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A qualitative study on the barriers to tuberculosis treatment adherence using digital adherence technologies (DATs)
For correspondence: Dr Rajalakshmi Mahendran, Department of Community Medicine, Sri Manakula Vinayagar Medical College and Hospital, Puducherry 605 107, India e-mail: drrajalakshmimahe@gmail.com
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Received: ,
Accepted: ,
Abstract
Background & objectives
In order to meet the ambitious aim set by the Government of India as well as the sustainable development goals (SDG) target for eliminating tuberculosis in 2030, it is important for the healthcare providers to follow and support the patients throughout the treatment for its successful completion. For monitoring the tuberculosis treatment compliance, Digital Adherence Technologies (DATs) play a major role. DATs are digital tools that use mobile phone, computer, or sensor technologies to support the capture of detailed, daily, patient-specific adherence information. DATs provide opportunities for a more patient-centred care model and also help healthcare workers while treating tuberculosis (TB) patients when compared to traditional directly observed therapy. Hence, in this study explored the acceptance and barriers to the use of DATs for monitoring compliance with TB treatment and its possible solutions.
Methods
A community-based qualitative study was done in two PHCs in Puducherry, India among TB patients who completed treatment, healthcare providers such as tuberculosis health visitors, staff nurses, and respective medical officers. Thirty participants were interviewed using purposive sampling to explore TB treatment outcomes over two months (Oct-Nov 2023). In-depth interviews were conducted with the help of a separate interview guide consisting of broad, open-ended questions with two primary stimulus questions based on the acceptance and barriers for use of DATs for capturing adherence to TB treatment. The possible solutions for the barriers to the use of DATs were also explored by the healthcare providers. Manual content analysis was done for the qualitative data.
Results
Benefits of the use of DATs included saving time, identification of loss to follow up patients, information on NIKSHAY, and other direct benefit transfers. Barriers include financial constraints, level of education, family issues, and difficulty in the use of gadgets (tab). Some of the solutions to the barriers were cooperation from family members, distribution of mobile phones, appointment of ASHA workers, and linking of NIKSHAY IDs with Aadhaar card numbers to avoid duplication.
Interpretation & Conclusions
Identification of barriers and potential solutions in DATs can help in the successful monitoring and completion of tuberculosis treatment which are crucial towards achieving the tuberculosis elimination goal set by the Government of India as well as the SDG target for elimination by 2030.
Keywords
Adherence
dropouts
mobile phones
perception
technologies
Tuberculosis (TB) remains one of India’s deadliest diseases, significantly contributing to the country’s infectious disease burden. According to the World Health Organization (WHO), India accounts for the highest number of TB cases globally, with an estimated annual incidence of 2.8 million cases1. Despite being curable with appropriate treatment, TB management remains challenging due to the prolonged treatment duration, which ranges from six to 24 months2. Poor adherence to TB treatment can lead to severe consequences, such as the development of drug-resistant TB and an increased risk of relapse, making adherence monitoring crucial for disease control3.
In Puducherry, TB remains a public health concern, with a case notification rate of approximately 150-200 per 100,000 population4. The National TB Elimination Programme (NTEP) in Puducherry actively monitors TB patients through Directly Observed Therapy (DOT) centres in Primary Health Centres (PHCs), tertiary care hospitals, and private healthcare settings. However, challenges such as patient migration, stigma, and treatment fatigue impact adherence, increasing the risk of loss to follow up5. Reports from the State Tuberculosis Office (STO), Puducherry, indicate that typically 8-10 patients completed TB treatment monthly in selected PHCs, highlighting the need for improved adherence strategies6.
To ensure treatment adherence and successful completion, healthcare providers play a vital role in supporting and monitoring patients throughout their treatment journey7. Traditional approaches like DOT have been used for adherence monitoring but often pose logistic challenges for both patients and healthcare workers8. To address these barriers, Digital Adherence Technologies (DATs) have emerged as innovative tools for monitoring TB treatment compliance9. DATs utilise mobile phones, computers, and sensor technologies to provide real-time, patient-specific adherence data, enabling a more patient-centred approach10. In India, 99DOTS – a low-cost DAT using medication sleeves with hidden phone numbers has been widely deployed to track adherence11. Patients confirm their daily medication intake by making a toll-free call, allowing real-time monitoring12. Over 93,000 patients have been enrolled so far in the 99DOTS programme, improving treatment adherence while optimising healthcare resources13. However, challenges such as limited mobile access, patient engagement issues, and disruptions caused by the COVID-19 pandemic have affected its scalability14. Other DATs, such as smart pillboxes and Video Observed Treatment (VOT), provide alternative digital solutions to support adherence15.
