Skip to main content
SpringerLink
Log in

Cross-cultural adaptation and validation for the Brazilian population of the instrument Amyotrophic Lateral Sclerosis-Specific Quality of Life–Short Form (ALSSQOL-SF)

  • Published:
Quality of Life Research Aims and scope Submit manuscript

Abstract

Objective

This study aims to produce and validate the version of the instrument Amyotrophic Lateral Sclerosis-Specific Quality of Life–Short Form (ALSSQOL-SF) into Portuguese, adapted to the Brazilian cultural context.

Methodology

It is a cross-cultural adaptation and validation study, carried out in two Brazilian Public Universities, in the period from March, 2017, to November, 2018, according to the six steps guidelines of cultural and linguistic adaptation proposed by Beaton et al. (Spine 25(24):3186–3191, 2000). The World Health Organization Quality of Life (WHOQOL-BREF) and the Amyotrophic Lateral Sclerosis Functional Rating Scale Revised (ALSFRS-R) were used for perform the validation. In order to analyze the correlations between the ALSSQOL-SF, WHOQOL-BREF, and ALSFRS-R scores, Spearman’s correlation coefficients were calculated. The project was approved by the Research Ethics Committee of the two participating institutions.

Result

All steps of the transcultural adaptation process were performed without intercurrence. The pilot test had the participation of 30 individuals, and the “Questionário Breve Específico de Qualidade de Vida para Pacientes com ELA (QVELA-20/Br)” tool was developed. During the validation phase, 100 patients were included, most of them were male (58%) with a median age of 59 years. The created version of the questionnaire are positively and strongly correlated with the WHOQOL-BREF and positively and weakly correlated with ALSFRS-R, as expected.

Conclusion

The study produced and validated a version of the instrument ALSSQOL-SF into Portuguese that is adapted to the Brazilian cultural context.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  1. Crespo, V., & James, M. L. (2016). Neuromuscular disease in the neurointensive care unit. Anesthesiology Clinics,34(3), 601–619.

    Article  Google Scholar 

  2. Montel, S., Albertini, L., Desnuelle, C., & Spitz, E. (2012). Evolution of quality of life, mental health, and coping strategies in amyotrophic lateral sclerosis: A pilot study. Journal of Palliative Medicine,15(11), 1181–1184.

    Article  Google Scholar 

  3. The WHOQOL Group. (1995). The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Social Science and Medicine,41(10), 1403–1409.

    Article  Google Scholar 

  4. Soofi, A. Y., Bello-Haas, V. D., Kho, M. E., & Letts, L. (2018). The impact of rehabilitative interventions on quality of life: A qualitative evidence synthesis of personal experiences of individuals with amyotrophic lateral sclerosis. Quality of Life Research,27(4), 845–856.

    Article  Google Scholar 

  5. Pagnini, F. (2013). Psychological wellbeing and quality of life in amyotrophic lateral sclerosis: A review. International Journal of Psychology,48(3), 194–205.

    Article  Google Scholar 

  6. Felgoise, S. H., Feinberg, R., Stephens, H. E., Barkhaus, P., Boylan, K., Caress, J., et al. (2018). ALS specific quality of life-short form (ALSSQOL-SF): A brief, reliable and valid version of the ALSSQOL-R. Muscle and Nerve,58(5), 646–654.

    Article  Google Scholar 

  7. Epton, J., Harris, R., & Jenkinson, C. (2009). Quality of life in amyotrophic lateral sclerosis/motor neuron disease: A structured review. Amyotrophic Lateral Sclerosis,10(1), 15–26.

    Article  Google Scholar 

  8. Mello, M. P., Orsini, M., Nascimento, O. J. M., Pernes, M., Lima, J. M. B., Heitor, C., et al. (2009). The occult patient: Quality of Life of caregivers and patients with diagnosis of amyotrophic lateral sclerosis. Revista Brasileira de Neurologia,45(4), 5–16.

    Google Scholar 

  9. Tramonti, F., Bongioanni, P., Di Bernardo, C., Davitti, S., & Rossi, B. (2012). Quality of life of patients with amyotrophic lateral sclerosis. Psychology, Health & Medicine,17(5), 621–628.

    Article  Google Scholar 

  10. Mokkink, L. B., Terwee, C. B., Patrick, D. L., Alonso, J., Stratford, P. W., Knol, D. L., et al. (2010). The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: An international Delphi study. Quality of Life Research,19(4), 539–549.

    Article  Google Scholar 

  11. Brooks, B. R., Miller, R. G., Swash, M., Munsat, T. L., & World Federation of Neurology Research Group on Motor Neuron Diseases. (2000). El Escorial revisited: Revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders,1(5), 293–299.

    Article  CAS  Google Scholar 

  12. Branco, L. M., Zanao, T., De Rezende, T. J., Casseb, R. F., Balthazar, M. F., Woolley, S. C., et al. (2017). Transcultural validation of the ALS-CBS Cognitive Section for the Brazilian population. Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration,18(1–2), 60–67.

