RESIDENCE CHARACTERISTICS;

EID: 35948976134     PISSN: 09642633     EISSN: 13652788     Source Type: Journal    
DOI: 10.1111/j.1365-2788.2007.01006.x     Document Type: Article

References (53)

1. Bittles A. H., Petterson B. A., Sullivan S. G., Hussain R., Glasson E. J. & Montgomery P. D. (2002) The influence of intellectual disability on life expectancy. Journal of Gerontology Medical Sciences 57A, M470-M472.
2. Borthwick-Duffy S., Widaman K. F. & Grossman H. J. (1998) Mortality research, placement, and risk of death: Basic research, the media, and public policy. Mental Retardation 36, 416-22.
3. Bruininks R. H., Woodcock R. W., Weatherman R. E. & Hill B. K. (1996) Scales of Independent Behavior - Revised Comprehensive Manual. Riverside Publishing, Itasca, IL.
4. Burack J. A., Iarocci G., Flanagan T. D. & Bowler D. M. (2004) On mosaics and melting pots: Conceptual considerations of comparison and matching strategies. Journal of Autism and Developmental Disorders 34, 65-73.
5. Bäckman L. & MacDonald S. W. S. (2006) Death and cognition: synthesis and outlook. European Psychologist 11, 224-35.
6. Canfield M. A., Honein M. A., Yuskiv N., Xing J., Mai C. T., Collins J. S. et al. (2006) National estimates and race/ethnic-specific variation of selected birth defects in the United States, 1999-2001. Birth Defects Research (Part A): Clinical and Molecular Teratology 76, 747-56.
7. Carter G. & Jancar J. (1983) Mortality in the mentally handicapped: a 50 year survey at the Stoke Park group of hospitals (1930-1980). Journal of Mental Deficiency Research 27, 143-56.
8. Chaney R. H. & Eyman R. K. (2000) Patterns in mortality over 60 years among persons with mental retardation in a residential facility. Mental Retardation 38, 289-93.
9. Conroy J. W. & Adler M. (1998) Mortality among Pennhurst class members, 1978 to 1989: A brief report. Mental Retardation 36, 380-5.
10. Day S. M., Strauss D. J., Shavelle R. M. & Reynolds R. J. (2005) Mortality and causes of death in persons with Down syndrome in California. Developmental Medicine and Child Neurology 47, 171-6.
11. Durvasula S., Beange H. & Baker W. (2002) Mortality of people with intellectual disability in northern Sydney. Journal of Intellectual and Developmental Disability 27, 255-64.
12. Eyman R. K., Call T. L. & White J. F. (1989) Mortality of elderly mentally retarded persons in California. Journal of Applied Gerontology 8, 203-15.
13. Eyman R. K., Call T. L. & White J. F. (1991) Life expectancy of persons with Down syndrome. American Journal on Mental Retardation 95, 603-12.
14. Faul F., Erdfelder E., Lang A.-G. & Buchner A. (2007) G*Power 3: A flexible statistical power analysis program for the social, behavioral, and biomedical sciences. Behavior Research Methods 39, 175-91.
15. Friedman J. M. (2001) Racial disparities in median age at death of persons with Down syndrome -United States, 1968-1997. Morbidity and Mortality Weekly Report 50, 463-5.
16. Fujiura G. T. (1998) Demography of family households. American Journal on Mental Retardation 103, 225-35.
17. Glasson E. J., Sullivan S. G., Hussain R., Petterson B. A., Montgomery P. D. & Bittles A. H. (2002) The changing survival profile of people with Down's syndrome: Implications for genetic counselling. Clinical Genetics 62, 390-3.
18. Glasson E. J., Sullivan S. G., Hussain R., Petterson B. A., Montgomery P. D. & Bittles A. H. (2003) Comparative survival advantage of males with Down syndrome. American Journal of Human Biology 15, 192-5.
19. Hasle H., Clemmensen I. H. & Mikkelsen M. (2000) Risks of leukaemia and solid tumors in individuals with Down's syndrome. Lancet 355, 165-9.
20. Haveman M., Maaskant M. A. & Sturmans F. (1989) Older Dutch residents of institutions, with and without Down syndrome: Comparisons of mortality and morbidity trends and motor/social functioning. Australia and New Zealand Journal of Development Disabilities 15, 241-55.
21. Hayden M. F. (1998) Mortality among people with mental retardation living in the United States: Research review and policy application. Mental Retardation 36, 345-59.
22. Hermon C., Alberman E., Beral V. & Swerdlow A. J. (2001) Mortality and cancer incidence in persons with Down's syndrome, their parents and siblings. Annals of Human Genetics 65, 167-76.
23. Hill D. A., Gridley G., Cnattingius S., Mellemkjaer L., Linet M., Adami H.-O. et al. (2003) Mortality and cancer incidence among individuals with Down syndrome. Archives of Internal Medicine 163, 705-11.
24. Idler E. L. & Benyamini Y. (1997) Self-rated health and mortality: A review of twenty-seven community studies. Journal of Health and Social Behavior 38, 21-37.
25. Janicki M. P., Dalton A. J., Henderson C. M. & Davidson P. W. (1999) Mortality and morbidity among older adults with intellectual disability: health services considerations. Disability and Rehabilitation 21, 284-94.
26. Kapell D., Nightingale B., Rodriguez A., Lee J. H., Zigman W. B. & Schupf N. (1998) Prevalences of chronic medical conditions in adults with mental retardation: Comparison with the general population. Mental Retardation 36, 269-79.
