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INT J TUBERC LUNG DIS 6(4):307–312

© 2002 IUATLD

Factors affecting patient compliance with anti-tuberculosis


chemotherapy using the directly observed treatment,
short-course strategy (DOTS)

S. J. O’Boyle,* J. J. Power,* M. Y. Ibrahim,† J. P. Watson‡


* University of Leeds School of Medicine, Leeds, UK; † Unit of Infectious Diseases, Public Health Department, Sabah,
Borneo, Malaysia; ‡ Department of Respiratory Medicine, Leeds Teaching Hospitals NHS Trust, Leeds General
Infirmary, Leeds, UK

SUMMARY

S E T T I N G : Kota Kinabalu and surrounding communities education (P  0.05), and to be working (P  0.01).
in Sabah, Malaysia. More non-compliant patients had family members who
O B J E C T I V E S : To establish factors affecting compliance had had the disease (P  0.01). There was no difference
of patients with anti-tuberculosis chemotherapy, their between the groups for overall tuberculosis knowledge
knowledge of the disease, and views on improving the scores; however, non-compliant patients were more
DOTS strategy. likely to think that treatment could be stopped once they
D E S I G N : Interviews with compliant patients attending were symptom free (P  0.01). Most patients (73%) felt
clinics for DOTS treatment and with non-compliant pa- that the DOTS system could be improved by provision
tients in their homes, in August and September 2000. of more information about tuberculosis.
R E S U L T S : A total of 63 compliant and 23 non-compliant C O N C L U S I O N : Compliance with DOTS in the Kota
patients were interviewed. For non-compliant patients, Kinabalu area is affected by travel expenses, time spent
reaching the treatment centre entailed greater cost (P  travelling to treatment centres, and having family mem-
0.005) and travel time (P  0.005) compared to compli- bers who have had the disease. Patients would like more
ant patients. Cost of transport was the reason most fre- information on tuberculosis.
quently given for non-attendance. Non-compliant pa- K E Y W O R D S : tuberculosis; DOTS; South-East Asia;
tients were more likely to have completed secondary compliance

TUBERCULOSIS is a significant cause of morbidity not attended the clinic for treatment. If a patient is not
and mortality on the island of Borneo. Statistics from at home messages are left with friends or relatives. If
the Central Public Health Department in Kota Kina- patients subsequently fail to attend they are revisited.2
balu, the State Capital of Sabah, show that in 1999 Approximately 10% of patients become non-
there were 550 new reported cases, giving an incidence compliant, and the retrieval rate for such patients is
of tuberculosis amongst the general population of 175 59%.1 The aims of this study were to compare compli-
per 100 000 population.1 There were a total of 142 ant and non-compliant patients being treated for
deaths due to tuberculosis in Sabah: 80% of those tuberculosis in Kota Kinabalu, Sabah, Malaysian
affected were Malaysian and 20% were non-Malay- Borneo, to determine factors that may influence com-
sian, and most individuals were aged over 60 years.1 pliance, to establish reasons why non-compliant
Tuberculosis in Malaysia is treated using a combi- patients were not attending health facilities, and to
nation of four drugs, administered by directly observed seek patients’ views on how they thought the system
therapy at a clinic, in either daily or twice weekly treat- could be improved. This may allow improvements to
ment regimens.2 At the time of this study there were 76 be made to the administration of the directly ob-
dispensaries and 134 rural health clinics, and there are served treatment, short course (DOTS) strategy.
aims to increase this number.1 Patients are deemed to
be non-compliant when they have missed more than 7
PATIENTS AND METHODS
consecutive days of treatment. If patients are identified
as non-compliant, a specialist defaulter tracing team A questionnaire was designed to assess the demo-
visits their home address to establish why they have graphic details of the patients, the treatment and side

