Document Type: Original Article
Department of Neurology, Firoozgar Hospital, Iran University of Medical Sciences, Tehran, Iran
Department of Neurology, Firoozgar Hospital, Iran University of Medical Sciences, Tehran, Iran Cellular and Molecular Research Centre, Iran University of Medical Sciences, Tehran, Iran Student Research Committee, Iran University of Medical Sciences, Tehran, Iran
Mental Health Research Center, Social Injury Prevention Research Institute, Iran University of Medical Sciences, Tehran, Tehran
Firoozgar Clinical Research and Development Center, Iran University of Medical Sciences, Tehran, Iran Department of Radiation Oncology, Firoozgar Hospital, Iran University of Medical Sciences, Tehran, Iran
Background: Amyotrophic Lateral Sclerosis-Specific Quality of Life-Revised (ALSSQOL-R) encompasses 50 items which assess quality of life (QOL) in patients with amyotrophic lateral sclerosis (ALS) in six major domains. This study aims to translate the ALSSQOL-R into Persian and evaluate its reliability and validity among Iranian patients.
Methods: ALSSQOL-R was translated by the standard multi-step forward-backward method. Content validity was calculated using item content validity index (I-CVI). Three items in the “intimacy” domain were deleted considering Iranian culture. Cronbach’s alpha was used for all 6 dimensions to calculate the internal consistency reliability. Test-retest reliability was evaluated using intraclass correlation coefficient (ICC) with one-month interval. Concurrent validity was measured by the validated version of 36-Item Short Form Health Survey (SF-36) questionnaire.
Results: Sixty-three patients with ALS were enrolled in the study. I-CVI was 70%, promoted to 85% after modifications (acceptable). Regarding internal consistency reliability, Cronbach’s alpha in all six domains was ³ 0.70 and total Cronbach’s alpha was 0.89 which is assumed as good. In terms of test-retest reliability, ICC [95% confidence interval (CI)] was 0.91 (91%) and Pearson correlation coefficient (r) was 0.90 (P < 0.001), all indicating an excellent reliability. The concurrent validity was established based on a strong correlation with SF-36 (r = 0.744, P < 0.001).
Conclusion: The findings show that the modified Persian version of ALSSQOL-R is a valid and reliable QOL questionnaire which can be used for Iranian patients with ALS in both clinical and research settings.
- Ingre C, Roos PM, Piehl F, Kamel F, Fang F. Risk factors for amyotrophic lateral sclerosis. Clin Epidemiol 2015; 7: 181-93.
- Andrew AS, Caller TA, Tandan R, Duell EJ, Henegan PL, Field NC, et al. Environmental and occupational exposures and amyotrophic lateral sclerosis in New England. Neurodegener Dis 2017; 17(2-3): 110-6.
- Chio A, Gauthier A, Montuschi A, Calvo A, Di VN, Ghiglione P, et al. A cross sectional study on determinants of quality of life in ALS. J Neurol Neurosurg Psychiatry 2004; 75(11): 1597-601.
- Prell T, Gaur N, Stubendorff B, Rodiger A, Witte OW, Grosskreutz J. Disease progression impacts health-related quality of life in amyotrophic lateral sclerosis. J Neurol Sci 2019; 397: 92-5.
- Simmons Z. Patient-perceived outcomes and quality of life in ALS. Neurotherapeutics 2015; 12(2): 394-402.
- Burns TM, Graham CD, Rose MR, Simmons Z. Quality of life and measures of quality of life in patients with neuromuscular disorders. Muscle Nerve 2012; 46(1): 9-25.
- Megari K. Quality of life in chronic disease patients. Health Psychol Res 2013; 1(3): e27.
- Simmons Z, Bremer BA, Robbins RA, Walsh SM, Fischer S. Quality of life in ALS depends on factors other than strength and physical function. Neurology 2000; 55(3): 388-92.
- Neudert C, Wasner M, Borasio GD. Patients' assessment of quality of life instruments: a randomised study of SIP, SF-36 and SEIQoL-DW in patients with amyotrophic lateral sclerosis. J Neurol Sci 2001; 191(1-2): 103-9.
- Jenkinson C, Norquist JM, Fitzpatrick R. Deriving summary indices of health status from the Amyotrophic Lateral Sclerosis Assessment Questionnaires (ALSAQ-40 and ALSAQ-5). J Neurol Neurosurg Psychiatry 2003; 74(2): 242-5.
- Epton J, Harris R, Jenkinson C. Quality of life in amyotrophic lateral sclerosis/motor neuron disease: a structured review. Amyotroph Lateral Scler 2009; 10(1): 15-26.
