Can the general public use vignettes to discriminate between Alzheimer’s disease health states?

详细信息    查看全文

• 作者：Mark Oremus ; Feng Xie ; Eleanor Pullenayegum ; Kathryn Gaebel
• 关键词：Alzheimer’s disease ; Clinical vignette ; EQ ; 5D ; 5L ; General public ; Proxy ; Quality ; of ; life – Alzheimer’s Disease
• 刊名：BMC Geriatrics
• 出版年：2016
• 出版时间：December 2016
• 年：2016
• 卷：16
• 期：1
• 全文大小：563 KB
• 参考文献：1.World Health Organization. WHOQOL: Measuring Quality of Life. Geneva: Division of Mental Health and Prevention of Substance Abuse – World Health Organization; 1997.
  2.Herdman M, Gudex C, Lloyd A, Janssen M, Kind P, Parkin D, et al. Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Qual Life Res. 2011;20:1727–36.PubMedCentral CrossRef PubMed
  3.Logsdon RG, Gibbons LE, McCurry SM, Teri L. Assessing quality of life in older adults with cognitive impairment. Psychosom Med. 2002;64:510–9.CrossRef PubMed
  4.Drummond MF, Sculpher MJ, Torrance G, O’Brien B, Stoddart G. Methods for the Economic Evaluation of Health Care Programmes. 3rd ed. Oxford: Oxford University Press; 2005.
  5.Connelly PJ, Passmore AP, Lawlor BA. The treatment of mild Alzheimer’s disease post-NICE. Int J Geriatr Psychiatry. 2007;22:1262–3.CrossRef PubMed
  6.Crespo M, Hornillos C, Gomez MM. Assessing quality of life of nursing home residents with dementia: feasibility and limitations in patients with severe cognitive impairment. Int Psychogeriatr. 2013;25:1687–95.CrossRef PubMed
  7.Woods RT, Nelis SM, Martyr A, Roberts J, Whitaker CJ, Markova I, et al. What contributes to a good quality of life in early dementia? Awareness and the QoL-AD: a cross-sectional study. Health Qual Life Outcomes. 2014;12:94.PubMedCentral CrossRef PubMed
  8.Mitchell GJ, Dupuis SL, Kontos PC. Dementia discourse: from imposed suffering to knowing other-wise. J Appl Hermaneutics. Available at: http://​jah.​journalhosting.​ucalgary.​ca/​jah/​index.​php/​jah/​article/​view/​41/​pdf . Accessed on: November 4, 2015.
  9.Naglie G, Hogan DB, Krahn M, Black SE, Beattie BL, Patterson C, et al. Predictors of family caregiver ratings of patient quality of life in Alzheimer disease: cross-sectional results from the Canadian Alzheimer’s Disease Quality of Life Study. Am J Geriatr Psychiatry. 2011;19:891–901.PubMedCentral CrossRef PubMed
  10.Arons AM, Krabbe PF, Scholzel-Dorenbos CJ, van der Wilt GJ, Rikkert MG. Quality of life in dementia: a study on proxy bias. BMC Med Res Methodol. 2013;13:110.PubMedCentral CrossRef PubMed
  11.Bosboom PR, Alfonso H, Almeida OP. Determining the predictors of change in quality of life self-ratings and carer-ratings for community-dwelling people with Alzheimer disease. Alzheimer Assoc Disord. 2013;27:363–71.CrossRef
  12.Sousa MF, Santos RL, Arcoverde C, Simoes P, Belfort T, Adler I, et al. Quality of life in dementia: the role of non-cognitive factors in the ratings of people with dementia and family caregivers. Int Psychogeriatr. 2013;25:1097–105.CrossRef PubMed
  13.Conde-Sala JL, Rene-Ramirez R, Turro-Garriga O, Gascon-Bayarri J, Juncadella-Puig M, Moreno-Cordon L, et al. Factors associated with the variability in caregiver assessments of the capacities of patients with Alzheimer disease. J Geriatr Psychiatry Neurol. 2013;26:86–94.CrossRef PubMed
  14.Schulz R, Cook TB, Beach SR, Lingler JH, Martire LM, Monin JK, et al. Magnitude and causes of bias among family caregivers rating Alzheimer disease patients. Am J Geriatr Psychiatry. 2013;21:14–25.CrossRef PubMed
  15.Black BS, Johnston D, Morrison A, Rabins PV, Lyketsos CG, Samus QM. Quality of life of community-residing persons with dementia based on self-rated and caregiver-rated measures. Qual Life Res. 2012;21:1379–89.PubMedCentral CrossRef PubMed
  16.Patton M. Qualitative Evaluation and Research Methods. 2nd ed. Newbury Park: Sage Publications, Inc; 1999.
  17.Xie F, Pullenayegum E, Gaebel K, Bansback N, Bryan S, Ohinmaa A, et al. A time trade-off-derived value set of the EQ-5D-5L for Canada. Med Care. 2016;54:98–105.
  18.Siegel S, Castellan Jr J. Nonparametric Statistics for the Behavioral Sciences. 2nd ed. New York: McGraw-Hill Higher Education; 1989.
  19.Xie F, Oremus M, Gaebel K. Measuring health-related quality-of-life for Alzheimer’s disease using the general public. Qual Life Res. 2012;21:593–601.CrossRef PubMed
  20.Walters SJ, Brazier JE. Comparison of the minimally important difference for two health state utility measures: EQ-5D and SF-6D. Qual Life Res. 2005;14:1523–32.CrossRef PubMed
  21.Rowen D, Mulhern B, Banerjee S, Tait R, Watchurst C, Smith SC, et al. Comparison of general population, patient, and carer utility values for dementia health States. Med Decis Making. 2015;35:68–80.PubMedCentral CrossRef PubMed
  22.Torrance GW, Thomas WH, Sackett DL. A utility maximization model for evaluation of health care programs. Health Serv Res. 1972;7:118–33.PubMedCentral PubMed
  23.Mulhern B, Smith SC, Rowen D, Brazier JE, Knapp M, Lamping DL, et al. Improving the measurement of QALYs in dementia: developing patient- and carer-reported health state classification systems using Rasch analysis. Value Health. 2012;15:323–33.CrossRef PubMed
  24.Brazier J, Akehurst R, Brennan A, Dolan P, Claxton K, McCabe C, et al. Should patients have a greater role in valuing health states? Appl Health Econ Health Policy. 2005;4:201–8.CrossRef PubMed
  25.Guest JF, Nanuwa K, Barden R. Utility values for specific hepatic encephalopathy health states elicited from the general public in the United Kingdom. Health Qual Life Outcomes. 2014;12:89.PubMedCentral CrossRef PubMed
  26.Doyle S, Lloyd A, Walker M. Health state utility scores in advanced non-small cell lung cancer. Lung Cancer. 2008;62:374–80.CrossRef PubMed
  27.Iqbal I, Dasgupta B, Taylor P, Heron L, Pilling C. Elicitation of health state utilities associated with differing durations of morning stiffness in rheumatoid arthritis. J Med Econ. 2012;15:1192–200.CrossRef PubMed
  28.Stein K, Dyer M, Milne R, Round A, Ratcliffe J, Brazier J. The precision of health state valuation by members of the general public using the standard gamble. Qual Life Res. 2009;18:509–18.CrossRef PubMed
  29.Raina P, Santaguida P, Ismaila A, Patterson C, Cowan D, Levine M, et al. Effectiveness of cholinesterase inhibitors and memantine for treating dementia: evidence review for a clinical practice guideline. Ann Intern Med. 2008;148:379–97.CrossRef PubMed
  30.Randhawa H, Jiwa A, Oremus M. Identifying the components of clinical vignettes describing Alzheimer’s disease or other dementias: a scoping review. BMC Med Inform Decis Mak. 2015;15:54.PubMedCentral CrossRef PubMed
  
