Dementia quality of life instrument - construct and concurrent validity in patients with mild to moderate dementia

European Journal of Neurology

Volumn 19, Issue 3, 2012, Pages 376-384

  Voigt Radloff, S ^a   Leonhart, R ^b   Schutzwohl M ^c   Jurjanz, L ^c   Reuster, T ^c   Gerner, A ^c   Marschner, K ^c   van Nes, F ^d   Graff, M ^e   Vernooij Dassen, M ^e   Rikkert, M O ^e   Holthoff, V ^c   Hull M ^a  

^a UNIVERSITY OF FREIBURG   (Germany)

^b UNIVERSITY OF FREIBURG   (Germany)

^c UNIVERSITY HOSPITAL CARL GUSTAV CARUS   (Germany)

^d VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^e RADBOUD UNIVERSITY MEDICAL CENTER   (Netherlands)

Author keywords

Dementia; Quality of life; Validation studies

Indexed keywords

AGED; ALZHEIMER DISEASE ASSESSMENT SCALE COGNITIVE; ARTICLE; CLINICAL ASSESSMENT TOOL; COGNITION; CORNELL SCALE FOR DEPRESSION IN DEMENTIA; DAILY LIFE ACTIVITY; DEMENTIA; DEMENTIA QUALITY OF LIFE INSTRUMENT; DEPRESSION; DISEASE SEVERITY; FEMALE; GERMANY; HUMAN; MAJOR CLINICAL STUDY; MALE; MINI MENTAL STATE EXAMINATION; MULTICENTER STUDY (TOPIC); PERFORMANCE SCALE OF THE INTERVIEW OF DETERIORATION IN DAILY LIVING ACTIVITY IN DEMENTIA; PRIORITY JOURNAL; QUALITY OF LIFE IN ALZHEIMER DISEASE INSTRUMENT; QUALITY OF LIFE INDEX; RANDOMIZED CONTROLLED TRIAL (TOPIC); SHORT FORM 12;

AGED; DEMENTIA; FEMALE; HUMANS; LANGUAGE; MALE; NEUROPSYCHOLOGICAL TESTS; QUALITY OF LIFE;

EID: 84857062420     PISSN: 13515101     EISSN: 14681331     Source Type: Journal    
DOI: 10.1111/j.1468-1331.2011.03561.x     Document Type: Article

References (47)

