Abstract
Children and their families living in leprosarium areas may have a lower quality of life than the general population. However, there is limited evidence on health-related quality of life and its associated factors among children living in previous leprosarium settlement areas. Hence, this study aimed to compare the health-related quality of life among children living in previous leprosarium and non-leprosarium settlement areas in eastern Ethiopia. A community-based comparative cross-sectional study was conducted among 515 randomly selected children aged 8 to 18 years living in the Amir Nur and Babile districts from January to February 30, 2024. Data were collected through interviews with children and parents using the Pediatric Quality of Life Inventory Version 4. The data were analyzed using STATA version 14. Simple and multiple linear regression was employed to identify associations between independent and outcome variables. The overall mean health-related quality of life scores were 73.98 ± 18.47 and 77.67 ± 14.72 in the child self-reports (P = 0.01) and 55.78 ± 12.03 and 55.61 ± 8.50 (P = 0.85) in the parent proxy reports in the previous leprosarium and nonleprosarium settlement areas, respectively. In multiple linear regression, child education (β = 14.69; 95% CI: 8.69, 20.69), the absence of neglected and tropical diseases (β = 4.02; 95% CI: 0.66, 7.37), and child face washing habits (β = 5.54, 95% CI: 2.14, 8.95) increase health-related quality of life. However, a previous history of neglected and tropical diseases (β = -8.54; 95% CI: -12.93, -4.15) and the absence of hand washing facilities (β = -8.57; 95% CI, -15.22, -1.92) decrease the mean health-related quality of life. Based on child self-reports, one in four children from previous leprosarium areas had poor health-related quality of life compared to children living in none leprosarium areas. Children’s educational status, their daily habits of washing their face, not having neglected, and tropical diseases had improved health-related quality of life. To improve health-related quality of life, stakeholders should pay attention to and work on the early detection and treatment of neglected and tropical diseases, child education, and proper sanitation practices in the leprosarium community.
Keywords: Health related quality of life, Children, Previous leprosy settlements, Non-leprosy settlements, Eastern Ethiopia
Subject terms: Microbiology, Diseases, Health care, Risk factors
Background
The World Health Organization Quality of Life Group defines quality of life as an individual’s assessment of their status in life concerning expectations, patterns, and concerns within their cultural and value system1. It refers to the physical, psychological, and social aspects of health that are impacted by an individual’s experiences, beliefs, expectations, and perceptions2,3. Leprosy is an infectious neglected tropical disease (NTD) that can impaired health-related quality of life (HRQoL)4,5. Approximately one million people currently suffering from irreversible disability related to leprosy infection4. Leprosy remains a public health challenge for some low- and middle-income countries6–8. An estimated 4.5 per million children with leprosy infection worldwide were diagnosed in 2021. Approximately 143 countries, 37 of which are African are affected by this disease3. Ethiopia is one of priority country among 23 World Health Organization (WHO) focus areas, that has the second-highest leprosy incidence in sub-Saharan Africa9. For example, in 2019 a total of 3426 cases of leprosy were reported in Ethiopian national program, 96.2% of which were newly diagnosed and 15% of which were in children and adolescents under 15 years of age10. Moreover, 65.9% of leprosy patients in Ethiopia have grade I or II disability, indicating that community-acquired transmission still occurs9,11. In East Hararghe, 13.2% of newly diagnosed cases in 2020 were under the age of 15, and 14.1% of affected children had Grade II disability12. The presence of highly endemic areas and the high prevalence of 9.3 per 10,000 people suggest that the road to the eradication of leprosy in Ethiopia remains challenging13.
Living in previous leprosarium settlement areas has a significant impact on the HRQoL of the community, particularly in children. Evidence indicates that treated and cured leprosy patients have a lower HRQoL than the general population5. The disease causes physical, psychological, and social disabilities and social exclusion9. Children living in areas with previous leprosy settlements also face challenges accessing education and health care, reduced academic success, reduced HRQoL, social support, mental health, ability to work, and suffering from the stigma associated with the disease and disability4,14. To address the impact of leprosy on HRQoL among people living in previously endemic areas, especially children, the Global Leprosy Strategy 2021–2030 has set a target of a 90% reduction in the rate per million of new cases with grade 2 disability and a 90% reduction in the rate of new child cases with leprosy3.
The Ethiopian leprosy elimination strategy, 2016–2020 aimed to reduce the burden of leprosy and improve the HRQoL of children by taking the following measures: providing early diagnosis and treatment to prevent complications and disability; providing free multidrug therapy for all leprosy patients; strengthening patient and community awareness of leprosy to reduce stigma and discrimination; and supporting research and innovation to find new ways to prevent, diagnose, and treat leprosy15. However, its implementation is not successful or sustainable because of the fragile healthcare system in some low-income countries16. Therefore, the identification of factors that influence HRQoL in children provides important information to policymakers and contributes to the development and implementation of context-effective prevention programs for children, which can promote long-term mental and physical health and wellness1,17. It also increases governmental awareness and provides insight to health professionals on the HRQoL of children living in these settings and strengthens the implementation of preventive measures to improve HRQoL. However, the demands associated with reducing stigma and improving HRQoL among affected people have emerged and been neglected4. Moreover, data on HRQoL and its associated factors among children living in previous leprosarium and nonleprosarium settlement areas are scarce. Some available evidence is focused on the prevalence of leprosy among adult patients, and there are no findings indicating the HRQoL of children living in previous leprosy settlements in Ethiopia. Therefore, this study aimed to compare the HRQoL and associated factors among children living in previous leprosarium and nonleprosarium settlement areas in Eastern Ethiopia.
