| Abstract|| |
Introduction: About 4 million people are disabled by leprosy. Eighty-six percent of leprosy patients reside in Southeast Asia and Brazil. India accounts for up to 70% of total cases. In India, it is highest in West Bengal, Maharashtra, Uttar Pradesh, and Bihar. Objective: The objective of the study is to assess the quality of life in terms of sense of coherence (SOC) among patients afflicted with leprosy in the state of West Bengal (located in eastern India on the Bay of Bengal). Methodology: A cross-sectional descriptive epidemiological study was conducted among estimated sample size of 350 participants who were afflicted with leprosy drawn from across the state of West Bengal, India. Data were collected on a specially designed pro forma. Results: Most of the participants afflicted with leprosy were in the age group of 40–77 years, and there was predominance of males, with most of them belonging to the upper-lower socioeconomic class. On evaluating the incidence of extraoral lesions through ranking, facial nodules and facial spots were highest 182 (52%), while among intraoral lesions such as melanin pigmentation 176 (50%) and inflammatory papillary hyperplasia 150 (42.8%), was seen in greater fraction. The results of bivariate analysis between SOC and variables under investigation show that majority of the cases, i.e., 258 (47.14%) revealed the SOC interpretation as “poor.” Statistical analysis showed significant difference in relation to age (P ≤ 0001) and socioeconomic status (P = 0.053) of participants. Conclusions: We conclude that 52% of the population were having facial nodules and facial spots and 50.2% of the population had intraoral manifestation such as melanin pigmentation. Analysis of SOC revealed that majority of the cases were interpreted as “poor.”
Keywords: Leprosy, orofacial manifestations, sense of coherence
|How to cite this article:|
Mishra P, Fareed N, Jagan P. Orofacial conditions and their relation to the sense of coherence among participants afflicted with leprosy in West Bengal State: A cross-sectional study. Indian J Dent Res 2019;30:207-12
|How to cite this URL:|
Mishra P, Fareed N, Jagan P. Orofacial conditions and their relation to the sense of coherence among participants afflicted with leprosy in West Bengal State: A cross-sectional study. Indian J Dent Res [serial online] 2019 [cited 2020 Apr 2];30:207-12. Available from: http://www.ijdr.in/text.asp?2019/30/2/207/259223
| Introduction|| |
Leprosy, Hansen's disease, or Hanseniasis, described by the Chinese in 600 BC, currently affects approximately 10–12 million people worldwide. It is one of the world's oldest and most dreaded diseases that have tormented humans throughout history, leaving lasting impressions on religion, literature, and art.
Leprosy is a chronic infectious disease of interpersonal transmission caused by Mycobacterium leprae, a microorganism that has an affinity for the skin and peripheral nerves and in more advanced stages affects internal organs and mucous membranes, with a high potential for causing physical disability. Thus, it destroys not only the body but also causes much mental distress – both physiological and psychological changes. However, ten countries still carry the major part of the global burden of the disease. These are Angola, Brazil, the Central African Republic, Congo, India, Liberia, Madagascar, Mozambique, Nepal, and the United Republic of Tanzania. With variable prevalence, India and Brazil, respectively, are the first and second countries with the highest number of leprosy cases.
The Pan American Health Organization includes leprosy in the group of neglected diseases and other poverty-related infections and considers it a public health problem. Discovery of dapsone in 1941 and later implementation of a multidrug treatment in 1982 changed the entire scenario, by fetching the disease under control.
Globally about 215,656 new cases of leprosy were detected in 2014. The registered prevalence of leprosy was 1,80,618 cases in the beginning of the same year. In India, it is maximum in the following four states in decreasing order – West Bengal, Maharashtra, Uttar Pradesh, and Bihar.
Since Biblical times, leprosy has been portrayed as a highly contagious disease and inflicted as a result of sin, and thus, the patients were prohibited from participating in social and economic activities of the community. They would become fearful, withdrawn, and isolated and lose self-confidence and self-respect. Leprosy is, therefore, a socially constructed taboo of a disease that affects the physiological and psychological status of a person.
The concept of sense of coherence (SOC) was put forward by Aaron Antonovsky in 1979 to explain why some people become ill under stress and others stay healthy. SOC gained widespread attention and has since been linked to health outcomes in many studies and is influenced by the degree of illness. It has three components – comprehensibility, manageability, and meaningfulness. Comprehensibility is the extent to which illness is perceived. Manageability is the extent to which a person feels they can cope. Meaningfulness is how much one feels that life makes sense and the ability to face challenges.
