Item distribution and inter-rater reliability of the German version of the quality of life in Alzheimer's disease scale (QoL-AD) proxy for people with dementia living in nursing homes

Martin Nikolaus Dichter, Eva-Maria Wolschon, Christian G G Schwab, Gabriele Meyer, Sascha Köpke, Martin Nikolaus Dichter, Eva-Maria Wolschon, Christian G G Schwab, Gabriele Meyer, Sascha Köpke

Abstract

Background: The Quality of Life in Alzheimer's disease scale (QoL-AD) is a widely used Health Related Quality of Life (HRQoL) instrument. However, studies investigating the instrument's inter-rater reliability (IRR) are missing. This study aimed to determine the item distribution and IRR of the German proxy version of the QoL-AD (13 Items) and a nursing home-specific instrument version (QoL-AD NH, 15 Items).

Methods: The instruments were applied to 73 people with dementia living in eight nursing homes in Germany. Individuals with dementia were assessed two times by blinded proxy raters. The IRR analyses were based on methodological criteria of the quality appraisal tool for studies of diagnostic reliability (QAREL), the COSMIN group and the single-measure Intra-Class Correlation Coefficient (ICC) for absolute agreement ≥0.70.

Results: All items for both instrument versions demonstrated acceptable item difficulty, with the exception of one item (QoL-AD proxy). The IRR was moderate for the QoL-AD (ICC: 0.65) and insufficient for the QoL-AD NH (ICC: 0.18). The additional computation of the average measure ICC for two proxy-raters demonstrated a strong IRR (ICC: 0.79) for the QoL-AD and a weak IRR for the QoL-AD NH (ICC: 0.31). The detailed analysis of the IRR for each item underpinned the need for the further development of both instruments.

Conclusions: The unsatisfactory IRRs for both instruments highlight the need for the development of a user guide including general instructions for instrument application as well as definitions and examples reflecting item meaning. Priority should be given to the development of reliable proxy-person versions of both instruments.

Trial registration: ClinicalTrials.gov: NCT02295462 , Date of registration: 11-20-2014.

Keywords: Dementia; Nursing homes; Psychometric properties; Quality of life; Reliability.

Conflict of interest statement

Ethics approval and consent to participate

Ethical approval was obtained from the ethics committee of the University of Lübeck (Ref. 14–239). Written information about the study was given to residents and residents’ legal representatives, and written informed consent was obtained from residents or their legal representatives. Caregivers received written and oral information about the study before data collection. Voluntary participation in the data collection was considered as informed consent from caregivers. A written consent from the caregivers was waived by the ethics committee.

Consent for publication

Not applicable.

Competing interests

All authors declare that they have no competing interests. GM is a member of the BMC Geriatrics editorial board, but was not involved in the review process.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