Methods and materials
Study setting and design
This was a community-based comparative cross-sectional study conducted in previous leprosarium and nonleprosarium settlement areas in selected districts in the Harari regional state (Amir Nur district and Oromia regional state, Babile district) from January to February 30, 2024.
In Ethiopia, the formation of the previous leprosarium settlement areas started with mass treatment of the leprosarium in the 1950s and 1960s in the following areas: Bisidimo in the Hararghe Region, Borumeda in the Wollo Region, Gambo in the Arsi Region, and Gendeberet in the Shoa Region. In 1964, Tibela (Addis Hiwot) started as an Agricultural Training Centre to provide skills training to 800 patients. This study was conducted in previous leprosarium (01 Kebeles, Ganda Fero, and Bisidimo Kebele) and nonleprosarium settlement areas (Kebele 02 and Ifadin Kebele) in the Harari and Oromia regional states, respectively. A total of 31,740 people live in the selected districts in both settlements.
Population
All children aged 8 to 18 years old and their parents who were living in the Amir Nur and Bisidimo districts during data collection period were the source population, and sampled children living in selected kebeles of these districts were the study population. Children aged 8 to 18 years and their parents who were living in previous leprosarium settlement villages in selected Kebeles for at least six months were included in this study. However, children aged 8 to 18 years whose parents or caregivers were seriously ill and children with other conditions, such as congenital malformations and physical disability not associated with leprosy, were excluded from this study.
Sample size and sampling procedure
The double population proportion formula was used to calculate the sample size using Statcalc Epi-Info version 7.2.5.0, with the following assumptions: confidence level = 95%, power = 80%, and the ratio of unexposed to exposed almost equivalent to 118. By adding the 10% nonresponse rate, the final sample size was 515. The previous leprosarium settlement areas Amir Nur district 01 Kebele and Babile district Bisidimo Kebele were selected. Then, two comparative nonleprosarium settlements (Kebele 02 and Ifadin Kebele) were selected randomly. Households with children aged 8 to 18 years from each district were selected using systematic random sampling (Kth =5), the first household was selected using lottery method 3, and every fifth household was included. When the selected household had no children aged 8 to 18 years, the next household was replaced. When there was more than one eligible child, we selected one participant using the lottery method.
Data collection and procedure
The questionnaires collected information on the sociodemographic characteristics of the parent and children; the health and activity of the child; psychosocial and clinical factors; and WASH-related factors. To measure HRQoL, the Pediatric Quality of Life Inventory 4.0 Generic Core Scale (PedsQL4.0) from Mapi-Trust was used19. Two age-appropriate instruments for children aged 8 to 12 and 13 to 18 years were used in this study. It has a 23-item, multidimensional quality-of-life instrument. The items in every 4 subscales were physical functioning (8 items), functioning, social functioning, and school functioning (5 items for each). It was reported to both the child self and parents or a proxy report. The child and the parent were asked to rate the problem on 5 Likert scales from 0 to 4. (0 = never a problem; 1 = almost never a problem; 2 = sometimes a problem; 3 = often a problem, and 4 = almost always a problem) in the last month. Then, each item was reversely scored and linearly transformed to a 0-100 scale (0 = 100, 1 = 75, 2 = 50, 3 = 25, and 4 = 0) so that higher scores indicated better HrQoL. Scale scores were computed as the sum of the items divided by the number of items answered. If > 50% of the items in the scale were missing, the scale score was not computed.
The instrument was translated into Amharic and Afan Oromo. The data were collected through interviews administered at home-to-home visits. The child and present were interviewed separately on the same date. It was translated back to English by an independent translator to maintain the consistency of the tool. The data were collected by six trained BSc professionals: Pediatric and Child Health Nursing, Public health, and laboratory technician and supervised by an MSc Medical Parasitology professional.
Measurements
Health-related quality of life (HRQoL): is a multidimensional concept that includes domains related to physical, mental, emotional, and social functioning and is measured using the Pediatric Quality of Life Inventory 4.0 (PedsQL 4.0) questionnaire, which was specifically designed to measure quality of life in children20.
Poor HRQoL: Respondents who had a mean score of more than 1 standard deviation (1SD) below the sample mean of the total HRQoL score of the self-report in each subscale.
Good HRQoL: Respondents who had a mean score above 1 standard deviation (1SD) of the sample mean of the total HRQoL score of the self-report in each subscale.
