Quality of Life Among People with Leprosy-Related Disability In Tamil Nadu: A Cross-Sectional Study

Background: Leprosy is one among the 20 conditions termed as Neglected Tropical Disease. Early diagnosis and treatment with multidrug therapy has made leprosy a curable disease these days. Even after all the improvements in managing the disease, the quality of life of affected individuals is still uncertain. Materials and methods: A cross-sectional study was conducted among people with leprosy related disability residing in Chengalpattu district using a semi-structured questionnaire to access the quality of life and its association with socio-demographic variables. Simple random sampling technique was used to select 223 study participants. Data were analysed using IBM SPSS v 21. Fishers exact test and chi-square test were employed and statistical significance was set at p <0.05. Results : Out of the 223 participants, 40.4% had poor quality of life score. Class V socio-economic status, lesser duration of disability and positive surgery history for deformity had a significant association with overall quality of life. Conclusion : To conclude the findings of the current study, a huge prevalence of poor quality of life was noted that reflects the affected individual’s deprived physical and mental health status. Early prevention of disabilities by rightful intervention at the right time and appropriate self-care should be ensured to improve the quality of life.


INTRODUCTION
Leprosy, often called as "The Hansen's disease," has been eliminated globally in the year 2000.However, India achieved elimination only in 2005. 1 By the year 2016, the leprosy elimination target of <1/10,000 population has been achieved in 551 districts out of a total of 669 districts in the country. 2 In spite of all the initiatives and programmes afforded by the governmental and non-governmental agencies, it is still evident that leprosy is a public health concern affecting different regions in the world.Owing to the novel corona virus disease (COVID-19) pandemic there was an additional 37% reduction in new leprosy case detection. 3O defines Quality of Life as an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. 4Majority of the existing literatures from different parts of the world have contradicting results on the quality of life among individuals with leprosy.Few literatures had stated good Quality of Life among their participants as in Sinambela D et al 5 (93.3%),Utama A et al 6 (52.3%),Bottene I et al 7 (63%) whereas many literatures have specified that participants have poor QOL as in Solanki AD et al 8 (54%), Reis F et al 9 (57.2%),Eyanoer P et al 10 (41%), Umniyati H et al 11 (55.5%) and so on.Such differences in the results might be due to regional variation, Questionnaire variation and also on the grade of leprosy disability.Adding to this, only a handful literatures are available on leprosy QOL studied among those with disabilities.
Hence to explore more about the disabled people, our study was directed to find Quality of Life (QOL) among the residents of Chengalpattu district with leprosy related disabilities.The outcomes of this study helps to understand the physical and mental component of the affected individual despite increased psycho-social support and vocational training activities implemented by the government under NLEP.The outcomes will also emphasize the need for increased community-based rehabilitation services to mitigate the effects of impairment.

METHODOLOGY
A cross sectional study was conducted in the leprosy colonies of Chengalpattu district (Thirumani and Paranur), Tamil Nadu, India from May 2021 to October 2022.Those people diagnosed with leprosy related disability grade 1 & 2 residing in the leprosy colonies aged 18 years and above, those who were the permanent residents of study setting were included in the study. 12Seriously ill and bedridden patients were excluded from the study.Considering the prevalence of 54% poor QOL with 7% allowable error at 95% confidence interval and 10% nonresponse rate, 8 a sample size of 230 was arrived us-ing the formula z 2 PQ/d 2 .
The list of individuals with leprosy related disabilities residing in the Chengalpattu district was obtained from the Leprosy division.From the line list of 544 people with disability, 230 individuals were selected through computer generated random numbers.Out of 230 individuals approached, where 223 individuals gave consent and participated in the study.Previously validated short form-12 questionnaire in the local language (Tamil) was used to assess the QOL. 13 The scoring for SF-12 QOL version 1 used in the present study has been recommended by Ware, John & Kosinski, M & Keller. 13The summary scores range from a minimum of 0 to a maximum of 100.Higher the SF-12 scores, indicates the higher (better) quality of life. 14The QOL outcome was categorized into three groups namely High QOL (score ≥ 61), Normal QOL (score of 41 to 60) and Poor/impaired QOL (score ≤ 40).The cut-off for physical component score of QOL (PCS) was 39 and Mental component score of QOL (MCS) was 43.Scores below the respective cut-off were graded as poor PCS and MCS while the scores equal to or greater than the cut-off were graded Normal PCS and MCS.Data analysis was done using IBM SPSS v 21.Qualitative variables were described in frequencies and percentage, quantitative variables were described in mean/standard deviation.Pearson Chi-square test and Fisher's exact test to determine the association amongst QOL and socio-demographic factors.The significance of the p-value for the present study was taken as p < 0.05.