References

    1. Bowling A, Rowe G, Adams S, Sands P, Samsi K, Crane M, Joly L, Manthorpe J. Quality of life in dementia: a systematically conducted narrative review of dementia-specific measurement scales. Aging Ment Health. 2015;19(1):13–31. doi: 10.1080/13607863.2014.915923.
    1. Dichter MN, Schwab CG, Meyer G, Bartholomeyczik S, Halek M. Linguistic validation and reliability properties are weak investigated of most dementia-specific quality of life measurements-a systematic review. J Clin Epidemiol. 2016;70:233–245. doi: 10.1016/j.jclinepi.2015.08.002.
    1. Bullinger M, Anderson R, Cella D, Aaronson N. Developing and evaluating cross-cultural instruments from minimum requirements to optimal models. Qual Life Res. 1993;2(6):451–459. doi: 10.1007/BF00422219.
    1. 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(1):21–32.
    1. Edelman P, Fulton BR, Kuhn D, Chang CH. A comparison of three methods of measuring dementia-specific quality of life: perspectives of residents, staff, and observers. Gerontologist. 2005;45:Spec No 1(1):27–36. doi: 10.1093/geront/45.suppl_1.27.
    1. Hylla J, Schwab CGG, Isfort M, Halek M, Dichter MN. Internal consistency and construct validity of the quality of life in Alzheimer's disease (QoL-AD) proxy - a secondary data analysis. Pflege. 2016;29(4):183–191. doi: 10.1024/1012-5302/a000494.
    1. Barrios H, Verdelho A, Narciso S, Goncalves-Pereira M, Logsdon R, de Mendonca A. Quality of life in patients with cognitive impairment: validation of the quality of life-Alzheimer's disease scale in Portugal. Int Psychogeriatr. 2013;25(7):1085–1096. doi: 10.1017/S1041610213000379.
    1. Lawton MP. A multidimensional view of quality of life in frail elders. In: Birren EJ, Lubben EJ, Rowe CJ, Deutchman ED, editors. The concept and measurement of quality of life in the frail elderly. San Diego: Academic Press; 1991. pp. 3–23.
    1. Dichter MN, Quasdorf T, Schwab CG, Trutschel D, Haastert B, Riesner C, Bartholomeyczik S, Halek M. Dementia care mapping: effects on residents’ quality of life and challenging behavior in German nursing homes. A quasi-experimental trial. Int Psychogeriatr. 2015;27:1875–1892. doi: 10.1017/S1041610215000927.
    1. Beerens HC, de Boer B, Zwakhalen SM, Tan FE, Ruwaard D, Hamers JP, et al. The association between aspects of daily life and quality of life of people with dementia living in long-term care facilities: a momentary assessment study. Int Psychogeriatr. 2016; 28(8):1323–31.
    1. Nielsen AB, Siersma V, Waldemar G, Waldorff FB. Poor self-rated health did not increase risk of permanent nursing placement or mortality in people with mild Alzheimer's disease. BMC Geriatr. 2016; 16:87.
    1. Pickard AS, Knight SJ. Proxy evaluation of health-related quality of life: a conceptual framework for understanding multiple proxy perspectives. Med Care. 2005;43(5):493–499. doi: 10.1097/01.mlr.0000160419.27642.a8.
    1. Leontjevas R, Teerenstra S, Smalbrugge M, Koopmans RT, Gerritsen DL. Quality of life assessments in nursing homes revealed a tendency of proxies to moderate patients’ self-reports. J Clin Epidemiol. 2016;80:123–133. doi: 10.1016/j.jclinepi.2016.07.009.
    1. Perales J, Cosco TD, Stephan BC, Haro JM, Brayne C. Health-related quality-of-life instruments for Alzheimer's disease and mixed dementia. Int Psychogeriatrics. 2013;25(5):691–706. doi: 10.1017/S1041610212002293.
    1. Graske J, Fischer T, Kuhlmey A, Wolf-Ostermann K. Dementia-specific quality of life instruments and their appropriateness in shared-housing arrangements--a literature study. Geriatr Nurs. 2012;33(3):204–216. doi: 10.1016/j.gerinurse.2012.01.001.
    1. Oppikofer S. Quality of life in dementia. Identification, review and documentation of existing instruments to measure quality of life in people with severe dementia. [Lebensqualität bei Demenz. Eine Bestandsaufnahme, Sichtung und Dokumentation bestehender Instrumente zur Messung der Lebensqualität bei Menschen mit schwerer Demenz] In: Zürich UH, editor. Zürcher Schriften zur Gerontologie. Zürich: University Hospital Zürich; 2008.
    1. Smith SC, Lamping DL, Banerjee S, Harwood RH, Foley B, Smith P, Cook JC, Murray J, Prince M, Levin E, 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 NHS R&D HTA Programme. 2005;9(10):1–110.