Previous leprosarium settlement areas were villages from which leprosy patients evolved during the 1950s to establish a village in the vicinity of the leprosarium, which soon became a destination for the sufferers who flocked from all over the country into these villages (Ganda Qore and Ganda Feron) in search of medical treatment and better socioeconomic advantages21.
Children: Every human being between 8 and 18 years old.
Data quality assurance
Data quality was ensured during collection, coding, entry, and analysis. We used a standard tool to measure HRQoL, and pretested questionnaires were applied for other related variables. Two days of training were given to the data collectors and supervisors. Regular supervision was performed by the investigators. The data were collected using ODK software.
Data processing and analysis
The data were validated before being imported and analyzed with STATA version 14. The data are summarized using means and standard deviations and are presented in tables and statements. A paired t-test was performed to compare the children’s self-reports and parent proxy reports. One-sample independent t-tests and one-way ANOVA were used to compare the mean PedsQL™ 4.0 scores of the children according to sociodemographic and clinical variables. Simple and multiple linear regression analyses were adjusted to identify associated factors. Finally, both the mean difference in the PedsQL™ 4.0 score and the statistically significant factors were considered at P < 0.05.
Results
Sociodemographic characteristics of the caregiver/mother
A total of 509 caregiver/mother and child pairs were included in this study, yielding a 98.8% response rate. One hundred twenty-five (48.83%) and 131 (51.17%) participants who lived in a previous leprosarium and nonleprosarium settlement, respectively, were urban residents. The mean age and standard deviation (SD) of the caregivers/mothers were 34.1 ± 7 years. Regarding educational status, 122 (40.94%) and 176 (59.06%) participants could not read and write respectively, among participants in previous leprosarium and nonleprosarium settlement areas. Sixty-two (42.47%) and 84 (57.53%) participants from previous leprosarium and nonleprosarium settlement areas were farmers respectively. The mean monthly family incomes were 4217.596 ± 1802.449 and 4537.825 ± 1995.072 ETB in the previous leprosarium and nonleprosarium settlement areas, respectively (Table 1).
Table 1.
Sociodemographic characteristics of the caregivers/mothers of children living in previous leprosarium and nonleprosarium settlement areas at Amir Nur and Babbile Districts, Eastern Ethiopia, 2024 [n = 509].
| Variables | Categories | Settlement areas | |
|---|---|---|---|
| Previous leprosarium n (%) | Non leprosarium n (%) | ||
| Place of residence | Urban | 125 (48.83) | 131 (51.17) |
| Rural | 111 (43.48) | 142 (56.52) | |
| Mother education | Cannot read and write | 122 (40.94) | 176 (59.06) |
| Read & write | 57 (60.00) | 38 (40.00) | |
| Primary school | 20 (43.48) | 26 (56.52) | |
| Secondary school | 14 (70.00) | 6 (30.00) | |
| College and above | 23 (44.00) | 27 (56.00) | |
| Marital status | Married | 218 (47.07) | 243 (52.93) |
| Separated/divorced | 8 (30.77) | 18 (69.23) | |
| Widowed | 10 (45.45) | 12 (54.55) | |
| Occupation | Farmer | 62 (42.47) | 84 (57.53) |
| Merchant | 52 (53.61) | 45 (46.39) | |
| Employed | 48 (51.06) | 46 (48.94) | |
| Jobless | 41 (59.70) | 26 (40.30) | |
| Other | 33 (31.43) | 72 (68.57) | |
| Child number | Less than 4 | 135 (54.69) | 111 (45.31) |
| Greater than or equal to 4 | 101 (38.26) | 162 (61.74) | |
| Total | 236 (46.17) | 273 (53.83) | |
Sociodemographic characteristics of the children
A total of 509 children aged 8 to 18 years participated in this study. The mean age and SD were 10.73 ± 2.52 years. Two hundred thirty-six children (46.17%) and 273 (53.83%) were from previous leprosarium and nonleprosarium settlement areas, respectively. A total of 71 (52.59%) and 63 (47.41%) children aged 13 to 18 years were from previous leprosarium and nonleprosarium settlement areas, respectively. Among 243 male children, 116 (47.95%) were from previous leprosarium settlements, and 127 (52.05%) were from nonleprosarium settlement areas. Concerning the educational status of the children, 458 were in primary school, 207 (45.30%) were in previous leprosarium settlements, and 251 (54.70%) were in nonleprosarium settlement areas. Of the total participants, 446 had no history of NTD disease, and 63 (12.4%) had a previous history of NTD disease, 37 (58.73%) of whom were from previous leprosarium settlement areas (Table 2).
Table 2.
