Skip to main content

Advertisement

SpringerLink
Log in

Cross-cultural adaptation of the SWAL-QOL and the Sydney Swallow Questionnaire (SSQ) into French-Canadian and preliminary assessment for their use in an oculopharyngeal muscular dystrophy (OPMD) population

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

Abstract

Purpose

Patient-reported outcomes (PRO) assessing dysphagia are an essential component of clinical trials to consider how patients feel and function in response to treatments. The selected PRO needs to be translated in several languages using a systematic process ensuring its validity and equivalence for use in multicenter clinical trials. The main objectives were to translate the SWAL-QOL and the Sydney Swallow Questionnaire (SSQ) into French Canadian (SWAL-QOL-FC and SSQ-FC) and to assess their appropriateness for patients with oculopharyngeal muscular dystrophy (OPMD).

Methods

A forward- and back-translation process was followed including independent mother-tongue translators followed by committee review. Known-groups validity was assessed by comparing scores of OPMD French-Canadian participants (n = 21) known to differ in dysphagia severity according to the 80-ml drinking test score. A Mann–Whitney test was used to compare the mean scores. Cognitive interviews were conducted later on to ensure a posteriori cultural equivalence among French-Canadian participants (n = 28).

Results

Evidences of adequate known-groups validity was shown for the SSQ-FC. Only two domains out of 10 of the SWAL-QOL-FC (burden and eating duration) showed adequate known-groups validity. In addition, the difference in the mean composite score was not significant. Several conceptual equivalence issues were found in both questionnaires as a result of the cognitive interviews.

Conclusion

This study provided evidence that the SSQ-FC presents better validity than the SWAL-QOL-FC in a small sample size of OPMD participants. The findings of the cognitive interviews suggest the need to develop an OPMD-specific questionnaire to capture better the whole spectrum of disease severity.

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

Similar content being viewed by others

References

  1. Becher, M. W., et al. (2001). Oculopharyngeal muscular dystrophy in Hispanic New Mexicans. JAMA, 286(19), 2437–2440.

    Article  CAS  PubMed  Google Scholar 

  2. Barbeau, A. (1966). The syndrome of hereditary late onset ptosis and dysphagia in French Canada. In E. Kuhn (Ed.), Progressive Muskeldystrophie Myotonie · Myasthenie (pp. 102–109). Berlin: Springer-Verlag.

    Chapter  Google Scholar 

  3. Blumen, S. C., et al. (1993). Clinical features of oculopharyngeal muscular dystrophy among Bukhara Jews. Neuromuscular Disorders, 3(5–6), 575–577.

    Article  CAS  PubMed  Google Scholar 

  4. Duranceau, A., Forand, M. D., & Fauteux, J. P. (1980). Surgery in oculopharyngeal muscular dystrophy. American Journal of Surgery, 139(1), 33–39.

    Article  CAS  PubMed  Google Scholar 

  5. Castell, J. A., et al. (1995). Manometric characteristics of the pharynx, upper esophageal sphincter, esophagus, and lower esophageal sphincter in patients with oculopharyngeal muscular dystrophy. Dysphagia, 10(1), 22–26.

    Article  CAS  PubMed  Google Scholar 

  6. Brisson, J. D., et al. (2020). A study of impairments in oculopharyngeal muscular dystrophy. Muscle & Nerve, 62(2), 201–207.

    Article  Google Scholar 

  7. Speyer, R. (2013). Oropharyngeal dysphagia: Screening and assessment. Otolaryngologic Clinics of North America, 46(6), 989–1008.

    Article  PubMed  Google Scholar 

  8. U.S. Department of Health and Human Services FDA Center for Drug Evaluation and Research, U.S. Department of Health and Human Services FDA Center for Biologics Evaluation and Research, & U.S. Department of Health and Human Services FDA Center for Devices and Radiological Health (2006). Guidance for industry: Patient-reported outcome measures: Use in medical product development to support labeling claims: Draft guidance. Health and Quality of Life Outcomes, 4, 79.

  9. Timmerman, A. A., et al. (2014). Psychometric characteristics of health-related quality-of-Life questionnaires in oropharyngeal dysphagia. Dysphagia, 29(2), 183–198.

    Article  PubMed  Google Scholar 

  10. Orlandoni, N., & Peladic, N. J. (2016). Health-related quality of life and functional health status questionnaires in oropharyngeal dysphagia. The Journal of Aging Research and Clinical Practice, 5(1), 31–37.

    Google Scholar 

  11. Côté, C., et al. (2019). The requirement for a disease-specific patient-reported outcome measure of dysphagia in oculopharyngeal muscular dystrophy. Muscle & Nerve, 59(4), 445–450.

