The incidence and prevalence of multidrug–resistant tuberculosis (MDR TB) in the province of KwaZulu-Natal, South Africa, are amongst the highest in the world. Previously, interventions have been largely biomedical based; however, there is growing opinion that interventions must include social aspects such as patient education and attitudes.
This observational study assessed the knowledge and attitudes of 380 patients diagnosed with MDR TB at a centralised MDR TB unit in Durban. Data were collected using a questionnaire that was distributed to every third patient attending the outpatient MDR TB clinic. Data were collected over an 8-week period and analysed descriptively.
Just under half of the respondents had primary MDR TB. Most respondents were young, female unemployed and did not receive a social grant. Knowledge around diagnosis of MDR TB was generally adequate. There were important misconceptions about spread of the disease and duration of treatment. Most respondents received knowledge of MDR TB from healthcare workers. Some respondents received knowledge from friends, family and Sangomas and believed that the disease was caused by bewitchment or as a form of punishment.
The need for strengthening the role of primary care physicians in promoting education and providing support is highlighted. Further study is needed to investigate the high rate of primary MDR TB and to identify the unique challenges faced by women who have MDR TB. Future research could include the possibility of involving traditional healers in a contextually sensitive MDR TB education, training and support programme.
In 2012, it was estimated that worldwide, 3.7% of new and 20% of previously treated tuberculosis (TB) cases (totalling approximately 630 000) were classified as multidrug-resistant tuberculosis (MDR TB): that is, infection occurring with a
Given the complexity of management of MDR TB, a multifaceted approach is required, which includes swift, accurate diagnosis, availability of drugs and patients’ and healthcare professionals’ adequate knowledge and understanding of the disease. Reviewing associations between socio-economic factors, patients’ TB- and MDR TB-related knowledge, delayed diagnosis and poor treatment adherence are important as there is increasing consensus that socio-economic support and comprehensive patient education should be included in TB control interventions.
In SA, a hospital-based study carried out in 2011 reviewed healthcare professionals’ knowledge and attitudes towards TB and MDR TB. This study reported that knowledge around transmission and control were adequate,
A patient-based Ethiopian study in 2013 reported that a lack of knowledge and erroneous beliefs about TB and MDR TB were common amongst TB patients.
In SA, there have been few studies on patients’ knowledge of and attitude to MDR TB, and hence, this study is important to guide primary care physicians around education and training of their patients and their families in an area of high MDR TB prevalence. The aim of the study was to explore the knowledge and attitudes of patients towards MDR TB in order to strengthen primary care practice and guide further research in this important area. Study questions were threefold: (1) What are the demographic profiles of patients with MDR TB? (2) What are their knowledge levels of aspects of MDR TB? (3) What are their attitudes towards MDR TB?
The study design was descriptive and exploratory, and the study was conducted at the MDR TB Unit within a specialised TB Hospital in eThekwini, Kwazulu-Natal. Patients are referred to this unit from both private and public sector for initiation and follow-up consultations. Patients are diagnosed with MDR TB by GeneXpert testing, drug sensitivity testing or polymerase chain reaction–line probe assay, and only those patients with confirmed MDR TB are accepted for treatment at the unit. The MDR TB Unit in eThekwini is the largest specialised unit in KwaZulu-Natal, and on average, 250 new patients are initiated on MDR TB treatment each month. All MDR TB patients being followed up at the unit are seen monthly, with an average of 2500 patients seen monthly at this facility.
Study participants were patients in the outpatient department of the MDR TB Unit who were over the age of 18 years. A sample size calculation of 380 participants was derived with the assistance of a biostatistician using Creative Research Systems Survey Software® (April 2015), incorporating statistical variables of a 95% confidence level, 5% significance interval, using a population size of 2500 patients. It was assumed that patients present for review at the clinic in a random order, and the researcher, who is based at the hospital, invited every third patient presenting in outpatient department to participate in the study until the sample size was reached. The study commenced on 23 July 2015, and the sample size was reached on 17 September 2015. Files of patients who had completed the questionnaire were marked to ensure that respondents did not participate on more than one occasion.
The data collection instrument was a closed-ended questionnaire available in English and isiZulu in which participants were invited to respond to several predetermined potential responses. The questionnaire format comprised three sections: (1) demographic profile, (2) patients’ knowledge and (3) patients’ attitudes. The predetermined responses were selected based on a literature review of MDR TB patients’ knowledge and attitudes towards MDR TB
Data entry was carried out by the researcher and data analysis performed using SPSS® statistical package for descriptive statistics. Data were summarised using descriptive methods such as mean, frequency and range.
