LF is a debilitating disease that is most responsible for permanent disfigurement in the afflicted, making it the second-most common cause of long-term disability worldwide [6]. Patients repeatedly suffer in agony due to symptoms that vary with temperature and humidity [7]. A study in Ghana showed that the majority of the symptoms occurred in the rainy season, as the maximum infection of filariasis happens in the period of minimum vector density due to flushing of the breeding places, whereas the attacks are less prevalent in the dry season [8]. Similarly, in the North Indian and East Indian states, several factors increase the probability of filarial transmission in the summer. Tropical climate, poorly maintained drainage, and increased vector-human contact attributed to using fewer clothes and sleeping in open or outside the room at night are responsible [9]. Only two of our respondents suffered in the winter, compared to five in the summer. But a study done in Tamil Nadu, South India, has shown no significant variation between the summer and winter seasons [10]. The survival of the vector Culex quinquefasciatus was less in the summer, and infective stage larvae were not encountered until the early monsoon. The parous mosquitoes have been recorded highest in the winter months (November-March) in this part of India, leading to maximum transmission that declined with a rise in temperature [11]. Geographical differences seem to be playing an important role; however, our respondents showed mixed variation. The best way to prevent LF is to avoid mosquito bites, followed by the biannual MDA program, while the WaSH strategy has been increasingly recognized as crucially important in the prevention of morbidity and disability for filariasis-related lymphedema [5, 12].

In our study, the respondents had low awareness regarding treatment and prevention of the disease, resulting in low MDA adherence. In an endemic town in Nigeria, 85% did not know about MDA, and 36% did not know its role in preventing LF [13]. Joseph et al. conducted a study among health workers in Karnataka, India, where they found poor awareness scores in 37.2%, average in 57.7%, and good scores in only 5.1% of participants [14]. The patients might fear its side effects, remain absent during the time of distribution, not consume the drug as they forget or misplace it, or suffer from a concurrent illness [15]. They also feel mounting hopelessness that lymphedema is incurable, so there is no use in diligently following management practices once they contract filariasis. However, increased community participation in WaSH needs to gain traction. Patricia Maritim et al. have concluded that adherence and health-seeking behaviour were even driven by negative beliefs and myths about the disease and a lack of awareness about available homecare morbidity kits and WaSH facilities [16]. WaSH programmes can also help reduce the breeding grounds for the mosquito vectors that breed in the open sewers [17]. In a study by Mues et al. in Odisha in 2014, overall compliance with lymphedema management techniques due to a community-based management programme was negatively associated with difficulty accessing water and soap, emphasizing that lymphedema management is incomplete without WaSH facilities [18]. In Nepal, even though patients suffering from lymphedema had home-based care as their first treatment, their first point of contact were the traditional healers, only later seeking Ayurvedic or modern hospital-based treatments during complications [19]. Even unfavourable interactions between the provider and the client reduce acceptability. The low health-seeking behaviour among the patients for modern medicine found in this study has been attributed to low trust in government facilities, leading to failure in cure and mounting hopelessness. Sometimes, misconceptions and rumours can spread like wildfire, obstructing the programme and community participation [20].

The other problems in the study were that patients and caregivers were unable to work productively, leading to loss of earnings from reduced work hours, catastrophic and inappropriate health costs leading to debt, not being able to pay for the schooling of children in the family, and an overall reduced societal role. The younger the cohort, the greater the economic losses that accumulate over their years of productivity [17]. This is because patients whose lymph vessels are already damaged experience lymphedema and ADLA episodes for the rest of their lives. They also undergo increased travel costs, coupled with lost productivity in both paid and unpaid labour [21]. All these surely affect their mental health as well, as evidenced by filariasis being related to depression and other psychosocial difficulties [22]. The social stigma of lymphedema can cause barriers both to adherence and health-seeking behaviour, as seen in several studies [5], though this study did not find any such complaints.

The filariasis elimination programme had faced severe implementation challenges for years. The innovative efficiency was initially slow, and the disease impact on endemic regions was rarely focused on. Thus, the WHO expanded its technical support to address these issues from 2017 until 2019. Microplanning and social mobilization might have improved in the case of MDA dispensing, but training about home-based care was still lacking. The two healthcare workers in our study had attended only refresher meetings held on annual surveys or before the distribution of MDA. There was no formal training on how to manage lymphedema. It seems the state health authorities have put more importance on the transmission of microfilariae but side-lined how to improve the quality of life in patients with severely affected lymphatics and cutaneous inflammation. Once established, the disease is irreversible even after treatment or spontaneous death of the microfilariae, which promotes insidious progression [23]. Initial ADLA attacks due to bacterial proliferation worsen the lymphedema, leading to elephantiasis. This creates a vicious cycle favouring more such attacks due to a lack of local hygiene [24]. Implementation at the administrative level is only strengthening the MDA administration and not the second pillar of the elimination strategy, which is managing the morbidity [25].

Many studies have elaborated on the physical, social, psychological, sexual, and economic problems not only caused by the deformities but also by the acute febrile episodes [26–28]. Even then, the administration had to face several problems. During the rollout of IDA round-1 in Bihar in 2019–2020, there was a local strike by ASHAs at booths established in Anganwadi centres and schools. Only 58–61% of the total population had consumed the triple drug regimen, which was soon interrupted when Anganwadi workers also joined the strike [29]. During the study period, there were subsequent strikes occurring at the BPHC due to the non-payment of any incentives by the government over a prolonged period. This demotivated the grassroots healthcare workers, who were already burdened with mobilization and drug distribution under different community health programs. Hydrocelectomy surgery is not conducted at the BPHC, which forced one patient to a private clinic, resulting in catastrophic expenditure. There, only MMDP kits were distributed every Monday, with no training on how to use them to prevent ADLA. Lessons can be learned from Kerala State regarding this. The State Health Administration of Kerala conducted intensive training sessions for doctors and staff nurses from each Taluk hospital to provide care for lymphedema patients. They were given training in MMDP, including information, hands-on demonstrations, and specific lymphedema care plans. This increased the registration of previously unidentified lymphedema patients. Undertaking a policy decision to achieve elimination with MMDP in addition to MDA is the key component of that strategy, which should be the goal for endemic districts in all of India [3].