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BMC Neurology
Published in: BMC Neurology 1/2010

Open Access 01-12-2010 | Research article

Generic quality of life assessment in dementia patients: a prospective cohort study

Authors: Claudia Schiffczyk, Barbara Romero, Christina Jonas, Constanze Lahmeyer, Friedemann Müller, Matthias W Riepe

Published in: BMC Neurology | Issue 1/2010

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Abstract

Background

Quality of life (QoL) is increasingly used to characterize the impact of disease and the efficacy of interventions.

Methods

Prospective cohort study in patients' and proxies' homes with137 patients with dementia (age 52 to 88; Mini-Mental Status Examination (MMSE) 3 to 28) and their proxies (age 43 to 90). MMSE, Behave-AD, Geriatric Depression Scale (GDS), and Bayer-ADL scale (B-ADL), and the Euroqol (EQ-5D; patient self-rating, proxy self-rating, and proxy-rating of patient).

Results

B-ADL impairment and Behave-AD total score increased with dementia severity (Kruskal-Wallis p < 0.001 and p = 0.023, respectively). Patients' self-rated QoL and proxies' self-rated QoL were unrelated to dementia severity (p = 0.148 and p = 0.414, respectively). The difference between patients' self- and proxies'-rating of the patient's QoL correlated with the patient's MMSE (Spearman's rho = -0.434; p < 0.001), even if analysis was constrained to patients with mild AD (rho = -0.328; p = 0.019). The proxies' rating of the patients QoL was not only correlated with cognitive and behavioral symptoms of the patient but also with mood (GDS-score; rho = 0.317; p < 0.001) and cognitive abilities (verbal fluency; rho = 0.209; p < 0.018) of the proxy.