Ethical approval was obtained from the Research Ethics Committee at University of KwaZulu-Natal (ethics number is BE 282/15). Institutional approval was obtained from the hospital management at the study site, and all patients signed informed consent before participating in the study.
A total of 380 patients with MDR TB completed the questionnaire. The results are presented in three sections: (1) demographic profile, (2) knowledge and (3) attitudes.
Most respondents were female (226/380; 59.5%). The largest age group was 31–40 years (143/368; 38.9%). Demographic variables are shown in
Demographic characteristics of participants.
Variable | Responses | % |
---|---|---|
368 |
96.6 | |
18–20 | 25 | 6.8 |
21–30 | 105 | 28.5 |
31–40 | 143 | 38.9 |
41–50 | 62 | 16.8 |
51–60 | 23 | 6.3 |
> 60 | 10 | 2.7 |
377 |
99.2 | |
Yes | 87 | 23.1 |
No | 290 | 76.9 |
372 |
97.8 | |
No formal | 14 | 3.8 |
Grade 1–7 | 54 | 14.5 |
Grade 8–12 | 240 | 64.5 |
Tertiary | 64 | 17.2 |
377 |
99.2 | |
Positive | 299 | 79.3 |
Negative | 65 | 17.3 |
Unknown | 13 | 3.4 |
296 |
99 | |
Yes | 279 | 94.3 |
No | 17 | 5.7 |
373 |
98 | |
298 | 80 | |
No | 75 | 20 |
366 |
96.3 | |
Yes | 187 | 51 |
No | 179 | 49 |
380 | 100 | |
Male | 154 | 40.5 |
Female | 226 | 59.5 |
380 | 100 | |
Formal | 312 | 82.1 |
Informal | 68 | 17.9 |
170 |
44.7 | |
< R1000 | 55 | 32.4 |
1000–2999 | 58 | 34.1 |
3000–5999 | 22 | 12.9 |
6000–9999 | 12 | 7.6 |
10 000–15 000 | 11 | 6.5 |
> 15 000 | 11 | 6.5 |
298 |
99.9 | |
< 50 | 166 | 55.7 |
51–100 | 53 | 17.8 |
101–349 | 56 | 18.8 |
> 350 | 15 | 5.0 |
Unknown | 8 | 2.7 |
371 | 98 | |
Yes | 299 | 81 |
72 | 19 |
MDR, multidrug–resistant; TB, tubercu-losis.
Some data are missing as not all fields were completed by all the patients.
The vast majority (360/380; 94.7%) were from KwaZulu-Natal, and most reported that they lived in a formal dwelling (312/380; 82.1%). A majority reported that they were not currently formally employed (290/377; 76.9%), and most (113/170; 66.5%) reported a household income of less than R3000 per month. Less than half reported that they received a social welfare grant (154/374; 41.1%).
A minority (14/372; 3.8%) reported that they had no formal education, and few (64/372; 17.2%) had a tertiary education. Over three-quarters reported themselves to be HIV infected (299/377; 79%), and most of these reported they were taking anti-retroviral therapy (279/299; 93.3%). Just over half (187/366; 51%) had had previous TB. Most participants (299/371; 80.6%) reported having contact with someone who had MDR TB.
Most (287/371; 77.3%) did not know the names of their MDR TB medications; however, a majority (271/361; 75.1%) reported that they knew what MDR TB was. Most (341/376; 90.1%) said that they received information about MDR TB from a healthcare worker. Others had received information on MDR TB from various sources including printed material (12/376; 3.2%), television (5/376; 1.3%), a friend/family (15/376; 4%) and a Sangoma (2/376; 0.5%). Most were correct in stating that MDR TB was caused by bacteria (278/372; 74.7%). When further questioned around causes of MDR TB, a quarter (99/372; 26.6%) stated that MDR TB was also caused/ spread by witchcraft. There was a non-statistical association between female gender and a belief that MDR TB could be spread by witchcraft (
Knowledge of MDR TB.
