This research was conducted to study the extent and characteristics of LTFU in patients initiated on ART in Pakistan. The country’s treatment Program is predominantly based in public sector health facilities with only 03 out of the total 38 ART centres functioning in the private sector. Over the last 5 years a gradual increase in patients initiated on ART was seen from a cumulative 45% to 69% among those registered in the ART centres with a concomitant increase in the cumulative LTFU from 45% to 54% during the same period (5). The cumulative LTFU of the studied sample was 34.3% among the total initiated on ART in 16 ART centres located in 03 provinces and federal capital of the country. The high percentage (34.3%) of LTFU in the studied sample correlates with the national data (37.5%) and also with findings of a systemic review of the sub Saharan ART Program that reported a LTFU of 40% among PLHIV on ART (11,12). Rosen et al. also reported a progressive increase in LTFU over time in their studies conducted in sub Saharan countries (13,14).Studies conducted in Ethiopia in 2015 identified 14.8% of PLHIV on ART as LTFU and a systematic review of ART Programs in sub-Saharan African also revealed that the LTFU was very high (59%) among the PLHIV on ART (13,15). National evidence reveals that some of the factors contributing to LTFU include disease associated stigma and discrimination, attitude of healthcare staff, timings of healthcare facilities, catastrophic out of pocket health spending, and weak social support systems(16)
In our study we observed that young age and male gender are strong risk factors for LTFU in patients on ART. This finding has also been observed in other studies conducted in Guinea-Bissau, Ethiopia, Kenya, Nigeria and parts of West Africa (12,17–20). Pakistan has a male dominated society with strong socio-cultural norms. Men value their honour, strengthen and position in society immensely and therefore may intentionally be negligent of their treatment needs for fear of status disclosure and fall from grace. This trait has been echoed by Seifu et al. in their study (15).
Pakistan is in the concentrated phase of the HIV epidemic with a HIV prevalence of >5% in key populations. Findings of this study are suggestive of a significant relationship between PLHIV who belonged to key populations (PWIDs, TGs and sex workers) and LTFU as a treatment outcome. This finding is consistent with studies that have identified key populations as a risk factor to LTFU(21,22). The high proportion of LTFU in key population groups can be ascribed to weak linkages between the community organizations and treatment facilities, lack of family, community, and peer support, and fragile community monitoring systems. Our study has shown that among the key populations people who inject drugs are predominantly LTFU due to their chaotic behaviours, compromised mental state, and absence of family support. This finding has been supported by Mekonnen et al. in his study (17). The PLHIV tracking system in hospital settings is extremely fragile and lacking in treatment adherence support groups. Studies have supported the role of establishing community networks, strengthening community outreach mechanisms, promoting HIV literacy and benefits of treatment, peer support initiatives, supporting partner or treatment buddies, continuous counselling and introducing patient friendly institutional measures to increase treatment access and retention (23–25).
Our study findings reveal a significant association between LTFU and PLHIV with undisclosed identity. Pakistan is an Islamic country with conservative society and strong religious values. Due to the myths associated with HIV, the disease has been incriminated with socially inacceptable and religiously condemned behaviours. Therefore, a great majority of the key populations do not disclose their identity at the time of enrolment into the ART Program due to fear of hostility, discrimination, denial of health services, and fear of punitive measures. This finding has been substantiated in study conducted by Hunt et al in Zimbabwe and in a systemic review conducted by Shan et.al who reported fear of confidentiality breach and stigma to be the main reasons for concealing their identity from healthcare providers (26,27). The effects of undisclosed identity on treatment outcomes have been adverse in terms of delays in seeking health care, interrupted or and discontinuation of treatment as reported by supported by Duby et al. in their study (28).
Loss to follow-up and poor retention in treatment Programs are broadly influenced by internal, interpersonal and structural barriers. Regional studies have attributed inherent factors as behaviour (drug use, sex work), gender identity/sex orientation (transgenders and men who have sex with men) and disease associated stigma and discrimination, socio-economic factors, lack of legal protection, chaotic and migratory lifestyles, fear of criminalization and exploitation to the high rates of LTFU among the key populations (21). The stigmatized attitude of healthcare providers towards key populations and HIV patients has been one of the hurdles in providing them with HIV prevention, treatment, care and support services that can be attributed to their fear of HIV due to limited knowledge as well as their denouncement of key population behaviours (29–31). Structural barriers such as distance of ART centres, cost of travel, intricacies within the health delivery system such as multiple stations for testing, treatment and follow-up as well as hospital timings also contribute to high rates of LTFU(11,23,25).
The current study has revealed that majority of the PLHIV loss to follow up belonged to the Province of Sindh. As per AEM estimates Sindh constitutes 43% of the country’s PLHIV burden, with high HIV prevalence in key populations in major cities of the province (3,32). There were 10 ART centres in the province at the time of the study and constituted 60.5% of the total study case-based dataset (5). A study conducted in Karachi by Samo RN and colleagues is in agreement with our study findings regarding geographical and epidemiological profile of Sindh (33).
Another significant finding of the study was the early LTFU after initiation of ART that is indicative of lack of effective engagement with the PLHIV to promote ART uptake and support treatment adherence. Effective counselling and sustained contact with PLHIV play an important role in the retention of PLHIV in the HIV treatment and prevention cascade. Due to the multiple socio-economic, cultural and health determinants influencing HIV treatment uptake and adherence counselling and psycho-social support are fundamental to combatting LTFU among PLHIV on treatment. Findings of global and regional studies are strongly correlate the link between counselling, psycho-social support and favourable HIV treatment outcomes (24,34). In the past year the country has introduced some interventions such as appointment of case managers at ART centres for patient tracking, providing nutrition support in the form of food packages to PLHIV-LTFU to re-engage them, developing linkages with key population CBOs and community organizations for patient tracking patients lost to follow up and introducing an alert system in the NACP-MIS to remind the healthcare providers of patients appointments. Studies are needed to evaluate the impact of these interventions.
Strength and Limitations
The strength of this research is that national level data case-based data set was analysed for a period of two years was analysed to know the socio-demographic characteristics and risk factors for LTFU in the Pakistan. The study also had some limitations as case-based data from Punjab (province with the highest PLHIV burden) was not available. The population categorization in terms of typology was another serious limitation as PLHIV who were members of key population groups and those who belonged to the general population, spouse, client or non-key population partner could not be separated and were categorized as PLHIV with undisclosed identity or others. This may have led to overestimation of LTFU in a population group that is in contrast to epidemiological landscape of the country and may have had a confounding effect on the study findings. The time period of the study was limited due to ambiguities in the data in the previous years and element of over or under reporting of PLHIV treatment status may exist. Another limitation missing information with regards to age of the PLHIV that could have again led to over or under estimation of LTFU in the studied population.