DETERMINANT FACTORS THAT AFFECT THE QUALITY OF LIFE OF PEOPLE WITH LEPROSY IN SUMENEP, INDONESIA
Leprosy is a potentially debilitating disease, that affects patients beyond medical conditions due to its potential impact on mobility, relationships with others, marriage, work, and social activities. The objective of this study was to know the quality of life of leprosy persons in Sumenep regency, Madura, and identify what factors affect the quality of life of people with leprosy. The study was a cross-sectional study involving 110 people with leprosy at Poteran Island, Sumenep regency, in 2017. We used a pre-designed questionnaire to evaluate demographics, attitude, knowledge, perceived stigma, and family support. The quality of life was assessed using a short version of the WHO Quality of Life Assessment, the WHOQOL-BREF questionnaire, which consisted of four dimensions: physical health, psychological conditions, social relations, and environmental conditions. These four domains were summed to get the overall quality of life. Chi-square and logistic regression analyses were performed using SPSS V 23 software using p-value and PR (Prevalence Ratio). About 55.5% of respondents had impaired quality of life. Stigma was a more dominant factor that affected the quality of life followed by knowledge, income, family support and age with POR 10.26, 8.17, 7.37, 7.31, and 4.10, successively. We suggest that to improve the quality of life of people affected by leprosy, it is necessary to deal with stigma through counseling, group therapy, and physical and occupational rehabilitation. Health promotion activities should be directed at empowering families and the community to play an active role in changing people’s behavior and modifying the social environment as well as maintaining and improving general health.
2. Tsutsumi A, Izutsu T, Md Islam A, Maksuda AN, Kato H, Wakai S. The quality of life, mental health, and perceived stigma of leprosy patients in Bangladesh. Soc Sci Med. 2007;64(12):2443–53.
3. Roosta N, Black DS, Rea TH. A comparison of stigma among patients with leprosy in rural Tanzania and urban United States: A role for public health in dermatology. Int J Dermatol. 2013;52(4):432–40.
4. WHO. Leprosy ( Hansen’s disease ). 2021.
5. Sheng GT, Sook V, Michelle Y, Master A. Quality of life of leprosy patients in Sabah Objective : To determine the Dermatology Life Quality Index ( DLQI ) among the subtypes of leprosy and to examine. 2021;76(1):6–10.
6. Bennett BH, Parker DL, Robson M. Leprosy: Steps along the journey of eradication [Internet]. Vol. 123, Public Health Reports. Association of Schools of Public Health; 2008 [cited 2021 Jun 22]. p. 198–205. Available from: /pmc/articles/PMC2239329/
7. Rodrigues LC, Lockwood DN. Leprosy now: epidemiology, progress, challenges, and research gaps. Lancet Infect Dis [Internet]. 2011 Jun [cited 2016 May 26];11(6):464–70. Available from: http://www.ncbi.nlm.nih.gov/pubmed/21616456
8. Joseph GA, Sundar Rao PSSS. Impact of leprosy on the quality of life. Bull World Health Organ. 1999;77(6):515–7.
9. Nicholls PG, Wiens C, Smith WCS. Delay in Presentation in the Context of Local Knowledge and Attitude Towards Leprosy - The Results of Qualitative Fieldwork in Paraguay. Int J Lepr Other Mycobact Dis. 2003;71(3):198–209.
10. Mankar M, Joshi S, Velankar D, Mhatre R, Nalgundwar A. A comparative study of the quality of life, knowledge, attitude and belief about leprosy disease among leprosy patients and community members in Shantivan Leprosy Rehabilitation centre, Nere, Maharashtra, India. J Glob Infect Dis. 2011;3(4):378.
11. Lustosa AA, Nogueira LT, Pedrosa JI dos S, Teles JBM, Campelo V. The impact of leprosy on health-related quality of life. Rev Soc Bras Med Trop [Internet]. 2011;44(5):621–6. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0037-86822011000500019&lng=en&tlng=en
12. Ministry of Health RI. Profile Kesehatan Indonesia Tahun 2019. 2020.
13. East Java Provincial Health Office. Profil Kesehatan Profinsi Jawa Timur. 2020;
14. Local Health Office of Sumenep Regency. Profil Kesehatan Kabupaten Sumenep Tahun 2017 [Internet]. Sumenep; 2017. Available from: http://sumenepkab.go.id/berita/baca/menristekdikti-ri-ist-annuqayah-untuk-penguasaan-sains-dan-teknologi-bagi-santri
15. Rahayuningsih E, Masyarakat FK, Studi P, Kesehatan I, Biostatistika K. Analisis Kualitas Hidup Penderita Kusta di Puskesmas Kedaung Wetan Kota Tangerang Tahun 2012. Universitas Indonesia; 2012.