Conclusion

Proxies' assessment of the patients' QoL is related to the proxies' health, and the difference of patient's and proxie's QoL-rating is correlated with dementia severity even in mild dementia stages. QOL measures use ratings of the individual to assess the impact of symptoms and disorders on everyday life. In dementia patients, however, this impact is not captured since patients' and proxies' self-assessment of their own QoL do not reflect severity of disease whatsoever. Patients' and proxies' influencing variables render the score obtained with generic quality of life assessment meaningless in capturing the impact of dementia. Decisions on initiation or discontinuation of treatment or allocation of other resources for patients with dementia therefore need not depend on generic assessment of quality of life.
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Literature
1.
Erkinjuntti T, Ostbye T, Steenhuis R, Hachinski V: The effect of different diagnostic criteria on the prevalence of dementia. N Engl J Med. 1997, 337: 1667-1674. 10.1056/NEJM199712043372306.CrossRefPubMed
2.
Orley J, Saxena S, Herrman H: Quality of life and mental illness. Reflections from the perspective of the WHOQOL. Br J Psychiatry. 1998, 172: 291-293. 10.1192/bjp.172.4.291.CrossRefPubMed
3.
Lawton MP: Quality of life in Alzheimer disease. Alzheimer Dis Assoc Disord. 1994, 8 (Suppl 3): 138-50. 138-150.CrossRefPubMed
4.
Coons SJ, Rao S, Keininger DL, Hays RD: A comparative review of generic quality-of-life instruments. Pharmacoeconomics. 2000, 17: 13-35. 10.2165/00019053-200017010-00002.CrossRefPubMed
5.
Nemeth G: Health related quality of life outcome instruments. Eur Spine J. 2006, 15 (Suppl 1): S44-S51. 10.1007/s00586-005-1046-8.CrossRefPubMed
6.
Khanna D, Tsevat J: Health-related quality of life--an introduction. Am J Manag Care. 2007, 13 (Suppl 9): S218-S223.PubMed
7.
Rabins PV, Kasper JD: Measuring quality of life in dementia: conceptual and practical issues. Alzheimer Dis Assoc Disord. 1997, 11 (Suppl 6): 100-4. 100-104.PubMed
8.
Vogel A, Stokholm J, Gade A, Andersen BB, Hejl AM, Waldemar G: Awareness of deficits in mild cognitive impairment and Alzheimer's disease: do MCI patients have impaired insight?. Dement Geriatr Cogn Disord. 2004, 17: 181-187. 10.1159/000076354.CrossRefPubMed
9.
Hoe J, Katona C, Orrell M, Livingston G: Quality of life in dementia: care recipient and caregiver perceptions of quality of life in dementia: the LASER-AD study. Int J Geriatr Psychiatry. 2007, 22: 1031-1036. 10.1002/gps.1786.CrossRefPubMed
10.
Selwood A, Thorgrimsen L, Orrell M: Quality of life in dementia--a one-year follow-up study. Int J Geriatr Psychiatry. 2005, 20: 232-237. 10.1002/gps.1271.CrossRefPubMed
11.
Logsdon RG, Gibbons LE, McCurry SM, Teri L: Assessing quality of life in older adults with cognitive impairment. Psychosom Med. 2002, 64: 510-519.CrossRefPubMed
12.
Hoe J, Katona C, Roch B, Livingston G: Use of the QOL-AD for measuring quality of life in people with severe dementia--the LASER-AD study. Age Ageing. 2005, 34: 130-135. 10.1093/ageing/afi030.CrossRefPubMed
13.
Karlawish JH, Casarett D, Klocinski J, Clark CM: The relationship between caregivers' global ratings of Alzheimer's disease patients' quality of life, disease severity, and the caregiving experience. J Am Geriatr Soc. 2001, 49: 1066-1070. 10.1046/j.1532-5415.2001.49210.x.CrossRefPubMed
14.
Ready RE, Ott BR, Grace J: Patient versus informant perspectives of Quality of Life in Mild Cognitive Impairment and Alzheimer's disease. Int J Geriatr Psychiatry. 2004, 19: 256-265. 10.1002/gps.1075.CrossRefPubMed
15.
Zanetti O, Geroldi C, Frisoni GB, Bianchetti A, Trabucchi M: Contrasting results between caregiver's report and direct assessment of activities of daily living in patients affected by mild and very mild dementia: the contribution of the caregiver's personal characteristics. J Am Geriatr Soc. 1999, 47: 196-202.CrossRefPubMed
16.
Sands LP, Ferreira P, Stewart AL, Brod M, Yaffe K: What explains differences between dementia patients' and their caregivers' ratings of patients' quality of life?. Am J Geriatr Psychiatry. 2004, 12: 272-280.CrossRefPubMed
17.
Folstein MF, Folstein SE, McHugh PR: "Mini-mental state". A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975, 12: 189-198. 10.1016/0022-3956(75)90026-6.CrossRefPubMed
18.
Lezak M: Neuropsychological Assessment. 1995, New York, Oxford: Oxford University Press, 3
19.
Beinhoff U, Hilbert V, Bittner D, Gron G, Riepe MW: Screening for Cognitive Impairment: A Triage for Outpatient Care. Dement Geriatr Cogn Disord. 2005, 20: 278-285. 10.1159/000088249.CrossRefPubMed
20.