27. Krauss M. W. & Seltzer M. M. (1999) An unanticipated life: The impact of lifelong caregiving. In: Responding to the Challenge: International Trends and Current Issues in Developmental Disabilities (ed. H. Bersani), pp. 173-87. Brookline Books, Brookline, MA.
28. Lantman-de Valk H. M. J., Haveman M. J. & Crebolder H. F. J. M. (1996) Comorbidity in people with Down's syndrome: A criteria-based analysis. Journal of Intellectual Disability Research 40, 385-99.
29. Lempinen E. W. (1997). Disabled -on the Edge. Push for Living Independently Promises Freedom, Poses Dangers. San Francisco Chronicle, 10 November, A1.
30. Lerman P., Apgar D. H. & Jordan T. (2003) Deinstitutionalization and mortality: Findings of a controlled research design in New Jersey. Mental Retardation 41, 225-36.
31. Maaskant M. A., Gevers J. P. M. & Wierda H. (2002) Mortality and life expectancy in Dutch residential centres for individuals with intellectual disability, 1991-1995. Journal of Applied Research in Intellectual Disabilities 15, 200-12.
32. McGrother C. W., Bhaumik S., Thorp C. F., Hauck A., Branford D. & Watson J. M. (2006) Epilepsy in adults with intellectual disabilities: prevalence, associations and service implications. Seizure 15, 376-86.
33. Mahoney F. E. & Barthel D. W. (1965) Functional evaluation: The Barthel index. Maryland State Medical Journal 14, 61-5.
34. Patja K., MölsäP. & Iivanainen M. (2001a) Cause-specific mortality of people with intellectual disability in a population-based, 35 year follow-up study. Journal of Intellectual Disability Research 45, 30-40.
35. Patja K., Eero P. & Iivanainen M. (2001b) Cancer incidence among people with intellectual disability. Journal of Intellectual Disability Research 45, 300-7.
36. Patti P. J., Amble K. B. & Flory M. J. (2005) Life events in older adults with intellectual disabilities: Differences between adults with and without Down syndrome. Journal of Policy and Practice in Intellectual Disabilities 2, 149-55.
37. Roizen N. J. (1996) Down syndrome and associated medical disorders. Mental Retardation and Developmental Disabilities Research Reviews 2, 85-9.
38. Schupf N., Zigman W., Kapell D., Lee J. H., Kline J. & Levin B. (1997) Early menopause in women with Down's syndrome. Journal of Intellectual Disability Research 41, 264-7.
39. Seltzer M. M. & Krauss M. W. (1994) Aging parents with co-resident adult children: The impact of lifelong caregiving. In: Life Course Perspectives on Adulthood and Old Age (eds M. M. Seltzer, M. W. Krauss & M. P. Janicki), pp. 3-18. American Association on Mental Retardation, Washington, DC.
40. Seltzer M. M., Ivry J. & Litchfield L. C. (1987) Family members as case managers: Partnership between the formal and informal support networks. The Gerontologist 27, 722-8.
41. Shavelle R. M., Strauss D. J. & Pickett J. (2001) Causes of death in autism. Journal of Autism and Developmental Disorders 31, 569-76.
42. Strauss D. & Eyman R. K. (1996) Mortality of people with mental retardation in California with and without Down syndrome, 1986-1991. American Journal on Mental Retardation 100, 643-53.
43. Strauss D. & Kastner T. A. (1996) Comparative mortality of people with mental retardation in institutions and the community. American Journal on Mental Retardation 101, 26-40.
44. Strauss D. & Zigman W. B. (1996) Behavioral capabilities and mortality risk in adults with and without Down syndrome. American Journal on Mental Retardation 101, 269-81.
45. Strauss D., Shavelle R., Baumeister A. & Anderson T. W. (1998a) Mortality in persons with developmental disabilities after transfer into community care. American Journal on Mental Retardation 102, 569-81.
46. Strauss D., Kastner T. A. & Shavelle R. (1998b) Mortality of adults with developmental disabilities living in California institutions and community care, 1985-1994. Mental Retardation 36, 360-71.
47. Strauss D., Anderson T. W., Shavelle R., Sheridan F. & Trenkle S. (1998c) Causes of death of persons with developmental disabilities: comparison of institutional and community residents. Mental Retardation 36, 386-91.
48. Sullivan S. G., Hussain R., Glasson E. J. & Bittles A. H. (2007) The profile and incidence of cancer in Down syndrome. Journal of Intellectual Disability Research 51, 228-31.
49. Taylor S. J. (1998) The editor's perspective. Mental Retardation 36, 392-4.
50. Thase M. E. (1982) Longevity and mortality in Down's syndrome. Journal of Mental Deficiency Research 26, 177-92.
51. Tyrer F., Smith L. K. & McGrother C. W. (2007) Mortality in adults with moderate to profound intellectual disability: A population-based study. Journal of Intellectual Disability Research 51, 520-7.
52. United States Census Bureau (2007) U.S. Census Bureau: State and County Quick Facts. Available at: http://quickfacts.census.gov/qfd/states/ 25000.html and http://quickfacts.census.gov/qfd/states/55000.html (retrieved 2 August 2007).
53. Yang Q., Rasmussen S. A. & Friedman J. M. (2002) Mortality associated with Down's syndrome in the USA from 1983 to 1997: A population-based study. Lancet 359, 1019-25.