Hostname: page-component-cd9895bd7-8ctnn Total loading time: 0 Render date: 2024-12-28T00:18:44.030Z Has data issue: false hasContentIssue false
  • English
  • Français

The development and validation of a patient-reported quality of life measure for people with mild cognitive impairment

Published online by Cambridge University Press:  05 December 2013

Katherine Dean ,
Crispin Jenkinson ,
Gordon Wilcock  and
Zuzana Walker
Katherine Dean*
Affiliation:
Nuffield Department of Medicine, University of Oxford, Oxford, UK
Crispin Jenkinson
Affiliation:
Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford, UK
Gordon Wilcock
Affiliation:
Nuffield Department of Medicine, John Radcliffe Hospital, University of Oxford, Oxford, UK
Zuzana Walker
Affiliation:
Mental Health Sciences Unit, University College London, London, UK
*
Correspondence should be addressed to: Dr Katherine Dean, Nuffield Department of Medicine, University of Oxford, Level 5, John Radcliffe Hospital, Headley Way, Oxford, OX3 9DU. Email: kjwright1978@gmail.com.
Get access

Abstract

Background:

No validated patient-reported outcome measure (PROM) exists specifically to assess quality of life in mild cognitive impairment (MCI); we report a study conducted to develop such a measure.

Methods:

Semi-structured in-depth interviews were carried out with 23 people with MCI in order to determine items for a draft questionnaire. These interviews were audio-recorded, transcribed, and content analyzed. The draft questionnaire was refined following feedback from a focus group. 280 questionnaires were posted to subjects recruited from memory clinics and research databases, the response rate was 56% i.e. 146 questionnaires were included in the final analysis. The completed questionnaires were analyzed using factor analytic techniques to produce the final measure; construct validity was assessed by correlation with a generic patient-reported outcome measure, the SF-12v2.

Results:

Factor analysis produced a 13-item measure tapping two domains of patient-reported quality of life (“Emotional Effects” and “Practical Concerns”). Internal consistency reliability was high for both domains (α was 0.91 and 0.85 respectively). Both dimensions were highly and significantly correlated with the Mental Component Summary score of the SF-12v2 (“emotional effects” ρ = −0.43, p < 0.001 and “practical concerns” ρ = −0.56, p < 0.001).

Conclusions:

The Mild Cognitive Impairment Questionnaire (MCQ) is a 13-item measure developed specifically to measure patient-reported outcomes in people with MCI. It was created on the basis of patient report and has been shown to have good psychometric properties. It is likely to prove valuable in the evaluation of treatment regimes in this patient group.

