Introduction

The World Health Organization (WHO) defines quality of life as “an individual’s perception of their position in life in the context of the culture and the value systems in which they live and in relation to their goals, expectations, standards, and concerns” [1]. This definition is further qualified, in health research, to account for the impact of diseases on health outcomes including physical, mental, and emotional wellbeing [2].

Dermatologic diseases have a serious impact on the quality of life of those affected. Bodily dissatisfaction, anxiety, and depression have been commonly reported among people affected with skin diseases [3,4]. Given the chronicity of most dermatologic conditions, the physical and psychosocial impacts are often prolonged [5]. Psychological impacts result from altered physical appearance, social stigma, and debilitating disease symptoms whose severity is determined by the size of lesions, the affected body parts, and symptom duration [5,6]. In previous research, sociodemographic characteristics such as sex, age, income, and marital status were associated with quality of life impairment [5–7].

Scabies is a parasitic skin infestation caused by the mite Sarcoptes scabiei [8]. Manifestations of classical scabies include severe itch and papulo-vesicular rash primarily involving body crevices such as the axillae, wrists, finger webs, buttocks, and the genitalia in men [8,9].

Scabies was recently adopted by the WHO as a neglected tropical disease [10]. Its high disease burden, skewed distribution towards under-resourced communities, and amenability to control interventions were among the criteria for the designation. This attention has revitalized the control efforts of local actors and international organizations [11].

The focus of classic scabies case management is eliminating the mite [8,12]. Manifestations of scabies infestation that undermine the quality of life of patients such as skin irritation and itch do not receive the necessary attention. Lack of evidence on scabies epidemiology and its effect on quality of life and psychosocial wellbeing of patients partly explains the narrowed focus area in scabies case management [13,14]. Data explaining quality of life impairment secondary to scabies are limited [14–16]. This study aimed to determine the overall and most affected quality of life domains among people with scabies by using community-based Dermatologic Life Quality Index (DLQI) data [17]. The findings will inform the development of a more comprehensive scabies case management and community based scabies control interventions.

Methods

Results

Study participant profile

Eighty three households (21.7% of screened households) were found to have one or more people affected by scabies. Of the 91 adults diagnosed with scabies, 86 (94.5%) participated in this study. Data on 5 participants was dropped due to poor quality. The mean age of participants was 33 and most were between the ages 18 and 30 years. Nearly three quarters of participants had not had formal education, and only 14.1% had secondary (or above) education. Most participants (81.4%) were married. Unmarried, divorced, and widowed participants were grouped as ‘single’ comprising only 18.6% of the participants. The main stay of occupation was farming (87.2%) and 4.7% of the participants did not take part in any income generating activities. The distribution of households across wealth quintiles was comparable with a slight preponderance of highest wealth quintile households (32.6%) (Table 1).

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Table 1. Sociodemographic characteristics of study participants (n = 86).

https://doi.org/10.1371/journal.pntd.0012429.t001

Quality of life among people with scabies

The reliability of the Amharic version scale was good, with Cronbach’s α value 0.93 (>0.7). Cumulative mDLQI score among participants was 9.2 (SD = 7.6). This corresponds to moderate severity according to Hongbo [28]. ‘Symptoms’ and ‘sexual difficulties’ items had the highest (50.0%) and lowest (8.2%) proportions of participants reporting extreme quality of life impairment. Slightly more than half of the participants reported no effect against the items ‘work and study’, ‘clothes’, ‘daily activities’, and ‘personal relationship’ items (Table 2).

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Table 2. Distribution of dermatologic life quality index items among adults with scabies (n = 86).

https://doi.org/10.1371/journal.pntd.0012429.t002

We did not observe a statistically significant difference in ranks of the total DLQI score by sociodemographic characteristics of participants or mean number of days with scabies symptoms (Table 3).