    1. Scholzel-Dorenbos CJ, van der Steen MJ, Engels LK, Olde Rikkert MG. Assessment of quality of life as outcome in dementia and MCI intervention trials: a systematic review. Alzheimer Dis Assoc Disord. 2007;21(2):172–178. doi: 10.1097/WAD.0b013e318047df4c.
    1. Dichter M. Inter-rater reliability of the Qol-measure QUALIDEM. BMC Nurs. 2015;14(Suppl1):12. doi: 10.1186/1472-6955-14-S1-S12.
    1. Beerens HC, Sutcliffe C, Renom-Guiteras A, Soto ME, Suhonen R, Zabalegui A, Bokberg C, Saks K, Hamers JP, RightTimePlaceCare C. Quality of life and quality of care for people with dementia receiving long term institutional care or professional home care: the European RightTimePlaceCare study. J Am Med Dir Assoc. 2014;15(1):54–61. doi: 10.1016/j.jamda.2013.09.010.
    1. Dichter MN, Wolschon EM, Meyer G, Köpke S. Cross-cultural adaptation of the German version of the quality of life in Alzheimer’s disease scale - nursing home version (QoL-AD NH) Int Psychogeriatr. 2016;28:1–2. doi: 10.1017/S1041610216000107.
    1. Richter C, Berg A, Fleischer S, Kopke S, Balzer K, Fick EM, Sonnichsen A, Loscher S, Vollmar HC, Haastert B, et al. Effect of person-centred care on antipsychotic drug use in nursing homes (EPCentCare): study protocol for a cluster-randomised controlled trial. Implementation science : IS. 2015;10:82. doi: 10.1186/s13012-015-0268-3.
    1. Lucas NP, Macaskill P, Irwig L, Bogduk N. The development of a quality appraisal tool for studies of diagnostic reliability (QAREL) J Clin Epidemiol. 2010;63(8):854–861. doi: 10.1016/j.jclinepi.2009.10.002.
    1. Terwee CB, Bot SD, de Boer MR, van der Windt DA, Knol DL, Dekker J, Bouter LM, de Vet HC. Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol. 2007;60(1):34–42. doi: 10.1016/j.jclinepi.2006.03.012.
    1. Bonett DG. Sample size requirements for estimating intraclass correlations with desired precision. Stat Med. 2002;21(9):1331–1335. doi: 10.1002/sim.1108.
    1. Köhler L, Weyerer S, Schäufele M. Proxy screening tools improve the recognition of dementia in old-age homes: results of a validation study. Age Ageing. 2007; 36(5):549–54.
    1. Pantel J, Bockenheimer-Lucius G, Ebsen I, Müller R, Hustedt P, Diehm A. Psychopharmaka im Altenpflegeheim. Eine interdisziplinäre Untersuchung unter Berücksichtigung gerontopsychiatrischer, ethischer und juristischer Aspekte. Frankfurt am Main: BHF-Bank-Stiftung; 2006.
    1. Mapi Research Trust: QoL-AD Germany. German Version of 13 Jun 13 - MAPI Institute. In. Lyon: Mapi Research Trust; 2013.
    1. Gräske J, Verbeek H, Gellert P, Fischer T, Kuhlmey A, Wolf-Ostermann K. How to measure quality of life in shared-housing arrangements? A comparison of dementia-specific instruments. Qual Life Res. 2014;23(2):549–559. doi: 10.1007/s11136-013-0504-8.
    1. Edelman P, Fulton BR, Kuhn D. Comparison of dementia-specific quality of life measures in adult day centers. Home Health Care Serv Q. 2004;23(1):25–42. doi: 10.1300/J027v23n01_02.
    1. Sloane PD, Zimmerman S, Williams CS, Reed PS, Gill KS, Preisser JS. Evaluating the quality of life of long-term care residents with dementia. Gerontologist. 2005;45 Spec No 1(1):37–49. doi: 10.1093/geront/45.suppl_1.37.
    1. Weyerer S, Schäufele M, Hendlmeier I, Kofahl C, Sattel H, B J h f n AUTOREN. Evaluation of dementia specific residential care in Hamburg [Evaluation der Besonderen Stationären Dementenbetreuung in Hamburg] Mannheim: Zentralinstitut für Seelische Gesundheit: Mannheim; 2004.
    1. Cohen-Mansfield J. Assessment of agitation. Int Psychogeriatr. 1996;8:233–245. doi: 10.1017/S104161029600261X.
    1. Cohen-Mansfield J, Marx MS, Rosenthal AS. A description of agitation in a nursing home. J Gerontol. 1989;44:M77–M84. doi: 10.1093/geronj/44.3.M77.
    1. Müller B, Staudinger B. Evaluation of a Multimodal Treatment Program for Agitated Behavior in Nursing Home Residents with Dementia [Wirksamkeit eines stationären multimodalen Behandlungspro-gramms bei agitierten Verhaltensweisen dementer Heimbewohner] Zeitschrift für Pflegewissenschaft und psychische Gesundheit. 2010;4:1–9.
