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ORIGINAL ARTICLE
Year : 2019  |  Volume : 63  |  Issue : 2  |  Page : 94-100  

Why tuberculosis patients under revised national tuberculosis control programme delay in health-care seeking? A mixed-methods research from Wardha District, Maharashtra


1 Assistant Professor, Department of Community Medicine, Mahatma Gandhi Institute of Medical Sciences, Wardha, India
2 Junior Resident, Department of Community Medicine, Mahatma Gandhi Institute of Medical Sciences, Wardha, India
3 Professor and Head, Department of Community Medicine, All India Institute of Medical Sciences, Nagpur, Maharashtra, India
4 Professor and Head, Department of Community Medicine, Sri Manakula Vinyagar Medical College, Puducherry, India

Date of Web Publication18-Jun-2019

Correspondence Address:
Pradeep Ramrao Deshmukh
Department of Community Medicine, All India Institute of Medical Sciences, Nagpur, Maharashtra
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/ijph.IJPH_138_18

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   Abstract 


Background: Timely treatment of tuberculosis is imperative for its control. This can get delayed due to delay in care seeking, diagnosis or treatment initiation. Objectives: The study aims to find out the magnitude of delays in care seeking, diagnosis or treatment initiation, and understand the reasons behind these delays in Wardha district of Maharashtra, India. Methods: A mixed methods study was conducted among 275 patients selected from those enrolled under Revised National Tuberculosis Control Programme in 2014. We collected information regarding the duration of delays and generated a free list of reasons for delays in care seeking and diagnosis. The free list items were then subjected to pile sorting. Two-dimensional scaling and hierarchical clustering analysis were performed to identify the various domains of reasons for delays. Results: The median delay in initial care seeking and diagnosis was 10 days each, and that for treatment initiation was 2 days. The domains identified for delay in care seeking were negligence toward health, health conditions, facility-related issues, and household and social reasons. The domains identified for delay in diagnosis were system-related reasons; and patient-related reasons, each of them further having two subdomains. Conclusions: Interventions for reducing the knowledge gap and stigma, increasing the accessibility of services, active case finding; capacity building of providers, quality assured sputum microscopy, and communication skills will help reduce these delays.

Keywords: Care seeking, delays in tuberculosis, diagnosis, direct observation treatment short, social support


How to cite this article:
Mundra A, Kothekar P, Deshmukh PR, Dongre A. Why tuberculosis patients under revised national tuberculosis control programme delay in health-care seeking? A mixed-methods research from Wardha District, Maharashtra. Indian J Public Health 2019;63:94-100

How to cite this URL:
Mundra A, Kothekar P, Deshmukh PR, Dongre A. Why tuberculosis patients under revised national tuberculosis control programme delay in health-care seeking? A mixed-methods research from Wardha District, Maharashtra. Indian J Public Health [serial online] 2019 [cited 2019 Sep 20];63:94-100. Available from: http://www.ijph.in/text.asp?2019/63/2/94/260593




   Introduction Top


Tuberculosis (TB) remains an important and widely prevalent public health concern even after several decades of the discovery of chemotherapeutic drugs. Early diagnosis and prompt treatment initiation are imperative for its control.[1]

One of the reasons for unsatisfactory cure rates under Revised National Tuberculosis Control Programme (RNTCP) in India may be the associated delays at various levels. The various delays in TB care can be either in care seeking, diagnosis and treatment initiation.[2] Factors such as distance of health facility, alcohol, type of health-care providers, awareness, social stigma, domestic priorities, and self-medication are known to influence initial care seeking.[3],[4],[5] The site of disease, i.e., pulmonary or extra-pulmonary TB (EP-TB), homelessness, type of health-care providers, self-medication, alcoholism, and absence or shorter duration of cough are associated with delayed diagnosis and treatment initiation.[6],[7] Poor quality of services at health facilities also delay care seeking and diagnosis.[8]

A patient of TB may infect several others during illness.[9] Untreated patients remain infectious for a longer duration, augmenting the number of secondary cases. Delay in diagnosis and treatment may lead to the progression of disease pathology and thus poor treatment outcomes. TB inflicts financial burden not only on the patients' families but also on the society.[10],[11]

It thus becomes important for program managers and health-care providers to understand the causes of the delays to design interventions, and thus improve program outcomes. We conducted the present study to find out the magnitude of delays in care seeking, diagnosis and treatment initiation and their underlying reasons among TB patients in Wardha district.


