Effect of public-private interface agency in Patna and Mumbai, India: Does it alter durations and delays in care seeking for drug-sensitive pulmonary tuberculosis?

Background: Public-private interface agency (PPIA) intervention models in Patna (E. India) and Mumbai (W. India) for pulmonary drug-sensitive (DS) tuberculosis (TB) patients were evaluated over 2 years after maturity to examine effect on reduction of patient pathways and retention.  The models engaged private providers, diagnostic facilities and pharmacies into an effective network providing free diagnostic tests and treatment. Methods: A population-based retrospective study was undertaken to assess effectiveness of the PPIA model in care pathways of 64 (Patna) and 86 (Mumbai) patients through in-depth interviews conducted within 6 months of initiation treatments to identify types and facilities accessed, duration to diagnosis and treatment. Median durations based on facilities accessed were statistically analysed.  Comparisons were made with baseline values and endline pathways of patients accessing PPIA engaged/non-engaged facilities in private and public sectors. Results: Compared to non-engaged facilities, persons accessing engaged facilities at first point-of-care had shorter pathways (Mumbai: 32 vs 43 days), (Patna: 15 vs 40 days).  Duration for first care-seeking was considerably shorter for patients accessing PPIA in Patna and for both engaged and non-engaged private facilities in Mumbai (4 days).  Whilst PPIA engaged facilities diagnosed more cases than others, the RNTCP in Mumbai provided diagnosis early.  There was good retention of patients by PPIA-engaged (1 st) facilities (90% post-diagnosis in Patna) but this was affected by the hub-spoke referral system in Mumbai (13%). Second diagnosis is a common feature in Mumbai.  The spoke-hub model in Mumbai contributed considerably to treatment delay; PPIA-engaged providers were better at retaining patients post treatment initiation 11/25 (44%). Conclusion: PPIA-engaged facilities, accessed at onset, result in marked reduction in pathway durations.  Such initiatives should engage a critical mass of competent providers, proximal investigation facilities with enhanced disease awareness and literacy efforts amongst communities.  Patient movement should be minimized for early treatment and retention.

Such a long journey: What health seeking pathways of patients with drug resistant tuberculosis in Mumbai tell us.

INTRODUCTION: The Indian Tuberculosis (TB) Programme currently faces the dual challenges of tackling increasing numbers of drug resistant (DR) TB cases and regulating practices of a pluralistic private sector catering to TB patients. A study of health seeking behaviour of DR-TB patients in such a situation, offers an opportunity to understand the problems patients face while interacting with health systems. METHODOLOGY: Forty-six DR-TB patients drawn from 15 high TB burden wards in Mumbai were interviewed using an open ended interview tool. Interviews were audio recorded and transcribed. Pathway schematics developed from analysis of patient records, were linked to transcripts. Open coding was used to analyse these units and themes were derived after collating the codes. RESULTS AND DISCUSSION: The paper presents themes interwoven with narratives in the discussions. These include awareness-action gap among patients, role of neighbourhood providers, responsiveness of health systems, the not-such a 'merry go round' that patients go/are made to go on while seeking care, costs of diagnostics and treatment, and how DR-TB is viewed as the 'big TB'. CONCLUSION: The recommendations are based on a preventative ethos which is sustainable, compared to interventions with top-down approaches, which get piloted, but fail to sustain impact when scaled up.

Pathway to care for drug resistant tuberculosis cases identified during a retrospective study conducted in high TB burden wards in Mumbai.

Background: Mumbai is witnessing a rising incidence of all forms of drug resistant tuberculosis (DR-TB). Methods: A population-based, retrospective study was conducted between April and July 2014, in 15 high TB burden wards in Mumbai, to capture the patient pathways to TB care. A total of 23 DR-TB patients were identified and their pathways to access DR-TB care were recorded using semi-structured interviews. Results: The total DR-TB pathway time of new patients (who did not report any past episode of TB) (180 days; IQR 123,346) was found to be more than twice that of retreatment patients (who reported a past episode of TB) (69 days; IQR 42,128). Conclusions: The unacceptable delay for diagnosis and treatment of DR-TB in Mumbai advocates for consistent implementation of early screening of patients using rapid gene-based technologies.

