Measuring quality of life in ALS/MND: validation of the WHOQOL-BREF

References

• Wilson IB, Cleary PD. Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA 1995;273:59–65.
   PubMed Web of Science ®Google Scholar
• Mayo NE, Moriello C, Asano M, van der Spuy S, Finch L. The extent to which common health-related quality of life indices capture constructs beyond symptoms and function. Qual Life Res. 2011;20:621–7.
   PubMed Web of Science ®Google Scholar
• Simmons Z. Patient-perceived outcomes and quality of life in ALS. Neurotherapeutics 2015;12:394–402.
   PubMed Web of Science ®Google Scholar
• Robbins RA, Simmons Z, Bremer BA, Walsh SM, Fischer S. Quality of life in ALS is maintained as physical function declines. Neurology 2001;56:442–4.
   PubMed Web of Science ®Google Scholar
• Neudert C, Wasner M, Borasio GD. Individual quality of life is not correlated with health-related quality of life or physical function in patients with amyotrophic lateral sclerosis. J Palliat Med. 2004;7:551–7.
   PubMedGoogle Scholar
• Group TW. The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995;41:1403–9.
   PubMed Web of Science ®Google Scholar
• Skevington SM, Lotfy M, O'Connell KA. The World Health Organization’s WHOQOL-BREF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL group. Qual Life Res. 2004;13:299–310.
   PubMed Web of Science ®Google Scholar
• The WHOQOL G. The World Health Organization Quality of Life Assessment (WHOQOL): development and general psychometric properties. Soc Sci Med 1998;46:1569–85.
   PubMed Web of Science ®Google Scholar
• Schlüter DK, Tennant A, Mills R, Diggle PJ, Young CA. Risk factors for social withdrawal in amyotrophic lateral sclerosis/motor neurone disease. Amyotroph Lateral Scler Frontotemporal Degener. 2018;19:591–8.
   PubMed Web of Science ®Google Scholar
• Brooks BR, Miller RG, Swash M, Munsat TL. El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1:293–9.
   PubMed Web of Science ®Google Scholar
• Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, et al. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III). J Neurol Sci. 1999;169:13–21.
   PubMed Web of Science ®Google Scholar
• Gibbons CJ, Mills RJ, Thornton EW, Ealing J, Mitchell JD, Shaw PJ, et al. Rasch analysis of the hospital anxiety and depression scale (HADS) for use in motor neurone disease. Health Qual Life Outcomes. 2011;9:82–90.
   PubMed Web of Science ®Google Scholar
• Rehm J, Üstün TB, Saxena S, Nelson CB, Chatterji S, Ivis F, et al. On the development and psychometric testing of the WHO screening instrument to assess disablement in the general population. Int J Method Psychiat Res. 1999;8:110–22.
   Google Scholar
• Herdman M, Gudex C, Lloyd A, Janssen MF, 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.
   PubMed Web of Science ®Google Scholar
• Rasch G. Probabilistic models for some intelligence and attainment tests. Chicago: University of Chicago Press; 1960.
   Google Scholar
• da Rocha NS, Chachamovich E, de Almeida Fleck MP, Tennant A. An introduction to Rasch analysis for psychiatric practice and research. J Psychiatr Res. 2013;47:141–8.
   PubMed Web of Science ®Google Scholar
• Gustafsson J. Testing and obtaining fit of data to the Rasch model. Brit J Math Stat Psy. 1980;33:205–33.
   Web of Science ®Google Scholar
• Christensen KB, Makransky G, Horton M. Critical values for Yen’s Q3: identification of local dependence in the Rasch model using residual correlations. Appl Psychol Meas. 2017;41:178–94.
   PubMed Web of Science ®Google Scholar
• Wainer H, Kiely G. Item clusters and computer adaptive testing: a case for testlets. J Educ Meas. 1987;24:185–202.
   Web of Science ®Google Scholar
• Andrich D. Components of variance of scales with a bifactor subscale structure from two calculations of alpha. Educ Meas. 2016;35:25–30.
   Google Scholar
• Rodriguez A, Reise S, Haviland M. Evaluating bi-factor models: calculating and interpreting statistical indices. Psychol Methods. 2016;21:137–50.
   PubMed Web of Science ®Google Scholar
• Teresi JA, Kleinman M, Ocepek-Welikson K. Modern psychometric methods for detection of differential item functioning: application to cognitive assessment measures. Statist Med. 2000;19:1651–83.
   PubMed Web of Science ®Google Scholar
• Stauffer ME, Taylor SD, Watson DJ, Peloso PM, Morrison A. Definition of nonresponse to analgesic treatment of arthritic pain: an analytical literature review of the smallest detectable difference, the minimal detectable change, and the minimal clinically important difference on the pain visual analog scale. Int J Inflammation. 2011;2011:1–6.
   Google Scholar
• Noerholm V, Groenvold M, Watt T, Bjorner JB, Rasmussen NA, Bech P. Quality of life in the Danish general population–normative data and validity of WHOQOL-BREF using Rasch and item response theory models. Qual Life Res. 2004;13:531–40.
   PubMed Web of Science ®Google Scholar
• Perera HN, Izadikhah Z, O’Connor P, McIlveen P. Resolving dimensionality problems with WHOQOL-BREF item responses. Assessment 2018;25:1014–25.
   PubMed Web of Science ®Google Scholar
• Felgoise SH, Feinberg R, Stephens HE, Barkhaus P, Boylan K, Caress J, et al. Amyotrophic lateral sclerosis-specific quality of life-short form (ALSSQOL-SF): a brief, reliable, and valid version of the ALSSQOL-R. Muscle Nerve. 2018;58:646–54.
   PubMed Web of Science ®Google Scholar
• Skevington SM, McCrate FM. Expecting a good quality of life in health: assessing people with diverse diseases and conditions using the WHOQOL-BREF. Health Expect. 2012;15:49–62.
   PubMed Web of Science ®Google Scholar
• de Mol M, Visser S, Aerts J, Lodder P, de Vries J, den Oudsten BL. Satisfactory results of a psychometric analysis and calculation of minimal clinically important differences of the World Health Organization quality of life-BREF questionnaire in an observational cohort study with lung cancer and mesothelioma patients. BMC Cancer. 2018;18:1173.
   PubMed Web of Science ®Google Scholar
• Franchignoni F, Mora G, Giordano A, Volanti P, Chio A. Evidence of multidimensionality in the ALSFRS-R Scale: a critical appraisal on its measurement properties using Rasch analysis. J Neurol Neurosurg Psychiatry. 2013;84:1340–5.
   PubMed Web of Science ®Google Scholar
• Bacci ED, Staniewska D, Coyne KS, Boyer S, White LA, Zach N, et al. Item response theory analysis of the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised in the Pooled Resource Open-Access ALS Clinical Trials Database. Amyotroph Lateral Scler Frontotemporal Degener. 2016;17:157–67.
   PubMed Web of Science ®Google Scholar
• Bakker LA, Schroder CD, van Es MA, Westers P, Visser-Meily JMA, van den Berg LH. Assessment of the factorial validity and reliability of the ALSFRS-R: a revision of its measurement model. J Neurol. 2017;264:1413–20.
   PubMed Web of Science ®Google Scholar
• Young C, Paris-Davies J, Mills R, Tennant A, editors. Can you validly use a total ALSFRS-R score? A Rasch analysis to provide interval scale estimates. 29th International Symposium on ALS/MND, Glasgow: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 2018.
   Google Scholar