   Materials and Methods Top


Study setting

The present study was conducted in Wardha district, Maharashtra, India. There are three Tuberculosis Units, 15 designated microscopy centers, 74 peripheral health institutions, and 946 Direct Observation Treatment Short Course (DOTS) centers. A patient with cough of ≥2 weeks' duration presenting at a health facility has to undergo sputum microscopy for acid-fast bacilli. Following a positive test, the patient is registered under RNTCP and receives drugs from the DOTS center nearest to his/her residence or from a place of their preference.

Study design

We carried out mixed methods study of the explanatory type where the quantitative phase was followed by the qualitative data collection using free list and pile sort techniques to seek the reasons for the delays identified through the quantitative survey.[12]

Quantitative phase

We initially collected information on the magnitude of delays from TB patients who were enrolled in 2014 under RNTCP. Ninety-one patients (cases) who had any of the adverse treatment outcomes (deaths, defaults, relapse, treatment failure, and shift to category IV) were included. We selected 209 controls (91 × 2 + 10% to account for loss to follow-up) randomly with the help of computer-generated random numbers from the successfully treated and relapse-free patients. The total sample size obtained thus was 300 out of which there were 25 losses to follow-up. We were thus able to contact 275 patients for the magnitude of delays. The detailed methodology of the quantitative study is published elsewhere.[13] For the present study, we defined the delay in care seeking as the number of days from the development of symptoms to the first consultation with any health-care provider. The delay in diagnosis was defined as the number of days taken from the first consultation with a health-care provider to the establishment of a diagnosis of TB. The delay in treatment initiation was defined as the number of days from the diagnosis of TB to initiation of DOTS.[3]

Qualitative phase

We did “free list and pile sort” for an in-depth understanding of the reasons for these delays. To begin with, after obtaining a written informed consent, we made the free list with all the 275 participants while collecting the quantitative data between November 2015 to August 2016. The primary question asked to the respondents was “What are the reasons for TB patients not going early to seek health care?” and “What do you think are the reasons for the diagnosis getting delayed?” They were asked to list the reasons in Marathi which were then translated to English and back translated to Marathi. In case the respondents were unable to write, the responses were noted down in English in the same order in which they were mentioned.

For “pile sort” exercise, we purposively selected seven individuals with a present or history of taking DOTS regimen for TB, who were aware about TB and were willing to talk. The individuals were contacted with the help of Accredited Social Health Activist workers during February–April 2017. In some of the villages, a weekly clinic is run to provide health services. The exercise was performed after the clinic timings individually with each participant to ensure privacy and avoid any interference. Verbal informed consent was taken for participation in the study.

A brief ice-breaking session was conducted before pile sorting, and the purpose of the study was explained to the participants. All the items generated through the free list were included for pile sort and cards labeled in Marathi were prepared. The individual was asked to make as many piles as he/she thinks is fine according to his/her understanding.

Data analysis

The analysis was done using SPSS v. 12.0 (Statistical Package for the Social Sciences, Chicago, IL, USA) for quantitative data. The magnitude of delays has been reported as median and their interquartile range (IQR). The qualitative data were analyzed using Visual Anthropac v. 1.0.[14] Smith's salience index was calculated for the items of free listing. A two-dimensional scaling and hierarchical clustering analysis were carried out to identify the various domains of reasons for delays. The Kruskal's stress index for two-dimensional scaling of reasons of delay in care seeking and diagnosis were 0.135 and 0.084, respectively.

Ethical approval for the study was obtained from the Institutional Ethics Committee of Mahatma Gandhi Institute of Medical Science, Sewagram.


   Results Top


About 51% of patients visited more than one health facility for consultation, and about 13% of patients visited more than two health facilities before a final diagnosis of TB was made.

Delay in care seeking

The median duration of care seeking after the development of initial symptoms was 10 days (IQR: 7–15) [Table 1].
Table 1: Magnitude of delays in health care among tuberculosis patients (n=225)

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Participants cited 14 reasons for delay in care seeking, the most common being that the patients did not consider the symptoms are serious enough for consultation. The other common reasons included home remedies, work commitments, and neglect of health [Table 2].
Table 2: Free listed items of the causes of delay in care seeking

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After pile sorting, the reasons were grouped into four domains, namely negligence toward health, health conditions, facility-related issues, and household and social reasons [Figure 1].
Figure 1: Domains relating to delays in care seeking.

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The reasons relating to negligence toward health were – undermining the severity of symptoms, not giving importance to health, and suffering from comorbidity.

The reasons related to health conditions were that the patient was pregnant and did not want to expose the fetus to the adverse effects of DOTS. Some of them believe that TB cannot relapse after completion of DOTS.