- O'Carroll RE, Smith K, Couston M, Cossar JA, Hayes PC. A comparison of the WHOQOL-100 and the WHOQOL-BREF in detecting change in quality of life following liver transplantation. Qual Life Res 2000; 9(1): 121-4.
- Cohen SR, Russell LB, Leis A, Shahidi J, Porterfield P, Kuhl DR, et al. More comprehensively measuring quality of life in life-threatening illness: The McGill Quality of Life Questionnaire - Expanded. BMC Palliat Care 2019; 18(1): 92.
- Simmons Z, Felgoise SH, Bremer BA, Walsh SM, Hufford DJ, Bromberg MB, et al. The ALSSQOL: Balancing physical and nonphysical factors in assessing quality of life in ALS. Neurology 2006; 67(9): 1659-64.
- Raheja D, Stephens HE, Lehman E, Walsh S, Yang C, Simmons Z. Patient-reported problematic symptoms in an ALS treatment trial. Amyotroph Lateral Scler Frontotemporal Degener 2016; 17(3-4): 198-205.
- Oh J, Hong GS, Kim SH, Kim JA. Translation and psychometric evaluation of a Korean version of the Amyotrophic Lateral Sclerosis-Specific Quality of Life - Revised. Amyotroph Lateral Scler Frontotemporal Degener 2017; 18(1-2): 92-8.
- 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(5): 293-9.
- Costa J, Swash M, de Carvalho M. Awaji criteria for the diagnosis of amyotrophic lateral sclerosis:a systematic review. Arch Neurol 2012; 69(11): 1410-6.
- Felgoise SH, Walsh SM, Stephens HE, Brothers A, and Simmons Z. The ALS Specific Quality of Life-Revised (ALSSQOL-R) User's Guide. version 1.0. 2011 [Online]. [cited 2011 Jan 15]. Available from: URL: http://www.pennstatehershey.org/c/document library/getfile?uuid=b9de0a6a-9c1d-4f77-bdf0-5c6c846e018e&groupId=22147
- Bourke SC, McColl E, Shaw PJ, Gibson GJ. Validation of quality of life instruments in ALS. Amyotroph Lateral Scler Other Motor Neuron Disord 2004; 5(1): 55-60.
- Montazeri A, Vahdaninia M, Mousavi SJ, Omidvari S. The Iranian version of 12-item Short Form Health Survey (SF-12): Factor structure, internal consistency and construct validity. BMC Public Health 2009; 9: 341.
- Montazeri A, Goshtasebi A, Vahdaninia M, Gandek B. The Short Form Health Survey (SF-36): Translation and validation study of the Iranian version. Qual Life Res 2005; 14(3): 875-82.
- Zamanzadeh V, Ghahramanian A, Rassouli M, Abbaszadeh A, Alavi-Majd H, Nikanfar AR. Design and implementation content validity study: Development of an instrument for measuring Patient-Centered Communication. J Caring Sci 2015; 4(2): 165-78.
- Terwee CB, Bot SD, de Boer MR, van der Windt DA, Knol DL, Dekker J, et al. Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol 2007; 60(1): 34-42.
- Shamshiri H, Eshraghian MR, Ameli N, Nafissi S. Validation of the Persian version of the 40-item Amyotrophic Lateral Sclerosis Assessment Questionnaire. Iran J Neurol 2013; 12(3): 102-5.
- Murphy PL, Albert SM, Weber CM, Del Bene ML, Rowland LP. Impact of spirituality and religiousness on outcomes in patients with ALS. Neurology 2000; 55(10): 1581-4.
- Oh J, An JW, Oh SI, Oh KW, Kim JA, Lee JS, et al. Socioeconomic costs of amyotrophic lateral sclerosis according to staging system. Amyotroph Lateral Scler Frontotemporal Degener 2015; 16(3-4): 202-8.
- Maessen M, Post MW, Maille R, Lindeman E, Mooij R, Veldink JH, et al. Validity of the Dutch version of the Amyotrophic Lateral Sclerosis Assessment Questionnaire, ALSAQ-40, ALSAQ-5. Amyotroph Lateral Scler 2007; 8(2): 96-100.
- Thakore NJ, Pioro EP. Laughter, crying and sadness in ALS. J Neurol Neurosurg Psychiatry 2017; 88(10): 825-31.
- Ahmed A, Simmons Z. Pseudobulbar affect: prevalence and management. Ther Clin Risk Manag 2013; 9: 483-9.
- 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(5): 646-54.