Pulmonary tuberculosis in Patna, India: Durations, delays, and health care seeking behaviour among patients identified through household surveys.

BACKGROUND: Delays in accessing effective health care plays a pivotal role in increasing Tuberculosis (TB) transmission within the community. Patna, North India, with high levels of poverty and weak public health system, faces huge challenges for achieving effective TB control. The study aims to determine delays that occur from onset of TB symptoms until initiation of pulmonary TB (PTB) treatment among patients in Patna. METHODS: Of the 109 self-reporting TB patients identified through an active household survey, 64 PTB patients were interviewed. First care seeking, TB diagnostic and treatment initiation durations were calculated and delays defined for new and retreatment patients and minors and adults. Outliers exhibiting extreme delays were additionally identified. RESULTS: A cross sMean total pathway duration for TB care was 40days, with diagnostic duration contributing to 58% of the duration. No significant differences were noted between new and retreatment patients. Minors, comprising of 30% of total PTB patients accessed care faster than adults, but showed significantly higher diagnostic duration (38days vs. 17days). Preference for private sector, chemists and allopaths was seen throughout the pathway. DISCUSSION: Patna requires a more effective harnessing of the private sector augmented with reliable diagnostic investigations and a focus on quality.

Correction: Durations and Delays in Care Seeking, Diagnosis and Treatment Initiation in Uncomplicated Pulmonary Tuberculosis Patients in Mumbai, India.

[This corrects the article DOI: 10.1371/journal.pone.0152287.].

Durations and Delays in Care Seeking, Diagnosis and Treatment Initiation in Uncomplicated Pulmonary Tuberculosis Patients in Mumbai, India.

BACKGROUND: Timely diagnosis and treatment initiation are critical to reduce the chain of transmission of Tuberculosis (TB) in places like Mumbai, where almost 60% of the inhabitants reside in overcrowded slums. This study documents the pathway from the onset of symptoms suggestive of TB to initiation of TB treatment and examines factors responsible for delay among uncomplicated pulmonary TB patients in Mumbai. METHODS: A population-based retrospective survey was conducted in the slums of 15 high TB burden administrative wards to identify 153 self-reported TB patients. Subsequently in-depth interviews of 76 consenting patients that fit the inclusion criteria were undertaken using an open-ended interview schedule. Mean total, first care seeking, diagnosis and treatment initiation duration and delays were computed for new and retreatment patients. Patients showing defined delays were divided into outliers and non-outliers for all three delays using the median values. RESULTS: The mean duration for the total pathway was 65 days with 29% of patients being outliers. Importantly the mean duration of first care seeking was similar in new (24 days) and retreatment patients (25 days). Diagnostic duration contributed to 55% of the total pathway largely in new patients. Treatment initiation was noted to be the least among the three durations with mean duration in retreatment patients twice that of new patients. Significantly more female patients experienced diagnostic delay. Major shift of patients from the private to public sector and non-allopaths to allopaths was observed, particularly for treatment initiation. CONCLUSION: Achieving positive behavioural changes in providers (especially non-allopaths) and patients needs to be considered in TB control strategies. Specific attention is required in counselling of TB patients so that timely care seeking is effected at the time of relapse. Prioritizing improvement of environmental health in vulnerable locations and provision of point of care diagnostics would be singularly effective in curbing pathway delays.

Balancing authority, deference and trust across the public-private divide in health care: tuberculosis health visitors in western Maharashtra, India.