The health facility-related reasons included unwillingness to visit health facility and lack of knowledge about the facilities providing the required services.

The domain of household and social reasons had two subdomains pertaining to household conditions and preference; and social support and stigma. The reasons under the subdomain of household reasons were the use of home remedies, busy work schedule, self-medication, monetary constraints, and lack of care from family members. Among the social reasons, patients said that they delay visiting a health facility in the absence of a companion. Sometimes, they fear the social impact of being diagnosed with TB.

Delay in diagnosis

The median duration for diagnosis after the first consultation was 10 days (IQR: 4–20) [Table 1].

Among the 22 reasons free listed by the participants for delay in diagnosis, the most common was initiation of empirical therapy without performing the investigations. The other common reasons were time taken for investigation results to come, inability (incompetence) of the doctors in diagnosing TB, unavailability of diagnostic services, and inconclusive investigation reports [Table 3].
Table 3: Free listed items of reasons of delay in diagnosis

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On pile sorting, we identified two domains for delay in diagnosis. They were system-related reasons and patient-related reasons. System-related reasons had two subdomains – doctors- or facility-related reasons, and investigation-related reasons. The domain of patient-related reasons had two subdomains – personal reasons, and symptoms and patient behavior [Figure 2].
Figure 2: Domains relating to delays in diagnosis.

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Doctor- or health facility-related reasons included the inability of doctors to diagnose TB, comorbidity, leaves and holidays, and distance of health facility from home. The investigation-related reasons included the time taken for investigation and its reports, inconclusive reports, and unavailability of diagnostic services at certain health facilities.

In the subdomain of the personal condition of patients – work commitments, absence of cough (in EP-TB cases), and migration were included. Under the subdomain of symptoms and patient behavior, initiating empirical therapy, initial sputum-negative status, dry cough, presenting late for investigations and unwillingness to go to health facilities, and multiple sputum examinations on referral were included.

Delay in treatment initiation

The median duration from diagnosis to treatment initiation was 2 days (IQR: 1–5) [Table 1]. Since, the delay in treatment initiation was within the prescribed guidelines of 7 days by the World Health Organization (WHO), we did not perform qualitative inquiry into its causes.


   Discussion Top


The median delay for both care seeking and diagnosis in our study was 10 days each whereas for treatment initiation after diagnosis the median time taken was only 2 days. The various domains for delay in care seeking included negligence toward health, reasons related to health conditions, related to health facility, and household and social reasons. Among the delay in diagnosis, the domains identified were system-related and patient-related reasons.

The duration of delay in care seeking has reduced from 19 days in 2008–2009 to 10 days in 2014 in Wardha district. This can be attributed to the awareness campaigns for TB under RNTCP. Another reason may be the difference in inclusion criteria of participants.[15] The delay in diagnosis has also reduced as compared to the past and was less than a multicentric study conducted by the WHO.[3],[16] However, it is still on the higher side considering that sputum microscopy yields results in 2–3 days.

Domains of delay in care-seeking

The present study identified four domains of delay in health-care seeking namely negligence toward health, health conditions, facility related, and household and social reasons.

Negligence toward health can partly be attributed to lack of awareness regarding TB and chest symptoms in general. The perception of cough as minor ailment may also be responsible for delayed care seeking.[17],[18],[19] Active case finding and efforts toward increasing the awareness regarding the symptoms of TB, the importance of early care seeking and availability of free services under RNTCP is needed.[16],[20]

As seen in some of the previous studies, the present study also recognizes the effect of other health conditions such as pregnancy and history of TB on health-care seeking behavior for tubercular symptoms.[17] The detrimental effect of TB on other health conditions and the importance of treatment for TB in conditions like pregnancy needs to be stressed on. An incorrect belief that TB cannot recur in a person seems to prevail and should be curbed right at the outset while counseling the patients, urging them to seek help at the earliest should the symptoms recur.[18]

The fear of procedures and diagnosis, perceived disrespect by health-care providers, long waiting times and distance of health facilities, etc., are some of the deterrents in visiting a health-care provider.[21] Proper interpersonal communication and patient-provider interaction is an important parameter of quality of care. Appointing more health-care staff and developing communication skills among them might be helpful in eliminating these undesired experiences of patients.[22]

Personal, family, and social conditions largely govern the health-care seeking behavior of individuals, in this case for TB. Preference for self-medication and home remedies such as kadha and turmeric milk is common in traditional Indian households for episodes of cough. Such practices may lead to delayed care seeking. Easy availability of over the counter drugs and antibiotics is common in India which also delays the formal care seeking.[21] Overlapping working hours of health facilities and patients, high catastrophic cost in the private sector and lack of knowledge about the free treatment under RNTCP deter the care seeking.[23],[24],[25] Tailoring the care pathway for such vulnerable patients and enhanced visibility of the program flexibility may help in improving the care-seeking behavior of patients.