Keywords

clinical assessmentcognitive impairmentmild cognitive impairmentquality of life (QoL)
Type
Research Article
Information
International Psychogeriatrics , Volume 26 , Issue 3 , March 2014 , pp. 487 - 497
Copyright
Copyright © International Psychogeriatric Association 2013 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Albert, M. S. et al. (2011). The diagnosis of mild cognitive impairment due to Alzheimer's disease: recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimers Dement, 7, 270–279.Google Scholar
Brown, P. J., Devanand, D. P., Liu, X. and Caccappolo, E. (2011). Functional impairment in elderly patients with mild cognitive impairment and mild Alzheimer disease. Archives of General Psychiatry, 68, 617–626.Google Scholar
Burgio, L. (1996). Interventions for the behavioral complications of Alzheimer's disease: behavioral approaches. International Psychogeriatrics, 8 (Suppl. 1), 45–52.Google Scholar
Chen, P. H., Golub, J. S., Hapner, E. R. and Johns, M. M. 3rd. (2009). Prevalence of perceived dysphagia and quality-of-life impairment in a geriatric population. Dysphagia, 24, 1–6.Google Scholar
Costello, A. B. and Osborne, J. W. (2005). Best practices in exploratory factor analysis: four recommendations for getting the most from your analysis. Practical Assessment, Research and Evaluation, 10, 173–178.Google Scholar
Cronbach, L. (1951). Coefficient alpha and the internal structure of tests. Psychometrica, 16, 297–334.Google Scholar
Folstein, M. F., Folstein, S. E. and McHugh, P. R. (1975). “Mini-mental state”: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189–198.Google Scholar
Frank, L., Lenderking, W. R., Howard, K. and Cantillon, M. (2011). Patient self-report for evaluating mild cognitive impairment and prodromal Alzheimer's disease. Alzheimer's Research & Therapy, 3, 35.Google Scholar
Frank, L. et al. (2006a). Validation of a new symptom impact questionnaire for mild to moderate cognitive impairment. International Psychogeriatrics, 18, 135–149.Google Scholar
Frank, L. et al. (2006b). Impact of cognitive impairment on mild dementia patients and mild cognitive impairment patients and their informants. International Psychogeriatrics, 18, 151–162.CrossRefGoogle ScholarPubMed
Gandek, B. et al. (1998). Cross-validation of item selection and scoring for the SF-12 Health Survey in nine countries: results from the IQOLA Project. International Quality of Life Assessment. Journal of Clinical Epidemiology, 51, 1171–1178.Google Scholar
Ganguli, M. et al. (2011). Outcomes of mild cognitive impairment by definition: a population study. Archives of Neurology, 68, 761–767.CrossRefGoogle ScholarPubMed
Gauthier, S. et al. (2006). Mild cognitive impairment. Lancet, 367, 1262–1270.Google Scholar
Jenkinson, C. et al. (2012). The development and validation of a quality of life measure for the carers of people with Parkinson's disease (the PDQ-Carer). Parkinsonism & Related Disorders, 18, 483–487.CrossRefGoogle ScholarPubMed
Jones, G., Kennedy, S., Barnard, A., Wong, J. and Jenkinson, C. (2001). Development of an endometriosis quality-of-life instrument: the Endometriosis Health Profile-30. Obstetrics & Gynecology, 98, 258–264.Google Scholar
Joosten-Weyn Banningh, L. W., Prins, J. B., Vernooij-Dassen, M. J., Wijnen, H. H., Olde Rikkert, M. G. and Kessels, R. P. (2011 ). Group therapy for patients with mild cognitive impairment and their significant others: results of a waiting-list controlled trial. Gerontology, 57, 444–454.Google Scholar
Joosten-Weyn Banningh, L., Vernooij-Dassen, M., Rikkert, M. O. and Teunisse, J. P. (2008). Mild cognitive impairment: coping with an uncertain label. International Journal Geriatric Psychiatry, 23, 148–154.CrossRefGoogle ScholarPubMed
Kline, P. (1999). Handbook of Psychological Testing. London: Routledge.Google Scholar
Lautenschlager, N. T., Cox, K. and Kurz, A. F. (2010). Physical activity and mild cognitive impairment and Alzheimer's disease. Current Neurology and Neuroscience Reports, 10, 352–358.Google Scholar
Lee, C. E., Browell, L. M. and Jones, D. L. (2008). Measuring health in patients with cervical and lumbosacral spinal disorders: is the 12-item short-form health survey a valid alternative for the 36-item short-form health survey? Archives of Physical Medicine and Rehabilitation, 89, 829–833.Google Scholar
Likert, R. (1932). A technique for the measurements of attitudes. Archives of Psychology, 22, 1–55.Google Scholar
Lu, Y.-F. Y., Haase, J. E. and Farran, C. J. (2007). Perspectives of persons with mild cognitive impairment: sense of being able. Alzheimer's Care Today, 8, 75–86.Google Scholar
Lyketsos, C. G., Lopez, O., Jones, B., Fitzpatrick, A. L., Breitner, J. and DeKosky, S. (2002). Prevalence of neuropsychiatric symptoms in dementia and mild cognitive impairment: results from the cardiovascular health study. JAMA, 288, 1475–1483.Google Scholar
Martinez, F. J. et al. (2008). Development and initial validation of a self-scored COPD Population Screener Questionnaire (COPD-PS). COPD, 5, 85–95.CrossRefGoogle ScholarPubMed