Variable | Responses | % |
---|---|---|
361 |
95 | |
Yes | 271 | 75 |
No | 90 | 25 |
376 |
98.9 | |
Health worker | 341 | 90.7 |
Print media | 12 | 3.2 |
TV | 5 | 1.3 |
Family | 9 | 2.4 |
Friend | 6 | 1.6 |
Sangoma | 2 | 0.5 |
376 |
99 | |
Yes | 140 | 37.2 |
No | 236 | 62.8 |
376 |
99 | |
6 | 28 | 7.4 |
12 | 6 | 1.6 |
18 | 21 | 5.6 |
24 | 321 | 85.4 |
372 |
97.9 | |
130 | 34.9 | |
TB bacteria | 278 | 74.7 |
HIV | 137 | 36.8 |
Not taking TB treatment properly | 284 | 76.3 |
Witchcraft | 99 | 26.6 |
357 |
94 | |
Coughing | 336 | 94.1 |
Kissing | 114 | 31.9 |
Touching | 10 | 2.8 |
Sex | 34 | 9.5 |
380 | 100 | |
Loss of appetite | 280 | 73.7 |
Loss of weight | 292 | 76.8 |
Tiredness | 260 | 68.4 |
Chest pain | 275 | 72.3 |
371 |
97.6 | |
Yes | 84 | 22.6 |
No | 287 | 77.4 |
MDR, multidrug–resistant; TB, tubercu-losis.
Some data are missing as not all fields were completed by all the patients.
Patients could indicate more than one option.
With regards to MDR TB transmission, most (336/357; 94.1%) believed the disease to be spread by coughing. A third (140/376; 37%) knew what was meant by cough hygiene, a third thought that MDR TB could be caused by kissing or touching (124/357; 34.7%) and less than 10% (34/357; 9.5%) believed that MDR TB could be spread by sexual intercourse.
Most (277/380; 72.8%) correctly identified symptoms associated with MDR TB, and the majority (306/373; 82.0%) knew how MDR TB was diagnosed. Three-quarters (284/372; 76.3%) recognised that poor adherence to TB medication was an important cause of MDR TB. All reported that drug treatment was ‘the best’ treatment for MDR TB with only 9/367 (2.5%) reporting that herbal medication would also be of use in treatment. Most replied that the duration of treatment for MDR TB was 24 months (321/376; 85.4%). However, some thought that treatment duration was 6 months (28/376; 7.4%), 12 months (6/376; 1.6%) and 18 months (21/376; 5.6%). Most wanted more information on MDR TB (359/377; 95.2%), and 223/233 (95.7%) would like information in a booklet form and 220/232 (94.8) indicated that a helpline or help desk would be helpful.
The majority (365/378; 96.6%) recognised that MDR TB was a major problem in SA. A few (30/272; 11%) believed they had acquired MDR TB because they were being punished by God. A small percentage of participants felt that there was an association between promiscuity and acquiring MDR TB (39/280; 13.9%). Only a small minority were aware of the cost of treatment for MDR TB (69/375; 18.4%), and a majority were of the opinion that defaulters should be held accountable, for example, using a fine (261/368; 70.9%). Some knew of a patient with MDR TB who was defaulting (58/365; 15.9%). Most (323/373; 86.6%) felt that they were receiving adequate support from their doctor and could communicate readily with their doctor. A small minority would stop their MDR TB medication when they felt better (23/376; 6.1%), and only (16/380; 4.2%) would stop their treatment if they felt worse. Details of patients’ attitudes towards MDR TB are presented in
Attitude towards MDR TB.
Variable | Responses | % |
---|---|---|
378 |
99.4 | |
Yes | 365 | 96.6 |
272 |
71.6 | |
God | 30 | 11.0 |
Ancestors | 7 | 2.6 |
Evil spirits | 92 | 33.8 |
375 |
98.7 | |
Yes | 69 | 18.4 |
368 |
96.8 | |
Yes | 261 | 70.9 |
373 |
98.2 | |
Yes | 318 | 85.3 |
280 |
73.7 | |
Promiscuous | 39 | 13.9 |
Criminals | 10 | 3.6 |
Normal citizens | 216 | 77.1 |
Homeless | 35 | 12.5 |
Defaulters of TB treatment | 234 | 83.6 |
MDR TB contacts | 261 | 93.2 |
Those with HIV | 153 | 54.6 |
365 |
96.1 | |
Yes | 58 | 15.9 |
373 |
98.1 | |
Yes | 323 | 86.6 |
376 |
98.9 | |
Yes | 23 | 6.1 |
380 | 100 | |
Yes | 16 | 4.2 |
MDR, multidrug–resistant; TB, tubercu-losis.
Some data are missing as not all fields were completed by all the patients.
Patients could indicate more than one option.
