Skip to main content
SpringerLink
Log in

Systemic Sclerosis Quality of Life Questionnaire (SScQoL): translation into Turkish and assessing its psychometric properties

  • ORIGINAL ARTICLE
  • Published:
Clinical Rheumatology Aims and scope Submit manuscript

Abstract

Background

Systemic sclerosis (SSc) is a chronic autoimmune disease that affects the connective tissues and leads to physical, emotional, and social challenges for patients. Evaluating health-related quality of life (HRQoL) with a disease-specific tool may be preferable for improving patient care and treatment outcomes. The aim of this study was to translate the Systemic Sclerosis Quality of Life Questionnaire (SScQoL) into Turkish and to investigate its psychometric properties.

Methods

Eighty-six patients with SSc (mean age 51.8 ± 11.7 years, 80 females) participated in the study. Convergent validity was explored by correlation analyses between Turkish SScQoL and Short-Form 36 (SF-36), European Quality of Life Survey-5 Dimensions (EQ-5D), EQ-5D Visual Analog Scale (EQ-VAS), and Scleroderma Health Assessment Questionnaire (SHAQ). Cronbach’s alpha was calculated to test internal consistency. Turkish SScQoL was readministered after 7–14 days to fifty-eight patients for determining test re-test reliability. Intraclass correlation coefficients in 95% confidence interval (ICCs [95%CI]) were calculated to examine the agreement between two assessments. Values greater than 15% and an absolute skewness value < 1 were recognized as the presence of a floor or ceiling effect.

Results

SScQoL correlated significantly with SF-36 subdomains (r = -0.347 to -0.618, p < 0.01), EQ-5D (r = -0.535, p < 0.01), EQ-VAS (r = -0.636, p < 0.01), and SHAQ global score (r = 0.521, p < 0.01). SScQoL demonstrated excellent internal consistency (Cronbach’s alpha = 0.917), and good to excellent test–retest reliability (ICC [95%CI] = 0.85 [0.76–0.91]). No floor/ceiling effects were observed.

Conclusion

The Turkish version of SScQoL seems to have adequate psychometric properties and can be used to evaluate HRQoL in clinical and research settings.

Key points

• Turkish version of SScQoL is a valid and reliable tool for measuring health-related quality of life of patients with systemic sclerosis.

• SScQoL is the only diseases-specific quality of life measurement for systemic sclerosis available in Turkish.

• Patients with limited and diffuse SSc seem to be similar in terms of self-reported health-related quality of life.

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

Data availability

The study data is available from the corresponding author on reasonable request.

References

  1. Kowal-Bielecka O, Fransen J, Avouac J et al (2017) Update of EULAR recommendations for the treatment of systemic sclerosis. Ann Rheum Dis 76:1327–1339. https://doi.org/10.1136/annrheumdis-2016-209909

    Article  PubMed  Google Scholar 

  2. Denton CP, Khanna D (2017) Systemic sclerosis. Lancet 390:1685–1699. https://doi.org/10.1016/s0140-6736(17)30933-9

    Article  PubMed  Google Scholar 

  3. Ndosi M, Alcacer-Pitarch B, Allanore Y et al (2018) Common measure of quality of life for people with systemic sclerosis across seven European countries: a cross-sectional study. Ann Rheum Dis 77:1032–1038. https://doi.org/10.1136/annrheumdis-2017-212412

    Article  PubMed  Google Scholar 

  4. Sierakowska M, Doroszkiewicz H, Sierakowska J et al (2019) Factors associated with quality of life in systemic sclerosis: a cross-sectional study. Qual Life Res 28:3347–3354. https://doi.org/10.1007/s11136-019-02284-9

    Article  PubMed  PubMed Central  Google Scholar 

  5. Kocher A, Ndosi M, Denhaerynck K et al (2021) A rare disease patient-reported outcome measure: revision and validation of the German version of the Systemic Sclerosis Quality of Life Questionnaire (SScQoL) using the Rasch model. Orphanet J Rare Dis 16:356. https://doi.org/10.1186/s13023-021-01944-9

    Article  PubMed  PubMed Central  Google Scholar 

  6. Karimi M, Brazier J (2016) Health, Health-Related Quality of Life, and Quality of Life: What is the Difference? Pharmacoeconomics 34:645–649. https://doi.org/10.1007/s40273-016-0389-9

    Article  PubMed  Google Scholar 

  7. Strickland G, Pauling J, Cavill C, McHugh N (2012) Predictors of health-related quality of life and fatigue in systemic sclerosis: evaluation of the EuroQol-5D and FACIT-F assessment tools. Clin Rheumatol 31:1215–1222. https://doi.org/10.1007/s10067-012-1997-1

    Article  PubMed  Google Scholar 

  8. Hudson M, Thombs BD, Steele R, Panopalis P, Newton E, Baron M (2009) Health-related quality of life in systemic sclerosis: a systematic review. Arthritis Rheum 61:1112–1120. https://doi.org/10.1002/art.24676

