Health-Related Quality of Life among Iraqi Patients with Systemic Sclerosis
Keywords:
Scleroderma, Systemic sclerosis, quality of lifeAbstract
Background: Scleroderma, or systemic sclerosis (SSc), is an extremely rare condition that can have a devastating effect on an individual's physical and mental well-being, as well as a major impact on their ability to go about their everyday lives. Since a cure is currently unavailable, the goal of SSc treatment is to alleviate impairment and symptoms while simultaneously enhancing quality of life. Objective: The objective is to examine the health and quality of life as a whole in patients diagnosed with systemic sclerosis (SSc) by using the Short Form 36 (SF-36) questionnaire. Additionally, we want to establish a correlation between the SF-36 scores and the patient's clinical and epidemiological features. Patients and methods: Using the criteria established as per the 2013 ACR/EULAR guidelines, this study utilized a cross-sectional design that included 42 SSc patients. Quality of life was assessed by the SF-36 questionnaire and various demographic, clinical, and epidemiological data were gathered. Results: Correlations were found between the quality of life scores and age and education level and most domains of clinical characteristic (skin thickening component; fingers, hand, forearm, Puffy fingers, abnormal nail fold capillaries, Raynaud's phenomenon, shortness of breath, oral puckering, interstitial lung disease (ILD)) (P-value < 0.05), interestingly, long duration of disease, had significant impact on quality of life (p-value=0.005). Conclusion: A decreased QoL is observed among SSc patients. Skin thickening, puffy fingers, telangiectasia, abnormal nail folds, Raynaud syndrome, shortness of breath, oral puckering, and ILD were prevalent in our research.References
Asano Y. The Pathogenesis of Systemic Sclerosis: An Understanding Based on a Common Pathologic Cascade across Multiple Organs and Additional Organ-Specific Pathologies. J Clin Med. 2020 ;9(9):1–27.
Availablefrom: https://pubmed.ncbi.nlm.nih.gov/32825112/
Romano E, Rosa I, Fioretto BS, Matucci-Cerinic M, Manetti M. The Role of Pro-fibrotic Myofibroblasts in Systemic Sclerosis: From Origin to Therapeutic Targeting. Curr Mol Med. 2022;22(3):209–39. Available from: https://pubmed.ncbi.nlm.nih.gov /33823766/
Frantz C, Avouac J, Distler O, Amrouche F, Godard D, Kennedy AT, et al. Impaired quality of life in systemic sclerosis and patient perception of the disease: A large international survey. Semin Arthritis Rheum. 2016;46(1):115–23.
Kumar D, Yh C, Sf L, Jc D, Bian Q. World Journal of Stem Cells World Journal of Stem Cells REVIEW Perspectives of pluripotent stem cells in livestock 1 Transcriptomic alterations underline aging of osteogenic bone marrow stromal cells 128 World Journal of Stem Cells. Contents Monthly. 2021;13(1):1–138.
Available from: https://www.wjgnet.com/bpg/ gerinfo/240
Villanueva-Martín G, Martín J, Bossini-Castillo L. Recent advances in elucidating the genetic basis of systemic sclerosis. Curr Opin Rheumatol. 2022 ;34(6):295–301.
Available from:https://pubmed.ncbi.nlm.nih.gov /35979692/
Sierakowska M, Sierakowski S, Sierakowska J, Horton M, Ndosi M. Developing the Polish Educational Needs Assessment Tool (Pol-ENAT) in rheumatoid arthritis and systemic sclerosis: a cross-cultural validation study using Rasch analysis. Qual Life Res. 2015;24(3):721–33. Available from:
https://pubmed.ncbi.nlm.nih.gov/25231203/
Park EH, Strand V, Oh YJ, Song YW, Lee EB. Health-related quality of life in systemic sclerosis compared with other rheumatic diseases: A cross-sectional study. Arthritis Res Ther. 2019;21.
Al Sayah F, Ishaque S, Lau D, Johnson JA. Health related quality of life measures in Arabic speaking populations: a systematic review on cross-cultural adaptation and measurement properties. Qual Life Res. 2013;22(1):213–29.
Available from:https://pubmed.ncbi.nlm.nih.gov /22350531/
Jawad ZY, Gorial FI. Ocular Manifestations of Systemic Sclerosis: A Descriptive Cross Sectional Study from Iraq. IOSR Journal of Nursing and Health Science. 2017;06(04):94–7.
