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 Table of Contents  
ORIGINAL ARTICLE
Year : 2021  |  Volume : 10  |  Issue : 1  |  Page : 31-36

Quality of life and mental health status of hansen disease patients, attending a designated leprosy care center in South-India


1 Department of Community Medicine, Shimoga Institute of Medical Sciences, Shivamogga, Karnataka, India
2 Department of Community Medicine, SDM College of Medical Sciences and Hospital, Shri Dharmasthala Manjunatheshwara Unoversity, Dharwad, Karnataka, India

Date of Submission23-Nov-2020
Date of Acceptance30-Nov-2020
Date of Web Publication28-Feb-2021

Correspondence Address:
Avinash Patil
Assistant Professor, Department of Community Medicine, Shimoga Institute of Medical Sciences, Shivamogga
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/ijmy.ijmy_214_20

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  Abstract 


Background: “Quality of life (QOL)” is relatively a new concept, which originates from the World Health Organization (WHO) “health” definition. The WHO defines “health” as a state of complete physical, mental, and social well-being and not merely an absence of disease or infirmity. It introduces a word, “well-being,” which has two components, one the objective component and the second subjective component. The objective component mainly includes all the material possession by an individual, whereas the subjective component includes the perception of health by an individual, i.e., “QoL.” It has been observed that most of the persons affected by Hansen's Disease (leprosy) have good economic conditions, but they continue to suffer from social, psychological, and physical problems which makes their life miserable. Hence, an attempt has been made to assess their QOL and factors determining them. Method: A convenient sampling technique was used and 114 persons affected with Hansen's disease were studied. The study was conducted for a period of 1 year from November 2012 to October 2013. QOL was assessed using the WHO QOL-BREF Questionnaire and mental health status by the Self-Reporting Questionnaire. The results were obtained using SPSS 17.0 software, statistical tests such as Chi-square test, ANOVA, and standard multiple logistic regression analysis were used. Results: Quality of leprosy patients was poor. The mean WHOQOL-BREF total score was below average (mean score <65). Physical QOL of leprosy was more affected in females (mean WHOQOL-BREF score = 20.80). Mental distress was more prevalent in males (74.6%) compared to females (25.4%). Presence of deformities, female sex of the patient, and advanced age of the patient showed the greatest association with adverse QOL. Conclusion: Presence of physical disabilities or deformities and advanced age of leprosy patients adversely affect QOL of leprosy patients, whereas low level of education and poor socioeconomic status do not have a significant effect on QOL.

Keywords: Hansen's Disease, Self-Reporting Questionnaire, World Health Organization Quality of Life BREF


How to cite this article:
Patil A, Mayur S S. Quality of life and mental health status of hansen disease patients, attending a designated leprosy care center in South-India. Int J Mycobacteriol 2021;10:31-6

How to cite this URL:
Patil A, Mayur S S. Quality of life and mental health status of hansen disease patients, attending a designated leprosy care center in South-India. Int J Mycobacteriol [serial online] 2021 [cited 2021 Apr 20];10:31-6. Available from: https://www.ijmyco.org/text.asp?2021/10/1/31/310506




  Introduction Top


Besides physical aspects, leprosy (also known as Hansen's disease) and its related disabilities can predispose individual to psychological, economic, and social problems, which adversely affect the their quality of life (QOL). Leprosy-related complications, especially grade 2 disabilities, lead to poor QOL compared to the general population.[1] There is an increased prevalence of psychological morbidity, which is up to 65% and depression being the most common.[1],[2],[3] Chronic neuropathic pain of leprosy is also associated with psychological and QOL comorbidities, including circadian rhythm disturbance, anxiety, and depression.[4]

Inspite of the global efforts, significant progress made in controlling the disease and reducing the disease burden, much remains to be done to further reduce the impact, especially the burden due to the physical, mental, and socioeconomic consequences on the patients and their families. Studies on the QOL and mental health of leprosy patients are very few in India; hence as a need of the hour, this study was conducted with the objectives to assess the QOL and mental health status of the leprosy patients.


  Method Top


Study design

This was a hospital-based cross-sectional study [Table 1].

Study subjects

The study included Hansen's disease patients attending outpatient and inpatient departments of Hubli Hospital for Handicapped (HHH), which acts as a designated center for leprosy care. It is run by a Switzerland-based not-for-profit organization named Swiss Emmaus Leprosy Relief Work India. Study subjects consist of patients in the age group of 18–60 years, which may include patients with complications such as lepra reaction, relapse, default, or the one with residual disability. Patients <18 years were excluded because there were very few cases below this age limit.

Study period

The study was conducted for a period of 1 year from November 2012 to October 2013.

