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Association between quality of life and clinical characteristics in patients with morphea

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Abstract

Background

Morphea can lead to considerable cosmetic or functional impairment; nevertheless, health-related quality of life (HRQoL) is rarely documented in adult morphea patients.

Objective

To investigate the impact of morphea on HRQoL and to identify determinants of impaired HRQoL.

Methods

A cross-sectional study has been carried out among adult morphea patients. HRQoL was evaluated by the Dermatology Life Quality Index (DLQI). The modified Localised Scleroderma Skin Severity Index (mLoSSI) and the Localised Scleroderma Damage Index (LoSDI) were applied to evaluate disease activity and damage, respectively. Physician Global Assessment of Activity and Damage (PGA-A, PGA-D) were also completed. Determinants of HRQoL were analysed by multiple regression.

Results

A total of 101 patients (84% females) entered the study, with a mean age of 56.8 ± 14.8 years. Median mLoSSI, LoSDI, PGA-A and PGA-D scores were 8, 5, 9 and 9 points, respectively. Patients with generalised localised (51%) and plaque-type morphea (45%) had median total DLQI scores of 4 and 1, respectively. Embarrassment (53%), itchy or painful skin (46%), and clothing issues (43%) were the most commonly reported problems in the DLQI. Female gender, generalised morphea, higher disease activity (PGA-A score) and involvement of hands and/or feet were significant predictors of impaired HRQoL (p < 0.05).

Conclusion

This study represents the largest sample of adult morphea patients surveyed about their HRQoL in Europe. The frequent occurrence of embarrassment warrants an increased attention to improve patients’ mental health. Care must be taken in case of involvement of functionally sensitive areas, as these cases might require more intensive treatment.

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Abbreviations

DLQI:

Dermatology Life Quality Index

EDF:

European Dermatology Forum

HRQoL:

Health-related quality of life

LoSCAT:

Localised Scleroderma Cutaneous Assessment Tool

LoSDI:

Localised Scleroderma Damage Index

mLoSSI:

Modified Localised Scleroderma Skin Severity Index

PGA-A:

Physician Global Assessment of Activity

PGA-D:

Physician Global Assessment of Damage

UVA1:

Ultra violet A1

PUVA:

Psoralen and ultra violet A

References

  1. Silman, A., Jannini, S., Symmons, D., & Bacon, P. (1988). An epidemiological study of scleroderma in the West Midlands. British Journal of Rheumatology, 27(4), 286–290.

    Article  CAS  PubMed  Google Scholar 

  2. Peterson, L. S., Nelson, A. M., Su, W. P., Mason, T., O’Fallon, W. M., & Gabriel, S. E. (1997). The epidemiology of morphea (localized scleroderma) in Olmsted County 1960–1993. Journal of Rheumatology, 24(1), 73–80.

    CAS  PubMed  Google Scholar 

  3. Knobler, R., Moinzadeh, P., Hunzelmann, N., Kreuter, A., Cozzio, A., Mouthon, L., et al. (2017). European dermatology forum S1-guideline on the diagnosis and treatment of sclerosing diseases of the skin, Part 2: Scleromyxedema, scleredema and nephrogenic systemic fibrosis. Journal of the European Academy of Dermatology and Venereology, 31(9), 1401–1424.

    Article  CAS  PubMed  Google Scholar 

  4. Das, S., Bernstein, I., & Jacobe, H. (2014). Correlates of self-reported quality of life in adults and children with morphea. Journal of the American Academy of Dermatology, 70(5), 904–910.

    Article  PubMed  PubMed Central  Google Scholar 

  5. Tollefson, M. M., & Witman, P. M. (2007). En coup de sabre morphea and Parry-Romberg syndrome: A retrospective review of 54 patients. Journal of the American Academy of Dermatology, 56(2), 257–263.

    Article  PubMed  Google Scholar 

  6. Bielsa, I., & Ariza, A. (2007). Deep morphea. Seminars in Cutaneous Medicine and Surgery, 26(2), 90–95.

    Article  CAS  PubMed  Google Scholar 

  7. Christen-Zaech, S., Hakim, M. D., Afsar, F. S., & Paller, A. S. (2008). Pediatric morphea (localized scleroderma): Review of 136 patients. Journal of the American Academy of Dermatology, 59(3), 385–396.

    Article  PubMed  Google Scholar 

  8. Leitenberger, J. J., Cayce, R. L., Haley, R. W., Adams-Huet, B., Bergstresser, P. R., & Jacobe, H. T. (2009). Distinct autoimmune syndromes in morphea: A review of 245 adult and pediatric cases. Archives of Dermatology, 145(5), 545–550.

    Article  PubMed  PubMed Central  Google Scholar 

  9. Mills, S. D., Fox, R. S., & Malcarne, V. L. (2015). Body image in children with morphea: A systematic review. Pediatric Dermatology, 32(4), e188–e190.

    Article  PubMed  Google Scholar 

  10. Lis-Swiety, A., Janicka, I., Skrzypek-Salamon, A., & Brzezinska-Wcislo, L. (2017). A systematic review of tools for determining activity of localized scleroderma in paediatric and adult patients. Journal of the American Academy of Dermatology, 31(1), 30–37.