Given the importance of adherence in TB control, this study explores the feasibility and acceptability of digital technologies among patients and healthcare providers in supervising TB treatment adherence in Puducherry. Additionally, the study examines the role of DATs in India’s TB control programme and their potential for integration into routine patient care16. Hence, the present study was done to explore the acceptance and barriers of using DATs for TB treatment compliance among patients and healthcare providers in Thirubhuvanai and Thirukanoor PHCs, Puducherry, and identify potential solutions.
Materials & Methods
This community-based study was conducted in two PHC service areas, Thirubhuvanai and Thirukanoor, under the department of Community Medicine, Sri Manakula Vinayagar Medical College and Hospital, Puducherry, India a tertiary care teaching hospital. These PHCs were chosen due to their significant burden of TB cases, active participation in India’s NTEP, and accessibility for TB treatment adherence interventions. Data collection was conducted over two months, from October 2023 to November 2023. The protocol of the study was submitted to the Institutional Ethics Committee and approval was obtained. Written informed consent was obtained. All the information collected from the study participants was kept confidential and their privacy was maintained. Administrative approval from State Task Force OR Committee, Puducherry and STO, Puducherry was also obtained before starting data collection.
Study design
This was a community-based qualitative study employing in-depth interviews to explore acceptance, barriers, and solutions for DATs in monitoring TB treatment compliance. This qualitative approach was chosen to provide detailed insights into patient perspectives, healthcare provider challenges, and the feasibility of integrating digital adherence monitoring within the existing TB control framework.
Study participants
The study included two key groups such as patients who completed TB treatment in the Thirubhuvanai and Thirukanoor PHC service areas during the study period and healthcare providers involved in TB management, including tuberculosis health visitors (TBHVs), staff nurses, auxiliary nurse midwives (ANMs)/accredited social health activists (ASHAs), and in-charge medical officers. This diverse participant selection ensured that varied perspectives on DATs’ usability, effectiveness, and challenges were captured.
Sample size and sampling strategy
A non-probability purposive sampling technique with maximum variation and key informant sampling was used. Sampling continued until data saturation was achieved, ensuring no new information emerged from additional interviews. In-depth interviews were conducted with 30 participants, including patients (completed treatment and lost to follow up) and healthcare providers (TBHV, nurses, medical officers). The interviews were conducted by a qualitative researcher with seven years of experience in TB research.
Data collection procedure
Patient details were obtained from the STO, Puducherry, including those who completed treatment and those lost to follow-up within the study PHCs. Informed consent was obtained before interviews. Interviews were conducted in Tamil (patients and health workers) and English (medical officers) at PHCs, patient residences, or convenient locations ensuring privacy. A structured interview guide with open-ended questions focused on acceptance and barriers of DATs, ease of use for both patients and healthcare providers and potential solutions to improve DATs adoption. The PI acted as a note-taker. Interviews were audio-recorded, transcribed verbatim in English, and anonymised. Thematic analysis was conducted, codes were generated from transcripts, categories were formed by merging similar codes and themes were developed by grouping related categories. To ensure patient confidentiality, no identifiable information was collected during interviews.
Data analysis
Manual content analysis was done for the data from the in-depth interview (IDI) technique. The audio recordings of the interviews conducted in ‘Tamil’ was translated into English and the transcripts were prepared in verbatim. After comparing with the field notes the final transcripts was prepared. Transcripts were carefully read, revised and proofread in advance. Transcripts were manually coded using inductive/deductive reasoning to improve interpretation and codes were merged to form categories and categories were further merged to form themes. The results were reported according to the consolidation criteria for reporting qualitative research guidelines17.
Results
In-depth interviews were conducted among a total of 30 key informants (medical officers: 3, tuberculosis health visitor: 9, staff nurses: 6, ANM/ASHA: 2 and tuberculosis patient: 10) to explore the benefits, barriers faced in the use of digital adherence technologies and solutions to the barriers. IDIs was conducted in PHCs and at participant residences. The number of years of experience of medical officer/TBHV/staff nurse/ANM ranged from 4 to 10 yr. The mean (± SD) age of the tuberculosis patients was 32 (±0.788) yr.