While concepts such as 'partnership' are central to the terminology of private-public mix (PPM), little attention has been paid to how social relations are negotiated among the diverse actors responsible for implementing these inter-sectoral arrangements. India's Revised National Tuberculosis Control Programme (RNTCP) has used intermediary agents to facilitate the involvement of private providers in the expansion of Directly Observed Therapy, Short-Course (DOTS). We examine the roles of tuberculosis health visitors (TB HVs) in mediating working relationships among private providers, programme staff and patients that underpin a PPM-DOTS launched by the RNTCP in western Maharashtra. In addition to observations and informal interactions with the programme and participating health providers, researchers conducted in-depth interviews with senior programme officers and eight TB HVs. Framed by a political discourse of clinical governance, working relationships within the PPM are structured by the pluralistic context, social and professional hierarchies and paternalism of health care in India. TB HVs are at the nexus of these relationships, yet remain undervalued partly because accountability is measured through technical rather than social outcomes of the 'partnership'. Close attention to the dynamics of power relations in working practices within the health system can improve accountability and sustainability of partnerships.

'I cry every day': experiences of patients co-infected with HIV and multidrug-resistant tuberculosis.

OBJECTIVES: To understand patients' challenges in adhering to treatment for MDR-TB/HIV co-infection within the context of their life circumstances and access to care and support. METHODS: Qualitative study using in-depth interviews with 12 HIV/MDR-TB co-infected patients followed in a Médecins Sans Frontières (MSF) clinic in Mumbai, India, five lay caregivers and ten health professionals. The data were thematically analysed along three dimensions of patients' experience of being and staying on treatment: physiological, psycho-social and structural. RESULTS: By the time patients and their families initiate treatment for co-infection, their financial and emotional resources were often depleted. Side effects of the drugs were reported to be severe and debilitating, and patients expressed the burden of care and stigma on the social and financial viability of the household. Family caregivers were crucial to maintaining the mental and physical health of patients, but reported high levels of fatigue and stress. Médecins Sans Frontières providers recognised that the barriers to patient adherence were fundamentally social, rather than medical, yet were limited in their ability to support patients and their families. CONCLUSIONS: The treatment of MDR-TB among HIV-infected patients on antiretroviral therapy is hugely demanding for patients, caregivers and families. Current treatment regimens and case-holding strategies are resource intensive and require high levels of support from family and lay caregivers to encourage patient adherence and retention in care.

Caring for caregivers of people living with HIV in the family: a response to the HIV pandemic from two urban slum communities in Pune, India.

INTRODUCTION: In low resource settings, the vast majority of 'Person/people Living with HIV' (PLHIV/s) and inadequate healthcare delivery systems to meet their treatment and care needs, caregivers play a vital role. Home based caregivers are often unrecognized with limited AIDS policies and programs focusing on them. We explored the perceptions and norms regarding care being provided by family caregivers of PLHIVs in India. METHODOLOGY: A community based qualitative study to understand the issues pertaining to home based care for PLHIV was conducted in urban settings of Pune city, in Maharashtra, India. Eight Focus Group Discussions (FGDs) among men, women and peer educators were carried out. A total of 44 in-depth Interviews (IDIs) with PLHIVs (20) and their caregivers (24), were conducted using separate guides respectively. Data was analyzed thematically. RESULTS: Home based care was perceived as economically viable option available for PLHIVs. 'Care' comprised of emotional, adherence, nursing and financial support to PLHIV. Home based care was preferred over hospital based care as it ensured confidentiality and patient care without hampering routine work at home. Women emerged as more vital primary caregivers compared to men. Home based care for men was almost unconditional while women had no such support. The natal family of women also abandoned. Their marital families seemed to provide support. Caregivers voiced the need for respite care and training. DISCUSSION: Gender related stigma and discrimination existed irrespective of women being the primary family caregivers. The support from marital families indicates a need to explore care and support issues at natal and marital homes of the women living with HIV respectively. Home based care training and respite care for the caregivers is recommended. Gender sensitive interventions addressing gender inequity and HIV related stigma should be modeled while designing interventions for PLHIVs and their family caregivers.

Perceptions, health seeking behaviour and access to diagnosis and treatment initiation among previously undetected leprosy cases in rural Maharashtra, India.

