Retention of the patients in HIV-care is critical for success of Anti Retroviral Treatment (ART) programme to reduce HIV-related morbidity & mortality and prevent emergence of drug resistance. In last decade in Delhi (April 2004 to March 2014), overall 24% HIV-positive patients were lost-to-follow-up (LTFU) at step-1 (testing to enrolment into HIV-care), 7.8% at step-2 (enrolment to ART eligibility), 23.7% at step-3 (eligibility to initiation of ART) and 16.6% at step-4 (initiation to lifelong ART) of retention cascade. About 2/3rd losses at step-4 were within 1st year and 80% within 2 years. The retention of the patients in pre-ART care was 3 times lower than those initiated ART. Only 27.4% patients were in active pre-ART care during 2013. The intensified LTFU tracking (ILT) undertaken during November, 2013 through March, 2014 was not successful in tracking 97% pre-ART LTFU clients due to incomplete addresses/or migration since address proof of patients on enrolment into HIV-care was not mandatory prior to 2009. Amongst patients tracked, 1.5% were alive, 0.24% had disengaged from care while 1.2% had died. After ILT overall “On ART” and “Pre-ART” LTFU rate in the last decade was 15.5% and 45.2%, respectively. The retention cascade of last year from April 2013 to March 2014 showed improvement through strategies adopted in Third Phase of National AIDS Control Programme (NACP-III; 2007-2013), and “On ART” and “Pre-ART” LTFU rates declined to 9.4% and 7.4%, respectively. However, desired at least 90% retention at various steps of the cascade could not be achieved. National Policy of delivering ART services through limited number of standalone ART centers in India, despite its significant success, has limitation of leaky treatment cascade and calls for policy makers to decentralize the programme by its appropriate integration with general health services and task shifting to improve continuum of care.
Retention of patients in HIV-care is vital for success of Anti Retroviral Treatment (ART) programme to reduce HIV-related morbidity & mortality and prevent emergence of drug resistance [
Delhi is a low HIV prevalence state of India with 0.3% prevalence in general population against national prevalence of 0.27%. Over the years, HIV prevalence has shown a steady decline in high risk groups (HRGs) and general population [
ART programme was rolled out in 2004 and rapidly scaled up by establishing 9 ART centers across Delhi. Access to HIV counseling and testing services was scaled up in NACP-III (2007-2013). Currently 89 standalone, 72 facility-integrated and 3 mobile Integrated Counseling & Testing Centres (ICTCs) are functional in Delhi. Five Community Care Centers (CCCs) were established for out-patients and in-patient care of PLHIV, drug adherence counseling, and tracking cases lost-to-follow-up (LTFU). Communities of PLHIV were mobilized to support PLHIV through advocacy to facilitate delivery of right based HIV-care and treatment. In April, 2013 CCCs run by NGOs were discontinued by NACO and replaced by 2 Community Support Centres (CSCs) and 5 PLHIV help desks to enhance community support in programme [
As per National Guidelines, HIV-positive patients with CD4-count ≤ 350 cells/cu.mm, patients in WHO clinical stage III/IV or with HIV-TB co-infection, are initiated lifelong ART [
Delhi has 5 CD4-testing sites for 9 ART centres. Only 4 CD4 sites are co-located with ART centres. In centers where there is no CD4 machine, a linkage has been established with a nearby CD4 site whereby blood samples are collected and transported by ART Lab Technician and patient does not have to go to another site to get CD4- test done.
Anti Retroviral (ARV) medicines and CD4-test kits are centrally procured by NACO and supplied to DSACS. ARV medicines are supplied by DSACS to the ART centres on the basis of quarterly consumption.
Once an ICTC attendee is detected HIV-positive, patient is referred after post-test counseling to nearest ART centre for registration in HIV-care. Proof of address of patient at time of ART registration was made mandatory in 2009. Each patient registered in HIV-care undergoes counseling, clinical examination and baseline investigations, including CD4-test. If the patient is eligible for ART [
ART centers maintain records of patients in pre-ART and ART enrollment registers. Master line lists are prepared by each ART centre in Computerized Management Information System (CMIS) Software. ART centres send monthly reports to DSACS electronically.
CMIS data of ART programme was analyzed for period from 1st April, 2004 through 31st March, 2014 for following indicators:
1) Cumulative number of ICTC clients detected HIV-positive;
2) Cumulative number of HIV-positive patients registered in HIV-care;
3) Out of 2) number of patients undergone CD4-test;
4) Out of 3) number of patients eligible for ART;
5) Out of 4) number of patients initiated ART;
6) Out of 5) number of patients alive on ART, or died, or transferred out, or LTFU, or opted out of the programme.
On directions of NACO, an Intensified LTFU Tracking (ILT) drive was rolled out in November, 2013 to retrieve patients LTFU from ART and Pre-ART care. ART centres were instructed to send master line-lists from Pre- ART and ART enrolments registers up-to 31st March, 2014 to DSACS. List for Pre-ART and “On ART” LTFU cases was prepared and shared with 4 District AIDS Prevention Control Units (DAPCUs) with instruction to pool-in ORWs from different components of HIV programme and divide and plot 9 districts among them evenly. Home visits by outreach teams were undertaken during November, 2013 through March, 2014. Outcome of Pre-ART and On ART LTFU cases was evaluated.