Sample size

A convenient sampling technique was used and 114 cases were studied. As it is a cross-sectional study, patients were examined at only one point of time and repeat visits were excluded.

Study center

It was a HHH which acts as a designated center for care of leprosy patients diagnosed at SDM Hospital and also from other parts of South India.

Study instrument and data collection

After obtaining ethical clearance from the institute's ethical committee and informed consent from patients. A predesigned and pretested proforma for sociodemographic data with a structured World Health Organization QOL BREF Instrument (WHOQOL-BREF) for assessing QOL[5] and Self-Reporting Questionnaire (SRQ) for mental health assessment[6] were used.

WHOQOL-BREF assesses how an individual feels about his/her QOL, health, or other areas of life. The questionnaire asks about patients' life in the past 2 weeks. If the individual is unsure about which response to give to a question, he/she is instructed to choose the one that appears most appropriate. This will be considered as the first response.

SRQ assesses certain pains and problems of the patients which bothered him/her in the past 30 days. If a person thinks that the question applies to him/her and had the described problem in the past 30 days, then the option yes is marked.

Study analysis

After collecting data, Data was analyzed using SPSS 17.0 and results were tabulated. for statistical analysis. Data were analyzed and the results were tabulated. WHOQOL-BREF scores were expressed in mean and standard deviation. Chi-square test was applied to find out the association between the two attributes. ANOVA was used to compare total WHOQOL-BREF, subdomain scores, and SRQ scores between groups. As it was ordinal data, nonparametric tests such as Mann–Whitney U-test were used. To explore the factors contributing to WHOQOL-BREF scores, standard multiple regression analysis was performed.


  Results Top


On analysis of the data collected, the following results were obtained.

Majority, 48 (42.11%), of the patients had poor QOL, of which females 18 (78.26%) were found to be commonly affected. It was also found that mental distress was present among 67 (58.77%) patients and females were commonly affected.

Overall, when QOL was assessed, it was found that female patients with leprosy had poor QOL (mean score = 58.60) compared to males (mean = 65.49) and the total mean score of WHOQOL-BREF was 64.10. Hansen's disease patient had poor QOL in the physical aspect (mean score = 26.53) compared to other aspects of QOL. Physical aspect of QOL was more affected among females (mean score = 20.80) compared to males (mean score = 27.98).

[Table 2] shows that, in the present study, males with deformity had poor QOL (mean WHOQOL-BREF total = 62.95) compared to those without deformity (mean WHOQOL-BREF total score = 71.51). Females with deformity also had poor QOL (mean WHOQOL-BREF total score = 55.47) compared to those without deformity (mean WHOQOL-BREF score = 67.50). Patients of both genders with deformity had poor QOL in physical, psychological, and environmental aspects compared to those without deformity. However, there was no difference in QOL in social aspects of life between patients with deformity and those without deformity. Mental distress was more common in patients with deformity compared to patients without deformities.
Table 1: Quality of Life and Mental health status scores of Hansen disease patients (n=114)

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Table 2: World Health Organization Quality of Life BREF Instrument and Self-Reporting Questionnaire scores of the Hansen's disease patients with and without deformities (n=114)

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Table 3: Association of Hansen disease patient's Quality of Life and Mental health with clinical type (n=114)

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Table 4: Multiple regression analysis of QoL and Mental health status of Hansen disease patients (n=114)

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In our study, leprosy patients in the age group of 51–60 years had poor QOL in physical, psychological, and social aspects. The mean WHOQOL-BREF total score was also least in this age group (mean score = 60.07). Patients in 51–60 years age group had a higher level of mental distress compared to others (mean SRQ score = 11.94) [Table 3].

In the present study, the overall QOL was poor in women involved in household work. Persons with leprosy involved in business occupation had better QOL. Persons working in private sector had better physical QOL compared to government employees. Students affected with leprosy had a better psychological QOL compared to others. Patients who were working as government employees had better social QOL but had poor QOL in environmental domain. Mental distress was more prevalent in government employees with leprosy and was least present among students [Table 4].

Furthermore, in the present study, illiterates were found to have a poor QOL (mean WHOQOL-BREF total score = 61.52). As the years of education increase, patients' QOL also seems to increase. Illiterate patients had low scores for all the domains of WHOQOL-BREF. Mental distress was more prevalent among illiterates than literates.

In our study, unmarried persons affected with leprosy have an overall better QOL. They also had a better psychological QOL and did not have any mental distress, whereas married group of patients had a better QOL only in social aspect.

In the present study, patients from the nuclear family had an overall better QOL compared to patients from joint and three-generation families. Social relationship QOL was better in patients from the nuclear family compared to others.

