Back to normal (Patient).

Patients often reached out to TSs with questions about how and when they could safely resume certain daily activities. Uncertainty about when it was safe for them or others to return to their regular routines after a TB diagnosis and the start of treatment was a common concern. Many of their inquiries focused on integrating their treatment schedule into their daily lives. Additionally, some patients sought further clarification on the instructions provided by their physician, particularly regarding their treatment plan, dietary recommendations, and isolation measures. The following quotations illustrate these types of concerns:

Hello, good afternoon. I was recently diagnosed with tuberculosis and I wanted to ask you if I can eat pizza. Because the diet they gave me didn’t specify it very well. Thank you very much. (18-years-old female).

Good morning, I’m still testing negative. Could I skip a day of medication? Or if I drink alcohol, toast with a glass of cider and take the medication, will something happen to me? (44-year-old female).

Patients also expressed significant concern about the wellbeing of their family and close contacts. They frequently reached out to the TSs for guidance on isolation measures, particularly regarding whether it was safe to engage in social gatherings, attend family gatherings, run errands, or engage in intimate relationships. Concerns about the potential transmission were common, especially among patients who lived with relatives. For example:

I’m doing better. My brother has a bad cough. We don’t live together, but we share a bathroom. He’s diabetic and medicated, but I’m worried about him. (51-year-old male)

Impact of COVID-19 (Patient).

Patients frequently sought advice on whether they could receive the COVID-19 vaccine while undergoing treatment for TB, expressing concerns about the potential interactions between the vaccine and TB medication and the safety and adverse effects of the vaccine during treatment. The continuity of TB treatment during the COVID-19 pandemic was another major area of concern, with patients discussing the difficulties they faced in adhering to their treatment due to pandemic-related disruptions, including hospitalizations. Additionally, patients inquired about the safety of engaging in daily activities with appropriate precautions, such as wearing a mask, particularly when they were not exhibiting COVID-19 symptoms.

P: I wanted to let you know that yesterday I did a covid test and I just got a positive result. I am having a little difficulty breathing. I get agitated very easily and the coughing is becoming very annoying. Is COVID going to affect me in my TB treatment? I wanted to know if it will complicate my treatment, or if I need to take any special care. (32-year-old female)

TS: You have to continue your treatment! This is important! If you have respiratory difficulty, please consult your doctor in the emergency room. (TS #2)

Answering TB questions (TS).

TSs frequently addressed patients’ concerns regarding the disease, its treatment, and the impact of COVID-19 on TB treatment. Common topics included medication dosage, frequency, missed doses, uncertainty about what to do after taking the wrong dose, and potential drug interactions. Inquiries also explored the possible effects of having COVID-19 or being vaccinated against it on TB treatment. These questions reflected a desire to avoid compromising their TB treatment or experiencing unwanted side effects. Inquiries outside of the TS’s expertise were escalated to a specialist, and the TS followed up on their recommendations. TSs also used these communications to educate patients about how TB can affect the body, the consequences of non-adherence to isolation guidelines, specific isolation measures related to COVID-19, and the interpretation of test results.

Good morning! I accidentally took two Isoniazid 300mg. Is it dangerous? I weigh 40 kg. (33-year-old female)

P: Doctor, I have another question. Can I have energy drinks during treatment? (18-year-old female)

TS: Avoid alcohol and high-calorie drinks at the start of treatment if you have digestive symptoms like reflux or pain. You can drink energy drinks if you need to but don’t drink too much and keep an eye on your stomach. (TS #4)

Support for symptom/side effects (Patient).

Inquiries generally fell into symptom management and concerns about whether specific symptoms were normal. Patients reported a wide range of symptoms, the most common being gastrointestinal discomfort, pain, respiratory problems, and skin problems (Fig 1). Gastrointestinal issues were the most frequently reported, including nausea, vomiting, stomach pain, diarrhea, constipation, and changes in stool color. Other symptoms included night sweats, metallic taste, and general cold-like symptoms (unspecified). They primarily sought recommendations on how to manage these symptoms or determine if urgent care was necessary. In many cases, patients wanted to confirm whether their symptoms were expected side effects of the treatment, seeking reassurance to stay calm or avoid unnecessary hospital visits. Additionally, patients frequently provided updates to TSs on whether their symptoms had resolved or persisted.