    Article  Google Scholar 

  13. Dubois, B., Feldman, H. H., Jacova, C., Cummings, J. L., Dekosky, S. T., Barberger-Gateau, P., et al. (2010). Revising the definition of Alzheimer’s disease: A new lexicon. The Lancet Neurology,9(11), 1118–1127.

    Article  Google Scholar 

  14. Nitrini, R. (2014). Frontotemporal dementia and amyotrophic lateral sclerosis: Revisiting one of the first case reports with neuropathology examination. Dementia & Neuropsychologia,8(1), 83–86.

    Article  Google Scholar 

  15. Beaton, D. E., Bombardier, C., Guillemin, F., & Ferraz, M. B. (2000). Guidelines for the process of cross-cultural adaptation of self-report measures. Spine,25(24), 3186–3191.

    Article  CAS  Google Scholar 

  16. Polit, D. F., & Beck, C. T. (2006). The content validity index: Are you sure you know what’s being reported? critique and recommendations. Research in Nursing & Health,29(5), 489–497.

    Article  Google Scholar 

  17. The WHOQOL Group. (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine,28(3), 551–558.

    Article  Google Scholar 

  18. Fleck, M. P., Louzada, S., Xavier, M., Chachamovich, E., Vieira, G., Santos, L., et al. (2000). Application of the Portuguese version of the abbreviated instrument of quality life WHOQOL-bref. Revista de Saúde Pública,34(2), 178–183.

    Article  CAS  Google Scholar 

  19. Cedarbaum, J. M., Stambler, N., Malta, E., Fuller, C., Hilt, D., Thurmond, B., et al. (1999). The ALSFRS-R: A revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III). Journal of the Neurological Sciences,169(1–2), 13–21.

    Article  CAS  Google Scholar 

  20. Guedes, K., Pereira, C., Pavan, K., & Valerio, B. C. (2010). Cross-cultural adaptation and validation of ALS functional rating scale-revised in Portuguese language. Arquivos de Neuro-Psiquiatria,68(1), 44–47.

    Article  Google Scholar 

  21. Tsang, S., Royse, C. F., & Terkawi, A. S. (2017). Guidelines for developing, translating, and validating a questionnaire in perioperative and pain medicine. Saudi Journal of Anaesthesia,11(1), S80–S89.

    Article  Google Scholar 

  22. Schober, P., Boer, C., & Schwarte, L. A. (2018). Correlation coefficients: Appropriate use and interpretation. Anesthesia and Analgesia,126(5), 1763–1768.

    Article  Google Scholar 

  23. Streiner, D. L. (2003). Being inconsistent about consistency: When coefficient alpha does and doesn’t matter. Journal of Personality Assessment,80(3), 217–222.

    Article  Google Scholar 

  24. Simmons, Z. (2015). Patient-perceived outcomes and quality of life in ALS. Neurotherapeutics,12(2), 394–402.

    Article  Google Scholar 

  25. Alshehri, A., Lohman, E., Daher, N. S., Bahijri, K., Alghamdi, A., Altorairi, N., et al. (2017). Cross-cultural adaptation and psychometric properties testing of the arabic anterior knee pain scale. Medical Science Monitor,23, 1559–1582.

    Article  Google Scholar 

  26. Gomes, A., Ximenes, L., Mendes, E., Teixeira, O., Joventino, E., & Javorski, M. (2016). Translation and cultural adaptation of the self-efficacy and their child’s level of asthma control scale: Brazilian version. Texto & Contexto Enfermagem,25(3), e2950015.

    Google Scholar 

  27. Arafat, S. M., Chowdhury, H. R., Qusar, M. S., & Hafez, M. A. (2016). Cross cultural adaptation and psychometric validation of research instruments: A methodological review. Journal of Behavioral Health,5(3), 129–136.

    Article  Google Scholar 

  28. Epstein, J., Santo, R. M., & Guillemin, F. (2015). A review of guidelines for cross-cultural adaptation of questionnaires could not bring out a consensus. Journal of Clinical Epidemiology,68(4), 435–441.

    Article  Google Scholar 

  29. Epstein, J., Osborne, R. H., Elsworth, G. R., Beaton, D. E., & Guillemin, F. (2015). Cross-cultural adaptation of the health education impact questionnaire: Experimental study showed expert committee, not back-translation, added value. Journal of Clinical Epidemiology,68(4), 360–369.

    Article  Google Scholar 

  30. Ljungberg, A. K., Fossum, B., Furst, C. J., & Hagelin, C. L. (2015). Translation and cultural adaptation of research instruments: Guidelines and challenges: An example in FAMCARE-2 for use in Sweden. Informatics for Health & Social Care,40(1), 67–78.

    Article  Google Scholar 

  31. Perneger, T. V., Courvoisier, D. S., Hudelson, P. M., & Gayet-Ageron, A. (2015). Sample size for pre-tests of questionnaires. Quality of Life Research,24(1), 147–151.