Sociodemographic characteristics of participant children living in previous leprosarium and nonleprosarium settlement areas at Amir Nur and Babbile Districts, Eastern Ethiopia, 2024 [n = 509].
| Variables | Categories | Settlement areas | |
|---|---|---|---|
| Previous leprosarium n (%) | Nonleprosarium n (%) | ||
| Child age in years | 8_12 | 165 (43.85) | 210 (56.15) |
| 13_18 | 71 (52.59) | 63 (47.41) | |
| Total | 236 (46.17) | 273 (53.83) | |
| Sex of the child | Male | 116 (47.95) | 127 (52.05) |
| Female | 120 (44.53) | 146 (55.47) | |
| Total | 236 (46.17) | 273 (53.83) | |
| Educational status of the child | Primary school | 207 (45.30) | 251 (54.70) |
| Secondary school | 17 (65.38) | 9 (34.62) | |
| Not in school | 12 (48.00) | 13 (52.00) | |
| Total | 236 (46.17) | 273 (53.83) | |
| Previous history of NTDs | No | 199 (44.62) | 247 (55.38) |
| Yes | 37 (58.73) | 26 (41.27) | |
| Total | 236 (46.17 | 273 (53.83 | |
Health-related quality of life of children
The mean HRQoL of children was measured by using one-way ANOVA among children living in previous leprosarium and nonleprosarium settlement areas for child self-reports and parent proxy reports. The overall mean HRQoL scores were 73.98 ± 18.47 and 77.67 ± 14.72 (F = 6.20, P = 0.013) for children living in previous leprosarium and nonleprosarium settlement areas, respectively. According to the child self-report component domains, children had a mean HRQoL for physical functioning of 74.05 ± 20.26 vs. 78.30 ± 15.26 (F = 7.16, P = 0.008), emotional functioning of 74.85 ± 19.40 vs. 77.51 ± 15.96 (F = 2.44, p = 0.009), social functioning of 74.78 ± 20.85 vs. 78.49 ± 16.880 (F = 4.87, p = 0.028), and school functioning of 72.18 ± 21.04 vs. 75.99 ± 18.14 (F = 4.78, p = 0.029). According to the parent proxy report, the overall mean HRQoL scores were 55.78 ± 12.03 and 55.61 ± 8.50 for the children living in the previous leprosarium and nonleprosarium settlement areas, respectively. This difference was statistically significant within the physical functioning domain (F = 9.10, P = 0.003) and the emotional functioning domain (F = 10.52, P = 0.001) (Table 3).
Table 3.
Comparison of the mean HRQoL of children using child reports and parent proxy reports between previous leprosarium and nonleprosarium settlement areas at Amir Nur and Babbile Districts, Eastern Ethiopia, 2024 [n = 509].
| Settlement areas | ||||||
|---|---|---|---|---|---|---|
| Child self-report | Previous leprosarium (n = 236) | Nonleprosarium (n = 273) | F | P value | ||
| Scale | Mean | SD | Mean | SD | ||
| Physical functioning | 74.05 | 20.26 | 78.30 | 15.26 | 7.16 | 0.008 |
| Emotional functioning | 74.85 | 19.40 | 77.51 | 15.96 | 2.44 | 0.009 |
| Social functioning | 74.78 | 20.85 | 78.49 | 16.88 | 4.87 | 0.028 |
| School functioning | 72.18 | 21.04 | 75.99 | 18.14 | 4.78 | 0.030 |
| Total score | 73.98 | 18.47 | 77.67 | 14.72 | 6.20 | 0.013 |
| Parent proxy report | Leprosarium (n = 236) | Nonleprosarium (n = 273) | F | P value | ||
|---|---|---|---|---|---|---|
| Scale | Mean | SD | Mean | SD | ||
| Physical functioning | 42.63 | 16.94 | 38.42 | 14.36 | 9.10 | 0.003 |
| Emotional functioning | 70.62 | 21.30 | 76.25 | 17.58 | 10.52 | 0.001 |
| Social functioning | 62.83 | 18.41 | 62.47 | 15.46 | 0.06 | 0.812 |
| School functioning | 54.92 | 15.22 | 55.63 | 12.39 | 0.34 | 0.560 |
| Total score | 55.78 | 12.03 | 55.61 | 8.50 | 0.03 | 0.858 |
*A higher mean score indicates better health-related quality of life.
Comparison of the child-self and parent proxy reporting of pedsql™ 4.0
For children living in areas with previous leprosarium settlements, the mean HRQoL was compared between child self-reports and parent proxy reports using paired t-tests, which revealed that there was a statistically significant difference in all PedsQL™ 4.0 subscales or domains, such as physical functioning (74.05 ± 20.26 vs. 42.63 ± 16.94, t = 17.19, p ≤ 0.001), emotional functioning (74.85 ± 19.40 vs. 70.62 ± 21.30, t = 4.37, p ≤ 0.001), social functioning (74.78 ± 20.85 vs. 62.83 ± 18.41, t = 10.13, p ≤ 0.001), and school functioning (72.18 ± 21.04 vs. 54.91 ± 15.22, t = 13.08, p ≤ 0.001). Moreover, for children living in nonleprosarium settlement areas, paired t-tests were performed to compare the mean HRQoL using child self-reports and parent proxy reports, and the results revealed that there was a statistically significant difference in all the pedsQL™ 4.0 subscales or domains (Table 4).