• 作者单位：Mark Oremus (1)
  Feng Xie (2) (3) (4)
  Eleanor Pullenayegum (5)
  Kathryn Gaebel (4)
  
  1. School of Public Health and Health Systems, University of Waterloo, 200 University Avenue West, Waterloo, ON, Canada
  2. Department of Clinical Epidemiology and Biostatistics, McMaster University, 1280 Main Street West, Hamilton, ON, Canada
  3. Program for Health Economics and Outcome Measures (PHENOM), 50 Charlton Avenue East, Hamilton, ON, Canada
  4. Centre for Evaluation of Medicines, St. Joseph’s Healthcare Hamilton, 25 Main Street West, Hamilton, ON, Canada
  5. Child Health Evaluative Sciences, Hospital for Sick Children, 555 University Avenue, Toronto, ON, Canada
  
• 刊物主题：Geriatrics/Gerontology; Aging; Rehabilitation;
• 出版者：BioMed Central
• ISSN：1471-2318

文摘

Background Valid estimates of health-related quality-of-life (HRQoL) are often difficult to obtain from persons with Alzheimer’s disease (AD) and family caregiver proxies. To help assess whether the general public can serve as an alternate source of proxy HRQoL estimates in AD, we examined whether the general public can use vignettes to discriminate between AD health states.