Financial burden impact quality of life among Filarial Pathology Patients

Background Human lymphatic larial pathology is the main cause of disability and poverty among people living with the infection. The second goal of the Global Programme to Eliminate Lymphatic Filariasis (GPELF) is to manage the morbidity associated with the disease with the purpose of improving the quality of life of the patients. Consequently, the current study assessed the overall quality of life of lymphatic lariasis (LF) pathology patients in some selected endemic communities in rural Ghana. Method In the present study, the Lymphatic Filariasis Quality of Life Questionnaire (LFSQQ) was used to evaluate the effect of lymphatic lariasis on the quality of life of people, with the disease in nine (9) communities in the Ahanta West District of the Western Region of Ghana where mass drug administration is being implemented for the past twenty years. Pearson’s correlation, linear regression and one-way analysis of variance (ANOVA) analyses were used to assess the associations between the domains of LFSQQ instrument. Results Of the 155 study participants recruited, 115 (74.19%) were females and 40 (25.81%) males. A greater proportion of the study participants (40, 25.8%) were presented with stage two (2) lymphedema while only 2 patients had stage seven (7) lymphedema. The average of the overall quality of life scores of study participants was 68.24. There was a negative Pearson correlation (r = -0.504, p-value < 0.001) between the stage of lymphedema (severity of the disease) and the quality of life of the LF patients. In addition, a clear pattern of positive correlation (r = 0.71, p-value < 0.001) was observed between the disease burden and pain/discomfort domains of the study participants. Whereas the highest domain specic score (85.03) was observed in the domain of self-care, we noted that the environmental domain, which consists of the nancial status was the lowest (45.94) among the study participants. Conclusion ndings on the reduced quality of life among lymphatic lariasis patients with study, our results reveal a depressing nancial condition among people presenting with late stages of LF pathologies, which eventually reduces their wellbeing.


Introduction
Lymphatic lariasis (LF) is an infection which directly impairs the lymphatics and consequently 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 larial worms) 2 to uninfected persons. The disease is endemic in 83 countries with majority of the cases reported in India, one third in Africa and the remaining cases in the Paci c, the Americas, South-East Asia and the Eastern Mediterranean regions 3 . In Ghana, bancroftian lariasis has been noted to be distributed in the northern guinea savannah and the southern coastal regions with a varied micro laraemia prevalence of 0-20% as surveyed in 1994 4 . LF has varied form of manifestations such as hydrocele, lymphedema 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 more than 10 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 come in contact with infected children than their male counterparts and thus are higher risks of infecting themselves 8 . Individuals suffering from lymphatic lariasis experience repeated larial attacks known as adenolymphangitis (ADL), which hinders patients from actively participating in both social and economic activities [9][10][11] . Krishna et al 2005, identi ed ADL as the primary cause of disabilities among LF patients 12  Nonetheless, the second component of LF elimination programme of forestalling and managing both acute and chronic disability among those already affected by disease have 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 de ned 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, it is in this perspective that WHO de nes health as being "not only the absence of disease and in rmity but also the complete state of physical, mental, and social well-being" 14 .
In order to ensure a better health-related quality of life of LF patients, the Morbidity Management and Disability Prevention (MMDP) of 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 lymphedema 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 degree of morbidities to alleviate pain and prevent disease deterioration 16 . Thus, the purpose of this study was to assess the Quality of life of lymphatic lariasis patients in some selected LF hotspot communities in Ghana.

Study area
The study was carried out in the Ahanta West District of Western Ghana in nine (9) communities i.e. Akatakyi, Princess Town, Cape Three Points, Asemkow, Dixcove, Ampatano, Butre, Achowa and Busua.
The District is dotted with lush green hills and fertile soil with relative humidity as high as 85% in the rainy season and a little decline in humidity during the dry season. A bulk of the labour force in these villages is into activities such as shing and farming. The study communities are lymphatic lariasis hotspots with W. bancrofti being the main causative organism and a micro lariae prevalence of about 20% 17 .

Study Design
A cross-sectional study was conducted between March 2019 and August 2019. Individuals clinically diagnosed with lymphatic larial pathology (lymphedema and/or hydrocele) were recruited for the study.
In addition, the study participants were 18 years and above and willingly consented to the study. However, individuals presenting with any form swelling or edema other than larial-related were excluded from the study. Experienced research scientists performed the leg staging of the study participants. The WHO seven-stage system for grading of lymphedema was used as the standard for grading legs of the patients as previously described in 9 . The Committee of Human Research and Publications and Ethics, School of Medical Sciences and Dentistry, Kwame Nkrumah University of Science and Technology provided ethical clearance for this study.

Study Instrument
To assess the quality of life of the LF study participants, the Lymphatic Filariasis Quality of Life Questionnaires (LFSQQ) was used as described by Thomas, et al., (2014) 18 . The LFSQQ was administered to the study participants in their local dialects (Fante and Nzema). The instrument measured the health-related quality of LF patients through a seven-domain system: mobility, self-care, daily/usual activities, disease burden, pain/discomfort, psychological health and social participation.
However, for the purpose of this study, energy/fatigue, environment (which entails nancial support from people in the community and safety in the neighborhood) and social relationship domains were included due to the extended family system which exist in most Ghanaian communities. Each item was scored on a 5-point scale (no problem, mild, moderate, severe, most severe). The total score was calculated based on the number of questions answered and the raw scores. Scores range from 0 to 100 with a higher score indicating a better quality of life.