Leprosy is a disease known to cause widespread social stigma, thus affecting a person's quality of life and sense of well-being. To the best of our knowledge, this study is the first of its kind conducted on leprosy-afflicted population. This study is thus undertaken with the objective of assessing orofacial manifestations of leprosy with an additional objective of assessing SOC in relation to participants afflicted with leprosy in the state of West Bengal.
| Methodology|| |
A cross-sectional descriptive epidemiological study was conducted among participants afflicted with leprosy, irrespective of the stage drawn from across the state of West Bengal, India.
Ethical clearance/informed consent
Ethical clearance was obtained from the institutional review board of K.V.G Dental College and Hospital. Permission to conduct the study was obtained from Leprosy Mission Hospital, Purulia (West Bengal), Manipur Leprosy Rehabilitation Centre, Adra (West Bengal), and Gouripur Leprosy Hospital, Bankura (West Bengal).
Sample size estimation
The sample size was estimated based on previous study reported by Pereira et al., at an expected prevalence of 70% for melanin pigmentation, a precision of 75%, and confidence level of 80%.
Z(1-α/2)= standard normal variate.
p = expected proportion.
d = absolute error or precision.
The calculated sample size was 325, and an additional 10% of the calculated sample size will be added to compensate for sampling loss, if any. Thus, the final estimated sample size is 350.
Willing participants, with an informed consent, afflicted with leprosy from across the state of West Bengal from India were included in the study.
Participants with congenital deformities and systemic conditions such as diabetes and hypertension and participants requiring any form of emergency treatment were excluded from the study.
This study was conducted over a period of 6 months (November 2015–April 2016). The data were collected by the investigator herself on a specially designed three-part pro forma. The questionnaire was pilot tested for its feasibility and validity. A few modifications were done, and the pro forma was finalized, which is mentioned below.
- Part A recorded the basic demography of the participants
- Part B recorded extraoral and intraoral manifestations of participants
- Part C self-administered translated version (Bangla) questionnaire recording SOC.
A pilot study was conducted on thirty patients before the main study to assess the feasibility of the study, and twenty five completed pro forma was assessed; the reliability of the questionnaire was assessed through Cronbach's alpha coefficient which showed a high reliability of 0.966.
Statistical analysis was done using the Statistical Package for the Social Sciences (SPSS) software 21 (IBM in 2012, Armonk, North Castle, New York). P value was set at ≤0.05; Chi-square test was used to assess the significance in findings.
| Results|| |
Three hundred and fifty patients were evaluated, and 83.4% were male in the age group of 18–77 years. However, 70% of the total patients were between 40 and 77 years. Analysis of socioeconomic status (SES) revealed that 81.1% belonged to upper-lower socioeconomic class and 16% belonged to lower-middle socioeconomic class. The distribution of patients according to the various forms of leprosy revealed that 36.2% suffered from the lepromatous leprosy, while 29% and 19% were having intermediate and pure neuritic form. Further, analysis revealed that 78% of the cases did not have familial history of leprosy, whereas 22% revealed leprosy in either siblings or parents. About 90% of the patients were undergoing treatment, whereas 2% of the cases were treated and 0.85% of the cases reported relapse. Further, 6% of the cases reported incomplete treatment, as shown in [Table 1].
|Table 1: Basic demography and status of leprosy of the studied population|
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The results of bivariable analysis between SOC and variables under investigation show that 258 cases (73.71%) revealed the SOC interpretation as “poor,” whereas 65 (15.14%) cases construed “good” and 39 (24.28%) cases interpreted as “fair,” and statistically significant difference was observed on overall SOC among the studied population, as shown in [Table 2].
|Table 2: Overall sense of coherence and its components (Co, Ma, Me) among the studied population|
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In this study, extraoral alterations observed were atrophy of the nasal spine, collapse of the nasal bridge, yellowish or reddish facial spot, loss of eyebrow, facial nodules, change in anterior nasal spine and premaxillary area, auricular spot or nodules, ophthalmic keratitis and conjunctivitis, and regional nerve paralysis of facial and trigeminal nerve. The intraoral alterations observed were lingual varices, melanin pigmentation, Fordyce granules, smoker's melanosis, inflammatory papillary hyperplasia, and fissured tongue; there were also an absent uvula and a resorption of maxillary alveolar process.
Extraoral examination of the subjects revealed the following findings. 182 cases had facial nodules (52%), followed by yellowish or reddish facial spots and ophthalmic keratitis, 138 (39.43%) cases showed conjunctivitis, 128 (36.57%) had loss of eyebrows and 121 (34.57%), 99 (28.29%)were affected by nasal spine atrophy and 79 showed changes in anterior nasal spine and premaxillary area, and 60 (17.14%) had regional nerve paralysis of facial and trigeminal nerve with collapse of nasal bridge.
