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Visceral leishmaniasis is a disease that persists in India despite WHO’s 2020 elimination target growing ever closer. The National Vector Borne Disease Control Programme also reported rise in PDKL cases. Therefore, PKDL cases should need to be given priority and it may pose an important challenge to VL elimination. Hence, it is timely for policy managers to revisit the strategies and adopt modification if required. We broadly examined the healthcare seeking behaviour of PKDL patients as well as treatment delays and its determinants in a low-resource setting with a high burden of VL. Much longer delay (median: 285 days) was observed for making disease confirmed as PKDL, which, indicates poor healthcare seeking behaviour of PKDL patients. Similar to our results longer patient delay was observed in other study on PKDL, conducted in Bangladesh. Longer delay was also reported in breast cancer and TB.
Much longer delay in making PKDL diagnosed is of great concern to VL elimination. Because delay in VL & PKDL diagnosis may increase infectivity, worsen the disease state, and enhance the risk of emerging new endemic foci. There are currently no accurate information/data on burden of PKDL is available and existing programme is not in position to either detect or managed PKDL cases at periphery level with the limited resources available to them. However, early diagnosis and prompt treatment remains essential components for effective VL elimination programme.
Apart from skin changes PKDL patients does not suffer from any illness or physical discomfort. They seek treatment only when the lesions intensified or patients are at marriageable age. Furthermore, despite of kala-azar in the past, they were not aware about the linkage between kala-azar and PKDL. Therefore, effective counselling to the patients or their family members during kala-azar episode is essential. Patients working as laborers or farmers reported longer delay in seeking treatment than the patients involved with other occupation (p<0.05). Similarly, Illiterate patients reported longer patient delay as compared to the educated patients (p<0.05). The possible reasons for that may be educated people are remain conscious about their health in contrast to illiterate people. Male patients found to have a longer delay than female patients. The possible reason may be due to the fact that females are more conscious about their personal appearance and beauty than males.
Significant difference in patient and health system delay was observed based on their choices of first health care provider. Patients who approached to the PHC had shortened the delay in seeking care. The possible explanation may be trained health workers available at the PHC. They suspect PKDL individual at the screening itself and therefore, refer the suspected individual immediately to the nearest available higher centre. Longer health system delay (median: 802 days) was also obtained in our study. A considerable number of patients in our study initially approached to quacks, homeopathic and ayurvedic practitioners which could possibly lead to system delay. It has also been found that longer the distance from PHC, may possibly enhance the delay in seeking treatment.
However, those who approached PHC early found to shorten the delay in seeking care. Patients with monomorphic skin lesions showed more delay, when compared to polymorphic skin lesions in seeking care. Patients with polymorphic lesions experienced more visual disfigurement or deformities than monomorphic lesions. This may be a reason for the long delay in patients with monomorphic lesions. Furthermore, lesions initially appears as a single or few purely macular and remain localized which gradually progresses to more severe polymorphic form and spreads on whole body. Patients often confused it with pityriasis and neglect it.
Longer delay recorded under the present study may be due to poor KAP status of PKDL patients. Majority of the patients had poor knowledge about the disease. Majority (68.3%) of the patients did not heard of PKDL. A study conducted in Bangladesh where 93% patients were not aware of PKDL. However, a considerable number of patients (72.5%) in our study heard of kala-azar. This value is higher than the study conducted on CL in South Ethiopia (67.6%)but, lower than the study conducted on VL in north west Ethiopia (87.6%). When the respondents were asked about the vector of the disease only 32.5% patients correctly replied. This value is lesser than the study in south Ethiopia 49% but higher than a study conducted on CL in Pakistan 27.6%. Regarding cure of the disease maximum number of respondents (78%) showed positive attitude. This might be due to almost all the patients approached to our hospital had been referred by dermatologist or PHC.
A study in Bangladesh only 21% PKDL patients had positive attitude towards the outcome of the disease. However, another study in Pakistan in CL 70.4% of the respondents had positive attitude towards the disease outcome. Around half of the respondents were not aware that insecticide such as DDT/synthetic pyrethroids spraying can also control sand flies. Hence, patients as well as their family need to be informed about it. Which may probably encourage other members of the community to have their home sprayed. A large proportion of patients (50%) had sleeping habit in outdoors, this is slightly higher than the study conducted in CL south Ethiopia where 40.8% respondents reported to sleep outside. Hence, they are susceptible to bite of sand flies and carries risk of the bite of sand flies. This may be due to rural residents, lack of electric supply in rural area and poor socio economic status of the patients.
The median score of stigma found was 11, which is concordant to the study conducted on leprosy in western Nepal, but lesser than the score obtained in onchocercal skin disease. There was a significant difference in stigma between single and married patients and among patients with different age group (p<0.05). Unmarried and younger age group patients were more stigmatized than the married and the older age group. The possible explanations may be younger age group perceive that the disease may cause problems to get married, they may also face challenge to participate in social events, opposite sex may think less of them and more conscious about higher self-esteem.
Patients with polymorphic skin lesions found under the study was more stigmatized than monomorphic lesions (p<0.05). The possible reasons may be the fact that polymorphic lesions are more awkward and look contagious to others. It may affect the self-esteem/self-image, aesthetic appearance of the affected individual. Patients who had lesions on exposed body parts had more stigma than on unexposed body parts, however, it was statistically insignificant. Median stigma score of women was 12, this value was slightly higher than men, and however, the difference was not statistically significant. Similar observation was also found in other neglected disease such as onchocercal skin disease.
This was a hospital based single centre study may limit the generalizability. We have assessed only perceived stigma while other two types of stigma was not assessed. Therefore, results of this study should be interpreted accordingly. Patient recall bias was the other limitation for this study. Due to the long delay in approaching to our centre, patients may face difficulty to recall things regarding the appearance of first PKDL symptoms or when did the patients first approached to the health care provider. Other limitations are that, we did not assessed the effect of knowledge and stigma on health seeking behaviour of the patients. These factors known to have association with the delay in seeking care.
Unacceptable high level of treatment delay has been observed. Our study revealed that a large proportion of patients have poor knowledge regarding the disease, vector and its transmission, which has effect on their attitude and practices. PKDL patients have also been stigmatized. Therefore, there is need to strengthen public awareness efforts against PKDL and related stigmatization with regard to Kala-Azar and PKDL infections. The free services for the diagnosis and treatment for VL and PKDL should be spread in the community. The study further provides the basis to National vector borne disease control program (NVBDCP) to think to educate the communities on clinical presentation, the need for early diagnosis, treatment adherence and curability of PKDL. Kala-azar elimination programs in India need to focus towards counselling of patients during VL episode.
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