The social implications of TB in terms of stigma and discrimination are huge. It leads to delayed care seeking in an attempt to hide the disease condition and may also result in interrupted and incomplete treatment. Often, the stigma leads to loss of job and isolation, thus cutting down opportunities of social support.[26] Lack of such social support is also seen to negatively influence the health-seeking behavior in the present study. The role of family and social support in the care of TB patients is well known.[27] The prevalent stigma raises doubts on the effectiveness of the awareness messages. Highlighting the effectiveness of DOTS in rendering the patients noninfectious after treatment initiation through these messages may reduce the stigma and foster informal care and support.

Domains of delay in diagnosis

One of the major reasons for the delay in diagnosis in the present study came out to be the competency of the doctor in suspecting and diagnosing TB. Comorbidities, fear of diagnostic procedures, and distance of health facility were also seen to affect the diagnosis in the present study. Incorrect diagnosis predisposes the patients to multiple health facility visits with its temporal and financial consequences, superadded to the pathological consequence of the disease.[18],[21] In the present study, more than half of the patients consulted multiple health facilities before diagnosis. Comorbidities may instill a false sense of belief that the symptoms are due to the comorbid conditions and thus, TB becomes a distant suspicion for diagnosis. Storla et al. also suggested this possibility in their systematic review.[26] The fear of diagnostic procedure and long distance from health facility hinders the visits for investigations, which ultimately delays the diagnosis.[21],[23] Evidence-based training and skill building of doctors and increasing accessibility of investigation facilities are needed to minimize the delay in diagnosis.[18]

The unavailability of diagnostic facilities was also one of the reasons identified in this study. This is particularly true for EP-TB, for which the facilities are generally unavailable in rural areas. This is further compounded by the lack of specialist services in the health facilities to suspect EP-TB.[3] In sputum-negative patients, the conflicting reports of X-ray and sputum microscopy may put the physician in a dilemma. Good quality sputum microscopy is imperative for a proper diagnosis.[28] The potential causes of errors in diagnostic techniques also need to be identified and corrected including the skills of laboratory staff. The National Health Policy, 2017 conceptualizes strategic purchase of good quality services from the private sector, which can be explored in areas where government-based investigation facilities are poor or unavailable.

Patient-related reasons are responsible both for delay in care seeking and diagnosis.[18],[29] Work commitments, in addition to delaying the care seeking, was among the prominent reason for the patients not going for investigations. In the present study, overlapping working hours affected not only the care seeking but also the visits for investigations, especially among daily wage laborers or other small-scale workers who cannot afford flexible work schedules to visit health facilities.[24],[26],[29] Migration also delays the diagnosis and reduces the compliance with the treatment mainly due to need of family and social support.[18],[24]

One of the most important reasons for delayed diagnosis was the symptomatic treatment of patients without performing the required investigations. This was also confirmed by Mistry et al., in an urban setting.[18] The underlying causes may include lesser duration of cough, dry cough, a low degree of suspicion among the health-care providers, sputum-negative pulmonary TB and unavailability of investigation facilities within geographical proximity.[30] Another reason reported for the delay was multiple sputum examinations that the patients had to undergo. This reflects the lack of proper referral linkages and information exchange between various facilities.

The results of the present study should be interpreted with the limitations that the time durations in our study were an approximation of actual durations and thus susceptible to recall bias. However, triangulation with information available at the District TB center was performed to minimize such bias. Pile sorting helped to identify the broad areas where cross-cutting interventions may help in improving the services. However, we were not able to record the reasons why the participants made the piles the way they did. We did not divide the delays dichotomously as the literature lacks a single accepted definition for the same.


   Conclusions Top


Reasons for delays in health care in TB should be explored in a setting specific context and appropriate interventions are developed. In our setting, the main reasons of delay in care seeking were related to negligence toward health, and household and social conditions, while the reasons for delay in diagnosis were attributable to both the health system and the patients. Of the various solutions proposed in this paper, i) addressing knowledge gap of patients with respect to symptoms, availability of services, reducing stigma; ii) increasing geographical, financial as well as temporal accessibility of diagnostic services; iii) active case finding; iv) capacity and skill building of health-care providers; v) quality assured sputum microscopy; and vi) communication and counseling skills are the ones that we believe will have the most impact in reducing these delays.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
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