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Table 3. Demographic characteristics associated with a difference in quality of life of adults with scabies (n = 86).

https://doi.org/10.1371/journal.pntd.0012429.t003

The symptoms and feelings domain had the highest mean DLQI score 3.7 + 1.9 and leisure the lowest 0.8 + 1.1. (Fig 1)

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Fig 1. Mean scores of the five quality of life domains.

https://doi.org/10.1371/journal.pntd.0012429.g001

Scabies had severe and extremely severe effect on the quality of life of 13 (15%) and 23 (27%) participants, respectively. Mild or moderate effect was reported in 43 (50%) scabies cases. (Fig 2)

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Fig 2. Dermatology quality of life index scores by degrees of severity.

https://doi.org/10.1371/journal.pntd.0012429.g002

Discussion

Quality of life was moderately impaired among people affected by scabies in north-western Ethiopia. The items: ‘symptom’, ‘feelings’, and ‘work or study’ were the main contributors to the overall DLQ impairment. ‘Symptoms and feelings’ and ‘leisure activity’ were the highest and lowest scoring DLQ domains. However, there was no difference in DLQI score by sociodemographic characteristics of participants or symptom duration.

In this study, we omitted the sporting activities and treatment items, from the ten that formed the standard DLQI scale, for lack of relevance to the study community. This may affect comparability of the current findings with literature. However, we assume the effect is minor as organized sporting activities were uncommon in the study area [26]. In a study among podoconiosis patients, in southern Ethiopia, the contribution of impaired sporting activities to overall impairment was marginal [25].

Comparable to the current findings, studies in China and Brazil reported moderate impairment to quality of life of scabies patients [14,15]. Factors such as degree of alteration of the skin surface, body parts affected, and the type of lesion are important predictors of severity of impairment in people with dermatologic diseases [6,7]. In classical scabies, the primary lesions are papules with typical distribution [29]. Their small-size and distribution, which mainly involves parts of the body that can be covered from other people, may minimize the impact on selected life quality domains. This is also true for other parasitic infestations that commonly cause mild alterations to the skin surface such as tungiasis and pediculosis [30,31]. Conversely, other skin NTDs including podoconiosis, leprosy, and leishmaniasis, which cause severe skin lesions and bodily function impairment have severe or very severe overall impact on quality of life of patients [32–34]. Apart from presentation, disease pattern may play a part in determining its effect on quality of life. Scabies had been endemic to north-western Ethiopia and an outbreak was reported in 2015 [20], which was not controlled at the time of this study. Based on our field observation, we believe the secular trend and large-scale occurrence had contributed to a progressive reduction in the stigma attached to scabies. This may reduce the quality of life impairment by ameliorating the attributes that undermine social functioning.

The ‘sexual difficulties’ item contributed the least to quality of life impairment total score [14]. Sexual difficulties or dysfunction in people affected with dermatologic diseases result from physical impairment or psychosocial factors [35]. Pain and discomfort from the skin lesions and distorted self-perception bridge skin diseases and their effect on sexual function [36–38]. Classical scabies causes small-sized papular lesions with limited alterations to the skin surface [29]. This may minimize its impact on sexual appeal and performance before and during sexual intercourse. Social norms may also explain the limited impairment to sexual function. In most Ethiopian cultures discussing sex is a taboo, more so among married couples [39]. In our study, more than 80% of the participants were married. It is likely that most were hesitant to discuss any change in their sexual life with their partners.

Of the five DLQI domains investigated in this study, the highest scores arose in the ‘symptoms and feelings’ domain as was the case in the studies from China and Nepal [15–17]. This domain is comprised of items measuring adverse skin sensations caused by the infestation and patients’ affective response to the disease manifestations. This includes itch and irritation caused by the primary lesions, or pain and soreness that are often associated with secondary bacterial infections [40]. The intense generalized itch [41] and associated sleep disturbance may also feed into the contribution of this domain to the quality of life total score [42,43]. Optimizing symptom management is vital as getting relief from the debilitating symptoms is an important driver of care seeking for scabies [44].