Furthermore, in our study, patients belonging to class V socioeconomic group as per the modified BG Prasad's classification scored least in all domains of WHOQOL-BREF. They also had the highest mean SRQ scores and more mental distress.

In our study, patients with paucibacillary leprosy scored more in all domains of WHOQOL-BREF compared to multibacillary cases. They also had better mental health status compared to multibacillary cases. This difference in WHOQOL-BREF total, physical, psychological, and SRQ scores between paucibacillary and multibacillary cases was statistically significant.

To explore the factors contributing to WHOQOL-BREF scores, standard multiple regression analysis was performed. Factors associated with decreased QOL were presence of deformities, gender, and age. Education and socioeconomic status (SES) were not related to QOL. Presence of deformities, female sex of the patient, and advanced age of the patient showed the greatest association with adverse QOL.


  Discussion Top


Majority, 48 (42.11%), of the patients had poor QOL, of which females 18 (78.26%) were found to be commonly affected. It was also found that mental distress was present among 67 (58.77%) patients and females were commonly affected.

Overall, when QOL was assessed, it was found that female patients with leprosy had poor QOL (mean score = 58.60) compared to males (mean = 65.49) and the total mean score of WHOQOL-BREF was 64.10. Hansen's disease patient had poor QOL in physical aspect (mean score = 26.53) compared to other aspects of QOL. Physical aspect of QOL was more affected among females (mean score = 20.80) compared to males (mean score = 27.98).

In an analogous study done in Government Leprosy Institute and Hospital Dhaka, Bangladesh, it was seen that total WHOQOL-BREF scores among leprosy patients were significantly lower (mean score = 78.61) than among controls (mean score = 86.64) for both genders (P < 0.01). Mean scores of leprosy patients for physical (11.43), psychological (11.86), and social relationships (13.85) were significantly lower for males than controls (P < 0.05). For females total WHOQOL-BREF scores (mean = 74.21), physical (mean = 10.06) and psychological (mean = 11.12) scores were lower among leprosy patients than controls (P < 0.01). No significant differences were found in social relationships or environmental domains. The total SRQ scores (mean = 9.15 for males and 10.83 for females) of leprosy patients were significantly higher than those of controls for both genders.[7]

In a study done at Leprosy Clinic, University College of Medical Sciences and Guru Teg Bahadur Hospital, Delhi, India, psychiatric disorders were common among male patients (82.5%) compared to female patients (17.5%).[8]

In a similar study conducted in Brazil to assess the QOL of patients with leprosy reaction states, the global perception of QOL and health was poor. The lowest rating was observed in physical domain (mean score = 46.4) and highest was observed in psychological (mean score = 50.0) and social relations (mean score = 58.3). There was no difference in QOL between males and females.[9]

In a study done in the Morang district of Southeast Nepal, total QOL in patients with leprosy related disabilities was poor (mean WHOQOL-BREF total = 81.9) compared to controls (mean WHOQOL-BREF total = 91.2). The QOL was poor in all other domains and the difference was statistically significant. However, there was no difference in QOL between the genders.[10]

In our study, males with deformity had poor QOL (mean WHOQOL-BREF total = 62.95) compared to those without deformity (mean WHOQOL-BREF total score = 71.51). Females with deformity also had poor QOL (mean WHOQOL-BREF total score = 55.47) compared to those without deformity (mean WHOQOL-BREF score = 67.50). Patients of genders with deformity had poor QOL in physical, psychological, and environmental aspects compared to those without deformity. However, there was no difference in QOL in social aspects of life between patients with deformity and those without deformity. Mental distress was more common in patients with deformity compared to those who have not yet developed the deformities.

Similar results were found in a studies conducted in Government Leprosy Institute and Hospital Dhaka, Bangladesh, and Bommasamudram, Chittoor, Andhra Pradesh, India, where QOL of patients with deformity was poor compared to patients without deformity.[7],[11]

Mean World Health Organization QOL-BREF domain and Self-Reporting Questionnaire scores as per the age of patients (n = 114)

In our study, leprosy patients in the age group of 51–60 years had poor QOL in physical, psychological, and social aspects. The mean WHOQOL-BREF total score was also least in this age group. Patients in 51–60 years age group had a higher level of mental distress compared to others.

In a similar study done in Dhaka, Bangladesh, a negative correlation was found between age and WHOQOL-BREF scores which means as the age advances, QOL of leprosy-affected persons decreases.[7]

In a study done in Punjab, a statistically significant difference in psychiatric morbidity in different age groups was noted with more psychiatric morbidity in 41–50 years age group.[12]

World Health Organization QOL BREF domains and Self-Reporting Questionnaire scores in patients with different occupational groups

In the present study, the overall QOL was poor in women involved in household work (mean score = 57.80). Persons with Hansen's disease involved in business occupation had a better QOL (mean score = 69.20). Persons working in private sector (mean score = 41.66) had better physical QOL compared to government employees (mean score = 29.16). Students affected with leprosy had a better psychological QOL (mean score = 56.25) compared to others. Patients who were working as government employee had better social QOL (mean score = 50.00) but had poor QOL in environmental domain (mean score = 37.50). Mental distress was more prevalent in government employees (mean SRQ score = 13.00) and was least in students (mean SRQ score = 8.50).