Elbraky F, Amailaf I, Alsaeiti K. Demographic characteristics and clinical manifestations of systemic sclerosis in Benghazi, Libya. Ibnosina Journal of Medicine and Biomedical Sciences. 2020;12(02):118–22.
El-Safty A, Yossef Manal, Abdul-Sattar A. Characteristics of Systemic Sclerosis Patients in Zagazig University Hospitals; A Cross Sectional Study. Zagazig University Medical Journal. 2020 ;0(0):0–0.
Rajaei E, Hessam A, Mowla K, Deris Zayeri Z. Statistical analysis of clinical and laboratory characteristics of systemic sclerosis. 2019.
Available from: http://tumj.tums.ac.ir
Wongthawa N, So-gnern A, Mahakkanukrauh A, Suwannaroj S, Foocharoen C. Sleep quality and clinical association with sleep disturbance in systemic sclerosis. BMC Rheumatol [Internet]. 2023 Jul 21;7(1):21. Available from:
https://bmcrheumatol.biomedcentral.com/articles/10.1186/s41927-023-00346-7
Antinozzi C, Grazioli E, De Santis M, Motta F, Sgrò P, Mari F, et al. The Preventive Role of Physical Activity in Systemic Sclerosis: A Cross-Sectional Study on the Correlation with Clinical Parameters and Disease Progression. Int J Environ Res Public Health. 2022 ;19(16).
Çevik R, Em S, Nas K, Toprak M, Cengiz G, Çal?? M, et al. Association of pain and clinical factors on disability and quality of life in systemic sclerosis: A cross-sectional study from Turkish League Against Rheumatism Network. Arch Rheumatol. 2023;38(1):009–21.
Asif S, Khan A, Faiq M, Din ZU, Zahoor S, Haroon M. Clinical and serological characteristics of systemic sclerosis: Experience of a tertiary care center in Pakistan. Arch Rheumatol. 2021;36(4):587–94.
Hossain S, Choudhury MR, Haque MM, Yeasmin S, Hossain F, Zaman MM. Functional disability and health-related quality of life among systemic sclerosis patients in Bangladesh. BMC Rheumatol. 2022;6(1).
Gorial FI, Swady RN. Prevalence of Depression in Iraqi Patients with Systemic Sclerosis and Its Relationship with Disease Severity. International Journal of Medical Research & Health Sciences [Internet]. 2018;7(4):69–74. Available from:
www.ijmrhs.com
?ebryk P, Przymusza?a P, Nowak JK, Piorunek T, Mularek-Kubzdela T, Puszczewicz M. Autoanti-bodies and Clinical Correlations in Polish Systemic Sclerosis Patients: A Cross-Sectional Study. J Clin Med. 2023;12(2).
Namas R, Elarabi M, Khan S, Mubashir A, Memisoglu E, El-Kaissi M, et al. Comprehensive description of the prevalence, serological and clinical characteristics, and visceral involvement of systemic sclerosis (scleroderma) in a large cohort from the United Arab Emirates Systemic Sclerosis Registry. J Scleroderma Relat Disord. 2023;8(2). Available from:https://pubmed.ncbi.nlm.nih.gov /37287950/
Alian SM, Sherby NA, Sarhan SA. Cultural adaptation and validation of the Systemic Sclerosis Quality of Life questionnaire into Arabic language. Clin Rheumatol. 2021;40(4):1409–16.
Available from: https://pubmed.ncbi.nlm.nih.gov /32918142/
Sierakowska M, Doroszkiewicz H, Sierakowska J, Olesi?ska M, Grabowska-Jodkowska A, Brzosko M, et al. Factors associated with quality of life in systemic sclerosis: a cross-sectional study. Quality of Life Research. 2019;28(12):3347–54.