    Article  CAS  Google Scholar 

  11. Klimas, N. K., Shedd, A. D., Bernstein, I. H., & Jacobe, H. (2015). Health-related quality of life in morphoea. British Journal of Dermatology, 172(5), 1329–1337.

    Article  CAS  PubMed  Google Scholar 

  12. Kroft, E. B., de Jong, E. M., & Evers, A. W. (2009). Psychological distress in patients with morphea and eosinophilic fasciitis. Archives of Dermatology, 145(9), 1017–1022.

    Article  PubMed  Google Scholar 

  13. Kroft, E. B., de Jong, E. M., & Evers, A. W. (2008). Physical burden of symptoms in patients with localized scleroderma and eosinophilic fasciitis. Archives of Dermatology, 144(10), 1394–1395.

    Article  PubMed  Google Scholar 

  14. Szramka-Pawlak, B., Danczak-Pazdrowska, A., Rzepa, T., Szewczyk, A., Sadowska-Przytocka, A., & Zaba, R. (2014). Quality of life and optimism in patients with morphea. Applied Research in Quality of Life, 9(4), 863–870.

    Article  PubMed  Google Scholar 

  15. Szramka-Pawlak, B., Danczak-Pazdrowska, A., Rzepa, T., Szewczyk, A., Sadowska-Przytocka, A., & Zaba, R. (2013). Health-related quality of life, optimism, and coping strategies in persons suffering from localized scleroderma. Psychology, Health & Medicine, 18(6), 654–663.

    Article  CAS  Google Scholar 

  16. Orzechowski, N. M., Davis, D. M., Mason, T. G. 3rd, Crowson, C. S., & Reed, A. M. (2009). Health-related quality of life in children and adolescents with juvenile localized scleroderma. Rheumatology, 48(6), 670–672.

    Article  PubMed  Google Scholar 

  17. Mertens, J. S., Thurlings, R. M., Kievit, W., Seyger, M. M. B., Radstake, T. R. D., & de Jong, E. (2017). Long-term outcome of eosinophilic fasciitis: A cross-sectional evaluation of 35 patients. Journal of the American Academy of Dermatology, 77(3), 512–517 e515.

    Article  PubMed  Google Scholar 

  18. van der Linden, M. M., van Rappard, D. C., Daams, J. G., Sprangers, M. A., Spuls, P. I., & de Korte, J. (2015). Health-related quality of life in patients with cutaneous rosacea: A systematic review. Acta Dermato-Venereologica, 95(4), 395–400.

    Article  PubMed  Google Scholar 

  19. Gerard, A. J., Feldman, S. R., & Strowd, L. (2015). Quality of life of patients with pyoderma gangrenosum and hidradenitis suppurativa. Journal of Cutaneous Medicine and Surgery, 19(4), 391–396.

    Article  PubMed  Google Scholar 

  20. Rencz, F., Gulacsi, L., Pentek, M., Wikonkal, N., Baji, P., & Brodszky, V. (2016). Alopecia areata and health-related quality of life: A systematic review and meta-analysis. British Journal of Dermatology, 175(3), 561–571.

    Article  CAS  PubMed  Google Scholar 

  21. Rencz, F., Gulacsi, L., Tamasi, B., Karpati, S., Pentek, M., Baji, P., et al. (2015). Health-related quality of life and its determinants in pemphigus: A systematic review and meta-analysis. British Journal of Dermatology, 173(4), 1076–1080.

    Article  CAS  PubMed  Google Scholar 

  22. Hill, M. K., Kheirandish Pishkenari, A., Braunberger, T. L., Armstrong, A. W., & Dunnick, C. A. (2016). Recent trends in disease severity and quality of life instruments for patients with atopic dermatitis: A systematic review. Journal of the American Academy of Dermatology, 75(5), 906–917.

    Article  PubMed  Google Scholar 

  23. Amer, A. A., & Gao, X. H. (2016). Quality of life in patients with vitiligo: An analysis of the dermatology life quality index outcome over the past two decades. International Journal of Dermatology, 55(6), 608–614.

    Article  PubMed  Google Scholar 

  24. Gaulin, C., Sebaratnam, D. F., & Fernandez-Penas, P. (2015). Quality of life in non-melanoma skin cancer. Australasian Journal of Dermatology, 56(1), 70–76.

    Article  PubMed  Google Scholar 

  25. Almeida, C., Almeida, I., & Vasconcelos, C. (2015). Quality of life in systemic sclerosis. Autoimmunity Reviews, 14(12), 1087–1096.

    Article  PubMed  Google Scholar 

  26. Finlay, A. Y., & Khan, G. K. (1994). Dermatology life quality index (DLQI): A simple practical measure for routine clinical use. Clinical and Experimental Dermatology, 19(3), 210–216.

    Article  CAS  PubMed  Google Scholar 

  27. Arkachaisri, T., Vilaiyuk, S., Torok, K. S., & Medsger, T. A. Jr. (2010). Development and initial validation of the localized scleroderma skin damage index and physician global assessment of disease damage: A proof-of-concept study. Rheumatology, 49(2), 373–381.