Correspondence to: John Watson, Department of Respiratory Medicine, Leeds Teaching Hospitals NHS Trust, Leeds Gen-
eral Infirmary, Great George Street, Leeds LS1 3EX, UK. Tel: (44) 0113 392 5296. Fax: (44) 0113 392 6316. e-mail:
john.watson@leedsth.nhs.uk
Article submitted 29 June 2001. Final version accepted 29 December 2001.
308 The International Journal of Tuberculosis and Lung Disease

effects of their disease, the costs to them of treatment, from a study by Liam et al.3 One point was awarded
their knowledge of tuberculosis and its treatment and for each correct answer, to a maximum score of six.
their views on how the DOTS system could be The question: “Should patients eat with their fami-
improved. In Malaysia tuberculosis is diagnosed using lies?” was included because family meals are cultur-
clinical, radiological and or bacteriological evidence. ally important, and unnecessary isolation may add to
Three sputum specimens are collected for direct the stigma of the disease.
smears for acid-fast bacilli and for culture. All tuberculosis treatment is free to patients in
The questionnaire was used in two clinics between Sabah; however, as patients must pay their own travel
10 August 2000 and 26 September 2000 in Kota Kin- costs a level of expense is incurred. Another cost to
abalu. All patients were receiving treatment under patients was the time taken to travel, wait for their
DOTS protocols, and all were interviewed by one of consultation and then return home from the clinic.
the authors (SJO or JJP), in the health facilities where Patients were asked how long it took them to travel.
they were receiving treatment, with the help of nurses This was converted into an opportunity cost index for
to translate the questions from English into Malay. All the patient by multiplying the time taken for the
patients with a diagnosis of sputum smear-positive pul- patient to travel to the centre by the total cost of
monary tuberculosis attending for treatment during transport, using the formula: Cost of travel (Ringets) 
this period (n  63) were asked for consent to be inter- travel time (minutes)  opportunity cost of treatment
viewed; none refused. The patients were at various (at the time of writing $1 US  3.8 Malaysian
stages in their treatment, and at the point of interview Ringet). Travel time and travel cost are likely to be
all had been fully compliant, as assessed by an analysis related, and multiplying may overestimate the cost
of their treatment records. The questionnaire was also incurred by travel time. However, it was felt that this
administered whilst on visits with the defaulter tracing provided the most realistic reflection of opportunity
team during the same time period to the homes of non- cost of attending the clinic in this study.
compliant patients (n  23). The same questions were Patients were given a list of suggested improve-
asked using the defaulter tracer team workers as trans- ments to DOTS from which they could pick more
lators. Patients classified themselves as native (Malay- than one or make suggestions of their own. The sug-
sian) or non-native in the questionnaire. gestions given were mobile clinics, financial aid with
The patients’ knowledge of tuberculosis and its travel for the very poor, out of hours clinics, involve-
treatment were assessed by six questions adapted ment of family members in administration of the

Table 1 Details of patients’ sex, ethnic group, level of education and occupation

Compliant Non-complaint
patients patients
n (%) n (%) P value
Sex 0.1
Male 37 (58.0) 16 (69.6)
Female 26 (41.3) 7 (30.4)
Admitted to hospital for TB 0.1
Yes 29 14
No 34 9
Affected family members 0.01
Yes 21 14
No 42 9
Side effects with treatment 0.1
Yes 49 14
No 14 9
Symptoms today 0.1
Yes 35 14
No 28 9
Nationality 0.005
Native Malaysian 17 (27) 14 (60)
Non-native 46 (73) 9 (40)
Education
None 26 (41) 10 (43) 0.5
Up to primary school only 24 (38) 4 (17) 0.05
Completed secondary school 13 (21) 9 (40) 0.05
Occupation
Not working 39 (62) 2 (9) 0.01
White collar 5 (8) 7 (30) 0.01
Student* 1 (2) 11 (48) 0.01
Labourer 18 (29) 3 (13) 0.2

* A student is defined as anyone currently studying in primary, secondary or tertiary education.