    Article  Google Scholar 

  12. Périé, S., et al. (2014). Autologous myoblast transplantation for oculopharyngeal muscular dystrophy: A phase I/IIa clinical study. Molecular Therapy, 22(1), 219–225.

    Article  PubMed  Google Scholar 

  13. Argov, Z., et al. (2016). Intravenous Trehalose Improves Dysphagia and Muscle Function in Oculopharyngeal Muscular Dystrophy (OPMD): Preliminary Results of 24 Weeks Open Label Phase 2 Trial (S28.004). Neurology, 86(16 Supplement), S28.004.

    Google Scholar 

  14. McHorney, C. A., et al. (2000). The SWAL-QOL outcomes tool for oropharyngeal dysphagia in adults : I. Conceptual foundation and item development. Dysphagia, 15(3), 115–121.

    CAS  PubMed  Google Scholar 

  15. McHorney, C. A. (2002). The potential clinical value of quality-of-life information response to Martin. Medical Care, 40(6 Suppl), 56–62.

    Google Scholar 

  16. Plowman-Prine, E. K., et al. (2009). The relationship between quality of life and swallowing in Parkinson’s disease. Movement Disorders, 24(9), 1352–1358.

    Article  PubMed  PubMed Central  Google Scholar 

  17. McHorney, C. A., et al. (2002). The SWAL-QOL and SWAL-CARE outcomes tool for oropharyngeal dysphagia in adults : III. Documentation of reliability and validity. Dysphagia, 17(2), 97–114.

    PubMed  Google Scholar 

  18. Rinkel, R. N., et al. (2009). The psychometric and clinical validity of the SWAL-QOL questionnaire in evaluating swallowing problems experienced by patients with oral and oropharyngeal cancer. Oral Oncology, 45(8), e67-71.

    Article  PubMed  Google Scholar 

  19. Rinkel, R. N., et al. (2015). Validity of patient-reported swallowing and speech outcomes in relation to objectively measured oral function among patients treated for oral or oropharyngeal cancer. Dysphagia, 30(2), 196–204.

    Article  CAS  PubMed  Google Scholar 

  20. Rinkel, R. N., et al. (2014). Patient-reported symptom questionnaires in laryngeal cancer: Voice, speech and swallowing. Oral Oncology, 50(8), 759–764.

    Article  CAS  PubMed  Google Scholar 

  21. Tabor, L., et al. (2016). Defining swallowing-related quality of life profiles in individuals with amyotrophic lateral sclerosis. Dysphagia, 31(3), 376–382.

    Article  PubMed  PubMed Central  Google Scholar 

  22. Youssof, S., et al. (2016). Dysphagia-related Quality of Life in oculopharyngeal muscular dystrophy: Psychometric properties of the SWAL-QOL instrument. Muscle & Nerve, 56(1), 28–35.

    Article  Google Scholar 

  23. Dwivedi, R. C., et al. (2010). Validation of the Sydney Swallow Questionnaire (SSQ) in a cohort of head and neck cancer patients. Oral Oncology, 46(4), e10–e14.

    Article  PubMed  Google Scholar 

  24. Wallace, K. L., Middleton, S., & Cook, I. J. (2000). Development and validation of a self-report symptom inventory to assess the severity of oral-pharyngeal dysphagia. Gastroenterology, 118(4), 678–687.

    Article  CAS  PubMed  Google Scholar 

  25. Manjaly, J., et al. (2011). Cricopharyngeal dilatation for the long-term treatment of dysphagia in oculopharyngeal muscular dystrophy. Dysphagia, 27, 216–220.

    Article  PubMed  Google Scholar 

  26. Khaldoun, E., Woisard, V., & Verin, E. (2009). Validation in French of the SWAL-QOL scale in patients with oropharyngeal dysphagia. Gastroenterologie Clinique et Biologique, 33(3), 167–171.

    Article  CAS  PubMed  Google Scholar 

  27. Audag, N., et al. (2019). Validation and reliability of the French version of the sydney swallow questionnaire. Dysphagia, 34(4), 556–566.

    Article  PubMed  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  PubMed  Google Scholar 

  29. Wild, D., et al. (2005). Principles of good practice for the translation and cultural adaptation process for Patient-Reported Outcomes (PRO) Measures: Report of the ISPOR task force for translation and cultural adaptation. Value Health, 8(2), 94–104.

    Article  PubMed  Google Scholar 

  30. Mokkink, L. B., et al. (2010). Inter-rater agreement and reliability of the COSMIN (COnsensus-based Standards for the selection of health status Measurement Instruments) checklist. BMC Medical Research Methodology, 10, 82.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Bouchard, J. P., et al. (1997). Recent studies on oculopharyngeal muscular dystrophy in Québec. Neuromuscular Disorders: NMD, 7(Suppl 1), S22–S29.