Matthews, F. E., Stephan, B. C., McKeith, I. G., Bond, J. and Brayne, C. (2008). Two-year progression from mild cognitive impairment to dementia: to what extent do different definitions agree? Journal of the American Geriatrics Society, 56, 1424–1433.Google Scholar
Mitchell, A. J. (2008). The clinical significance of subjective memory complaints in the diagnosis of mild cognitive impairment and dementia: a meta-analysis. International Journal of Geriatric Psychiatry, 23, 1191–1202.Google Scholar
National Institute for Clinical Excellence and Social Care Institute for Excellence (England and Wales) (2006). Dementia: Supporting People with Dementia and their Carers in Health and Social Care. London: National Institute for health and Clinical Excellence.Google Scholar
Novella, J. L., Jochum, C., Ankri, J., Morrone, I., Jolly, D. and Blanchard, F. (2001). Measuring general health status in dementia: practical and methodological issues in using the SF-36. Aging, 13, 362–369.Google Scholar
Nunnally, J. and Bernstein, I. (1994). Psychometric Theory. New York: McGraw Hill.Google Scholar
World Health Organization. (2008). ICD-10: International Statistical Classification of Diseases and Related Health Problems. New York: World Health Organization.Google Scholar
Palmer, K. and Fratiglioni, L. (2006). Is mild cognitive impairment a distinct clinical entity? Aging Health, 2, 763–769.Google Scholar
Petersen, R. C., Smith, G. E., Waring, S. C., Ivnik, R. J., Tangalos, E. G. and Kokmen, E. (1999). Mild cognitive impairment: clinical characterization and outcome. Archives of Neurology, 56, 303–308.Google Scholar
Portet, F. et al. (2006). Mild cognitive impairment (MCI) in medical practice: a critical review of the concept and new diagnostic procedure. Report of the MCI Working Group of the European Consortium on Alzheimer's Disease. Journal of Neurology, Neurosurgery, and Psychiatry, 77, 714–718.CrossRefGoogle Scholar
Roberts, J. L. and Clare, L. (2013). Meta-representational awareness in mild cognitive impairment: an interpretative phenomenological analysis. Aging & Mental Health, 17, 300–309.Google Scholar
Salyers, M. P., Bosworth, H. B., Swanson, J. W., Lamb-Pagone, J. and Osher, F. C. (2000). Reliability and validity of the SF-12 health survey among people with severe mental illness. Medical Care, 38, 1141–1150.Google Scholar
Schmid, R., Eschen, A., Ruegger-Frey, B. and Martin, M. (2012). Instruments for comprehensive needs assessment in individuals with cognitive complaints, mild cognitive impairment or dementia: a systematic review. International Journal of Geriatric Psychiatry, 27, 329–341.Google Scholar
Smith, A. D. et al. (2010). Homocysteine-lowering by B vitamins slows the rate of accelerated brain atrophy in mild cognitive impairment: a randomized controlled trial. Public Library of Science, 5, e12244.Google Scholar
Streiner, D. L. and Norman, G. R. (2003). Health Measurement Scales: A Practical Guide to their Development and Use. Oxford: Oxford University Press.Google Scholar
US Department of Health and Human Services, Food and Drug Administration, Center for Drug Evaluation and Research and Center for Devices and Radiological Health (2009). Guidance for Industry. Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labelling Claims. Maryland: FDA.Google Scholar
Van der Mussele, S. et al. (2013). Behavioral symptoms in mild cognitive impairment as compared with Alzheimer's disease and healthy older adults. International Journal of Geriatric Psychiatry, 28, 265–275.Google Scholar
Vogel, A., Stokholm, J., Gade, A., Andersen, B. B., Hejl, A. M. and Waldemar, G. (2004). Awareness of deficits in mild cognitive impairment and Alzheimer's disease: do MCI patients have impaired insight? Dementia and Geriatric Cognitive Disorders, 17, 181–187.Google Scholar
Wahlund, L. O., Pihlstrand, E. and Jonhagen, M. E. (2003). Mild cognitive impairment: experience from a memory clinic. Acta Neurologica Scandinavica, 179, 21–24.Google Scholar
Ware, J., Kosinski, M. and Keller, S. (1996). A 12-item short-form health survey: construction of scales and preliminary tests of reliability and validity. Medical Care, 34, 220–233.Google Scholar
Ware, J., Kosinski, M., Turner-Bowker, D. and Gandek, B. (2007). User's Manual for the SF-12v2 Health Survey. Lincoln, RI: QualityMetric Incorporated and Health Assessment Lab.Google Scholar
Whitehouse, P. J. (2007). Mild cognitive impairment – a confused concept? Nature Clinical Practice Neurology, 3, 62–63.CrossRefGoogle ScholarPubMed
Supplementary material: File

Dean et al. Supplementary Material

Figure 1

Download Dean et al. Supplementary Material(File)
File 25.6 KB
Supplementary material: File

Dean et al. Supplementary Material

Figure 2

Download Dean et al. Supplementary Material(File)
File 415.1 KB
Supplementary material: File

Dean et al. Supplementary Material

Table 1

Download Dean et al. Supplementary Material(File)
File 19.9 KB