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Fig 1. Symptoms reported and frequency.

https://doi.org/10.1371/journal.pone.0326492.g001

[In response to patient’s message about feeling sick] Don’t take the medication again today. Have a bland diet and take it again tomorrow. Take half the dose before breakfast, then have breakfast and wait two hours before taking the rest. This should help your stomach tolerate the medication better. (TS #1)

Good morning!! I wanted to ask a question: the muscle pain has not gone away. And now I have a black tongue. I feel a strong metallic taste when I eat everything and nausea. Should I continue with the medication? Should I go to the hospital? (43-year-old female)

Hi Doc! How’s it going? I’m doing okay. The first day was a bit tough, with some discomfort, stomach pain, and nausea. But thankfully, I’ve been feeling much better since the second day. (30-year-old female)

Symptom/side effect guidance (TS).

TSs provided guidance on managing a wide range of symptoms, including respiratory issues, pain, skin conditions, mental health concerns and more. Their approach typically involved normalizing common symptoms associated with TB or its treatment, offering reassurance and helping patients avoid unnecessary anxiety or hospital visits. For example:

The change in urine color is normal. The medication is orange, which can cause mucous membranes and secretions to change color during treatment. Don’t be alarmed; it’s just the medication. (TS#3)

When patients presented with atypical or worsening symptoms, TSs conducted brief assessments of their condition. Based on these evaluations, TSs offered symptom management recommendations and scheduled follow-ups or referred patients to their treatment center or hospital for further care. In some cases, particularly involving skin conditions, TSs requested patients to send photographs to assist their decision-making process. The following exchange illustrates this type of interaction:

P: Good morning, today in the report, I explained that I have hives. I have small welts on my legs that are red and very itchy. (26-year-old female)

TS: Good morning! Is it just one area or both entire legs? Can you send a photo?

P: Both legs, but especially from the knees up. (TS #1)

TS: Okay, show me a photo. I’ll wait for it.

P: [sends Picture] It may not look very good, but they are small welts, like a rash.

TS: If it’s only in the area around your knees, and you don’t see it spreading to other body parts, it seems more like localized atopy. Pay attention to it so it doesn’t affect different parts of your body and let me know!

Urgent request for assistance (Patient).

Patients frequently used the SM to report urgent health issues affecting themselves or their relatives. In these urgent situations, patients reported severe symptoms like respiratory distress, severe pain, persistent vomiting, and high fever.

I’m getting worse and bleeding. I’m still taking my medication. I’m upset that they couldn’t do an ultrasound. Please talk to the doctor; I need an urgent response. (22-year-old female)

TSs promptly advised them to seek immediate medical attention at the nearest emergency room. Beyond providing immediate care advice, TSs played a role in coordinating care and follow-up care. This included providing instructions on managing medical consultations, emphasizing the importance of regular follow-ups with treating physicians and ensuring proper coordination for ongoing care. Sometimes, patients needed help navigating the healthcare system to arrange further medical attention, and the TSs were viewed as valuable advocates. Their support helped patients feel assured that they were receiving appropriate care and that all necessary steps were taken to address their urgent needs. The following quote exemplifies a patient experience:

Seeking and providing emotional support (TS and Patient).

Emotional support emerged as a significant component of patient interactions with TSs. Many patients reported feelings of despair, anxiety, and uncertainty about their health situation, and for some, texting with TS served as a crucial emotional outlet.

Hi, I’m having a panic attack, and I don’t know what to do. I can’t sleep. I don’t know if that’s what’s giving me so much nausea. I’m only drinking liquids. I can’t sleep at all, and I’m panicking. I feel like I’m going to die. (33-year-old female)

This support became crucial for individuals who felt isolated during the prolonged COVID-19 lockdown—which overlapped with the study period—or who experienced a sense of being misunderstood during their primary care follow-ups. In response, TSs offered referrals to psychologists and psychiatrists and assisted with scheduling appointments, but they also closely monitored their emotional well-being. Beyond referrals, TSs provided practical strategies to manage negative emotions, such as recommending activities to keep the mind engaged and provide reassurance about their recovery process.