Analysis of the intraoral manifestations observed during clinical intervention revealed that melanin pigmentation was reported in 176 cases (50.29%), ensued by inflammatory papillary hyperplasia in 150 cases (42.86%), Fordyce granules in 117 cases (33.43%), absent uvula in 97 cases (27.71%), fissured tongue in 91 cases (26%), smoker's melanosis in 67 cases (19.14%), resorption of maxillary alveolar process in 59 cases (16.86%), and lingual varices in 34 cases (9.71%), as shown in [Table 3].
|Table 3: Ranking of the extraoral manifestations among studied population|
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Analysis of SOC in relation to the demographic variable and status of leprosy among studied population revealed that statistically significant difference was observed among various age groups (P ≤ 0001) and SES (P = 0.053). There was no statistically significant difference observed in status of leprosy, as shown in [Table 4].
|Table 4: Sense of coherence in relation to the demographic variable and status of leprosy among studied population|
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Analysis of SOC between orofacial manifestations revealed that statistically significant difference was observed in extraoral manifestations (P = 0.04), as shown in [Table 5].
| Discussion|| |
In addition to the physical effects of the diseases, patients with leprosy also suffer from social stigma and ostracism from their families, communities, and even health professionals to such an extent that leprosy has been known as “the death before death” since ancient times. According to Bainsan and Van den Borne and Antony and Broota,, the emotional turmoil that the leprosy sufferer experiences is intensified by the adverse reactions to the disease from the community as the patients are prohibited from participating in the social and economic activities of the community, and they become fearful, withdrawn, and isolated and lose self-confidence and self-respect.
Of the 213,899 leprosy cases reported in 2014, 94% came from just 13 countries. These countries include Bangladesh, Brazil, the Democratic Republic of Congo, Ethiopia, India, Indonesia, Madagascar, Myanmar, Nepal, Nigeria, the Philippines, Sri Lanka, and Tanzania. India accounts for two-thirds of new leprosy cases detected annually and is considered the single largest country contributing for leprosy cases globally. The WHO launched the Global Leprosy Strategy in April 20, 2016, New Delhi, India.
Apart from assessing the types of intraoral and extraoral manifestations of leprosy, we have focused on SOC in relation to leprosy. The tool we have used is Antonovsky's SOC scale (SOC-13), a short form of SOC_29 with the same validity and reliability when applied in different cultures and languages as evident in published literature. To the best of our knowledge, no studies have reported about SOC among leprosy-afflicted patients though this disease has a strong impact on the quality of life and SOC of those afflicted.
In this study, 350 patients were evaluated, the proportion of males (83.4%) was much higher compared to females, and this finding is in accordance to the gender distribution reported by Pereira et al. and Taheri et al., The gender difference with male preponderance among adults is more marked among lepromatous cases, and this has been attributed to their greater mobility and consequent increased opportunities for contact with afflicted patients, whereas females tend to be confined to their houseworks.
In this study, we observed nearly 52% of the population having lesions much higher than the ones reported by Pereira et al. (30.4%) and Taheri et al. (44.4%)., This study has reported facial nodules (52%), yellowish or reddish facial spot (39%), and ophthalmic keratitis (39%) as common extraoral manifestations.
Intraoral lesions are characteristics of an advanced disease and more common among the lepromatous type recognized in about 20%–60% of the cases. Intraoral lesions commonly observed are Fordyce granules, absent uvula, fissured tongue, smoker's melanosis, resorption of maxillary alveolar process and lingual varices, candidiasis, inflammatory papillary hyperplasia, fibroma, and traumatic ulceration. Melanin pigmentation 176 (50.29%) and inflammatory papillary hyperplasia 150 (42.86%) were the most prevalent intraoral lesions in this study. These manifestations have been reported to increase with the duration of leprosy, suggesting that greater the exposure to the bacillus more will be the consequent sequel. Further, it is suggested that lepromatous leprosy which often occurs in patients with reduced cell-mediated immune response seen in older individuals reflecting a greater spread of bacillus in the body is more commonly associated with severe manifestations. On the contrary, Martins et al. and Souza et al. reported a total absence of intraoral lesions probably due to the fact that they conducted the study on treated and clinically controlled patients and upon patients who were undergoing multidrug therapy, respectively.,
Discussion of SOC scores should be done with caution because of variations in the pattern of reporting SOC scores; moreover, SOC among leprosy-afflicted individuals is not reported in literature. The mean SOC score in this study is 38.5 suggesting weak SOC and affecting all the three subscales. Studies conducted upon other populations have reported much higher SOC scores.,, This finding is consistent with Antonovsky's 26 theoretical frameworks that describe that SOC is influenced by degree of illness. A weak SOC score, therefore, suggests that these people require more support for health management. Conversely, people with a strong SOC are generally more resilient to stress and are better able to seek solutions by themselves to cope with a health problem.,, The poorest subscale scores in order of magnitude that we observed were comprehensibility, meaningfulness, and manageability, suggesting that the ability to cope is better compared to perceptions and facing challenges. The result of this study indicates that a low SOC score was more common among participants with lower SES class. Members irrespective of the gender had almost equally poor SOC, suggesting that both men and women need more support to cope with their health and life situation. The results in this study also showed that a low SOC score was more common in the older age group. It is found that SOC scores tend to decrease with age throughout the entire life span among participants afflicted with leprosy, but previous research has shown little differences between SOC scores and age.