16. Gholami A, Jahromi LM, Zarei E, Dehghan A. Application of WHOQOL-BREF in Measuring Quality of Life in Health-Care Staff. Int J Prev Med [Internet]. 2013 Jul [cited 2017 May 4];4(7):809–17. Available from: http://www.ncbi.nlm.nih.gov/pubmed/24049600
17. WHO. WHOQOL : Measuring Quality of Life WHOQOL-BREF. 2021;1–4.
18. Brakel W. Measuring Leprosy Stigma-A Preliminary Review of the Leprosy Literature. Int J Lepr [Internet]. 2003;71(3):1–5. Available from: http://www.ncbi.nlm.nih.gov/pubmed/10407622
19. Geetha K, Dhanalakshmi A, Judie A. A study to assess the impact of leprosy on quality of life among leprosy patients in government rehabilitation home at paranur. Int J Pharm Clin Res. 2015;7(6):466–8.
20. Mankar MJ, Joshi SM, Velankar DH, Mhatre RK, Nalgundwar AN. A Comparative Study of the Quality of Life, Knowledge, Attitude and Belief About Leprosy Disease Among Leprosy Patients and Community Members in Shantivan Leprosy Rehabilitation centre, Nere, Maharashtra, India. J Glob Infect Dis [Internet]. 2011 Oct [cited 2017 May 3];3(4):378–82. Available from: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=3249995&tool=pmcentrez&rendertype=abstract
21. Silva A da C, Ferreira RC, Ferreira MAA, Ribeiro MT de F. Association between the degree of physical impairment from leprosy and dependence in activities of daily living among the elderly in a health unit in the State of Minas Gerais^ien. Rev Soc Bras Med Trop [Internet]. 2014;47(2):212–7. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0037-86822014000200212%5Cnhttp://www.scielo.br/scielo.php?script=sci_arttext&pid=S0037-86822014000200212&lng=en&nrm=iso&tlng=en
22. van Brakel WH, Sihombing B, Djarir H, Beise K, Kusumawardhani L, Yulihane R, et al. Disability in people affected by leprosy: the role of impairment, activity, social participation, stigma and discrimination. Glob Health Action. 2012;5:1–11.
23. Das N, De A, Naskar B, Sil A, Das S, Sarda A, et al. A quality of life study of patients with leprosy attending the dermatology OPD of a tertiary care center of Eastern India. Indian J Dermatol. 2020;65(1):42–6.
24. Garbin CAS, Garbin AJÍ, Carloni MEOG, Rovida TAS, Martins RJ, Garbin CAS, et al. The stigma and prejudice of leprosy: influence on the human condition. Rev Soc Bras Med Trop [Internet]. 2015 [cited 2017 Aug 25];48(2):194–201. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0037-86822015000200194#B7
25. Fatmala KA. Analisis faktor yang berhubungan dengan kepatuhan minum obat kusta di kecamatan pragaan. J Berk Epideimologi. 2016;4(1):13–24.
26. Wong ML. Designing Programmes to Address Stigma in Leprosy: Issues and Challenges. Asia Pacific Disabil Rehabil J. 2004;15(2):3–12.
27. Lusli M, Peters R, Brakel W Van, Zweekhorst M, Iancu S, Bunders J, et al. The Impact of a Rights-Based Counselling Intervention to Reduce Stigma in People Affected by Leprosy in Indonesia. 2016;1–25.
28. Diyan F, Upik Y. Pengembangan media pembelajaran multimedia interaktif berbasis android pada materi plantae untuk siswa SMA menggunakan Eclipse Galileo. Biodik. 2016;2(1):1–6.
29. Xiong M, Wang X, Su T, Yang B, Li M, Zheng D. Relationship between psychological health and quality of life of people affected by leprosy in the community in Guangdong province, China: A cross-sectional study. BMC Public Health. 2019;19(1):1–8.
30. Adhikari B, Kaehler N, Chapman RS, Raut S, Roche P. Factors affecting perceived stigma in leprosy affected persons in western Nepal. PLoS Negl Trop Dis [Internet]. 2014 Jun [cited 2017 Aug 25];8(6):2–8. Available from: http://www.ncbi.nlm.nih.gov/pubmed/24901307
31. Henry M, GalAn N, Teasdale K, Prado R, Amar H, Rays MS, et al. Factors Contributing to the Delay in Diagnosis and Continued Transmission of Leprosy in Brazil – An Explorative, Quantitative, Questionnaire Based Study. PLoS Negl Trop Dis [Internet]. 2016 Mar 15 [cited 2021 Jun 23];10(3):e0004542. Available from: https://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0004542
32. Nishida M, Nakamura Y, Aosaki N. Prevalence and characteristics of depression in a Japanese leprosarium from the viewpoints of social stigmas and ageing . A preliminary report. 2006;203–9.