OBJECTIVES: To study sociodemographic profiles, perceptions about leprosy and health seeking patterns among adult leprosy patients and parents of children with leprosy detected through a prevalence survey conducted earlier, in rural areas of Panvel tehsil in Maharashtra. METHODS: The study was cross-sectional and used mixed (qualitative and quantitative) methods. Of the 97 confirmed rural leprosy cases who had been detected through the initial prevalence survey, 58 newly detected adult leprosy cases and parents of 22 children detected with leprosy were interviewed with a semistructured interview schedule between May 2008 and March 2009. FINDINGS: The study revealed that most of the leprosy patients belonged to the poor socioeconomic strata. Nearly 58% of the adult patients reported that they had been detected through the survey within 3 months of noticing their symptom(s) for the first time. Despite having been diagnosed and receiving treatment, only 48% of adult cases knew their condition as leprosy, reflecting their poor knowledge of the disease and lack of communication between providers and patients. The symptom 'patch on the skin' seems to have percolated in the community. Despite approaching the private or public sector for help in the first instance, many patients and children remained undiagnosed and untreated for leprosy. CONCLUSION: Active surveys for leprosy case detection should substitute the self-reporting approach until IEC measures are sufficiently effective to achieve a significant impact on transmission. Nevertheless both approaches will need the presence of staff with active diagnostic skills and optimal drug availability at PHCs.

Sustaining PPM-DOTS: the case of Pimpri Chinchwad, Maharashtra, India.

BACKGROUND: Globally, Public-Private Mix (PPM) models of service delivery are recommended as a strategy for improving tuberculosis (TB) control. Several models of PPM-DOTS have been initiated under the Revised National TB Control Programme (RNTCP) in India, but scaling up and sustaining successful projects has remained a challenge. AIM: This paper examines factors accounting for the sustainability of a PPM-DOTS initiated in 1998 in Pimpri Chinchwad (PC), a city in Maharashtra, India. METHODS: A two-year intervention research project documented the workings of the PPM-DOTS programme. This paper draws on in-depth interviews with programme officers and staff, and semi-structured interviews with private practitioners (PP) practising in the study area. RESULTS: PPM-DOTS was originally introduced in PC, in order to increase access to DOTS. Over the years it has become an integral part of the RNTCP. Multiple approaches were employed to involve and sustain private providers' participation in PPM-DOTS. Systems were developed for supervision and monitoring DOTS in the private sector. Systematic use of operations research and successful mobilisation of available local resources helped set future direction for expanding and strengthening the PPM. The private sector's contribution to case detection and treatment success has increased, however ensuring referrals of TB suspects from all private providers continues to present a challenge. CONCLUSION: PPM-DOTS in PC is one of the few Indian models implemented as envisaged by global and national policy makers. Its successful operation for over a decade reiterates the importance of public sector initiative and leadership and makes it an interesting case for study and replication.

Health systems' responses to the roll-out of antiretroviral therapy (ART) in India: a comparison of two HIV high-prevalence settings.

The government of India launched the free anti-retroviral therapy (ART) initiative in 2004 and the programme has since scaled up expansion in a phased manner. Programme authorities acknowledge problems in scale-up, yet discussions have been restricted to operational constraints, with little consideration for how local health system responses to HIV/AIDS influence the delivery of ART. This paper draws on the perspectives of key informants and people living with HIV (PLHIV) to compare delivery of ART in two ART centres in the States of Maharashtra and Andhra Pradesh at two distinct points of time. In 2005, data were collected through key informant interviews (KIIs) using interview guides and a survey of PLHIV using a semi-structured interview schedule. Differences were observed in the functioning and resources of the two centres, indicating different levels of preparedness which in turn influenced PLHIV's pathways in accessing ART. We examine these differences in the light of programme leadership, ownership and the roles of public, private and non-governmental organisation actors in HIV care. KIIs conducted during a follow-up visit in 2009 focused on changes in ART delivery. Many operational problems had been resolved; however, new challenges were emerging as a result of the increased patient load. An understanding of how ART programmes evolve within local health systems has bearing on future developments of the ART programme and must include a consideration of the wider socio-political environment within which HIV programmes are embedded.