1. European Medicines Agency. Guideline on Medicinal Products for the Treatment of Alzheimer's Disease and other Dementias. Doc. Ref. CPMP/EWP/553/95 Rev. 1. (accessed 19/5/2011).
2. National Collaborating Centre for Mental Health (commissioned by the Social Care Institute for Excellence and the National Institute for Health and Clinical Excellence). Dementia. A NICE-SCIE Guideline on Supporting People with Dementia and Their Carers in Health and Social Care. National clinical practice guideline, number 42. London: The British Psychological Society and Gaskell, 2007.
3. German Society for Psychiatry, Psychotherapy and Neurology and German Society for Neurology. Consented Guideline "Dementia" [Internet]. 2009. (accessed 19/5/2011).
4. Institute for Quality and Efficiency in Health Care. Non-drug therapies in Alzheimer's disease [Internet]. Cologne: 2009. (accessed 19/5/2011).
5. Work Group on Alzheimer's Disease and other dementias. Practice Guideline for the Treatment of Patients With Alzheimer's Disease and Other Dementias [Internet]. 2007. (accessed 19/5/2011).
6. Riepe MW, Mittendorf T, Förstl H, et al. Quality of life as an outcome in Alzheimer's disease and other dementias - obstacles and goals. BMC Neurol 2009; 25: 9.
7. Logsdon RG, Gibbons LE, McCurry SM, Teri L. Assessing quality of life in older adults with cognitive impairment. Psychosom Med 2002; 64: 510-519.
8. Roick C, Hinz A, Gertz HJ. Is quality of life in dementia patients validly estimable? Psychiatr Prax 2007; 34: 108-116. German.
9. Gertz HJ, Berwig M. Critical observations on measuring quality of life of persons suffering from dementia. Nervenarzt 2008; 79: 1023-1035. German.
10. Riepe M, Gutzmann H. Research on quality of life doesn't make sense in persons with dementia. Psychiatr Prax 2010; 37: e7-e10. German.
11. Lawton MP. The varieties of wellbeing. Exp Aging Res 1983; 9: 65-72.
12. Lawton MP. Assessing quality of life in Alzheimer disease research. Alzheimer Dis Assoc Disord 1997; 11(Suppl. 6): 91-99.
13. Banerjee S, Samsi K, Petrie CD, et al. What do we know about quality of life in dementia? A review of the emerging evidence on the predictive and explanatory value of disease specific measures of health related quality of life in people with dementia. Int J Geriatr Psychiatry 2009; 24: 15-24.
14. Scholzel-Dorenbos CJ, Meeuwsen EJ, Olde Rikkert MG. Integrating unmet needs into dementia health-related quality of life research and care: introduction of the Hierarchy Model of Needs in Dementia. Aging Ment Health 2010; 14: 113-119.
15. Maslow AH. A theory of human motivation. Psychol Rev 1943; 50: 370-396.
16. Demers L, Oremus M, Perrault A, Champoux N, Wolfson C. Review of outcome measurement instruments in Alzheimer's disease drug trials: psychometric properties of functional and quality of life scales. J Geriatr Psychiatry Neurol 2000; 13: 170-180.
17. Ready RE, Ott BR. Quality of life measures for dementia. Health Qual Life Outcomes 2003; 1: 11.
18. Schölzel-Dorenbos CJ, Ettema TP, Bos J, et al. Evaluating the outcome of interventions on quality of life in dementia: selection of the appropriate scale. Int J Geriatr Psychiatry 2007; 22: 511-519.
19. Ettema TP, Dröes RM, de Lange J, Mellenbergh GJ, Ribbe MW. A review of quality of life instruments used in dementia. Qual Life Res 2005; 14: 675-686.
20. Moniz-Cook E, Vernooij-Dassen M, Woods R, et al. A European consensus on outcome measures for psychosocial intervention research in dementia care. Aging Ment Health 2008; 12: 14-29.
21. Brod M, Stewart AL, Sands L, Walton P. Conceptualization and measurement of quality of life in dementia: the dementia quality of life instrument (DQoL). Gerontologist 1999; 39: 25-35.
22. Karim S, Ramanna G, Petit T, Doward L, Burns A. Development of the Dementia Quality of Life questionnaire (D-QOL): UK version. Aging Ment Health 2008; 12: 144-148.
23. Suzuki M, Uchida A, Kanamori M, Ooshiro H. Development of the Dementia Quality of Life Instrument - Japanese version. Nippon Ronen Igakkai Zasshi 2005; 42: 423-431.
24. Suzuki M, Kanamori M, Greiner C, Ito K, Ooshiro H. Follow-up study on subjective quality of life for elderly persons with dementia using the Japanese version of Dementia Quality of Life Instrument (JDQoL). Nippon Ronen Igakkai Zasshi 2006; 43: 485-491.
25. Chiu YC, Shyu Y, Liang J, Huang HL. Measure of quality of life for Taiwanese persons with early to moderate dementia and related factors I. Int J Geriatr Psychiatry 2008; 23: 580-585.