RESULTS
The mean age of the participants was 63.12  10.7 at enrolment (Table 1).The mean age at diagnosis of leprosy was 23.3  11.6.Only 27 participants had positive family history of leprosy among the 223 participated.Around 58% were employed when they were diagnosed with leprosy however, as disease progressed only 14% were able to work.
The mean duration of leprosy was 39.7  14.5 years.The mean duration of disability was found to be 16.9  11.7 years.All 223 participants were on one or other forms of rehabilitation.All those identified with deformity were on regular medical management.(Table 2) Total 49%, 46% and 40.4% had poor PCS of QOL, MCS of QOL and overall QOL while 51%, 54% and 60.6% of the participants had normal PCS of QOL, MCS of QOL and overall QOL respectively.
Overall mean QOL score was 40.9 (sd 5.6) (Table 1).Comparatively, only a few studies have utilized the DLQI tool and SF-36 for QOL assessment among their participants.The variations in prevalence of QOL may be attributed due to geographical variation and differences in the study tools (Questionnaire) used.QOL in the present study had a significant statistical association with low socio-economic status which is similar to the findings reported by Govindharaj et al 18 , Pinto G et al 19 , Umniyati H et al 11 and Costa MD et al 20 which emphasis the role of financial support in assessing quality of life irrespective of the country were the study has been carried out.
QOL was also found having association with the duration of disability in the present study which was reported by Solanki AD et al 8 and Govindharaj et al 18 as well.Further, better QOL was seen among those who underwent surgery for deformity correction in the present study unlike that reported by Utama A et al 6 and Lustosa A et al 21 where physical disfiguration following surgery itself was cited as a reason for poor QOL.
PCS of QOL in the present study was not found to be statistically significant to age in contradiction to that reported by Govindharaj et al 18 and Araujo D et al 22 where a majority of their study participants were less than 60 years of age while the present study had a majority of the participants belonging to more than 60 years of age.This shows that age plays a significant role in determining younger population's QOL as it disturbs their education, occupation and standard of living.The present study displays that those with history of multimorbidity were found to have poor PCS of QOL however the studies by Araujo D et al 22 and Barakat M et al 15 mentioned that presence of more than two diseases itself acts as a driving factor for poor QOL among the participants.
MCS of QOL was found to be statistically significant with gender as reported by Araujo D et al 22 and Pinto G et al 19 , unlike the present study where the association is not statistically significant.The reported difference might be because of the prevailing cultural and social differences among the study participants in different countries.MCS of QOL was found to have an association with disability duration, presence of co-morbidity, and multimorbidity in the present study.Few literatures have found that as the number of disease conditions and years with disability increases the mental health status of the participants decreases. 18,22

CONCLUSION
This study adds extra evidence to the magnitude of problems that many leprosy-affected people still deal with even after treatment completion.In addition to the existing standard leprosy treatment guidelines, an integrated scaffold consisting of screening, diagnosis and management protocols for leprosy related physical and mental health issues should be added to improve their QOL.Apart from this, ensuring availability of multidisciplinary leprosy care approach at primary healthcare level in endemic districts with active from various specialities like surgery, dermatology, orthopaedics, psychiatry, ophthalmology and physiotherapy will also improve the QOL.Further research on early disease detection and efficient management techniques for leprosy and related-disability should be encouraged to improve the quality of life among the diseased.

Table 4 ,
5 and 6shows association of physical component, mental component and overall QOL with socio-demographic characteristics of patients and various disease characteristics of leprosy.

Table 1 :
Socio-demographic characteristics of the study participants (n = 223)

Table 2 :
Disease status-related details of the study participants (n = 223)

Table 4a :
Association of Socio-demographic characteristics with PCS of QOL by Pearson Chi-Square analysis

Table 4b :
Association of disease characteristics with PCS of QOL by Pearson Chi-Square analysis *Statistically significant

Table 5a :
Association of Socio-demographic characteristics with MCS of QOL by Pearson Chi-Square analysis

Table 5b :
Association of disease characteristics with MCS of QOL by Pearson Chi-Square analysis *Statistically significant

Table 6a :
Association of Socio-demographic characteristics with Overall QOL by Pearson Chi-Square analysis

Table 6b :
Association of disease characteristics with Overall QOL by Pearson Chi-Square analysis *Statistically significant