Table 4.
Comparisons of the mean HRQoL on 4 subscales of the PedsQL4.0 between child self-reports and parent reports in previous leprosarium and nonleprosarium settlement areas at Amir Nur and Babbile Districts, Eastern Ethiopia, 2024 [n = 509].
| Previous leprosarium settlements | ||||||||
|---|---|---|---|---|---|---|---|---|
| Scale | Child report N = 236) | Parent report (N = 236) | t | P value | ||||
| Mean | SD | 95% CI | Mean | SD | 95% CI | |||
| Physical functioning | 74.05 | 20.26 | 71.44–76.66 | 42.63 | 16.94 | 40.45–44.81 | 17.19 | 0.000 |
| Emotional functioning | 74.85 | 19.40 | 72.35–77.35 | 70.62 | 21.29 | 67.88–73.36 | 4.37 | 0.000 |
| Social functioning | 74.78 | 20.85 | 72.10-77.47 | 62.83 | 18.41 | 60.46–65.20 | 10.13 | 0.000 |
| School functioning | 72.18 | 21.04 | 69.47–74.89 | 54.91 | 15.21 | 52.95–56.87 | 13.08 | 0.000 |
| Previous non-leprosarium settlements | ||||||||
|---|---|---|---|---|---|---|---|---|
| Scale | Child report (N = 273) | Parent report (N = 273) | t | P value | ||||
| Mean | SD | 95% CI | Mean | SD | 95% CI | |||
| Physical functioning | 78.30 | 15.26 | 76.47–80.13 | 38.42 | 14.36 | 36.69–40.14 | 27.74 | 0.000 |
| Emotional Functioning | 77.51 | 15.96 | 75.59–79.43 | 76.25 | 17.58 | 74.14–78.36 | 1.873 | 0.031 |
| Social Functioning | 78.49 | 16.88 | 76.47–80.52 | 62.47 | 15.48 | 60.62–64.33 | 13.67 | 0.000 |
| School Functioning | 75.99 | 18.14 | 73.81–78.16 | 55.63 | 12.39 | 54.14–57.12 | 17.93 | 0.000 |
*A higher mean score indicates a better HRQoL.
The overall mean HRQoL of children was compared for all children living in both villages in all 4 subscales or domains of the PedsQL4.0 between the child self-reports and parent reports using paired t-tests, and the results revealed that there was a statistically significant difference between the child self-reports and parent proxy reports. The mean HRQoL score reported by the child self-reports was 75.94 ± 16.63, compared to 55.65 ± 10.32 for the parent proxy reports (t = 31.59, p ≤ 0.001) (Table 5).
Table 5.
Overall comparisons of the mean HRQoL of children in 4 subscales of the PedsQL4.0 between child self-reports and parent reports in previous leprosarium and nonleprosarium settlement areas at Amir Nur and Babbile Districts, Eastern Ethiopia, 2024 [n = 509].
| Scale | Child report (N = 509) | Parent report (N = 509) | t | P value | ||||
|---|---|---|---|---|---|---|---|---|
| Mean | SD | 95% CI | Mean | SD | 95% CI | |||
| Physical functioning | 76.32 | 17.85 | 74.76–77.88 | 40.41 | 15.75 | 39.04–41.79 | 30.82 | 0.000 |
| Emotional functioning | 76.26 | 17.66 | 74.71–77.81 | 73.51 | 19.74 | 71.78–75.24 | 4.672 | 0.000 |
| Social functioning | 76.75 | 18.89 | 75.10-78.41 | 62.54 | 16.99 | 61.06–64.03 | 16.93 | 0.000 |
| School functioning | 74.21 | 19.60 | 72.49–75.92 | 55.25 | 13.80 | 54.04–56.45 | 21.92 | 0.000 |
| Total | 75.94 | 16.64 | 74.49–77.40 | 55.65 | 10.32 | 54.74–56.55 | 31.59 | 0.000 |
A higher mean score indicates a better HRQoL.
Poor HRQoL: according to this study of 236 children living in previous leprosarium settlement areas, 61 (26%) and 131 (44.7%) children had poor mean HRQoL according to child reports and family reports, respectively, while 273 children living in nonleprosarium settlement areas 53 (22.3%) and 167 (62%) of the children had poor mean HRQoL according to child reports and family reports, respectively. Of the total 509 children living in both areas, 123 (24.1%) children from the child reports and 226 (44.35%) from the family reports reported poor HRQoL.
Good HRQoL: according to this study of 236 children living in previous leprosarium settlement areas, 175 (74%) and 142 (55.3%) children reported good mean HRQoL according to child reports and family reports, respectively, while 273 children from nonleprosarium settlement areas (77.7%) and 106 (38%) children reported good mean HRQoL according to child reports and family reports, respectively. Of the total 509 children living in both areas, 386 (75.9%) children from the child self-reports and 283 (55.65%) children from the family reports reported good HRQoL.