Factors affecting compliance with DOTS 309

Table 2 Patient income and costs involved with attending for The mean (standard deviation) age of the entire
treatment. Values are expressed as mean (standard deviation) interviewed population was 34 (14.3) years. There
Category Compliant Non-compliant P value was no statistically significant difference between the
ages of the compliant (mean 34.9 [13.61] years) and
Income/month, US$ 103.28 (134.51) 99.08 (74.12) 0.5
Travel cost ,US$ 0.41 (0.30) 0.66 (0.26) 0.01 the non-compliant groups (mean 31.5 [16.12] years).
Travel time (mins) 20.58 (19.35) 44.56 (55.83) 0.005 Table 1 shows details of patients’ ethnic group, their
Opportunity cost 45.18 (98.04) 170.26 (295.18) 0.005 level of education and occupation. The P values indi-
cated are for comparison between compliant and
non-compliant groups.
treatment, and provision of more information on
No statistically significant differences were found
tuberculosis.
between the groups for sex differences, past hospital-
Statistical analysis isation, side effects, income, knowledge or age. A
The link between compliance status and native origin, higher proportion of non-compliant patients were
hospitalisation, sex, having family members who had native Malaysian. Significant differences were found
had the disease, age, occupation, education and the between the groups for level of education. Non-
presence of side effects, was assessed using Yates cor- compliant patients were more likely to have com-
rected 2 tests. Differences between the compliant pleted secondary education (P  0.05). There were
and non-compliant groups with respect to income, also differences in occupations between the groups.
cost of travel to the centre, amount of time spent Non-compliant patients were more likely to be white
travelling to the centre and the opportunity cost of collar workers (P  0.01) and students (P  0.01).
travelling to receive treatment were compared using Compliant patients were more likely to be not work-
the Mann-Whitney test. ing (P  0.01).
Logistic regression was used to identify which fac- The incomes, travel times, travel costs and oppor-
tors were independently associated with compliance tunity cost index for the two groups are shown in
status. Calculations were performed using Excel ver- Table 2. There was a significant difference between the
sion 7.0 (Microsoft 1997) for t-tests and 2 tests and cost index (opportunity cost) paid by non-compliant
SPSS version 10.1 (SPSS Inc, Chicago, IL) for regres- and complaint patients (P  0.003). After adjusting
sion and MannWhitney tests. for this difference by logistical regression the differ-
ence between natives and non-natives was not signif-
RESULTS icant (P  0.387). Therefore, cost and travel time
taken together as a representation of opportunity cost
Demographic details are more important factors than nationality.
A total of 86 interviews were conducted in the study: Because of the close correlation between travel cost
with 63 patients in the compliant group and 23 and travel time, it was not possible to determine which
patients in the non-compliant group. of these may have a greater effect on compliance.

Table 3 Patients’ knowledge of tuberculosis

Compliant Non-compliant Total


n (%) n (%) n (%) P value
How is TB transmitted? NA
Droplets 36 (57.1)* 11 (47.8)* 47 (54.7)*
Eating utensils 23 (36.5)* 3 (13.0)* 26 (30.2)*
Don’t know 13 (20.6)* 11 (47.8)* 24 (27.9)*
Should you eat with family members? 0.05
Yes 32 (50.8) 16 (69.5) 48 (55.8)
No/unsure 31 (49.2) 7 (30.5) 38 (44.2)
Does your family need to be screened for TB? 0.05
Yes 51 (81.0) 17 (73.9) 68 (79.1)
No/unsure 12 (19) 6 (26.1) 18 (20.9)
Is TB curable with proper treatment? 0.2
Yes 59 (93.7) 19 (82.6) 78 (90.7)
No/unsure 4 (6.3) 4 (17.4) 8 (9.3)
Can TB be cured with 4 weeks treatment? 0.2
Yes/unsure 34 (54) 15 (65.2) 49 (57)
No 29 (46.0) 8 (34.8) 37 (43.0)
Can treatment be stopped once you are symptom free 0.01
even though the prescribed treatment duration
has not been reached?
Yes/unsure 16 (25.4) 13 (57.5) 19 (33.7)
No 47 (74.6) 10 (43.5) 57 (66.3)

* Respondents may have answered with more than one option.