Reisberg B, Borenstein J, Salob SP, Ferris SH, Franssen E, Georgotas A: Behavioral symptoms in Alzheimer's disease: phenomenology and treatment. J Clin Psychiatry. 1987, 48 (Suppl): 9-15.PubMed
21.
Burke WJ, Roccaforte WH, Wengel SP: The short form of the Geriatric Depression Scale: a comparison with the 30-item form. J Geriatr Psychiatry Neurol. 1991, 4: 173-178. 10.1177/089198879100400310.CrossRefPubMed
22.
Burke WJ, Nitcher RL, Roccaforte WH, Wengel SP: A prospective evaluation of the Geriatric Depression Scale in an outpatient geriatric assessment center. J Am Geriatr Soc. 1992, 40: 1227-1230.CrossRefPubMed
23.
Burke WJ, Houston MJ, Boust SJ, Roccaforte WH: Use of the Geriatric Depression Scale in dementia of the Alzheimer type. J Am Geriatr Soc. 1989, 37: 856-860.CrossRefPubMed
24.
Hindmarch I, Lehfeld H, de JP, Erzigkeit H: The Bayer Activities of Daily Living Scale (B-ADL). Dement Geriatr Cogn Disord. 1998, 9 (Suppl 2): 20-26. 10.1159/000051195.CrossRefPubMed
25.
Rabin R, de CF: EQ-5D: a measure of health status from the EuroQol Group. Ann Med. 2001, 33: 337-343. 10.3109/07853890109002087.CrossRefPubMed
26.
Jonsson L, Andreasen N, Kilander L, Soininen H, Waldemar G, Nygaard H, et al: Patient- and proxy-reported utility in Alzheimer disease using the EuroQoL. Alzheimer Dis Assoc Disord. 2006, 20: 49-55. 10.1097/01.wad.0000201851.52707.c9.CrossRefPubMed
27.
Barton GR, Sach TH, Avery AJ, Jenkinson C, Doherty M, Whynes DK, et al: A comparison of the performance of the EQ-5D and SF-6D for individuals aged >or = 45 years. Health Econ. 2008, 17: 815-832. 10.1002/hec.1298.CrossRefPubMed
28.
Logsdon RG, Gibbons LE, McCurry SM, Teri L: Assessing quality of life in older adults with cognitive impairment. Psychosom Med. 2002, 64: 510-519.CrossRefPubMed
29.
Coucill W, Bryan S, Bentham P, Buckley A, Laight A: EQ-5D in patients with dementia: an investigation of inter-rater agreement. Med Care. 2001, 39: 760-771. 10.1097/00005650-200108000-00003.CrossRefPubMed
30.
Karlawish JH, Zbrozek A, Kinosian B, Gregory A, Ferguson A, Low DV, et al: Caregivers' assessments of preference-based quality of life in Alzheimer's disease. Alzheimers Dement. 2008, 4: 203-211. 10.1016/j.jalz.2007.11.018.CrossRefPubMed
31.
Hoe J, Katona C, Orrell M, Livingston G: Quality of life in dementia: care recipient and caregiver perceptions of quality of life in dementia: the LASER-AD study. Int J Geriatr Psychiatry. 2007, 22: 1031-1036. 10.1002/gps.1786.CrossRefPubMed
32.
Ready RE, Ott BR, Grace J: Insight and cognitive impairment: effects on quality-of-life reports from mild cognitive impairment and Alzheimer's disease patients. Am J Alzheimers Dis Other Demen. 2006, 21: 242-248. 10.1177/1533317506290589.CrossRefPubMed
33.
Snow AL, Norris MP, Doody R, Molinari VA, Orengo CA, Kunik ME: Dementia Deficits Scale. Rating self-awareness of deficits. Alzheimer Dis Assoc Disord. 2004, 18: 22-31. 10.1097/00002093-200401000-00005.CrossRefPubMed
34.
Vogel A, Mortensen EL, Hasselbalch SG, Andersen BB, Waldemar G: Patient versus informant reported quality of life in the earliest phases of Alzheimer's disease. Int J Geriatr Psychiatry. 2006, 21: 1132-1138. 10.1002/gps.1619.CrossRefPubMed
35.
Riepe MW, Mittendorf T, Forstl H, Frolich L, Haupt M, Leidl R, et al: Quality of life as an outcome in Alzheimer's disease and other dementias--obstacles and goals. BMC Neurol. 2009, 9: 47-10.1186/1471-2377-9-47.CrossRefPubMedPubMedCentral
36.
Lule D, Hacker S, Ludolph A, Birbaumer N, Kubler A: Depression and quality of life in patients with amyotrophic lateral sclerosis. Dtsch Arztebl Int. 2008, 105: 397-403.PubMedPubMedCentral
37.
Riepe MW, Ibach B: Neurological and psychiatric practitioners' views on Alzheimer's disease and treatment thereof. Dement Geriatr Cogn Disord. 2008, 26: 541-546. 10.1159/000180117.CrossRefPubMed
38.
Selai C, Vaughan A, Harvey RJ, Logsdon R: Using the QOL-AD in the UK. Int J Geriatr Psychiatry. 2001, 16: 537-538. 10.1002/gps.355.CrossRefPubMed
39.
Conde-Sala JL, Garre-Olmo J, Turro-Garriga O, Lopez-Pousa S, Vilalta-Franch J: Factors related to perceived quality of life in patients with Alzheimer's disease: the patient's perception compared with that of caregivers. Int J Geriatr Psychiatry. 2009, 24: 585-594. 10.1002/gps.2161.CrossRefPubMed
Metadata
Title
Generic quality of life assessment in dementia patients: a prospective cohort study
Authors
Claudia Schiffczyk
Barbara Romero
Christina Jonas
Constanze Lahmeyer
Friedemann Müller
Matthias W Riepe
Publication date
01-12-2010
Publisher
BioMed Central
Published in
BMC Neurology / Issue 1/2010
Electronic ISSN: 1471-2377
DOI
https://doi.org/10.1186/1471-2377-10-48

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