    Article  Google Scholar 

  32. Melo, G. A. A., Silva, R. A., Pereira, F. G. F., & Caetano, J. A. (2017). Cultural adaptation and reliability of the general comfort questionnaire for chronic renal patients in Brazil. Revista Latino-Americana de Enfermagem,25, e2963.

    Article  Google Scholar 

  33. Dietrich-Neto, F., Callegaro, D., Dias-Tosta, E., Silva, H. A., Ferraz, M. E., Lima, J. M., et al. (2000). Amyotrophic lateral sclerosis in Brazil: 1998 national survey. Arquivos de Neuro-Psiquiatria,58(3A), 607–615.

    Article  CAS  Google Scholar 

  34. Mehta, P., Kaye, W., Raymond, J., Punjani, R., Larson, T., Cohen, J., et al. (2018). Prevalence of amyotrophic lateral sclerosis—United States, 2015. Morbidity and Mortality Weekly Report,67(46), 1285–1289.

    Article  Google Scholar 

  35. Simmons, Z., Felgoise, S. H., Bremer, B. A., Walsh, S. M., Hufford, D. J., Bromberg, M. B., et al. (2006). The ALSSQOL: Balancing physical and nonphysical factors in assessing quality of life in ALS. Neurology,67(9), 1659–1664.

    Article  CAS  Google Scholar 

  36. Cruz, L. N., Polanczyk, C. A., Camey, S. A., Hoffmann, J. F., & Fleck, M. P. (2011). Quality of life in Brazil: Normative values for the WHOQOL-bref in a southern general population sample. Quality of Life Research,20(7), 1123–1129.

    Article  Google Scholar 

  37. Robbins, R. A., Simmons, Z., Bremer, B. A., Walsh, S. M., & Fischer, S. (2001). Quality of life in ALS is maintained as physical function declines. Neurology,56(4), 442–444.

    Article  CAS  Google Scholar 

  38. Cupp, J., Simmons, Z., Berg, A., Felgoise, S. H., Walsh, S. M., & Stephens, H. E. (2011). Psychological health in patients with ALS is maintained as physical function declines. Amyotrophic Lateral Sclerosis,12(4), 290–296.

    Article  Google Scholar 

  39. Mayoral, V. F. S., Fukushima, F. B., Rodrigues, A. M., Carvalho, R. P., Carvalho, L. P., Pinheiro, L., et al. (2018). Cross-cultural adaptation of the physician orders for life-sustaining treatment form to Brazil. Journal of Palliative Medicine,21(6), 815–819.

    Article  Google Scholar 

Download references

Acknowledgements

We thank the expert committee members: Alessandro Ferrari Jacinto, MD PhD; Felipe Augusto dos Santos; Fernanda Bono Fukushima, MD PhD; Laura Cardia Gomes Lopes, MD PhD; Luciana Kerche do Amaral Cavalcante, MSc; and Monica Taufic Rosolem, PhD. Our special thanks to the great contributions of Professor Doralina Guimarães Brum Souza, MD MSc PhD. This research had been possible due to the authorization and insights given by Professor Zachary Simmons.

Funding

Maisa Vitória Gayoso was supported by Sao Paulo Research Foundation (FAPESP-2016/22437-0). This study was financed in part by the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior—Brasil (CAPES)—Finance Code 001.

Author information

Authors and Affiliations

  1. Anesthesiology Department, São Paulo State University (UNESP), Medical School, Av. Prof. Mário Rubens Guimarães Montenegro s/n, Botucatu, SP, 18618687, Brazil

    Maisa Vitória Gayoso, Flávia Seullner Domingues & Guilherme Antonio Moreira de Barros

  2. Neurology Department, University of Campinas (UNICAMP), Medical School, Campinas, SP, Brazil

    Marcondes Cavalcante França Junior

  3. Department of Clinical Psychology, School of Professional & Applied Psychology, Philadelphia, PA, USA

    Stephanie H. Felgoise

  4. Department of Neurology and Neurosurgery, Federal University of São Paulo (UNIFESP), São Paulo School of Medicine, São Paulo, SP, Brazil

    Acary Souza Bulle Oliveira

Authors
  1. Maisa Vitória Gayoso
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Flávia Seullner Domingues
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Marcondes Cavalcante França Junior
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Stephanie H. Felgoise
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Acary Souza Bulle Oliveira
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Guilherme Antonio Moreira de Barros
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Guilherme Antonio Moreira de Barros.

Ethics declarations

Conflict of interest

No potential conflict of interest was reported by the authors.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Additional information

Publisher's Note

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

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Gayoso, M.V., Domingues, F.S., França Junior, M.C. et al. Cross-cultural adaptation and validation for the Brazilian population of the instrument Amyotrophic Lateral Sclerosis-Specific Quality of Life–Short Form (ALSSQOL-SF). Qual Life Res 29, 805–813 (2020). https://doi.org/10.1007/s11136-019-02342-2

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-019-02342-2

Keywords

Search

Navigation