The interview was audio recorded with the participant’s permission, and each IDI lasted for 23-40 min. The interview was conducted using interview guidelines and consisted of open-ended questions on the participant perceptions and possible solutions towards using digital tools in monitoring treatment compliance, perceived enabling factors or difficulties using phone calls and SMS/WhatsApp for monitoring. To ensure validation, debriefing was done before closing the interview and participants were asked if they wanted to add extra information. Prior permission was booked with all participants to ensure that the interviews took place at their own chosen convenient times and sites.
Benefits of the use of digital adherence technologies
In table I, content analysis of benefits of the use of digital adherence technologies was categorised into four categories, the time related factors, loss to follow up related factors, NIKSHAY and Direct Benefit Transfer (DBT) related factors and patient related factors.
| Category | Code | Quotes |
|---|---|---|
| Time related factors | More numbers of patients can be followed up each day and it saves time (5) | ‘I was able to follow up only one patient in person in a day but through phone I was able to follow up three to four patients in a day’ said by TBHV |
| Able to achieve treatment adherence & completion as early as possible (4) | ‘ANM said patient was able to achieve completion by 6 months of treatment’ | |
| Reminder messages were sent automatically after 2 months of treatment completion for sputum testing & follow up message were sent every 6 months till 2 yr & regarding side effects (6) | ‘I get message for giving sputum for test after starting treatment’ said by patient | |
| Loss to follow up related factors | Follow up & counselling through phones/Easy traceable (12) | ‘Those patients who missed treatment can be followed up easily through phone call and messages’ said by TBHV |
| ‘With help of NIKSHAY portal follow up of patients can be done even in unfavorable conditions such as heavy rainfall and when the patient is out of station’ said by TBHV | ||
| ‘Staff nurse said Patient gets message immediately as soon as diagnosed and it saves time’ | ||
| Stigma-related factors (3) | ‘Follow up through phone call reduces stigma especially for young patients’ said by ANM | |
| ‘Stigma of visiting young female patients when I visit them in ANM uniform is avoided’ said by Staff nurse | ||
| NIKSHAY & Direct Benefit Transfer (DBT) related factors | Bank details & other personal details are entered online immediately (6) | ‘DBT send direct message to patient even if I delay even one day in entering bank details, so patient calls us immediately and asking us to do the needful’ said by Staff nurse |
| Direct Benefit transfer (DBT) sends reminders to patients & also to health care providers if bank details are not entered or missed or when there is delay in starting of treatment after diagnosis (5) | ‘I get calls from Govt to enter bank details’ said by ANM | |
| NIKSHAY has the option to enter primary & secondary phone numbers to avoid loss to follow up (3) | ‘Options available in NIKSHAY Portal to add more than one phone numbers like primary, secondary number which is very helpful to contact the patients’ said by ASHA | |
| NIKSHAY send messages to be concerned TBHV if cases identified & referred from medical colleges do not come for treatment (6) | ‘Regular messages are sent to patients who does not turn up for treatment after diagnosed’ said by Medical Officer | |
| Patient related factors | Even bedridden patients and working patients also send messages immediately regarding laboratory reports & bank details (4) | ‘I have given my sons phone number, and he gets message regarding my laboratory reports’ said by patient |
| Emotional and moral support were given to patients when they receive messages or phone call from authorities asking regarding their well-being (5) | ‘Sister calls us frequently and ask about the health condition and credit of amount from Government’ said by patient |
TBHV, tuberculosis health visitor; NIKSHAY, National TB Information System; ANM, auxiliary nurse midwife; ASHA, accredited social health activist
Note: The numbers in parentheses represent how many participants made this statement
A female TBHV during IDI said that,
“We and also patients receive SMS reminders from NTEP to take Anti-tubercular treatment when there is delay in start of treatment after diagnosis and if bank details are not entered or missed is very useful”.
Barriers and solutions in the use of digital adherence technologies
Barriers and solutions to barriers faced by the health care providers and patients in the use of digital adherence technologies were categorised into three themes, the patient related factors, health workers related factors and programme related factors in tables II and III, respectively. The health care providers felt that the few patients did not recharge the mobile phones, switch off or frequently change the phones and there are old and illiterate patients who do not know how to use phones were the few barriers in the use of digital adherence technologies (Figure).