P: I get very nervous.

TS: Try to calm down! Give it time! It’s a lot of new drugs... the body has to assimilate them (TS #5).

That’s great (name)! Yes, try to relax. While you can’t go back to work look for some activity. Keeping your mind busy also helps a lot! (TS #4)

Physical side effects of treatment, such as nausea, vomiting, dizziness, fatigue, and lack of appetite often heightened patients’ emotional distress. Additionally, the stigma associated with TB amplified feelings of social isolation and fear, further exacerbating anxiety and emotional strain. Family dynamics also contributed to patients’ emotional challenges. Many expressed concerns for their loved ones, such as one patient who was deeply worried about her husband’s growing anxiety related to her illness and treatment. This combination of physical symptoms, social stigma, and family concerns created a complex emotional landscape for patients, where TSs played a vital role in offering support and assurance.

Requesting and providing healthcare coordination (Patient and TS).

Patients frequently engaged with TSs to assist in coordinating hospital visits, rescheduling medical appointments, and navigating healthcare services. Appointment coordination was a common need, as patients often required assistance rescheduling or confirming appointments due to conflicts with their personal or work schedules, missed appointments, and other unforeseen circumstances. TSs provided essential administrative support, helping patients manage information related to their medical appointments, such as ensuring that contact numbers were readily available, documentation and records were in order, and that necessary steps were taken to avoid delays or disruptions in their care. Many patients expressed gratitude for the care provided at the hospital, largely facilitated by TSs. Patients often apologized for misunderstandings or communication difficulties, highlighting the value they placed on TSs and respect for their assistance.

Hey there! I just wanted to let you know that I got the day off from work, so I’ll be able to make it to the Dr. [name] consultation on Thursday the 15th. Sorry for the hassle, thanks a lot! (22-year-old female)

Reminding to submit adherence report (TS).

Adherence to treatment and timely reporting of daily progress were critical components monitored by TSs throughout patients’ TB treatment. To ensure consistent reporting and assess that the patients were on track, TSs frequently reached out to patients when their daily reports were missing. TSs varied in their communication styles, which appeared to play a significant role in supporting intervention adherence. Some TSs used a personalized approach, tailoring their message to include the patient’s name, expressing concern for their well-being, and showing empathy. These TSs often made individualized inquiries about the patient’s condition which appeared to foster a stronger relationship, lead to greater patient engagement with the application, and prompt appreciative responses. For instance:

Good afternoon [name]! I hope you are doing well and that the abdominal pain symptoms have subsided. I just wanted to remind you that the reports are daily. Please do not hesitate to contact me if I can help you with anything. Have a nice day! (TS #3)

One patient responded.

Thank you very much for everything! Excellent service! I am forever grateful to all the staff of the hospital. (50-year-old female)

Additionally, some TSs sent a welcome message that included information about the intervention, their availability, and application-related features. Over time, this introductory communication was sometimes updated to include additional instructions, such as those related to claiming phone credit. This initial contact set the tone for the ongoing interaction and ensured patients were well-informed about using the application effectively. Additionally, some TSs sent messages recognizing significant treatment milestones. Some used standardized messages to congratulate patients on reaching these milestones, such as completing a month of treatment or nearing the end of the treatment course. These messages often included next steps, like scheduling a final follow-up or interview. Others sent more personalized messages, acknowledging the patient’s individual journey and expressing genuine pride in their progress. Such communication likely reinforced adherence by making patients feel more connected and supported throughout their treatment:

Good morning! It’s a pleasure to be your TS! I will accompany you during the treatment, answer questions, and help you in any way I can! I will respond to messages Monday to Friday from 8 am to 2 pm. After that, I will reply the next day! If you receive the message to activate the credit, we send you a monthly message to use the application and recharge your credit through SMS. Every month, we load credit so you can use the application! (TS #1)

In contrast, some TSs relied on standardized, generic messages sent to all patients in the same way, regardless of the patient’s responsiveness. These automated messages often failed to address the patient’s unique circumstances or health concerns. In cases where patients did not respond, these TSs continued to send repetitive reminders without changing their communication strategy. This lack of personalization and empathy appeared to be associated with reduced patient interactions and, in some cases where the TSs response was delayed, led patients to stop using the application altogether, highlighting the importance of timely interactions, as explained by a patient:

P: My treatment is going really well. I’m getting better every day! Regarding the application, I contacted you [TS] because I’d run out of medication on 16 Dec, and you replied on 28 Dec. I’d already gone to the hospital, and they’d given me the medication by then. So, I figured if there’s no follow-up, the application isn’t going to be helpful to me. That’s why I stopped using it. (39 Years Old, Male)

TS: we’re sorry; maybe there was a mistake with the application. (TS#1)

Barriers to submitting reports (Patient).