Any study of MDR TB is important in KwaZulu-Natal as the province has one of the largest burdens of MDR TB worldwide, with an estimated prevalence of 30 MDR TB cases per 100 000 population.
A total of 380 patients from the largest MDR TB treatment facility in the province participated in the study. The site offers a centralised treatment programme, and there are advantages to such a programme, as specialist doctors and nurses can attend to patients and ensure continuity of care. The sample contained more female than male respondents (60% versus 40%). There may be an associated co-morbidity of MDR TB with HIV infection, and in KwaZulu-Natal, HIV transmission rates from men to women have increased and poverty, the low status of women and gender-based violence have been cited as reasons for the disparity in HIV prevalence between men and women.
The association between TB/MDR TB and HIV can be seen in the large percentage (79.3%; 299/377) of patients who were HIV positive. This is slightly higher than the 74.5% reported amongst patients with MDR TB at the same site in 2012.
The high percentage of patients with previous TB (187/366; 51.1%) highlights the association between previous TB and acquiring MDR TB
The literature recommends a need for ongoing research into multiple aspects of MDR TB, including social, economic and geographical factors.
Less than half of the participants received a disability pension, and most reported a household income of less than R 3000 per month, suggesting that many are extremely socially and economically vulnerable. It may be expensive for such a vulnerable patient to live in a city or travel from a distant home to a centralised MDR TB treatment site. Other MDR TB care models, such as community-based or home-based MDR TB care, may reduce patients’ financial burden. Data from this study support recommendations from other studies, which promote the establishment of decentralised MDR TB treatment programmes to reduce patients’ financial burdens in a high–MDR TB/HIV-prevalence setting such as KwaZulu-Natal, to improve patient adherence to medication.
Literature also describes the importance of patients’ knowledge of and attitudes to MDR TB in promoting adherence to MDR TB medication.
Most participants reported that they received information from a healthcare worker, and further study could focus on knowledge obtained from other sources such as television, family/friends and traditional healers. Any perceived association between source of knowledge and a belief that MDR TB could be caused by witchcraft or as a result of punishment from God would be useful. The perceived association between MDR TB and witchcraft found in the study has been also reported in studies carried out in Lesotho and Ghana.
It was of concern that some had no knowledge of the names of the medication, and this finding concurs with another study in which patients with MDR TB did not know the names of their medications.
Some respondents were incorrect in their knowledge around the duration of treatment and said they would discontinue treatment if they felt better or conversely felt worse. Although much lower in this study, the finding is supported by other studies, with a study in Tanzania reporting that up to 50% of patients with TB indicating that they would stop their treatment when ‘they feel better and think they are cured’.
Participants in the study recognised that MDR TB was a problem in SA and that adherence to medication was essential for successful treatment of MDR TB. It has been found that patients’ attitudes can have a more profound effect on MDR TB medication adherence than knowledge.
A limitation of the study may arise from a bias of responses in that respondents may shirk away from responding to questions that they feel are disapproved of in society – for example, responses around witchcraft. A second limitation lies in the fact that the questionnaire gathered information on patients’ reported knowledge. For example, they reported that they knew how MDR TB was diagnosed. Their actual knowledge may be incorrect and further study could assess their actual knowledge.
Information gained around attitudes from a closed-ended questionnaire may be limited as the questionnaire may not consider all potential variables around attitude. Triangulation of data could be carried out by various methods including (1) increasing the sample size, (2) repeating the study at other sites and (3) using differing data collection methods, for example, patient observation and focus group discussions.
The study of MDR TB is important because of the high incidence and prevalence in this area. In particular, a study of social aspects of MDR TB is useful. The patients attending the MDR TB Unit, which is a centralised unit, were relatively young, unemployed, with low levels of education and low income. This represents a very vulnerable population, and interventions must be sensitive to their contexts and cultures.
There is a clear need for ongoing education around aspects of the disease such as drug treatment, spread of the bacteria and duration required for treatment completion. Further research looking at the knowledge disseminated to patients by their families, friends and traditional healers may be useful. The role of traditional healers in MDR TB patient’s education requires future study. Studies on the prevalence of primary MDR TB are also necessary to confirm the high numbers found in the study and to further understand the spread of the disease and ways to reduce its transmission.
The authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article.
J.M. was responsible for writing the protocol, collecting data and writing the final manuscript. A.R. was the research supervisor and gave input and guidance on the protocol development and writing the final manuscript. N.R.M. contributed to the conceptual design of the protocol and analysis of data. L.C. contributed to the writing of the manuscript.