| Themes | Categories | Codes | Quotes |
|---|---|---|---|
| Patient related factors | Financial reason | Mobile phone not recharged, switched off & broken or faulty phone (4) | ‘I have seen many patients in my area does not attend phone call due to work; many didn’t recharge the mobile phones, change of mobile numbers frequently’ - TBHV |
| Few patients do not have phone personally (3) | ‘I don’t have phone with me and my daughter never said that she received any message’ said by patient | ||
| Education/Job responsibility | Illiterate & old patients do not know how to use phone (5) | ‘I don’t know to read the message; my son only reads but he comes only at night’ said by patient | |
| Patients will not attend phone calls when in work (3) | ‘Most of the time when I call my patient, he does not attend call, later he says he was at work’ said by staff nurse | ||
| Family & work-related issues | Other family members might be having the phone (4) | ‘My son uses to play with my phone and does not give me’ said by patient | |
| Due to workplace rules | ‘I switch off my phone when I go for work in textile shop from morning till evening since it is not allowed’ said by patient | ||
| Health workers related factors | Gadget issues | Tab given in NIKSHAY is cumbersome to call patients & hence personal mobile phone is used (5) | ‘It is difficult to carry the Tab given by the Government since it is very heavy’ said by ANM |
| Personal issues | Sometimes patients misuse phone calls & start talking more personally (3) | ‘One of my patients ask more about my personal details which I don’t like’ said by TBHV | |
| Personnel issues | TBHV visits only three days a week to particular center and should cover the whole population of the center which adds more burden (3) | ‘I visit service area of one medical college only for three days in a week, I feel it is very limited number of days’ said by TBHV | |
| Programme related factors | Portal issues | Sometimes in NIKSHAY portal individual patient page will not work properly (4) | ‘I feel NIKSHAY portal always hangs and it is not easy to use’ said by staff nurse |
| Due to multiple phone numbers multiple NIKSHAY IDs are created (5) | ‘Some patients give multiple phone numbers in multiple places which lead to creation of multiple NIKSHAY Ids’ said by Medical Officer |
ID, identification number
Note: The numbers in parentheses represent how many participants made this statement
| Themes | Solutions | Quotes |
|---|---|---|
| Patient related factors | Recharging of mobile phone will help in regular follow up of patients (8) | ‘Education regarding recharging of registered mobile numbers with minimum balance’ said by ANM |
| Co-operation from other family members is needed to avoid people lost to follow up (6) | ‘I give regular counselling to family members for smooth completion of treatment’ said by Medical Officer | |
| Health workers related factors | Mobile phones can be given to health workers instead of tab (9) | ‘I request to give us mobile phone for NIKSHAY enter instead of tab’ said by TBHV |
| NTEP ASHA workers can be appointed to each centre, which can increase the frequency of house visits of each patient (7) | ‘More number of ASHA workers can be appointed to follow up the patients’ said by staff nurse | |
| Programme related factors | NIKSHAY portal can be made still user friendly (8) | ‘I suggest the authorities to make the NIKSHAY portal easier to use’ said by Medical Officer |
| NIKSHAY IDs can be linked to Aadhaar number to avoid duplicate IDs (7) | ‘One of my suggestions is linking patient Aadhaar number with NIKSHAY ID which reduce duplication and bring uniqueness in patient identification’ said by ANM | |
| Reminder calls & messages can be sent to all patients every day to avoid people losing to follow up (8) | ‘I feel everyday automatic call should be made to each patient as a reminder to take medicines’ said by TBHV |
NTEP - National Tuberculosis Elimination Programme
Note: The numbers in parentheses represent how many participants made this statement
- Barriers and solutions in the use of DATs. NTEP, National Tuberculosis Elimination Programme; ASHA, accredited social health activist; NIKSHAY, National TB Information System; ID, identification number.
A 45 yr old female patient, during the interview said that,
“Due to financial reasons we neither recharge the mobile phone nor charge it due consumption of electricity”
A 38 yr old male staff nurse during IDI said that,
“NIKSHAY IDs of the patients can be linked to Aadhaar number to avoid duplicate IDs which helps in regular follow up of patients”.
Discussion
This study identified that the benefits of using digital adherence technologies were that they save time by allowing the follow up of more patients each day, follow up can be done even in unfavourable conditions, and SMS reminders from NTEP help patients take treatment and enter bank details as soon as possible. Similarly, a study done by Subbaraman et al18 stated that digital device interventions focus on health service barriers to TB treatment adherence. They also stated that digital technology services have opened various treatment support benefits that even self-administered therapy lacks. In the present study, we found that DATs also help in adherence and treatment completion on time or early. A study by Liu et al19 stated that non-adherence was reduced by 57-64 per cent in the intervention group compared with the control group in their study. Similarly, studies also said that digital technologies offer the possibility of improving adherence and clinical outcomes20-26. A study by Cattamanchi et al27 described DAT as a viable alternative to DOT, especially for patients who are interested and have access to a phone for using this technology. Vilyte et al28 stated that there are further financial savings associated with not having to physically visit a healthcare institution, as well as less need to take time off work to observe treatment and increased privacy28.