World Health Organization QOL BREF domains and Self-Reporting Questionnaire scores in patients with different educational status

In the present study, illiterates had a poor QOL (mean WHOQOL-BREF total score = 61.52) and graduates had the best QOL (mean WHOQOL-BREF total score = 69.00). As the years of education increases, patients' QOL also seems to increase. Illiterate patients had low scores for all the domains of WHOQOL-BREF.

Similar findings were seen in a study conducted in Dhaka, Bangladesh, where lack of education was associated with decreased QOL.[7]

Patients marital status and World Health Organization QOL-BREF domains and Self-Reporting Questionnaire scores

In our study, unmarried persons affected with Hansen's disease have an overall better QOL (mean WHOQOL-BREF total = 66.05). They also had a better psychological QOL (mean score = 50.00) and did not have any mental distress (mean SRQ score = 8.75), whereas married group of patients had a better QOL in social aspect (mean score = 47.03).

Unmarried people exhibit less psychological stress and their psychological QOL will be good. This could be the reason for their better score in psychological domain of QOL in our study.

Type of family of leprosy patients and their World Health Organization QOL-BREF domains and Self-Reporting Questionnaire scores

In the present study, patients from the nuclear family had an overall better (mean WHOQOL-BREF total = 65.58) compared to patients from joint family (mean WHOQOL-BREF total = 63.34) and three-generation family background (64.87). Social relationship QOL (mean score = 45.12) was better in patients from nuclear families compared to others.

In patients from the nuclear family, there will be a better understanding between husband, wife, and their children, and interpersonal trust will be good, so patients belonging to the nuclear family have a better social QOL.[13]

Distribution of World Health Organization QOL-BREF domains and Self-Reporting Questionnaire scores in patients from different socioeconomic groups

In our study, patients belonging to class V socioeconomic group as per the modified BG Prasad's classification scored least in all domains of WHOQOL-BREF. Hence, they had a poor QOL. They also had the highest mean SRQ scores (mean SRQ score = 11.28) and more mental distress.

In our study, patients with paucibacillary leprosy scored more in all domains of WHOQOL-BREF compared to multibacillary cases. They also had better mental health status compared to multibacillary cases. This difference in WHOQOL-BREF total, physical, psychological, and SRQ scores between paucibacillary and multibacillary cases was statistically significant.

The results were analogous to a study conducted in Brazil where multibacillary cases of leprosy had poor QOL compared to paucibacillary.[16] In a study done in Ethiopia, it was concluded that multibacillary patients are more prone for psychiatric morbidity compared to paucibacillary.[14]

To explore the factors contributing to WHOQOL-BREF scores, standard multiple regression analysis was performed. Factors associated with decreased QOL were presence of deformities, gender, age, and education. Religion and SES were not related to QOL. Presence of deformities, female sex of the patient, and advanced age of the patient showed the greatest association with adverse QOL.

In a study done in Dhaka, Bangladesh, presence of stigma, fewer years of education, the presence of deformities, and lower annual income were associated with decreased QOL. Gender, the presence of leprosy reaction, and age were not related to QOL.[15]


  Conclusion Top


Quality of leprosy patients was poor. The mean WHOQOL-BREF total score was below average (mean score <65). Physical QOL of leprosy was more affected in females (mean WHOQOL-BREF score = 20.80). Mental distress was more prevalent in males (74.6%) compared to females (25.4%).

Factors associated with decreased QOL were presence of deformities, gender, and age. Education and SES were not related to QOL. Presence of deformities, female sex of the patient, and advanced age of the patient showed the greatest association with adverse QOL.

Hence from this study, we conclude that QOL of persons affected with Hansen's disease is poor. Factors affecting QOL in these patients are female sex of the patient, presence of deformity, poor personal hygiene and environmental sanitation, and advanced age at presentation. These sociodemographic characteristics decreased the QOL in these patients. Mental health was poor in the leprosy patients aged between 51–60 years.

Limitations

In the social relationship domain, some of the questions were very personal, for example, sexual life satisfaction which was not answered by many patients, which might have resulted in a decrease in QOL in the social relationship domain of WHOQOL-BREF.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
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  [Table 1], [Table 2], [Table 3], [Table 4]



 

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