    1. Dichter MN, Schwab C, Meyer G, Bartholomeyczik S, Dortmann O, Halek M. Measuring the quality of life in mild to very severe dementia: testing the inter-rater and intra-rater reliability of the German version of the QUALIDEM. Int Psychogeriatr. 2014;26(5):825–836. doi: 10.1017/S1041610214000052.
    1. Dichter MN, Schwab CG, Meyer G, Bartholomeyczik S, Halek M. Item distribution, internal consistency and inter-rater reliability of the German version of the QUALIDEM for people with mild to severe and very severe dementia. BMC Geriatr. 2016;16(126) 10.1186/s12877-12016-10296-12870.
    1. Cohen J. Weighted kappa: nominal scale agreement with provision for scaled disagreement or partial credit. Psychol Bull. 1968;70(4):213–220. doi: 10.1037/h0026256.
    1. Wirtz M, Caspar F. Methoden zur Bestimmung und Verbesserung der Zuverlässigkeit von Einschätzungen mittels Kategoriensystemen und Ratingskalen. Hogrefe Verlag: Göttingen; 2002. Rater-agreement and Rater-reliability.Methods to determine and improve the reliability of ratings by category systems and rating scales Beurteilungsübereinstimmung und Beurteilerreliabilität.
    1. Mayer H, Nonn C, Osterbrink J, Evers GC. Quality criteria of assessment scales - Cohen's kappa as measure of interrator reliability (1) Pflege. 2004;17(1):36–46. doi: 10.1024/1012-5302.17.1.36.
    1. Landis JR, Koch GG. The measurement of observer agreement for categorical data. Biometrics. 1977;33(1):159–174. doi: 10.2307/2529310.
    1. Carpenter J, Bithell J. Bootstrap confidence intervals: when, which, what? A practical guide for medical statisticians. Stat Med. 2000;19(9):1141–1164. doi: 10.1002/(SICI)1097-0258(20000515)19:9<1141::AID-SIM479>;2-F.
    1. Core R. Team: R: A language and environment for statistical computing. Vienna: R Foundation for Statistical Computing; 2015.
    1. Gamer M, Lemon J, Fellows I,PS. IRR: Various Coefficients of Interrater Reliability and Agreement. R package version 0.84. p. 2012. .
    1. Canty A, Ripley B. Boot: Bootstrap R (S-Plus) Functions. R package version 1.3–16. p. 2015. .
    1. Davison AC, Hinkley DV. Bootstrap methods and their applications. Cambridge: Cambridge University Press; 1997.
    1. Wolak A, Jolly D, Dramé M, Boyer F, Morrone I, Aquino JP, Rouaud O, Perret Guillaume C, Ravenel E, Dantoine T, et al. Quality of life in dementia: psychometric properties of a French language version of the dementia quality of life questionnaire (DQoL) European Geriatric Medicine. 2010;1(6):334–347. doi: 10.1016/j.eurger.2010.09.008.
    1. Gräske J, Fischer T, Kuhlmey A, Wolf-Ostermann K. Quality of life in dementia care - differences in quality of life measurements performed by residents with dementia and by nursing staff. Aging Ment Health. 2012;16(7):819–827. doi: 10.1080/13607863.2012.667782.
    1. Jacob L, Han JW, Kim TH, Park JH, Lee SB, Lee JJ, et al. How Different are Quality of Life Ratings for People with Dementia Reported by Their Family Caregivers from Those Reported by the Patients Themselves? J Alzheimers Dis. 2017; 55(1):259–67.
    1. Menzi-Kuhn C. Unpublished Masterthesis. Maastricht: Maastricht University; 2006. [Quality of life of people with dementia in institutional care] Lebensqualität von Menschen mit Demenz in stationären Langzeitpflegeeinrichtungen.
    1. Weiner MF, Martin-Cook K, Svetlik DA, Saine K, Foster B, Fontaine CS. The quality of life in late-stage dementia (QUALID) scale. J Am Med Dir Assoc. 2000;1(3):114–116.
    1. Winzelberg GS, Williams CS, Preisser JS, Zimmerman S, Sloane PD. Factors associated with nursing assistant quality-of-life ratings for residents with dementia in long-term care facilities. Gerontologist. 2005;45 Spec No 1(1):106–114. doi: 10.1093/geront/45.suppl_1.106.
    1. Gräske J, Meyer S, Wolf-Ostermann K. Quality of life ratings in dementia care - a cross-sectional study to identify factors associated with proxy-ratings. Health Qual Life Outcomes. 2014;12(1):177. doi: 10.1186/s12955-014-0177-1.
    1. Thorgrimsen L, Selwood A, Spector A, Royan L, de Madariaga Lopez M, Woods RT, Orrell M. 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(4):201–208. doi: 10.1097/00002093-200310000-00002.

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