    Article  PubMed  Google Scholar 

  32. Bouchard, J. P., et al. (1992). A simple test for the detection of the dysphagia in members of families with oculopharyngeal muscular dystrophy (OPMD). The Canadian Journal of Neurological Sciences. Le Journal Canadien des Sciences Neurologiques, 19, 296–297.

    Google Scholar 

  33. Willis, G. B. (2005). Cognitive Interviewing: A tool for Improving Questionnaire Design. London: SAGE Publications.

    Book  Google Scholar 

  34. Herdman, M., Fox-Rushby, J., & Badia, X. (1998). A model of equivalence in the cultural adaptation of HRQoL instruments: The universalist approach. Quality of Life Research, 7(4), 323–335.

    Article  CAS  PubMed  Google Scholar 

  35. Wuensch, K.L. Nonparametric Effect Size Estimators. 2015. Available from: http://core.ecu.edu/psyc/wuenschk/docs30/Nonparametric-EffectSize.pdf.

  36. Kurtz, N. S., et al. (2019). Patient-reported disease burden in oculopharyngeal muscular dystrophy. Muscle and Nerve, 60(6), 724–731.

    Article  PubMed  Google Scholar 

  37. Hilgers, R. D., et al. (2016). Design and analysis of clinical trials for small rare disease populations. Journal of Rare Diseases Research & Treatment, 1(3), 53–60.

    Article  Google Scholar 

  38. Kazis, L. E., Anderson, J. J., & Meenan, R. F. (1989). Effect sizes for interpreting changes in health status. Medical Care, 27(3 Suppl), S178–S189.

    Article  CAS  PubMed  Google Scholar 

  39. Szczesniak, M. M., et al. (2014). The normative range for and age and gender effects on the Sydney Swallow Questionnaire (SSQ). Dysphagia, 29(5), 535–538.

    Article  PubMed  Google Scholar 

  40. Duranceau, A. (2013). Disorders of the Pharyngoesophageal Junction. In C. J. Yeo (Ed.), Shackelford’s surgery of the alimentary tract (7th ed.). Elsevier/Saunders: Philadelphia PA.

    Google Scholar 

Download references

Funding

At the time of the study, CC held a student award from the Groupe de recherche interdisciplinaire sur les maladies neuromusculaires (GRIMN)—Bioblast and a doctoral fellowship from FQRS. CG holds a Junior 2 FQRS Researcher. This project was supported by Bioblast Pharma, LTD. The content is solely the responsibility of the authors.

Author information

Authors and Affiliations

  1. Faculty of Medicine and Health Sciences, University of Sherbrooke, Sherbrooke, Québec, Canada

    Claudia Côté & Cynthia Gagnon

  2. Groupe de recherche interdisciplinaire sur les maladies neuromusculaires, Centre intégré universitaire de santé et de services sociaux du Saguenay-Lac-St-Jean, Saguenay, Québec, Canada

    Claudia Côté, Julie Fortin & Cynthia Gagnon

  3. Centre de recherche Charles-Le Moyne-Saguenay-Lac-St-Jean sur les innovations en santé, University of Sherbrooke, Sherbrooke, Québec, Canada

    Claudia Côté & Cynthia Gagnon

  4. Department of Neurology and Neurosurgery, Montreal Neurological Institute, McGill University, Montreal, Québec, Canada

    Bernard Brais

  5. Department of Neurology, University of New Mexico, Albuquerque, New Mexico, USA

    Sarah Youssof

Authors
  1. Claudia Côté
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Julie Fortin
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Bernard Brais
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Sarah Youssof
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Cynthia Gagnon
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Claudia Côté.

Ethics declarations

Conflicts of interest

The authors declare that they have no conflict of interest.

Ethical approval

This study was performed at the Hôpital de Jonquière, Centre intégré universitaire de santé et services sociaux (CIUSSS) du Saguenay-Lac-St-Jean and was conducted with the ethical approval of CIUSSS du Saguenay-Lac-St-Jean, Québec, Canada.

Consent to participate

All participants have provided inform consent form.

Additional information

Publisher's Note

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

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary file1 (PDF 64.4 KB)

Below is the link to the electronic supplementary material.

Supplementary file1 (PDF 119 KB)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Côté, C., Fortin, J., Brais, B. et al. Cross-cultural adaptation of the SWAL-QOL and the Sydney Swallow Questionnaire (SSQ) into French-Canadian and preliminary assessment for their use in an oculopharyngeal muscular dystrophy (OPMD) population. Qual Life Res 31, 293–302 (2022). https://doi.org/10.1007/s11136-021-02915-0

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-021-02915-0

Keywords

Search

Navigation