    Article  PubMed  Google Scholar 

  9. Ross L, Nikpour M, D’Aoust J, Khanna D, Merkel PA, Pauling JD, Baron M (2022) Patient and Physician Global Assessments of Disease Status in Systemic Sclerosis. Arthritis Care Res (Hoboken). https://doi.org/10.1002/acr.25056

    Article  PubMed  Google Scholar 

  10. Cossutta R, Zeni S, Soldi A, Colombelli P, BelottiMasserini A, Fantini F (2002) Evaluation of quality of life in patients with systemic sclerosis by administering the SF-36 questionnaire. Reumatismo 54:122–127. https://doi.org/10.4081/reumatismo.2002.122

    Article  CAS  PubMed  Google Scholar 

  11. Gualtierotti R, Ingegnoli F, Scalone L, Cortesi P, Bruschi E, Gerosa M, Meroni PL (2016) Feasibility, acceptability and construct validity of EQ-5D in systemic sclerosis. Swiss Med Wkly 146:w14394. https://doi.org/10.4414/smw.2016.14394

    Article  PubMed  Google Scholar 

  12. Kwakkenbos L, Thombs BD, Khanna D et al (2017) Performance of the Patient-Reported Outcomes Measurement Information System-29 in scleroderma: a Scleroderma Patient-centered Intervention Network Cohort Study. Rheumatology (Oxford) 56:1302–1311. https://doi.org/10.1093/rheumatology/kex055

    Article  PubMed  Google Scholar 

  13. Reay N (2008) The quality of life in patients with diffuse and limited systemic sclerosis. Doctoral Dissertation, Leeds: University

  14. Alian SM, Sherby NA, Sarhan SA (2021) Cultural adaptation and validation of the Systemic Sclerosis Quality of Life questionnaire into Arabic language. Clin Rheumatol 40:1409–1416. https://doi.org/10.1007/s10067-020-05373-0

    Article  PubMed  Google Scholar 

  15. Sandqvist G, Hesselstrand R (2019) Validity of the Swedish version of the systemic sclerosis quality of life questionnaire (SSCQoL): A novel measure of quality of life for patients with systemic sclerosis. Ann Rheum Dis 78:855–857. https://doi.org/10.1136/annrheumdis-2018-214260

    Article  PubMed  Google Scholar 

  16. Beaton DE, Bombardier C, Guillemin F, Ferraz MB (2000) Guidelines for the process of cross-cultural adaptation of self-report measures. Spine (Phila Pa 1976) 25:3186–3191. https://doi.org/10.1097/00007632-200012150-00014

    Article  CAS  PubMed  Google Scholar 

  17. van den Hoogen F, Khanna D, Fransen J et al (2013) 2013 classification criteria for systemic sclerosis: an American college of rheumatology/European league against rheumatism collaborative initiative. Ann Rheum Dis 72:1747–1755. https://doi.org/10.1136/annrheumdis-2013-204424

    Article  PubMed  Google Scholar 

  18. Li L, Cui Y, Chen S, Zhao Q, Fu T, Ji J, Li L, Gu Z (2018) The impact of systemic sclerosis on health-related quality of life assessed by SF-36: A systematic review and meta-analysis. Int J Rheum Dis 21:1884–1893. https://doi.org/10.1111/1756-185x.13438

    Article  PubMed  Google Scholar 

  19. Koçyigit H, Aydemir O, Olmez N, Memis A (1999) SF-36’nin Turkce icin guvenilirligi ve gecerliligi. J Drug Ther 12:102–106

    Google Scholar 

  20. KahyaoğluSüt H, Unsar S (2011) Is EQ-5D a valid quality of life instrument in patients with acute coronary syndrome? Anatol J Cardiol 11:156–162. https://doi.org/10.5152/akd.2011.037

    Article  Google Scholar 

  21. TemizKaradag D, Karakas F, Tekeoglu S, Yazici A, Isik OO, Cefle A (2019) Validation of Turkish version of the Scleroderma Health Assessment Questionnaire. Clin Rheumatol 38:1917–1923. https://doi.org/10.1007/s10067-019-04494-5

    Article  Google Scholar 

  22. Khanna D, Furst DE, Clements PJ et al (2017) Standardization of the modified Rodnan skin score for use in clinical trials of systemic sclerosis. J Scleroderma Relat Disord 2:11–18. https://doi.org/10.5301/jsrd.5000231

    Article  PubMed  Google Scholar 

  23. Bobak CA, Barr PJ, O’Malley AJ (2018) Estimation of an inter-rater intra-class correlation coefficient that overcomes common assumption violations in the assessment of health measurement scales. BMC Med Res Methodol 18:93. https://doi.org/10.1186/s12874-018-0550-6