What 'outliers' tell us about missed opportunities for tuberculosis control: a cross-sectional study of patients in Mumbai, India.

BACKGROUND: India's Revised National Tuberculosis Control Programme (RNTCP) is deemed highly successful in terms of detection and cure rates. However, some patients experience delays in accessing diagnosis and treatment. Patients falling between the 96th and 100th percentiles for these access indicators are often ignored as atypical 'outliers' when assessing programme performance. They may, however, provide clues to understanding why some patients never reach the programme. This paper examines the underlying vulnerabilities of patients with extreme values for delays in accessing the RNTCP in Mumbai city, India. METHODS: We conducted a cross-sectional study with 266 new sputum positive patients registered with the RNTCP in Mumbai. Patients were classified as 'outliers' if patient, provider and system delays were beyond the 95th percentile for the respective variable. Case profiles of 'outliers' for patient, provider and system delays were examined and compared with the rest of the sample to identify key factors responsible for delays. RESULTS: Forty-two patients were 'outliers' on one or more of the delay variables. All 'outliers' had a significantly lower per capita income than the remaining sample. The lack of economic resources was compounded by social, structural and environmental vulnerabilities. Longer patient delays were related to patients' perception of symptoms as non-serious. Provider delays were incurred as a result of private providers' failure to respond to tuberculosis in a timely manner. Diagnostic and treatment delays were minimal, however, analysis of the 'outliers' revealed the importance of social support in enabling access to the programme. CONCLUSION: A proxy for those who fail to reach the programme, these case profiles highlight unique vulnerabilities that need innovative approaches by the RNTCP. The focus on 'outliers' provides a less resource- and time-intensive alternative to community-based studies for understanding the barriers to reaching public health programmes.

Examining sex differentials in the uptake and process of HIV testing in three high prevalence districts of India.

Sex differentials in the uptake of HIV testing have been reported in a range of settings, however, men's and women's testing patterns are not consistent across these settings, suggesting the need to set sex differentials against gender norms in patient testing behaviour and provider practices. A community-based, cross-sectional survey among 347 people living with HIV in three HIV high prevalence districts of India examined reasons for undergoing an HIV test, location of testing and conditions under which individuals were tested. HIV testing was almost always provider-initiated for men. Men were more likely to be advised to test by a private practitioner and to test in the private sector. Women were more likely to be advised to test by a family member, and to test in the public sector. Men were more likely to receive pre-test information than women, when tested in the private sector. Men were also more likely to receive direct disclosure of their HIV positive status by a health provider, regardless of the sector in which they tested. More women than men were repeatedly tested for HIV, regardless of sector. These sex differentials in the uptake and process of HIV testing are partially explained through differences in public and private sector testing practices. However, they also reflect women's lack of awareness and agency in HIV care seeking and differential treatment by providers. Examining gender dynamics that underpin sex differentials in HIV testing patterns and practices is essential for a realistic assessment of the challenges and implications of scaling-up HIV testing and mainstreaming gender in HIV/AIDS programmes.

Private practitioners' communications with patients around HIV testing in Pune, India.

Unlike any other disease so far, the 'exceptional' nature of HIV/AIDS has prompted debate about the necessity, but also the challenges, of regulating practitioner-patient communication around HIV testing. In India, the National AIDS Control Organization (NACO) has adopted the guidelines of the World Health Organization with regard to HIV testing and counselling, yet the extent to which these guidelines are fully understood or followed by the vast private medical sector is unknown. This paper examines the gaps between policy and practice in communications around HIV testing in the private sector and aims to inform a bottom-up approach to policy development that is grounded in actual processes of health care provision. Drawing on 27 in-depth interviews conducted with private medical practitioners managing HIV patients in the city of Pune, we looked specifically at practitioners' reported communications with patients prior to an HIV test, during and following disclosure of the test result. Among these practitioners, informed consent is rare and pre-test communication is prescriptive rather than shared. Confidentiality of the patient is often breached during disclosure, as family members are drawn into the process without consulting the patient. While non-adherence to guidelines is a matter of concern, practitioners' communication practices in this setting must be understood in the given social and legal context of the patient-practitioner relationship in India. Communication with their patients is strongly influenced by practitioners' perceptions of their own roles and relationships with patients, perceived characteristics of the patient population, limitations in knowledge and skills, moral values as well as perceptions of legal guidelines and patient rights. We suggest that policy guidelines around patient-practitioner communication need to take sufficient cognizance of existing practices, cultures and the realities of care provision in the private sector. Patients themselves need to be empowered in order to grasp the importance and implications of HIV testing and counselling.