According to the STO, Puducherry, approximately 8 to 10 TB patients typically complete treatment each month in these PHCs. Puducherry, despite its high literacy rate and better healthcare infrastructure compared to other Indian States, faces challenges in TB treatment adherence, making it a relevant setting for studying DATs. These PHCs provide DOTS-based TB treatment but experience issues such as patient loss to follow up and medication non-adherence, aligning with broader national challenges in TB control. The possible barriers to using DATs included some patients not attending phone calls due to insufficient balance, frequently changing phones, and older or illiterate patients who do not know how to use a phone. These difficulties need to be addressed to improve TB treatment outcomes. Similarly, various barriers were stated in a study by Thekkur et al29. They stated that some patients did not own mobile phones and relied on family members, who may not always be available or supportive. Some patients lacked knowledge regarding phone usage. Other challenges included a lack of motivation to give a missed call and a lack of awareness regarding the need to give a missed call from the patient’s perspective. From the healthcare provider’s perspective, assessing the portal in field conditions was difficult, and there was no provision to document the retrieval action after a missed dose. They also mentioned that the inability to register more than one phone number per patient, difficulty for patients in dialling a 10-digit number, the absence of an automated voice reply, and the misinterpretation of no missed call as a technical issue were regarded as application-related challenges. Barriers to DATs identified through another study included inadequate network connection, limited access to electricity to charge smartphones and make dosage confirmation calls, and low literacy, including technological literacy30.
A possible solution identified from the stakeholders’ perspective was linking NIKSHAY IDs of patients to aadhaar numbers to avoid duplicate IDs, which would help in regular follow up of patients. Support from family members will also increase adherence to treatment as well as reduce loss to follow-up. Mobile phones can be issued to health workers to replace the tablet system. Appointing NTEP ASHA workers for each centre can increase the frequency of home visits for each patient under that centre. Making the NIKSHAY portal more user-friendly, along with daily reminder calls and messages to all patients, can enhance follow up and prevent loss to follow up. The solutions were stated in a study by Leddy et al30, which suggested that to boost acceptance, it might be necessary to provide inexpensive mobile phones to those in need or develop DATs that do not require regular charging or a steady network connection30.
This qualitative study explored the emic perspective of patients and various stakeholders, which could help in suggesting changes in policy implementation. This was an added strength to the study.
Furthermore, incorporating the perspectives of policymakers strengthened the policy recommendations. Policymakers play a critical role in ensuring the successful integration and scalability of DATs in TB programmes. Their insights into resource allocation, infrastructure development, and regulatory challenges can help address existing barriers and optimise implementation strategies. As highlighted by Daniel et al31, the involvement of policymakers is essential in streamlining digital health interventions, ensuring sustainability, and aligning them with national healthcare priorities.
Despite the strengths, we were unable to include participants from other PHCs in this study. This limitation may affect the comprehensiveness of our findings, as the perspectives gathered may not fully represent the experiences and opinions of participants from a broader range of healthcare facilities. This study helped to identify the benefits, barriers and possible solutions on usage of DATs for drug monitoring among TB patients. Benefits of digital adherence technologies include time savings, tracking lost-to-follow up patients, facilitating NIKSHAY transfers, and providing emotional support. Barriers include financial issues, education levels, gadget use difficulties, and NIKSHAY portal challenges. Solutions involve family cooperation, distributing mobile phones, appointing ASHA workers, and linking NIKSHAY IDs to Aadhaar numbers. Future research should consider including a wider array of PHCs to ensure a more inclusive understanding of the issues at hand.
Acknowledgment
The authors acknowledge the management of our college and NTEP STF Puducherry for their support in conducting the research.
Financial support & sponsorship
The first author (MS) received funding support through the ICMR-STS fellowship programme.
Conflicts of Interest
None.
Use of Artificial Intelligence (AI)-Assisted Technology for manuscript preparation
The authors confirm that there was no use of AI-assisted technology for assisting in the writing of the manuscript and no images were manipulated using AI.
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