We recommend further comparative studies on populations with other diseases and the need to conduct in-depth studies upon the role of subscales on SOC. One might argue that the scores of SOC that we have obtained are an underestimate as it is a study conducted only among populations who have visited the centers providing medical care for leprosy. This can be considered as the limitation, however, necessitated one.
| Conclusions|| |
This study found a mean SOC score of 38.5 ± 2.5 much higher compared to other population. A statistically significant difference was observed in relation to age groups (P = 0.01) and SES groups (P = 0.05). SOC scores had an equal gender predilection among the studied group. Analyses of SOC revealed that majority of the cases were interpreted as “poor.” Subscales to be affected in order of magnitude were comprehensibility (67%), meaningfulness (54%), and manageability (47%).
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Conflicts of interest
There are no conflicts of interest.
| References|| |
Martins MD, Russo MP, Lemos JB, Fernandes KP, Bussadori SK, Corrêa CT, et al.
Orofacial lesions in treated southeast Brazilian leprosy patients: A cross-sectional study. Oral Dis 2007;13:270-3.
Hanumanthayya K, Barkakoty M et al.
History of leprosy. J. Evid. Based Med. Healthc. 2016; 3:250-2.
Pereira RM, Silva TS, Santos TC, Falcao CA, Pinto LS. Orofacial and dental condition in leprosy. Braz J Oral Sci 2013;12:330-4.
Taheri JB, Mortazavi H, Moshfeghi M, Bakhshi M, Bakhtiari S, Azari-Marhabi S, et al.
Oro-facial manifestations of 100 leprosy patients. Med Oral Patol Oral Cir Bucal 2012;17:e728-32.
Park K. Park's Textbook of Preventive and Social Medicine. 23rd
ed. Jabalpur: Banarsidas Bhanot; 2015. p. 314-7.
Brand P. Coping with a chronic disease: The role of the mind and spirit. Patient Educ Couns 1995;26:107-12.
Antonovsky A. Sense of coherence. Stress, Coping, and Health in Families: Sense of Coherence and Resiliency. Vol. 8. Thousand Oaks: Sage; 1998. p. 3-20.
Bainson KA, Van den Borne B. Dimensions and process of stigmatization in leprosy. Lepr Rev 1998;69:341-50.
Antony J, Broota A. Self-concept of children of leprosy patients. J Indian Acad Appl Psychol 1991;17:35-9.
Adachi N. Charles bonnet syndrome in leprosy; prevalence and clinical characteristics. Acta Psychiatr Scand 1996;93:279-81.
Horiguchi M, Tanaka G, Ogasawara H, Maruyama R. Gender-based relationship between eating behavior and sense of coherence in Japanese young adults. Soc Behav Pers 2016;44:45-58.
Souza VA, Emmerich A, Coutinho EM, Freitas MG, Silva EH, Merçon FG, et al.
Dental and oral condition in leprosy patients from Serra, Brazil. Lepr Rev 2009;80:156-63.
Skär L, Juuso P, Söderberg S. Health-related quality of life and sense of coherence among people with obesity: Important factors for health management. SAGE Open Med 2014;2:2050312114546923.
Abdelgadir M, Shebeika W, Eltom M, Berne C, Wikblad K. Health related quality of life and sense of coherence in Sudanese diabetic subjects with lower limb amputation. Tohoku J Exp Med 2009;217:45-50.
Covey HC. People with leprosy (Hansen's disease) during the middle ages. Soc Sci J 2001;38:315-21.
Santos GG, Marcucci G, Marchese LM, Guimarães J Jr. Oral aspects of specific and unspecific lesions in Hansen's disease patients. Pesqui Odontol Bras 2000;14:268-72.
Dogra S, Narang T, Kumar B. Leprosy – Evolution of the path to eradication. Indian J Med Res 2013;137:15-35.
] [Full text]
Dr. Poulami Mishra
Department of Public Health Dentistry, KVG Dental College and Hospital, Sullia
Source of Support: None, Conflict of Interest: None
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]