Factors associated with the health-related quality of life of children
To identify factors associated with HRQoL in children living in previous leprosarium and nonleprosarium settlement areas, simple and multiple linear regression analyses were conducted. In simple linear regression analysis, sociodemographic characteristics of the caregiver/mother (maternal or caregiver education and occupation, marital status, maternal age, child education, child sex, weight, family size, settlement sites), hygienic aspects of the child (face washing), clinical aspects of the disease (pruritus, current NTDs, and previous history of NTDs), and water, sanitation and hygiene-related factors (water shortage, latrine use, and hand washing facility) were included in the final model. The final model was fitted for the following assumptions: linearity and multicollinearity were checked using the variance inflation factor (VIF) (2.90), and the normality of the standardized residuals was tested using a normal Q‒Q plot or statistical tests for normality (Figs. 1 and 2). Overall, the results showed that the utility of the predictive model was significant (F (29, 479) = 6.08, R2 = 0.27, p < 0.001). All of the predictors explained a large amount of the variance between the variables (67.82%).
Fig.1.
Graph of the normal probability plot of the residuals (errors) of the mean HRQoL assessed for children living in previous leprosarium and nonleprosarium settlement areas at Amir Nur and Babbile Districts, Eastern Ethiopia, 2024 [n = 509].
Fig.2.
Normal Q‒Q plot or statistical normality tests of mean HRQoL assessed for children living in previous leprosarium and nonleprosarium settlement areas at Amir Nur and Babbile Districts, Eastern Ethiopia, 2024 [n = 509].
Multiple linear regression analysis revealed that the HRQoL of children in primary and secondary schools was significantly different. The coefficient of HRQoL of children in primary school was (β = 14.69; 95% CI: 8.69, 20.69) times greater than children not in school. Children who were learning in secondary school had an increased total HRQoL score (β = 10.88; 95% CI: 2.01, 19.76) compared to children not in school. Moreover, the number of times children wash their face increases the HRQoL of children positively, and children who wash their face two times (β = 5.54, 95% CI: 2.14, 8.95), three times (β = 4.02, 95% CI: 0.087, 7.96), or four times (β = 6.33, 95% CI, 1.00 to 11.66) per day increase the HRQoL compared to children who wash their face once a day. Furthermore, children who had a previous history of any NTD (skin, trachoma, or STH) (β = -8.54; 95% CI -12.93, -4.15) had significantly lower HRQoL than did their counterparts (p = 0.003). The HRQoL of children who had no current NTDs was (β = 4.02; 95% CI: 0.66, 7.37) times greater than that of children who had been diagnosed with NTDs such as skin, trachoma, and STHs. In addition, the HRQoL of children whose families did not have hand-washing facilities (β = -8.57; 95% CI: -15.22, -1.92) was lower than that of their counterparts (Table 6).
Table 6.
Univariate and multivariate linear regression analysis: standardized beta coefficients of the mean HRQoL of children living in previous leprosarium and nonleprosarium settlement areas at Amir Nur and Babbile Districts, Eastern Ethiopia, 2024 [n = 509].
| Mean HRQoL of child | Variables | Simple linear regression | Multiple linear regression | ||
|---|---|---|---|---|---|
| β Coef [95% CI] | P value | β Coef [95% CI] | P value | ||
| Sociodemographic | |||||
| Caregiver/mother’s educational status | Cannot read and write | 0 | 0 | ||
| Read & write | -5.41 (-9.19, -1.62) | 0.005 | -2.95 (-6.83, 0.91) | 0.133 | |
| Primary school | 2.72 (-2.36, 7.81) | 0.293 | 2.00 (-2.95, 6.96) | 0.428 | |
| Secondary school | 2.47 (-4.94, 9.89) | 0.513 | 1.93 (-5.04, 8.91) | 0.587 | |
| College and above | -1.17 (-6.08, 3.73) | 0.638 | 0.679 (-4.90, 6.26) | 0.811 | |
| Child educational status | Primary school | 15.41 (8.93, 21.89) | 0.000 | 14.69 (8.69, 20.69) | 0.000 |
| Secondary school | 6.40 (-2.43, 15.24) | 0.155 | 10.88 (2.01, 19.76) | 0.016 | |
| Not in school | 0 | 0 | |||
| Marital status | Married | 0 | 0 | ||
| Separated/divorced | -1.78 (-8.32, 4.74) | 0.591 | 0.26 (-5.94, 6.47) | 0.934 | |
| Widowed | -1.07 (-8.14, 6.00) | 0.767 | − 0.11 (-7.02, 6.79) | 0.974 | |
| Residency | Urban | 0 | 0 | ||
| Rural | 4.71 (1.87, 7.55) | 0.001 | 2.03 (-2.53, 6.59) | 0.382 | |
| Child sex | Male | 0 | 0 | ||
| Female | − 0.48 (-3.35, 2.38) | 0.740 | -2.48 (-5.07, 0.10) | 0.060 | |
