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Clinical

Measuring disability in amyotrophic lateral sclerosis/motor neuron disease: the WHODAS 2.0-36, WHODAS 2.0-32, and WHODAS 2.0-12

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Pages 63-70 | Received 02 May 2022, Accepted 12 Jul 2022, Published online: 23 Jul 2022

References

  • Deuschl G, Beghi E, Fazekas F, Varga T, Christoforidi KA, Sipido E, et al. The burden of neurological diseases in Europe: an analysis for the Global Burden of Disease Study 2017. Lancet Public Health. 2020;5:e551–e67.
  • GBD 2016 Motor Neuron Disease Collaborators. Global, regional, and national burden of motor neuron diseases 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol. 2018;17:1083–97.
  • Alonso A, Logroscino G, Jick SS, Hernan MA. Incidence and lifetime risk of motor neuron disease in the United Kingdom: a population-based study. Eur J Neurol. 2009;16:745–51.
  • 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 Psychiatr Res. 1999;8:110–22.
  • Üstün TB, Chatterji S, Kostanjsek N, Rehm J, Kennedy C, Epping-Jordan J, WHO/NIH Joint Project, et al. Developing the World Health Organization Disability Assessment Schedule 2.0. Bull World Health Organ. 2010;88:815–23.
  • Federici S, Bracalenti M, Meloni F, Luciano JV. World Health Organization disability assessment schedule 2.0: An international systematic review. Disabil Rehabil. 2017;39:2347–80.
  • Midhage R, Hermansson L, Söderberg P, Tungström S, Nordenskjöld A, Svanborg C, et al. Psychometric evaluation of the Swedish self-rated 36-item version of WHODAS 2.0 for use in psychiatric populations—using classical test theory. Nord J Psychiatr. 2021;75:494–501.
  • Yuliana S, Muslih M, Sim J, Vidyanti AN, Brahmadhi A, Tsai HT. Development and validation of the World Health Organization disability Assessment Schedule 2.0 (WHODAS 2.0) Indonesian version in stroke survivors. Disabil Rehabil. 2021. Online ahead of print.
  • Saltychev M, Katajapuu N, Bärlund E, Laimi K. Psychometric properties of 12-item self-administered World Health Organization disability assessment schedule 2.0 (WHODAS 2.0) among general population and people with non-acute physical causes of disability—systematic review. Disabil Rehabil. 2021;43:789–94.
  • Saltychev M, Mattie R, McCormick Z, Laimi K. Confirmatory factor analysis of 12-Item World Health Organization Disability Assessment Schedule in patients with musculoskeletal pain conditions. Clin Rehabil. 2017;31:702–9.
  • MacLeod MA, Tremblay PF, Graham K, Bernards S, Rehm J, Wells S. Psychometric properties and a latent class analysis of the 12-item World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) in a pooled dataset of community samples. Int J Methods Psychiatr Res. 2016;25:243–54.
  • Vaganian L, Bussmann S, Boecker M, Kusch M, Labouvie H, Gerlach AL, et al. An item analysis according to the Rasch model of the German 12-item WHO Disability Assessment Schedule (WHODAS 2.0). Qual Life Res. 2021;30:2929–38.
  • Snell DL, Siegert RJ, Silverberg ND. Rasch analysis of the World Health Organization Disability Assessment Schedule 2.0 in a mild traumatic brain injury sample. Brain Inj. 2020;34:610–8.
  • Tarvonen-Schroder S, Kaljonen A, Laimi K. Disability in amyotrophic lateral sclerosis compared with traumatic brain injury using the World Health Organization Disability Assessment Schedule 2.0 and the international classification of functioning minimal generic set. Int J Rehabil Res. 2018;41:224–9.
  • Goldstein LH, Abrahams S. Changes in cognition and behaviour in amyotrophic lateral sclerosis: nature of impairment and implications for assessment. Lancet Neurol. 2013;12:368–80.
  • Brooks BR, Miller RG, Swash M, Munsat TL, World Federation of Neurology Research Group on Motor Neuron Diseases. El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1:293–9.
  • Üstün T, Kostanjsek N, Chatterji S, Rehm J. Measuring Health and Disability Manual for WHO Disability Assessment Schedule. Geneva: World Health Organization; 2010.
  • Rasch G. Probabilistic Models for Some Intelligence and Attainment Tests. Chicago: University of Chicago Press; 1960.
  • Wright BD, Linacre JM. Observations are always ordinal; measurements, however, must be interval. Arch Phys Med Rehabil. 1989;70:857–60.
  • Fischer G, Molenaar I. Rasch Models: Foundations, Recent Developments, and Applications. New York: Springer; 1995.
  • Ornbjerg L, Christensen K, Tennant A, Hetland M. Validation and assessment of minimally clinically important difference of the unadjusted Health Assessment Questionnaire in a Danish cohort: uncovering ordinal bias. Scand J Rheumatol. 2020;49:1–7.
  • Mallinson T. Rasch analysis of repeated measures. Rasch Measurement Transactions. 2011;25:1317.
  • Hagell P, Westergren A. Sample size and statistical conclusions from tests of fit to the Rasch model according to the Rasch unidimensional measurement model (Rumm) program in health outcome measurement. J Appl Meas. 2016;17:416–31.
  • Müller M. Item fit statistics for Rasch analysis: can we trust them? J Stat Distrib App. 2020;7:5.
  • 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.
  • 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.
  • Devlin NJ, Shah KK, Feng Y, Mulhern B, van Hout B. Valuing health-related quality of life: an EQ-5D-5L value set for England. Health Econ. 2018;27:7–22.
  • 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.
  • Jones BL, Nagin DS. A note on a Stata plugin for estimating group-based trajectory models. Sociolo Methods Res. 2013;42:608–13.
  • Mori M, Krumholz HM, Allore HG. Using latent class analysis to identify hidden clinical phenotypes. JAMA 2020;324:700–1.
  • StataCorp. Stata Statistical Software. Release 15th ed. College Station, TX: StataCorp LLC; 2017.
  • Sennfält S, Kläppe U, Thams S, Samuelsson K, Press R, Fang F, et al. The path to diagnosis in ALS: delay, referrals, alternate diagnoses, and clinical progression. Amyotroph Lateral Scler Frontotemporal Degener. 2022;1–9.
  • Eisen A, Kiernan M, Mitsumoto H, Swash M. Amyotrophic lateral sclerosis: a long preclinical period? J Neurol Neurosurg Psychiatry. 2014;85:1232–8.
  • Benatar M, Turner MR, Wuu J. Defining pre-symptomatic amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2019;20:303–9.
  • Pawlukowska W, Baumert B, Gołąb-Janowska M, Meller A, Machowska-Sempruch K, Wełnicka A, et al. Comparative assessment and monitoring of deterioration of articulatory organs using subjective and objective tools among patients with amyotrophic lateral sclerosis. BMC Neurol. 2019;19:241.
  • Shibuya K, Misawa S, Sekiguchi Y, Beppu M, Amino H, Suichi T, et al. Prodromal muscle cramps predict rapid motor functional decline in amyotrophic lateral sclerosis. J Neurol Neurosurg Psychiatry. 2019;90:242–3.

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