310 The International Journal of Tuberculosis and Lung Disease

Table 4 Reasons for non-compliance with treatment than one improvement for DOTS. A high proportion
% of
of the patients (72%) indicated that they would like
Reasons for not complying patients more information about tuberculosis. The patients in
Unable to afford transport 55
the non-compliant group were more keen to improve
Unable to get transport 17 the strategy, and 95% indicated that they would like
Lack of motivation 14 more information about tuberculosis.
Thought they were cured 14

DISCUSSION
Knowledge of tuberculosis and knowledge scores This study shows that a major factor influencing com-
For each correct answer one point was awarded (to a pliance with DOTS is the cost and time of travelling
maximum score of six). The answers are summarised to a treatment centre, as non-compliant patients pay
in Table 3. The mean (SD) knowledge score for the significantly more than compliant patients. Of the
compliant group was 4 (1.2) and for the non-compliant non-compliant group, 55% indicated that they had
group it was 3.5 (1.34). not attended the clinics for financial reasons. The pro-
The difference between the groups was not statisti- vision of free drugs alone is therefore not sufficient.
cally significant (P  0.089). However when the ques- Possible solutions to this problem may be to provide
tions were analysed individually, a significantly greater a mobile service or to provide travel aid for the very
proportion of compliant patients correctly answered poor. Of the whole population in this study, 44%
the question: “Can treatment be stopped once you are indicated that financial aid would improve the sys-
symptom free even though the prescribed treatment tem, although some patients felt that financial aid was
duration has not been reached?” (P  0.01). a potential area for abuse. The introduction of reim-
bursement on production of a receipt may reduce
Reasons for non-attendance such a potential. The investment of resources required
The reasons given by non-compliant patients for not for such measures might prove cost effective if
attending the clinics are shown in Table 4. The major- improved compliance results in fewer relapses and
ity said that cost and availability of transport were less drug resistance.
the main problems. The non-compliant patients also spent more time
travelling to the treatment centre than the compliant
Suggested changes to the DOTS strategy patients. The time spent travelling to the centre could
The results of the suggested improvement to DOTS be used for other purposes. This was reflected by the
are displayed in the Figure. No spontaneous sugges- opportunity cost statistic that indicated that the oppor-
tions were made. Only 10% of patients interviewed tunity cost of travelling to the centres was higher for
suggested that there was no way in which DOTS non-compliant than compliant patients. For those in
could be improved; these were all patients in the com- employment, travel time represents time absent from
pliant group. Many of the patients suggested more work, and although this was not specifically explored

Figure DOTS improvements: opinions of compliant and non-compliant patients.