Sherby NA, Sediq AM, Aldesouky A, Alsharawy O, Ahmed M, Hammad H. Quality of Life in Female Patients with Systemic Sclerosis. Vol. 87, The Egyptian Journal of Hospital Medicine. 2022. Available from: https://ejhm.journals.ekb.eg/
Allanore Y, Constans J, Godard D, de Pouvourville G, Bouee S, Jeanbat V, et al. Quality of life in SSc-ILD patients: Understanding the impact of the ILD and the needs of the SSc-ILD patients and their need for caregivers in France. J Scleroderma Relat Disord. 2022 ;7(1). Available from:
https://pubmed.ncbi.nlm.nih.gov/35386942/
Chevreul K, Brigham KB, Gandré C, Mouthon L, Serrano-Aguilar P, Linertová. R, et al. The economic burden and health-related quality of life associated with systemic sclerosis in France. Scand J Rheumatol. 2015;44(3):238–46. Available from:
https://pubmed.ncbi.nlm.nih.gov/25521915/
Van Leeuwen NM, Ciaffi J, Liem SIE, Huizinga TWJ, De Vries-Bouwstra JK. Health-related quality of life in patients with systemic sclerosis: evolution over time and main determinants. Rheumatology (United Kingdom). 2021;60(8):3646–55.
Pauling JD, Saketkoo LA, Matucci-Cerinic M, Ingegnoli F, Khanna D. The patient experience of Raynaud’s phenomenon in systemic sclerosis. Rheumatology (Oxford). 2019 ;58(1):18–26. Available from:https://pubmed.ncbi.nlm.nih.gov /29538754/
Galetti I, Nunzio S di, Brogelli L, Mirisola V, Garbagnati C. How do systemic sclerosis manifes-tations influence patients’ lives? Results from a survey on patients and caregivers. Curr Med Res Opin. 2021;37(S2):5–15.
Ciaffi J, van Leeuwen NM, Liem SIE, Ninaber MK, Huizinga TWJ, de Vries-Bouwstra JK. Lung func-tion is associated with minimal EQ-5D changes over time in patients with systemic sclerosis. Clin Rheumatol. 2020;39(5):1543–9. Available from:
https://pubmed.ncbi.nlm.nih.gov/31980971/
Silva AM da, Roque LCSC, Gonçalves RSG, Duarte ALBP, Tenório A da S, Dantas AT. Evaluation of quality of life, functionality and disability in patients with systemic sclerosis in a University Hospital. ABCS Health Sciences [Internet]. 2020 Nov 24 [cited 2023 Oct 9];45:e020025. Available from: https://www.portalnepas.org.br/abcshs/article/view/1349
Läubli J, Dobrota R, Maurer B, Jordan S, Misselwitz B, Fox M, et al. Impaired micronutrients and prealbumin in patients with established and very early systemic sclerosis. Clin Exp Rheumatol. 2020 ;38:120–6.
Available from: www.zora.uzh.chYear:2021URL:https://doi.org/10.5167/uzh-215970
March C, Huscher D, Preis E, Makowka A, Hoeppner J, Buttgereit F, et al. Prevalence, risk factors and assessment of depressive symptoms in patients with systemic sclerosis. Arch Rheumatol. 2019;34(3):253–61.
Hudson M, Thombs BD, Steele R, Panopalis P, Newton E, Baron M. Quality of life in patients with systemic sclerosis compared to the general popu-lation and patients with other chronic conditions. Journal of Rheumatology. 2009;36(4):768–72.
Bretterklieber A, Painsi C, Avian A, Wutte N, Aberer E. Impaired quality of life in patients with systemic sclerosis compared to the general popu-lation and chronic dermatoses. BMC Res Notes. 2014;7(1). Available from:
https://pubmed.ncbi.nlm.nih.gov/25183055/
Del Rosso A, Boldrini M, D’Agostino D, Placidi GPA, Scarpato A, Pignone A, et al. Health-related quality of life in systemic sclerosis as measured by the Short Form 36: relationship with clinical and biologic markers. Arthritis Rheum. 2004 ;51(3):475–81.
Available from: https://pubmed.ncbi.nlm.nih.gov /15188336/
Racine M, Hudson M, Baron M, Nielson WR, Pope J, Markland J, et al. The Impact of Pain and Itch on Functioning and Health-Related Quality of Life in Systemic Sclerosis: An Exploratory Study. J Pain Symptom Manage. 2016;52(1):43–53.
Available from:https://pubmed.ncbi.nlm.nih.gov /26876159/
Danieli E, Airò P, Bettoni L, Cinquini M, Antonioli CM, Cavazzana I, et al. Health-related quality of life measured by the Short Form 36 (SF-36) in systemic sclerosis: correlations with indexes of disease activity and severity, disability, and dep-ressive symptoms. Clin Rheumatol. 2005;24(1):48–54.
Available from: https://pubmed.ncbi.nlm.nih.gov /15300468/