| Number of Child in the house | less 4 | 0 | 0 | ||
| Greater or equal to 4 | (-1.99, 3.74) | 0.551 | -1.45 (-4.99, 2.09) | 0.421 | |
| Settlements | Previous leprosarium | 0 | 0 | ||
| Nonleprosarium | 3.40 (0.57, 6.26) | 0.020 | 2.41 (-0.43, 5.25) | 0.096 | |
| Child pruritus or itch | No | 0 | 0 | ||
| Yes | -5.43 (-9.50, -1.37) | 0.009 | -3.43 (-7.42, 0.56) | 0.092 | |
| Previous history of NTDs | No | 0 | 0 | ||
| Yes | -12.66 (-16.87, -8.44) | 0.000 | -8.54 (-12.93, -4.15) | 0.000 | |
| Current diagnosis of NTDs | Yes | 0 | 0 | ||
| No | 6.91 (3.45, 10.37) | 0.000 | 4.02 (0.66, 7.37) | 0.019 | |
| Child number of face washing per day | 1 | 0 | 0 | ||
| 2 | 6.03 (2.59, 9.45) | 0.001 | 5.54 (2.14, 8.95) | 0.001 | |
| 3 | 3.92 (0.11, 7.73) | 0.044 | 4.02 (0.08, 7.96) | 0.045 | |
| 4 | 3.24 (-2.14, 8.62) | 0.238 | 6.33 (1.00, 11.66) | 0.020 | |
| Water shortage | No | 0 | 0 | ||
| Yes | -4.67 (-7.65, -1.68) | 0.002 | -2.44 (-5.43, 0.55) | 0.110 | |
| Latrine in use | No | 0 | |||
| Yes | 2.70 (-0.48, 5.89) | 0.096 | |||
| Hand washing facility | Yes | 0 | 0 | ||
| No | -6.96 (-13.99, 0.06) | 0.052 | -8.57 (-15.22, -1.92) | 0.012 | |
Discussion
This is the first evaluation of HRQoL among children aged 8 to 18 years who were living in previous leprosarium and nonleprosarium settlement areas in eastern Ethiopia. We estimated and compared the HRQoL of children using the well-validated Pediatric Quality of Life Inventory 4.0 (PedsQL4.0), which was used to measure and explore the relationships between 4 subscales of the PedsQL4.0 and HRQoL. The results provide important insights into the HRQoL of children living in previous leprosarium and nonleprosarium settlement areas.
The overall mean HRQoL scores were 75.94 ± 16.64 and 55.65 ± 10.32 for both settlement areas according to the child reports and parent proxy reports, respectively. The number of child reports is comparable, and the number of parent reports is lower than that in studies conducted in Slovenia22. The most prevalent problems were lower physical functioning (42.63 ± 16.94) than in 81.9 ± 19.6 studies performed in Addis Ababa, Ethiopia23. Moreover, we found that children living in previous leprosarium settlement areas reported significantly lower physical, emotional, social, and school functioning than children living in previous non leprosarium settlement areas. The overall mean HRQoL score of children living in previous leprosarium settlement areas was 73.98 ± 18.46, which was greater than that reported in a study conducted in northwest Ethiopia (61.93 ± 17.1)18. The lowest mean HRQoL score in the present study was from the family report, and it was the physical functioning domain in previous nonleprosarium settlement villages (38.418 ± 14.363; F = 9.10, P= 0.0027). This value is much lower than that reported in a study by Addis Ababa, which reported a value of 63.6 ± 1023. On the other scales, the mean HRQoL score was lower in previous leprosarium settlement villages and higher in social functioning and school functioning, which were not statistically significant according to family reports. The overall mean HRQoL of children according to family reports was similar at 55.78 ± 12.028 and 55.61 ± 8.50, respectively, which was much lower than that reported in a study performed in India (90.10 ± 9.50)24.
In the previous leprosarium settlement village, the mean HRQoL on 4 subscales of the PedsQL4.0 was compared between the child report and parent report, and the lowest mean HRQoL was 42.628 ± 16.944 according to the parent report compared to 74.052 ± 20.256 according to the child self-report, which is much lower than that reported in studies performed in India (87.50 ± 11.10 child reports and 90.10 ± 9.50 parent proxy reports)24. The mean HRQoL in the previous leprosarium settlement area was lower in parent reports than in child self-reports, which is similar to the findings of a study in Nepal25. Additionally, in the nonleprosarium settlement village, the mean HRQoL was compared between the child reports and parent reports and the results showed that the mean HRQoL according to the child reports was significantly greater for all 4 subscales of the PedsQL4 than for the family reports, and all the associations were statistically significant. Overall, there was no trend toward better HRQoL scores in these areas, indicating that children who lived in previous non leprosarium settlement villages had better HRQoL than those who lived in previous leprosarium settlement villages.