Factors affecting compliance with DOTS 311

in this study, it may explain why there were more patients. Neither interviewer spoke Malay, and nurses
white collar workers among the non-compliant and were used to interpret the questions for patients.
more non working patients among the compliant The patients in the compliant group were at vari-
group. ous stages in their treatment, and it is possible that
No data were available on the geographical dis- some may have become non-compliant later. The
tances that the patients lived from the health facilities, effect of this on our results would be to reduce the dif-
but it was felt that travel time and cost would be more ferences found between the groups. A study limited to
relevant to patients than simple kilometres. compliant patients completing treatment may over-
After correcting for travel time and cost, there was come this, but it was not possible within the time
no significant difference between the natives and non- available.
natives’ compliance rates. This is consistent with the Tracing the patients who had failed to attend for
study by Liam et al.,3 which found no relationship treatment was a difficult task. Tracing defaulters in
between compliance and immigration status. urban squatter communities frequently results in fail-
When patients were asked for their views on how ure.7 There may therefore be a selection bias in the
treatment could be improved, 74% of the total and non-compliant group in this study.
95% of the non-compliant patients replied that they
would like more information. Either information
CONCLUSION
about tuberculosis is not being given, or the informa-
tion that is given is not understood. This was reflected Patient compliance with DOTS in the Kota Kinabalu
in the assessment of knowledge about TB, where very area of Sabah is affected by travel expenses and the
few patients scored full marks. In contrast to previous amount of time that patients must spend travelling to
studies,4 we found no differences in the overall knowl- treatment centres, knowledge of the importance of a
edge scores between the groups. However, non- full course of treatment, and having family members
compliant patients were more likely to think they who have had the disease. This study suggests that
were cured when their symptoms had ceased, even reducing travel costs, travel time and the opportunity
though the full course of treatment had not been com- cost of attending clinics for tuberculosis patients in
pleted. This was consistent with other studies that the Kota Kinabalu area of Sabah may improve com-
found that this was a cause for patients defaulting on pliance rates. This may be achieved by having more
treatment,5 and needs to be addressed. Compliance clinics or a more mobile service. Improved education
with anti-tuberculosis treatment is enhanced if for patients, their families and the general population
patients receive adequate educational programmes.6 may also improve compliance.
Information about tuberculosis has been demon-
strated to be most effective when given as one-to-one Acknowledgements
counselling.4 We are grateful to the Central Department for Public Health, Kota
Family members were affected in significantly Kinabalu, Sabah, Malaysia, for assistance with the study, and Dr
more of the non-compliant than the compliant group. Bailey for help with statistical analysis.
Financial sponsorship was received from LEPRA, the Associa-
This may be because non-compliant patients are more
tion of Physicians, the Centenary and Hardwick Fund and the
likely to pass the disease on to their contacts, but Dora Ratcliff Memorial Fund, UK.
there may be other factors, such as the increased cost
burden on the family affecting compliance, or altered
attitudes to the disease. However, this also represents References
an opportunity, in that involving families, and not 1 Plan of Action, Tuberculosis Control Programme, Sabah
just the current patient, in tuberculosis education may 1998–2001. Sabah: Unit of Infectious Diseases, Health Dept,
help to improve compliance. Involving the family in 2000.
2 Guidelines for chemotherapy of tuberculosis. Kuala Lumpur,
treatment was advocated by 50% of the patients. Malaysia: Ministry of Health Malaysia, National Tuberculosis
As the sampled population were patients with an Centre, 1994.
active interest in the disease, it is apparent that more 3 Liam C K, Lim K H, Wong M, Tang B. Attitudes and knowledge
health education programmes are required for the of newly diagnosed tuberculosis patients regarding the disease,
whole population in Sabah. Such education pro- and factors affecting treatment compliance. Int J Tuberc Lung
Dis 1999; 3: 300–309.
grammes should include more accessible information
4 Cuneo W, Snider D E. Enhancing patient compliance with tuber-
sources, such as patient information leaflets, posters culosis therapy. Clin Chest Med 1989; 3: 375–379.
and radio and television advertising. Mobile road 5 Mori T, Shimao T, Jin B W, Kim S J. Analysis of case finding pro-
shows might be considered in less accessible areas, in cess in Korea. Tubercle Lung Dis 1992; 73: 225–231.
schools, and in the workplace. 6 Morisky D, Malotte C, Choi P. A patient education programme
to improve adherence rates with anti tuberculosis drug regi-
mens. Health Educ Q 1990; 17: 253–267.
Weaknesses of this study
7 Beyers N, Gie R, Schaaf H. Delay in the diagnosis, notification
The sample size of this study would ideally have been and initiation of treatment and compliance in children with
larger, but was limited by our ability to interview tuberculosis. Tubercle Lung Dis 1994; 75: 260–265.
312 The International Journal of Tuberculosis and Lung Disease