The term active pre-ART care was used for patients in pre-ART care who had undergone 6 monthly CD4- count in 2013. The term LTFU was used for patients with unknown outcomes while patients who ceased to engage in continuum of care because of their wishes/or beliefs were labeled as “disengaged from care”.
Decadal retention cascade of Delhi is presented in
LTFU at step-I (HIV testing to enrolment into care services), 3311 (7.8%) at step 2 (enrolment in care to ART eligibility), 7185 (23.7%) at step 3 (eligibility to initiation of ART) and 3845 (16.6%) at step 4 (initiation to lifelong ART) of cascade.
Amongst 19,462 patients in Pre-ART care, 7185 (37%) were eligible but not initiated ART, 8966 (46%) were not eligible for ART at time of registration in HIV-care while 3311 (16%) did not undergo CD4-count. However, only 5334 (27.4%) cases were in active pre-ART care in 2013. After excluding deaths, cases transferred out to other states or disengaged from care or in active pre-ART care, 8994 (46.2%) cases were recorded as LTFU. The yearly-trend of pre-ART LTFU is presented in
ILT was undertaken during Nov, 2013 through Jan, 2014 by home visits of 12839 LTFU patients. 198 (1.5%) patients were found alive, 159 (1.2%) had died, 31 (0.24%) had disengaged from care while outcome of 12,451 (97%) patients was unknown due to incomplete/incorrect addresses or migration. After ILT, overall “On ART” and “Pre-ART” LTFU rates of last decade were 15.5% and 45.2%, respectively and overall retention at 4 steps of the decadal cascade after excluding deaths, official transfer-outs, disengaged from care was 76%, 92.2%, 76.3% and 81.2%, respectively.
Duration of ART (months) | Number | % |
---|---|---|
0 to 0.5 | 399 | 10.4 |
1 | 486 | 12.6 |
2 | 353 | 9.2 |
3 to 6 | 800 | 20.8 |
7 to 12 | 551 | 14.3 |
13 to 24 | 503 | 13.1 |
25 to 36 | 276 | 7.2 |
37 to 48 | 189 | 4.9 |
49 to 60 | 81 | 2.1 |
61 to 72 | 81 | 2.1 |
73 to 84 | 63 | 1.6 |
85 to 96 | 42 | 1.1 |
97 to 108 | 21 | 0.6 |
NACO established 8 ART centres in various medical colleges/government hospitals of country including 2 in Delhi in 2004. The ART programme was scaled up during NACP-III by setting up 425 ART centres in country. About 1,758,748 patients were enrolled in HIV-care in last decade. However, only about 768,840 (62.5%), out of 1,230,144 patients ever initiated ART, are currently alive [
The UNAIDS has set new target named “90-90-90” to increase to 90% first, the proportion of people living with HIV who know their diagnosis, second, the proportion of people living with HIV receiving antiretroviral treatment, and third, the proportion of people on HIV treatment who have an undetectable viral load [
The retention of patients in pre-ART care was 3 times lower than those initiated ART. There is no published report on overall outcome of patients in pre-ART care for country because ART programme in India have traditionally focused more on patients remaining in care after initiation of ART than on earlier stages of care. In cohort study from Andhra Pradesh, attrition was higher in pre-ART stages than after ART initiation [
Several factors may be responsible for the attrition of patients at each level of retention cascade [
During NACP-III [
An important strategy to track patients in HIV-care is PLHIV Smart Card/unique identifier [
One reason for attrition of patients from HIV-care after initiation of treatment is transport cost and loss of income [
Reducing frequency of visits in stable patients may be another strategy to reduce burden of travel cost & income loss on patients and decongest HIV-care facilities. An innovative patient led strategy was piloted in Mozambique. Amongst group of 6 stable PLHIV only one individual was required to visit ART clinic every month to get medicines for self & others to reduce workload at health facility [
Point of Care (POC) CD4-testing may also help to reduce frequency of visits of the patients and enhance retention in HIV-care [
Devoting adequate time during pre-ART and follow up drug adherence counseling has a potential to improve retention of patients in HIV-care [
As per national guidelines ART can be initiated only at standalone ART centers which has following advantages: first; delivering services through skilled manpower, second; easy to monitor few centres, and third; adherence to treatment is monitored closely. However, infrastructure and manpower of ART centers, which was sufficient initially, is not currently so due to enrolment of new patients year by year. Further, limited numbers of service delivery points have potential for break in continuum of care due to travel distance, loss of income, and inadequate counseling due to overcrowding. Hence WHO strategy of decentralization and task shifting by integration of standalone ART services with primary level services, district level hospitals, antenatal care, MNCH, TB and harm reduction programmes need to be adapted to improve access to care locally by increasing entry points to HIV-care [
Considering huge losses in pre-ART care, WHO recommendations of initiating ART at CD4 threshold of 500 cells/cu.mm or less may facilitate retaining patients in HIV-care to save lives, improve clinical outcomes and reduce HIV incidence [
To conclude despite several measures taken in last decade of ART programme, retention of patients in HIV-care is still a challenge and suggests need to adopt strategies such as POC CD4-testing, PLHIV tracking through Smart Card/Unique ID, decreasing frequency of visits of stable patients, adopting new WHO strategy of initiating ART at CD4-count cut-off level of 500 cells/cum.mm to reduce number of patients in Pre-ART care, decentralizing standalone ART services by integrating HIV-care in primary care facilities, district level hospitals, antenatal clinics, and TB programme.