The overall comparisons of the mean HRQoL of children in the 4 subscales of the PedsQ L4.0 between child reports and parent reports in both previous leprosarium and nonleprosarium settlement villages showed that child reports had better mean HRQoL scores than did parent reports, which is comparable to the findings of a study performed in Addis Ababa (t = 31.59, p< 0.001)23. This comparison between child reports and family reports in both previous leprosarium and nonleprosarium settlement areas shows that children have more information and understanding concerning their health and the factors affecting their health than their caregivers/mothers.
This study identified several important factors that influence the mean HRQoL of children. Both univariate analysis and multiple analysis were conducted to study the associations between different variables and the HRQoL of the children. Multiple linear regression analysis revealed that the child’s educational status, presence of a previous history of NTD, presence or absence of NTD in the last week, number of times the child washed his/her face per day, and absence of a hand-washing facility in the house were highly significantly associated with the mean HRQoL of the child (p < 0.05).
This finding is supported by studies in Spain, Brazil, and Kenya that concluded that the educational status of the child is strongly associated with HRQoL20,26,27. This is because educated children have more information and understanding concerning their health and the factors affecting their health than do their nonschooling children. Moreover, previous history and current diagnosis of NTDs have a strong relationship with HRQoL. This is supported by a review by Hannah Kuper in 201928. This is because children with NTDs may have difficulties carrying out activities with their peers, and this may also be due to stigma and mental health consequences. Furthermore, poor access to water, poor sanitation, and poor housing were associated with a simple linear regression analysis but lost this association when confounders were controlled for. This finding that hand-washing practices decreased HRQoL is supported by findings in Kenya27. This may be due to poor hygiene and a lack of sanitation, which can propagate NTD transmission and subsequently affect the health and well-being of children27.
Strengths and limitations
Several strengths of this study should be mentioned even if it has fewer limitations. The study was conducted in previous leprosarium settlement and non leprosarium settlement areas in rural and urban areas of eastern Ethiopia, which represent different sociodemographic characteristics; therefore, it should be noted that the estimated HRQoL of both children living in a previous leprosarium and non- leprosarium settlement areas may better represent that of these children living in eastern Ethiopia and of the whole country. Since this was a cross-sectional comparative study, we identified and focused on understanding associations between specific sociodemographic factors and HRQoL.
Conclusion
Based on child self-reports, one in four children from previous leprosarium areas had poor HRQoL. Children’s educational status, their daily habits of washing their face, not having neglected and tropical diseases had improved HRQoL. Overall mean HRQoL among the 4 subscales of the PedsQL4. 0 was 73.98 ± 18.47 and 77.67 ± 14.71 for child self-reports and 55.77 ± 12.03 and 55.61 ± 8.49 for proxy reports in leprosarium and nonleprosarium settlement areas, respectively. To improve HRQoL, stakeholders should pay attention to and work on the early detection and treatment of neglected and tropical diseases, child education, and proper sanitation practices in the community. Increasing the capacity of health extension workers through training in the provision of community health education, screening for early detection, and treatment of NTDs is essential.
Acknowledgements
We would like to express our gratitude to Haramaya University for providing funding for this research project. We are also thankful to the data collectors and participants for their work and cooperation in providing all the necessary information.
Abbreviations
- ANCOVA
Analysis of covariance
- ANOVA
Analysis of variance
- CESD
Center for epidemiological studies-depression scale
- FMOH
Federal Mistry of Health
- HRQoL
Health-related quality of life
- NTDs
Neglected tropical diseases
- PedsQL4.0
Pediatric Quality of Life Inventory 4.0 Generic Core Scale
- STATA
Statistical software for data science
- WHO
World Health Organization
Author contributions
All authors made a significant contribution to the conception, study design, execution, and acquisition of data, analysis, and interpretation; took part in drafting, revising, or critically for important intellectual content; gave final approval of the version to be published; agreed on the journal to which the article has been submitted; and agreed to be accountable for all aspects of the work.
Funding
This work was funded by Haramaya University, Research Affairs with grant ID (HURG_2022_02_02_88). This organization or funder had no role in the study selection, data collection, analysis, conclusion, or interpretation.
Data availability
The data will be available upon request from the corresponding author.
Declarations
Competing interests
The authors declare no competing interests.
Ethical approval
This study was conducted in accordance with the guidelines and regulations of the Declaration of Helsinki. The study protocol was approved by Haramaya University, College of Health and Medical Sciences Institution Health Research Ethical Review Committee. (Ref. No. IHRERC/025/2024. An official cooperation letter was sent to Amir Nur and Babile districts Health Bureau and other concerned bodies. A written letter of permission was granted by the Districts’ concerned bodies to conduct the study in Ganda Fero and Bisidimo kebeles. To participate in the study, every parent or guardian of a child under eighteen years was informed of its objectives and significance before their child’s participation. Children aged 12 to 18 were asked to give their verbal consent. Parents who agreed to participate in the study were informed and allowed to give their informed, written, and signed consent before data collection began. Confidentiality was maintained at all levels of the study by excluding names and identifiers in the questionnaire, and the data were used only for this purpose.
Consent for publication
Not applicable.
Footnotes
Publisher’s note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
The data will be available upon request from the corresponding author.