    Article  PubMed  PubMed Central  Google Scholar 

  24. Stratford PW, Goldsmith CH (1997) Use of the standard error as a reliability index of interest: an applied example using elbow flexor strength data. Phys Ther 77:745–750. https://doi.org/10.1093/ptj/77.7.745

    Article  CAS  PubMed  Google Scholar 

  25. Mukaka MM (2012) Statistics corner: A guide to appropriate use of correlation coefficient in medical research. Malawi Med J 24:69–71

    CAS  PubMed  PubMed Central  Google Scholar 

  26. McHorney CA, Tarlov AR (1995) Individual-patient monitoring in clinical practice: are available health status surveys adequate? Qual Life Res 4:293–307. https://doi.org/10.1007/bf01593882

    Article  CAS  PubMed  Google Scholar 

  27. Bulmer MG (1979) Principles of statistics. Mineola, New York

    Google Scholar 

  28. van Leeuwen NM, Ciaffi J, Liem SIE, Huizinga TWJ, de Vries-Bouwstra JK (2021) Health-related quality of life in patients with systemic sclerosis: evolution over time and main determinants. Rheumatology (Oxford) 60:3646–3655. https://doi.org/10.1093/rheumatology/keaa827

    Article  PubMed  Google Scholar 

  29. Morrisroe K, Hudson M, Baron M et al (2018) Determinants of health-related quality of life in a multinational systemic sclerosis inception cohort. Clin Exp Rheumatol 36(Suppl 113):53–60

    PubMed  Google Scholar 

Download references

Acknowledgements

None.

Funding

The authors declare that no funds, grants, or other support were received during the preparation of this manuscript.

Author information

Authors and Affiliations

  1. Department of Physiotherapy and Rehabilitation, Faculty of Health Sciences, Izmir Katip Celebi University, Balatcik, Izmir, Turkey

    Devrim Can Sarac, Deniz Bayraktar, Serife Demirbas, Berfin Coskun & Kubra Erol

  2. Department of Physiotherapy and Rehabilitation, Faculty of Health Sciences, Gazi University, Balatcik, Ankara, Turkey

    Nurten Gizem Tore & Deran Oskay

  3. Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Izmir Katip Celebi University, Izmir, Turkey

    Idil Kurut Aysin, Eda Otman, Mustafa Ozmen & Servet Akar

  4. Department of Physiotherapy and Rehabilitation, Institute of Health Sciences, Izmir Katip Celebi University, Izmir, Turkey

    Israfil Inanc, Oguz Ustun & Emre Alp Akatay

  5. Department of Rheumatology, Izmir Katip Celebi University Ataturk Training and Research Hospital, Izmir, Turkey

    Sercan Gucenmez

Authors
  1. Devrim Can Sarac
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Deniz Bayraktar
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Nurten Gizem Tore
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Idil Kurut Aysin
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Eda Otman
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Israfil Inanc
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Serife Demirbas
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Berfin Coskun
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Kubra Erol
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Oguz Ustun
    View author publications

    You can also search for this author in PubMed Google Scholar

  11. Emre Alp Akatay
    View author publications

    You can also search for this author in PubMed Google Scholar

  12. Deran Oskay
    View author publications

    You can also search for this author in PubMed Google Scholar

  13. Sercan Gucenmez
    View author publications

    You can also search for this author in PubMed Google Scholar

  14. Mustafa Ozmen
    View author publications

    You can also search for this author in PubMed Google Scholar

  15. Servet Akar
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

All authors contributed to the study conception and design. Material preparation and data collection were performed by Nurten Gizem Tore, Idil Kurut Aysin, Eda Otman, Israfil Inanc, Serife Demirbas, Berfin Coskun, Kubra Erol, Oguz Ustun, Emre Alp Akatay, and Sercan Gucenmez. Statistical analysis was performed by Devrim Can Sarac. The first draft of the manuscript was written by Devrim Can Sarac. Critical review of the first draft of the manuscript was performed by Deniz Bayraktar, Deran Oskay, Mustafa Ozmen, and Servet Akar. All authors read and approved the final version of the manuscript.

Corresponding author

Correspondence to Devrim Can Sarac.

Ethics declarations

Ethics approval

This study was performed in line with the principles of the Declaration of Helsinki. Ethical approval was obtained from the Izmir Katip Celebi University Non-Interventional Clinical Studies Institutional Review Board at 25.08.2022, with number: 0344.

Consent to participate/publish

All participants provided their written consents prior their participation in the study.

Disclosures

None.

Additional information

Publisher's note

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

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Sarac, D.C., Bayraktar, D., Tore, N.G. et al. Systemic Sclerosis Quality of Life Questionnaire (SScQoL): translation into Turkish and assessing its psychometric properties. Clin Rheumatol 42, 2135–2143 (2023). https://doi.org/10.1007/s10067-023-06626-4

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10067-023-06626-4

Keywords

Search

Navigation