Public-private partnerships for equity of access to care for tuberculosis and HIV/AIDS: lessons from Pune, India.

The private medical sector is an important and rapidly growing source of health care in India. Private medical providers (PMP) are a diverse group, known to be poorly regulated by government policies and variable in the quality of services provided. Studies of their practices have documented inappropriate prescribing as well as violation of ethical guidelines on patient care. However, despite the critique that inequitable services characterise the private medical sector, PMPs remain important and preferred providers of primary care. This paper argues that their greater involvement in the public health framework is imperative to addressing the goal of health equity. Through a review of two research studies conducted in Pune, India, to examine the role of PMPs in tuberculosis (TB) and HIV/AIDS care, the themes of equity and access arising in private sector delivery of care for TB and HIV/AIDS are explored and the future policy directions for involving PMPs in public health programmes are highlighted. The paper concludes that public-private partnerships can enhance continuity of care for patients with TB and HIV/AIDS and argues that interventions to involve PMPs must be supported by appropriate research, along with political commitment and leadership from both public and private sectors.

Private providers and HIV testing in Pune, India: challenges and opportunities.

We explored HIV testing practices of private medical providers in an urban Indian setting in Pune, western India. 215 private practitioners (PPs) and 36 persons-in-charge of private laboratories were interviewed in separate surveys. 77% of PPs had prescribed HIV tests and 94% of laboratories had performed HIV tests, or collected samples for HIV testing. Among those providers who had prescribed/performed tests, practices which violated national policy guidelines were found to be common. 55% of PPs and 94% of laboratories had not prescribed/performed confirmatory HIV tests, 82% of PPs had conducted routine HIV screening tests, 53% of PPs and 47% of laboratories had never counselled patients before testing, and 39% of laboratories reported breaching confidentiality of test results. PPs' knowledge about HIV tests was also inadequate, with 28% of PPs who had prescribed HIV tests being unable to name the tests they had advised. Prolific HIV testing in the private medical sector is accompanied by inappropriate practices and inadequate knowledge, reflecting deficiencies in the implementation of policy guidelines. The perspectives and needs of private providers, the major source of health care in India, need to be acknowledged. Supportive and regulatory mechanisms can be used to involve private providers in the delivery of better HIV testing services.

Managing uncertainty around HIV/AIDS in an urban setting: private medical providers and their patients in Pune, India.

Changing epidemiological patterns and the advent of new rapid diagnostic technologies and therapies have created considerable uncertainty for providers working in HIV. In India, the demand for HIV care is increasingly being met by private practitioners (PPs), yet little is known about how they deal with the challenges of managing HIV patients. To explore HIV management practices in the private medical sector, a survey was conducted with 215PPs in Pune, India, followed by in-depth interviews focusing on the social context of practice among a sub-set of 27PPs. Drawing primarily on interview data, this paper illustrates a number of uncertainties that underlie the reported actions of providers in a competitive medical market. PPs perceive HIV as a 'new' and challenging disease for which they lack adequate knowledge and skills. Combined with the perceived high cost and complexity of antiretroviral treatment, preconceptions about HIV patients' social, financial and mental capacity lead to highly individualistic management practices. While these fall short of clinical 'best practice' guidelines, they reflect adaptive responses to the wider uncertainties surrounding HIV care in urban India. By highlighting contextual issues in PPs' management of HIV patients, the paper suggests the need to explicitly acknowledge the social, moral and economic bases of uncertainty beyond the clinical setting.