Financial burden impact quality of life among lymphatic Filariasis patients

Lymphatic filariasis (LF) is an infection that directly impairs the lymphatics and renders long-lasting disability to its victims [1]. LF is a mosquito-borne disease in which mosquitoes transmit the causative organisms (Wuchereria bancrofti, Brugia timori and B. malayi filarial worms) [2] to uninfected persons. The disease is endemic in 83 countries, with most of the cases reported in India, one third in Africa, and the remaining cases in the Pacific, the Americas, South-East Asia, and the Eastern Mediterranean regions [3]. In Ghana, bancroftian filariasis has been noted to be distributed in the northern guinea savannah and the southern coastal regions with a varied microfilaraemia prevalence of 0–20% as surveyed in 1994 [4]. LF has a varied form of manifestations, such as hydrocele, lymphoedema, and elephantiasis [5]. For instance, in highly endemic communities such as Kassena Nankana District (Upper East Region of Ghana), the prevalence of hydrocoele and elephantiasis of the leg has been recorded to be about 31 and 3.8%, respectively [6]. In addition, women are ten times more likely than men to have lymphoedema of the leg [7]. This trend is still consistent in other neglected tropical diseases such as trachoma where female caregivers most often contact infected children than their male counterparts and thus are at higher risks of infecting themselves [8]. Individuals suffering from lymphatic filariasis experience repeated filarial attacks known as adenolymphangitis (ADL), which hinders them from actively participating in social and economic activities [9‐11]. Krishna et al. 2005, identified ADL as the primary cause of disabilities among LF patients [12].

In line with the strategies of the Global Programme for Elimination of Lymphatic Filariasis (GPELF) to interrupt LF transmission in endemic areas, more than 890 million individuals have participated in the mass drug administration (MDA) programmes in 37 countries as of 2017 [5]. In Ghana, MDA was started in 2001 and had reached national coverage in 2006. After 14 years of the annual treatment of MDA, 69 districts had achieved low transmission of the disease; thus, MDA was stopped for these districts, 29 districts still have persistent transmissions. The persistent transmission of the disease in such districts is not clear; however, in Tanzania, a similar trend was observed. This was attributed to poor coverage of MDA and non-compliance to the medication by a section of the population.

Nonetheless, the second component of the LF elimination programme of forestalling and managing acute and chronic disability among those already affected by the disease has not achieved appreciable results. The idea of this strategy is to assist the 40 million people already affected by the disease and largely neglected, to have a better quality of life, and to be capable of engaging fully in both economic and social activities [5]. Quality of Life is defined as an individual’s perception of one’s position in life in the context of value systems and culture, and in relation to one’s goals, standards, expectations, and concerns [13]. Thus, in this perspective, WHO defines health as being “not only the absence of disease and infirmity but also the complete state of physical, mental, and social well-being” [14].

To ensure a better health-related quality of life of LF patients, the Morbidity Management and Disability Prevention (MMDP) of the World Health Organization (WHO) enrolled a basic package of care. This package of care must be accessible to LF patients, i.e., surgery for hydrocele, treatment for episodes of adenolymphangitis, management of lymphoedema to hinder episodes of adenolymphangitis, and progression of disease [15]. To this end, GPELF initiated the Community Home-Based Care (CHBC) concept of reaching out to individuals with varying degrees of morbidities to alleviate pain and prevent disease deterioration [16]. Thus, this study aimed to assess the quality of life of lymphatic filariasis patients in some selected LF hotspot communities in Ghana.

This is the first study to determine the general quality of life of lymphatic filariasis patients living in Ghana, even though a similar study has been conducted in India [1]. From our results, the overall mean QoL score for the LF subjects was 68.24, which is almost the same as the study conducted in India [19] at the baseline. Nevertheless, the quality of life of LF participants in this study was slightly lower than a previous study conducted in the urban area of Tiruchirappalli in India, where an overall mean QoL score of 69.81 [1] using the same LFSQQ instrument. Even though a score of 100 is the highest quality of life, our study participants’ overall QoL of 68.24 presents a good quality of life. Notwithstanding, a higher QoL could be achieved if LF patients are taken through regular skin wash activities, exercises, and other requisite hygienic practices. A six (6) months camp set up for LF patients in three endemic communities in India’s Kerala province showed a significant upsurge in the QoL of the patients from 68.23 to 74.57 [19].