    Article  PubMed  Google Scholar 

  28. Kelsey, C. E., & Torok, K. S. (2013). The localized scleroderma cutaneous assessment tool: Responsiveness to change in a pediatric clinical population. Journal of the American Academy of Dermatology, 69(2), 214–220.

    Article  PubMed  PubMed Central  Google Scholar 

  29. Arkachaisri, T., & Pino, S. (2008). Localized scleroderma severity index and global assessments: A pilot study of outcome instruments. The Journal of Rheumatology, 35(4), 650–657.

    PubMed  Google Scholar 

  30. Arkachaisri, T., Vilaiyuk, S., Li, S., O’Neil, K. M., Pope, E., Higgins, G. C., et al. (2009). The localized scleroderma skin severity index and physician global assessment of disease activity: A work in progress toward development of localized scleroderma outcome measures. The Journal of Rheumatology, 36(12), 2819–2829.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Swinscow, T. D. V., & Campbell, M. J. (2002). Statistics at square one. BMJ: London.

    Google Scholar 

  32. Rencz, F., Poór, A. K., Péntek, M., Holló, P., Kárpáti, S., Gulácsi, L., et al. (2018). A detailed analysis of ‘not relevant’ responses on the DLQI in psoriasis: Potential biases in treatment decisions. Journal of the European Academy of Dermatology and Venereology, 32(5), 783–790.

    Article  CAS  PubMed  Google Scholar 

  33. Ardalan, K., Zigler, C. K., & Torok, K. S. (2017). Predictors of longitudinal quality of life in Juvenile localized Scleroderma. Arthritis Care & Research, 69(7), 1082–1087.

    Article  CAS  Google Scholar 

  34. Sampogna, F., Raskovic, D., Guerra, L., Pedicelli, C., Tabolli, S., Leoni, L., et al. (2008). Identification of categories at risk for high quality of life impairment in patients with vitiligo. British Journal of Dermatology, 159(2), 351–359.

    Article  CAS  PubMed  Google Scholar 

  35. Heredi, E., Rencz, F., Balogh, O., Gulacsi, L., Herszenyi, K., Hollo, P., et al. (2014). Exploring the relationship between EQ-5D, DLQI and PASI, and mapping EQ-5D utilities: A cross-sectional study in psoriasis from Hungary. The European Journal of Health Economics, 15(Suppl 1), S111–S119.

    Article  PubMed  Google Scholar 

  36. Ongenae, K., Dierckxsens, L., Brochez, L., van Geel, N., & Naeyaert, J. M. (2005). Quality of life and stigmatization profile in a cohort of vitiligo patients and effect of the use of camouflage. Dermatology, 210(4), 279–285.

    Article  CAS  PubMed  Google Scholar 

  37. Schmid-Ott, G., Kuensebeck, H. W., Jaeger, B., Werfel, T., Frahm, K., Ruitman, J., et al. (1999). Validity study for the stigmatization experience in atopic dermatitis and psoriatic patients. Acta Dermato-Venereologica, 79(6), 443–447.

    Article  CAS  PubMed  Google Scholar 

  38. Schmid-Ott, G., Kunsebeck, H. W., Jager, B., Sittig, U., Hofste, N., Ott, R., et al. (2005). Significance of the stigmatization experience of psoriasis patients: A 1-year follow-up of the illness and its psychosocial consequences in men and women. Acta Dermato-Venereologica, 85(1), 27–32.

    Article  PubMed  Google Scholar 

  39. van Beugen, S., van Middendorp, H., Ferwerda, M., Smit, J. V., Zeeuwen-Franssen, M. E., Kroft, E. B., et al. (2017). Predictors of perceived stigmatization in patients with psoriasis. British Journal of Dermatology, 176(3), 687–694.

    Article  PubMed  Google Scholar 

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Author information

Author notes

  1. B. Hidvégi and F. Rencz have equally contributed to this work.

Authors and Affiliations

  1. Department of Dermatology, Venereology and Dermatooncology, Faculty of Medicine, Semmelweis University, Mária u. 41., Budapest, 1085, Hungary

    G. Bali, S. Kárpáti, M. Sárdy & B. Hidvégi

  2. Department of Health Economics, Corvinus University Budapest, Fővám tér 8., Budapest, 1093, Hungary

    V. Brodszky & F. Rencz

  3. Premium Postdoctoral Research Programme, Hungarian Academy of Sciences, Nádor u. 7., Budapest, 1051, Hungary

    F. Rencz

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  1. G. Bali
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  2. S. Kárpáti
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  3. M. Sárdy
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  5. B. Hidvégi
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Correspondence to G. Bali.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

Ethical approval was obtained from Semmelweis University Regional and Institutional Committee of Science and Research Ethics (reference No. 144/2015). All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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

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Bali, G., Kárpáti, S., Sárdy, M. et al. Association between quality of life and clinical characteristics in patients with morphea. Qual Life Res 27, 2525–2532 (2018). https://doi.org/10.1007/s11136-018-1897-1

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  • DOI: https://doi.org/10.1007/s11136-018-1897-1

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