Support for TB patients just a phone call away

With just a tap of a finger, some people with drug-resistant tuberculosis (DR-TB) can get in touch with a healthcare worker to get support over the phone. This support can both help people to start treatment more quickly and stay on treatment once they’ve started. It also reduces the need for people to visit healthcare facilities — a benefit that has become even clearer than before during the Covid-19 pandemic, as many people avoided going to clinics for fear of contracting the virus.

One example of such a telephone support programme is a collaboration between Doctors without Borders (MSF), the City of Cape Town and the Western Cape Department of Health. The programme was part of wider efforts in the metro aimed at adapting services to better meet the needs of people with DR-TB, or those at risk of contracting DR-TB.

There is a growing body of evidence suggesting that there is a place for such mHealth (mobile health) services in our healthcare system. Recent studies concluded that implementation of a mHealth application was feasible, acceptable to healthcare providers and patients, and has the potential to reduce the time to TB treatment initiation and initial loss to follow up in primary healthcare settings.

There also seems to be increasing recognition from the side of the government. Minister of Health Dr Zweli Mkhize, in a speech following the recent launch of the National TB Prevalence Survey, said Covid-19 has shown many innovative ways of providing health services in an integrated manner for efficiency. These should include the leveraging of digital technologies for TB screening, contact tracing and treatment adherence.

Why specifically for DR-TB? 

The challenges faced by people with DR-TB are multifaceted with the duration of treatment ranging from nine to 24 months, says Erika Mohr-Holland, an epidemiologist with MSF.

“There are a lot of tablets that need to be taken and there are several severe and toxic side effects, in addition to common and less severe side effects such as nausea and vomiting,” she told Spotlight. “Traditional models of care have required patients to go to the clinic every single day; however, with clinics being hotspots for Covid-19 transmission, this model required adaptation to mitigate patients’ risk.”

One such adaptation was to make more use of telephonic consultations.

Mohr-Holland explains that anybody presenting at a health facility with signs and symptoms of TB,  which could include weight loss, cough, fever, or night sweats, are referred for a test. Nurses then take the patients’ phone numbers, document their details and inform them that they will be contacted by phone if that is what they prefer.

“The telephone support consisted of three counselling sessions, education on the disease and treatment and also education for family members about the disease,” she explained on a recent Department of Health webinar. “Family members were also educated about the risk of living in the same household as someone with TB, considering everyone in the household breathes the same air; additionally, MSF supported household contacts between zero to 18 years  in starting TB preventative therapy if assessed not to have TB disease.”

Mohr-Holland says through the use of cell phones, patients feel like help is only a phone call away and should they have worrisome symptoms they can quickly talk to their counsellor without having to wait for their next appointment.

“Through the use of telephone support there was more frequent contact and there was a closer and open relationship between the counsellor and the patients. Patients had easier access to counsellors and could contact them anytime with ease, this fostered better relationships and trust between the counsellors and patients” she says.

“Being able to be assisted over the phone could save patients transport money and enable the patients and contacts to attend school or work as they continue to adhere to their treatment. Their livelihoods are not disrupted because they have to take their TB medication or preventative therapy. They don’t have to compromise on anything considering the already challenging socio-economic conditions they live in,” she says.

Phone challenges

MSF provided counsellors with cell phones and airtime. It is estimated that around nine in ten people in Khayelitsha have cell phones, but as Mohr-Holland points out, patients are still not always available and often people are not able to charge their phones.

“It was harder to get hold of patients if they were diagnosed at hospitals and not local clinics. When a patient presented at a facility, the TB nurses and doctors were required to document their information in the TB stationary; it was requested that they take two phone numbers for each patient so that they could be contacted telephonically,” she said.

Other technologies

“Covid-19 has shown us that we can use telemedicine and we can stop seeing patients every month and every week like before. We don’t have to see them so many times and it is no longer possible, so now we are forced to look at other mechanisms to still help our patients,” said Dr Norbert Ndjeka of the Department of Health, speaking on the same webinar as Mohr-Holland. “We can’t be having Direct Observed therapy and expose our patients. We have to really look at other ways to help our patients.”

Directly observed therapy (DOT) refers to healthcare workers watching or observing patients taking treatment — an approach generally taken only when someone has struggled to take treatment as prescribed. One variation on DOT is video directly observed treatment (VDOT), where the person is observed by video call. Mohr-Holland said VDOT was mainly focused on adolescents and young adults.

Text messages or SMSs are also being used to remind patients to take their medicines, to collect new medicines, and to provide general information about DR-TB.

There are also a variety of TB-related apps fulfilling various functions for the public or for healthcare workers. 

The Department of Health’s TB Health Check App provides an easy way for people to screen for TB. It can be accessed by dialling *134*832*5# or by sending ‘TB’ to +27600123456 on WhatsApp.

The USAID Tuberculosis South Africa Project’s ConnectTB app is used for recording and reporting patient data during DOT visits to TB and DR-TB patients. Their website explains that the app guides community healthcare workers (DOT supporters) in taking patients’ medical history, identifying side effects, and conducting contact tracing daily. “The project also uses the ConnectTB app to map locations of TB patients using geospatial mapping technology to support patient tracking and retention in care. Maps generated in this way are crucial for identifying high TB burden areas, which helps the project to streamline and focus its interventions in the areas where they are needed the most,” it says.

Not for everyone

“SMS communication and video calls could have the potential to strengthen the relationship between the patient and health worker and improve treatment adherence. This could also allow that missed treatment doses and treatment side effects experienced by patients could be detected and addressed by the health worker much earlier on,” says Wieda Human, TB Proof Project Coordinator and Communications Officer.

Phumeza Tisile, a TB survivor and activist says though telephone support might solve some of the challenges, she doesn’t believe that it is for everyone. “How are the blind and the deaf going to get the support they need through the phone. Most of the TB patients stay in townships with big families, maybe eight of us in one house. How will the issues of confidentiality be dealt with, issues of phones being not charged? Yes, it can work for some, but I do not think it is for everyone,” she says.

Tisile added: “I think an SMS will work better compared to VDOT. Patients should not feel like prisoners while taking their medication but rather feel supported. I really think having someone on the other end of the phone watching you take your tablets is really not necessary and it is not a form of support anyway. Patients should be asked what they prefer, people should stop deciding what the patients need.”

Mohr-Holland agrees that telephone support is surely not for everyone. “Those that want to be seen at the clinics and have face to face should be given the choice to receive care in that manner. I see this as a differentiated model of care that patients can opt into or out of. At the end of the day, the choice as to what model works best for an individual should lie with the patient,” she said, explaining that with telephone support, issues of disclosure to families were a challenge.

“However, a patient could say a time when they would like to be contacted or they send a please call and a counsellor will respond. This costs nothing on the patients’ side, just availability at the time determined that the call will be made.  However, this has been done as a standard of care, it just changed to telephonic over this period,” she explains.

Tisile says stigma is a big problem. “Clinics have to change the way they treat TB patients. You will find out that because of the stigma attached to it, patients don’t want to use their local clinics but would rather go to another township, for example when one stays in Mfuleni would rather go fetch their pills or be attended in Khayelitsha because of the stigma. This affects treatment adherence because transport money is not always available. I believe in this sense, telephone support will go a long way because you choose when to take the call and be helped,” she says. DM