Moreover, more than half of our LF participants responded that they had no financial assistance from any relation. This was not surprising since the environment domain was observed to have the least domain QoL score. There are apparent reasons for such observations. First of all, the observation can be due to the dilapidating consequences of lymphatic filariasis on the patients, which rendered most of our study participants jobless or had reduced working days, making them wholly dependent on relatives and friends. This finding confirms other results from this study, where 29% of the respondents indicated that their condition had a negative effect on their ability to engage fully in economic activities. In addition, the stigma associated with the disease prevented some of the study participants from embarking on their jobs, particularly those who were engaged in fish mongering and petty trading. The situation is further complicated as the LF usually affects poorer communities [12, 20] where most LF patients’ mainstay financial support (relatives and friends) is most often limited. This reason is corroborated by responses given by LF infected individuals in a different study conducted in Togo [21]. Our results show that 78% of the respondents felt insecure in their routine life. Although the reason for this insecurity was not immediately clear from our study, this may be due to the accustomed dejection and infamy most individuals who suffer neglected tropical disease face in their respective communities [12].

A community-level analysis of the overall quality of life also revealed that the QoL score did not depend on which community the LF patients resided in as it tends not to show any vast differences across the communities of study. This may be due to similar economic statuses of the patients across the communities, which tend to be an upshot of LF disease’s impact, making them depend on peasant farming and/or fishing activities for their livelihood. An observed general pattern of the specific domains, i.e., Psychological, Disease burden, and Environment domains in LFSQQ across the communities, also consolidated the impression that the LF patients in this study experienced almost the same impact infection of the community origin. Therefore, any intervention developed to alleviate the suffering and/or to increase the quality of life of LF patients can be generalized for all and possibly replicated in other similar settings.

The stage of the lymphoedema defined the severity of the disease. The worth of wellness of the study participants presenting the late stages of the infection was abysmal as the indicators observed declined in their overall mean QoL index. The negative Pearson’s correlation (r = − 0.504, p-value = 0.001) between the severity of the disease and the quality of life of the study participant was divergent with the positive correlation (r = 0.74, p-value < 0.001) of the severity of disease and quality of life score in a different study [1]. Nevertheless, an erstwhile study using modified Dermatology Life Quality Index (mDLQI) also revealed that the severity of the filarial lymphoedema had a considerable negative repercussion on the QoL of the individuals [22]. A possible explanation for the negative effect of the stage of the lymphoedema on the respondents’ quality of life in our study may lie in the fact that as the swelling of their affected limbs worsened, the less productive they become and so a toiling effect on the well-being of LF patients. Besides, the stage of LF is in a close association with the Sex of the study participants using the logistic regression model (p-value = 0.015).

For further analysis of how the disease impacts the LF participants’ physical abilities, we used the mobility, daily activities, pain/discomfort, and self-care domains in assessing this as used elsewhere [12]. The physical ability of LF participants has been widely reported to be hampered as compared to healthy individuals without the condition [5, 12, 15, 16], and this was expected in this study. On the other hand, other studies [1, 19] have shown a higher level of self-care among LF patients, which corroborates with our current study, where the self-care domain had the highest average QoL score of 85.03. This finding reflects the composition of our LF patients in the study, where 36% of them live with stage two (2) lymphoedema and could still take care of themselves.

Mobility of LF patients is also considered a key factor in assessing the patients’ physical capabilities as the various manifestations of the disease (ADL, hydrocele, lymphoedema, and elephantiasis). This situation has a cascading effect on the employment and income status of persons living with the condition [23, 24]. However, our study participants averagely had a mobility domain score of 68.86, which is comparatively higher to previous studies of 43.1 [20], 54.92 (baseline score) [19], and 52.32 [1]. As an earlier study have also detailed the mobility of LF patients by using a 10 m walking test (10mWT) and a timed ‘up and go’ (TUG) test revealed LF patients were slower than controls (10WT: cases = 0.828 m/s, controls = 1.104 m/s, TUG: cases =14.7 s, controls =11.2 s).

This study was conducted in rural areas along the western coast of Ghana, with a higher proportion of female participants. While this observation is not uncommon in LF endemic communities, care must be taken when the study’s findings are generalized to other LF endemic communities, particularly outside Ghana. A previous study has reported women or girls to be more prone to neglected tropical diseases (NTD), which may be due to higher poverty levels, higher illiteracy rates, and lower social status [8].

This study, carried in the LF hotspot communities in the Western Region of Ghana, shows a challenge in the quality of life of lymphatic filariasis patients due to the condition. Our findings also reveal financial and income difficulties among people suffering from LF, which eventually reduces their socio-economic well-being. We provide compelling evidence that there is a need for relevant governmental and non-governmental stakeholders, including the Ministry for Gender and Social Protection of Ghana, to integrate some social intervention programmes for people living with LF conditions in endemic regions to improve their well-being. We believe the study will inform policy about the management of LF in Ghana.