When patients were reminded by TSs to upload their daily reports, they often explained the delays. The most common reason cited was forgetfulness. Patients also provided various personal reasons and family situations for not submitting their reports, including being overwhelmed with work or daily tasks, not taking the medication because they were feeling unwell, or not using their mobile phones. Many patients mentioned that technical issues posed significant challenges when submitting their reports. The most frequently reported problems included not receiving notifications or encountering application glitches. Some patients also expressed difficulties navigating the application or using the test strips, which hindered their ability to complete their reports.

Good morning. I had forgotten because I had a very hard day and was going to upload it later, but I forgot. I will be more attentive. Thank you very much. (23-year-old male)

Good morning. My session was closed, and I couldn’t open it again, not even with the correct password. (22-year-old male)

Contextual factors were also identified as barriers to accessing the application’s features and completing reports. The most common issues were related to internet access, such as weak signal strength, running out of data credits, and being unable to afford an additional data plan. Problems with mobile devices or power outages further interfered with uploading reports. A small group of patients cited a lack of treatment or test strips as a reason for not completing reports. These patients often requested refills during their interactions with TSs.

Hello, good afternoon. I didn’t have electricity yesterday, and my phone was dead. But I’ll be more attentive, thanks. (23-year-old male)

Yes, I’m fine. It’s just that sometimes I’m at work and I don’t have a signal, and then I forget to log into the application because I’m not a big fan of using my phone. (23-year-old male)

Requesting technical support/Resolving technical issues (Patient and TS).

Patients frequently exchanged messages with TSs to resolve the technical problems related to the application’s functions and features and address challenges they faced during daily use. Common issues included difficulties with loading reports, encountering error messages when sending information, and problems with logging in or keeping the application active. Some users also struggled with finding the link to download the application, setting it up on a new device, and navigating the user interface. One of the recurring technical challenges involved device cameras, preventing them from taking and uploading photos of test strips required by the application.

Hey, I’m having trouble uploading photos. I can’t get the application to access my camera. It says I need to give it permission, but I’m not sure how. (16-year-old female)

Additionally, some patients reported that their report data was deleted or not saved correctly, negatively affecting their monitoring and treatment adherence record accuracy. To address these problems, TSs provided detailed instructions on activating camera permissions, completing missing reports and uploading reports correctly. They also offered guidance on how to resolve login issues and how to navigate the application more effectively.

P: I want to change my phone. How do I do it with the application? I looked for the application but couldn’t find it. (33-Year-old female)

TS: Hi! Here’s the link. You put it into Google: asistente.cirg.washington.edu. The blue start screen will appear as usual, and you will use your old phone number as your username and the same password.

P: Thank you!

TS: You’re welcome! Let me know if you need anything else and I’ll help you!

Moreover, intervention-related communication often focused on managing the logistics of the monthly phone credit provided to patients to ensure they could access the application. This communication included addressing issues that arose when patients changed their phone or phone number, dealing with situations where the phone carrier did not recognize the patient’s registered phone number, and responding to inquiries about when the credit would be granted.

Most interactions involved TSs informing patients that their phone credit had been provided on the previous day or the day of the message. In some cases, TSs provided a one-time redeem code to ensure the patient had sufficient credit. There were instances where patients needed to change their phone or phone number due to issues like poor battery life, which sometimes led to complications in receiving the credit. Additionally, when the phone carrier did not recognize the registered phone number, TSs needed to clarify the issue and gather further information from the patient to resolve it.

Hello [patient’s name], just insert the link [link] into your phone. There’s the same login screen as your previous phone had, you will put your same username and add that this is your phone number even though using another one, also use the same password. (TS #2)