The second item within the symptoms and feelings DLQ domain captures affective response of scabies patients to the disease symptoms. Skin lesions and related alterations of the skin surface undermine the mental well-being of patients causing low self-esteem, social isolation, and at times depression [15,45,46]. These responses become more intense when social stigma is attached to the disease or its symptoms [45]. Scabies lesions, which involve the hands, and the constant generalized itch, predispose scabies patients to stigma from others contributing to the negative affective response [47,48]. A study among scabies free participants of the same community reported that more than three quarters of participants preferred to avoid scabies patients [19]. The commonest responses to the anticipation of developing the infestation were fear and shame [19]. This pervasive stigma can have a toll on the mental health of scabies patients warranting psychosocial interventions alongside clinical care.

‘Daily activity’ was the second most affected domain. It measures the impact on participants’ clothing choices and on work and study. Worth et.al. reported a comparable severity of impact where scabies patients living in the slums of northeast Brazil had to change into clothing which covered most parts of their body [15]. Trousers, long skirts and tops with long sleeves were preferred as they cover most of the lesions and help to prevent potential stigma [49]. The impact on clothing is more pronounced in hot weather where people prefer summer dresses to acclimate [15]. Our study population is accustomed to modest clothing with sleeves covering most parts of the body. The impairment to work and study could have resulted from the inconvenience caused by the lesions to physical activity. Sleep disturbance secondary to the itch, which worsens at night, also undermines productivity during daytime [29].

The ‘personal relationship’ domain was the third most affected. Of the two items in this domain the ‘relationship with family and friends’ was more impaired. In many communities, scabies is associated with poverty and lack of hygiene [43,49]. Such misconceptions may fuel social stigma against scabies patients. An article from this same community reported that 37% of the sample preferred to avoid scabies patients [19]. These circumstances may lead to patients limiting social relations in fear of rejection. The other reason for limiting social interactions may be to prevent transmission. Patients who are aware of the increased risk of transmission with increasing physical proximity may isolate themselves to protect people who are close to them [49]. The sociocultural context is in the background of the dynamic relationship between the disease and its effect on quality of life. Further qualitative studies should be conducted to investigate the role of community perception and social norms in mediating the impact of scabies on quality of life of patients.

Sociodemographic characteristics and duration of disease symptoms were not associated with quality of life impairment. In another study, gender shaped the effect of scabies on the quality of life of patients [15]. Females were more affected than males and negative self-perception, caused by alterations to the skin, contributed to the impairment [15]. The traditional clothing in our study population, which covers most parts of the body, may limit the severity of impairment by minimizing the effect on clothing preferences, daily activity, and stigma from others. Though we did not find a statistically significant association, the link between sociodemographic characteristics and quality of life impairment among people with scabies needs further research. We suggest multicentre studies with larger sample sizes to investigate potential differences between the different demographic groups with more accuracy.

Longer symptom duration is an important predictor of quality of life impairment in other skin NTDs such as leishmaniasis. It correlates with severity and signifies possible complications. In the case of scabies, prolonged symptom duration may not necessarily correlate with severity. Earlier scabies research indicated a decrease in the number of mites with an increase in the duration of the infestation [50]. However, this is true only if there is neither secondary bacterial infection nor progression to crusted scabies.

The overall effect of scabies on the quality of life of the sample adult study participants was moderate, though a quarter experienced an extremely severe effect. Disease symptoms and self-perception items contributed the most to the overall quality of life impairment. Interventions that aim to improve quality of life, alongside the standard treatment, need to include management of disease symptoms. Alleviating stigma through community-based educational interventions can help reduce the impact on psychosocial wellbeing of patients.

Acknowledgments

We would like to thank Gimja Bet hospital staff for conducting clinical diagnosis of scabies cases and data collection. Awi Zone and Ayu Guagusa District Health and administration offices for providing administrative support during field work. We are grateful to the study participants for their time.