RÉSUMÉ

C A D R E : Kota Kinabalu et les collectivités voisines à terminé leur formation secondaire (P  0,05) et d’être au
Sabah en Malaisie. travail (P  0,01). L’atteinte de membres de la famille
O B J E C T I F S : Déterminer les facteurs influençant l’adhé- était plus fréquente chez les patients non-adhérents (P 
sion des patients à l’égard d’une chimiothérapie anti- 0,01). On n’a pas observé de différence entre les groupes
tuberculeuse, leur connaissance de la maladie et leur en ce qui concerne les scores de connaissance de la tuber-
vision sur l’amélioration du système DOTS. culose. Toutefois, les patients non-adhérents étaient plus
S C H É M A : Interviews de patients adhérents fréquentant susceptibles de penser que le traitement peut être arrêté
les dispensaires pour traitement DOTS et de patients après disparition des symptômes (P  0,01). La plupart
non-adhérents à leur domicile entre août et septembre des patients (73%) pensent que le système DOTS pour-
2000. rait être amélioré si l’on fournissait plus d’informations
R É S U L T A T S : On a interviewé 63 patients adhérents et au sujet de la tuberculose.
23 non-adhérents. Pour les patients non-adhérents, le C O N C L U S I O N : L’adhésion à l’égard du DOTS dans la
fait de se rendre au centre de traitement entraînait un zone de Kota Kinabalu est influencée par les dépenses de
coût plus élevé (P  0,005) et un temps de déplacement transport, le temps nécessaire pour se rendre dans les
plus élevé (P  0,005) par comparaison aux patients centres de traitement et la présence d’une maladie chez
adhérents. Le coût du transport a été la raison la plus d’autres membres de la famille. Les patents souhai-
fréquemment citée pour la non-fréquentation. Les teraient plus d’informations au sujet de la tuberculose.
patients non-adhérents étaient plus susceptibles d’avoir

RESUMEN

MARCO DE REFERENCIA : Kota Kinabalu y las comu- (P  0,05) y de estar trabajando (P  0, 01). Un número
nidades vecinas, en Saba, Malasia. más importante de no cumplidores tenían miembros de
O B J E T I V O S : Determinar los factores que afectan el cum- la familia afectados por la tuberculosis (P  0,01). No se
plimiento del tratamiento antituberculoso, el conoci- constató una diferencia entre los grupos con respecto a
miento de los pacientes sobre la enfermedad y su opinión los «scores» de conocimientos sobre la tuberculosis. Sin
sobre el mejoramiento del sistema DOTS. embargo, los no cumplidores tenían más probabilidades
M É T O D O : Entrevistas de los pacientes cumplidores que de pensar que el tratamiento puede ser suspendido
asisten a los dispensarios para el DOTS y de los pacientes cuando desaparecen los síntomas (P  0,01). La may-
no cumplidores en sus domicilios, durante agosto y setiem- oría de los pacientes (73%) pensaban que el sistema
bre de 2000. DOTS podría ser mejorado si se diera más información
R E S U L T A D O S : Se entrevistaron 63 pacientes cumpli- acerca de la tuberculosis.
dores y 23 no cumplidores. Para los no cumplidores, lle- C O N C L U S I Ó N : El cumplimiento del DOTS en el área de
gar al centro de tratamiento significaba un costo (P  Kota Kinabalu está afectado por los gastos de trans-
0,005) y un duración del viaje (P  0,005) superiores, en porte, por el tiempo necesario para dirigirse al centro de
comparación con los cumplidores. El costo del trans- tratamiento y por la presencia de un enfermo en la
porte fue la razón más frecuentemente dada para justifi- familia. Los pacientes desean más información sobre
car la ausencia. Los no cumplidores tenían más probabi- la tuberculosis.
lidades de haber completado la educación secundaria

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