26. Van der Steen JT, van Campen C, Bosboom PR, et al. Quality of life and dementia. II. Selection of a measurement instrument for well-being appropriate for the reference model. Tijdschr Gerontol Gerat 2001; 32: 259-264. Dutch.
27. Thorgrimsen L, Selwood A, Spector A, et al. Whose quality of life is it anyway? The validity and reliability of the Quality of Life-Alzheimer's Disease (QoL-AD) scale. Alzheimer Dis Assoc Disord 2003; 17: 201-208.
28. Novelli MM, Dal Rovere HH, Nitrini R, Caramelli P. Cross-cultural adaptation of the quality of life assessment scale on Alzheimer disease. Arq Neuropsiquiatr 2005; 63: 201-206.
29. Novelli MM, Nitrini R, Caramelli P. Validation of the Brazilian version of the quality of life scale for patients with Alzheimer's disease and their caregivers (QOL-AD). Aging Ment Health 2010; 14: 624-631.
30. Wolak A, Novella JL, Drame M, et al. Transcultural adaptation and psychometric validation of a French-language version of the QoL-AD. Aging Ment Health 2009; 13: 593-600.
31. Smith SC, Lamping DL, Banerjee S, et al. Measurement of health-related quality of life for people with dementia: development of a new instrument (DEMQOL) and an evaluation of current methodology. Health Technol Assess 2005; 9: 1-93, iii-iv.
32. Graff MJ, Vernooij-Dassen MJ, Thijssen M, Dekker J, Hoefnagels WH, Rikkert MG. Community based occupational therapy for patients with dementia and their care givers: randomised controlled trial. BMJ 2006; 333: 1196.
33. Voigt-Radloff S, Graff M, Leonhart R, et al. WHEDA study: effectiveness of occupational therapy at home for older people with dementia and their caregivers - the design of a pragmatic randomised controlled trial evaluating a Dutch programme in seven German centres. BMC Geriatr 2009; 9: 44.
34. Reuster T, Jurjanz L, Schützwohl M, Holthoff V. Effektivität einer optimierten Ergotherapie bei Demenz im häuslichen Setting (ERGODEM). Zeitschrift für Gerontopsychologie und -psychiatrie 2008; 21: 185-189.
35. Logsdon RG, Gibbons LE, McCurry SM, Teri L. Quality of life in Alzheimer's disease: patient and caregiver reports. J Ment Health Aging 1999; 5: 21-32.
36. Bullinger M, Kirchberger I. SF-36 Fragebogen zum Gesundheitszustand - Handanweisung (SF-36 and SF-12 Test Manual). Göttingen: Hogrefe Verlag, 1998.
37. Alexopoulos GS, Abrams RC, Young RC, Shamoian CA. Cornell scale for depression in dementia. Biol Psychiatry 1988; 23: 271-284.
38. Müller-Thomsen T, Arlt S, Mann U, Mass R, Ganzer S. Detecting depression in Alzheimer's disease: evaluation of four different scales. Arch Clin Neuropsychol 2005; 20: 271-276.
39. Kørner A, Lauritzen L, Abelskov K, et al. Rating scales for depression in the elderly: external and internal validity. J Clin Psychiatry 2007; 68: 384-389.
40. Teunisse S, Derix MM. The interview for deterioration in daily living activities in dementia: agreement between primary and secondary caregivers. Int Psychogeriatr 1997; 9(Suppl. 1): 155-162.
41. Böhm P, Peña-Casanova J, Aguilar M, Hernández G, Sol JM, Blesa R. Clinical validity and utility of the interview for deterioration of daily living in dementia for Spanish-speaking communities NORMACODEM Group. Int Psychogeriatr 1998; 10: 261-270.
42. Sousa VD, Rojjanasrirat W. Translation, adaptation and validation of instruments or scales for use in cross-cultural health care research: a clear and user-friendly guideline. J Eval Clin Pract 2011; 17: 268-274.
43. Van Nes F, Abma T, Jonsson H, Deeg D. Language differences in qualitative research: is meaning lost in translation? 2010; 7: 313-316.
44. Frost MH, Reeve BB, Liepa AM, Stauffer JW, Hays RD; Mayo/FDA Patient-Reported Outcomes Consensus Meeting Group. What is sufficient evidence for the reliability and validity of patient-reported outcome measures? Value Health 2007; 10(Suppl. 2): S94-S105.
45. Ready RE, Ott BR, Grace J. Factor structure of patient and caregiver ratings on the dementia quality of life instrument. Aging Neuropsychol Cogn 2007; 14: 144-154.
46. Hurt CS, Banerjee S, Tunnard C, et al. Insight, cognition and quality of life in Alzheimer's disease. J Neurol Neurosurg Psychiatry 2010; 81: 331-336.
47. Mozley CG, Huxley P, Sutcliffe C, et al. "Not knowing where I am doesn't mean I don't know what I like": cognitive impairment and quality of life responses in elderly people. Int J Geriatr Psychiatry 1999; 14: 776-783.