Statistical Analyses
Data were analyzed using the Epi-Info. To do this, the overall quality of life (QoL) response was calculated using the formula as described by Aggithaya, M.G et al., 2013.
To determine the relationship between the LFSQQ domains of the study instruments, the Pearson Correlation analysis was performed. After that, linear regression analysis was done to examine the association between disease burden and the pain/discomfort domains. A one-way analysis of variance (ANOVA) was used to determine whether there was any statistical difference in the disease burden domain, psychological domain and environment domain. The proportion of the domain scores of study participants are given in percentages and mean. Any result with a p-value less than 0.05 was considered statistically signi cant.

Demography of Study Participants
Taken together, 155 study participants were recruited. Three-quarters (115, 74.19%) of the study participants were females and the remaining (40, 25.81%) males. The mean age of the study participants was 52.84 (SD= 15.62) with the age range of (18-86). Majority of the study subjects (97, 62.58%) were involved in agrarian and/or shing activities while occupations such as service workers, sales workers and professional related workers (5, 3.23%; 12, 7.74%; 2, 1.29%), respectively, was less common among the LF cohorts. Thirty-nine (39) of LF subjects representing 25.16% were unemployed as Table 1. A greater number of the LF patients (84, 54.19%) in this study had stage 2 lymphedema (swelling not reversible overnight). The patients with stage 1 and stage 3 were 17 (10.98%) and 28 (18.06%), respectively. Two (2) of the study participants with stage 7 were incapacitated and could not care for themselves whereas the remaining were with other stages as shown in Table 2.  Figure 1).
In addition, over 80% of the study participants responded to not having "no problem with their ability to take care of themselves" (self-care) whereas over 50% of LF patients complained of severe to most severe effects of the disease on their work and also loss of strength or fatigue. In the Mobility domain, the study participants had severe problems when they sat and got out of a chair or standing for a long time.
With regard to their daily activities, majority of LF patients (74%) did not have any challenge with cooking or cleaning the oors but they had di culties in carrying out activities such as shing or farming. Moreover, from the responses on the Social relationship domain, averagely 58% do not have any issue interacting with people, identifying a potential spouse or having the disease affecting their relationships with their family members or neighbors. The response on the Environment domain showed that 67% of respondents indicated little or no nancial assistance when asked "how often do they get nancial assistance from their relations due to their conditions"?

Quality of life Score of LFSQQ Domains in the Community Level
The nine (9) communities where the study was conducted had varied number of LF patients as shown in Table 1. To determine the overall quality score in the various LF endemic communities, a bar graph of the overall quality score among the communities was done as demonstrated in the gure 2. The graph showed marginal changes in the overall quality of life scores of LF patients residing in the communities. However, Achowa community which had only four (4) LF patients were excluded from the analysis in order to give a more representative data. Moreover, considering that the Disease Burden Domain (DBD), Psychological Domain (PD) and Environment Domain (ED) were the lowest domains in the LFSQQ, a community-level distribution of these domains scores i.e. DBD, PD and ED were analyzed. As shown in ( gure 3) there was generally a higher score in the DBD within the range 76-80 except for Dixcove where the DBD score of 66. A similar trend is also observed in ED and PD with the ranges of 41-53 and 56-63 respectively. However, to determine whether there was any statistical difference among the DBD, PD and ED in the communities, a one-way analysis of variance (ANOVA) was conducted, which showed statistical difference in these domains in the community (F (2,24) = 73.06, p-value < 0.001) as shown in Table 3. In addition, the overall quality score in the female and male was 68.42 and 67.61, respectively.

Correlation of LF Responses on LFSSQ Domains
To determine the relationship among the various LFSSQ domains, we performed Pearson's correlation as illustrated in Table 4. The domains of pain/discomfort and disease burden were positively correlated with a Pearson's correlation coe cient of r=0.71 and a p-value <0.001 as depicted in Figure 4. A number of the domains were moderately correlated with Pearson's correlation coe cient (r) ranging from 0.60 -0.66. The weakest correlation coe cient was observed between the domains of environment and pain/discomfort. Moreover, the linear regression model for the stage of LF (severity of the disease) and the overall quality of life score showed a negative regression with a Pearson's correlation coe cient (r= -0.504) and p-value < 0.001 ( Figure 5).

Discussion
This is the rst study to determine the general quality of life of lymphatic lariasis 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 Moreover, more than half of our LF participants responded that they had no nancial 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 lariasis 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 nding corroborates other result 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 sh mongering and petty trading. The situation is further complicated as the LF usually affects poorer communities 12,20 where most LF patients' mainstay nancial 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 . It is worth noting from our results 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 individual 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 as it tends not to show any wide 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 the impact of LF disease which makes them to depend on For further analysis on how the disease impact the physical abilities of the LF participants, we used the mobility, daily activities, pain/discomfort and self-care domains in assessing this as used elsewhere 12  Mobility of LF patients is also considered a key factor in assessing the physical capabilities of the patients as the various manifestations of the disease (ADL, hydrocele, lymphedema and elephantiasis). This situation has a cascading effects on the employment and income status of persons living with the condition 23,24 . Our study participants, however, averagely had 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 . Nevertheless, this nding does not undermine the nding that 77% of the respondents had some form of di culty in sitting and getting out of a chair or a challenge in walking a long distance. 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 =14.7s, controls =11.2s).

Conclusion
This study, carried in the LF hotspot communities in the Western Region of Ghana, shows a challenge in the quality of life of lymphatic lariasis patients as the result of the condition. Our ndings also reveal nancial and income di culties among people suffering from LF, which eventually reduces their socioeconomic wellbeing. We provide compelling evidence that there is the need for relevant governmental and non-governmental stakeholders, including the Ministry for Gender and Social Protection of Ghana, to integrate some social intervention programs for people living with LF conditions in endemic regions to improve their wellbeing. We believe the study will inform policy about the management LF in Ghana.