Understanding reasons for treatment interruption amongst patients on antiretroviral therapy – A qualitative study at the Lighthouse Clinic, Lilongwe, Malawi

Figures & data

Fig. 1 Study population. Eligibility criteria were ≥15 years, documented treatment interruption of ≥21 days (between January 2008 and November 2009), resumption of ART. In total, patient characteristics of 347 patients were analysed, 147 B2C forms were entered into an MSAccess database and 26 in-depth interviews were conducted for descriptive analysis and to gain a further understanding of reasons for treatment interruption.

ART: Antiretroviral therapy; B2C: Back-to-Care; EDS: Electronic data system; LTFU: Lost-to-Follow up

Fig. 2 Reasons for treatment interruption. Relative frequency of reasons for treatment interruption as stated by patients in the B2C form n=147; multiple reasons per patient possible. Additional categories exceeding the scope of the pre-defined categories were derived from the comment field and are marked with a star: *.

B2C: Back-to-Care.

Table 1 Respondents’ characteristics: In-depth interview (n=26)

	Female (n=15)	Male (n=11)	Total (n=26)
Age
Median	26	32	30
15–19	3	0	3
20–29	7	3	10
30–39	3	5	8
40–50	2	3	5
Marital status
Single	1	2	3
Married	9	8	17
Divorced/separated	3	1	4
Widow	2	0	2
Occupation
Small scale business	6	4	10
Housewife	2	0	2
House servant/cook	3	0	3
Teacher	2	0	2
Student	1	0	1
(Truck) -driver	0	2	2
Gardener/farmer	1	2	3
Prisoner	0	1	1
Mechanic	0	1	1
Minibus caller	0	1	1
Duration on ART (months)^a
Only starter pack^b	3	0	3
2–6	6	6	12
7–12	1	2	3
13–24	1	2	3
25–36	2	1	3
>36	2	0	2

ART: Antiretroviral therapy.

^aDuration on ART prior to interruption period in months.

^bPatients initiated on ART receive a starter pack (14 day supply of stavudine and lamivudine).

Table 2 Factors supporting with drug adherence and retention in care in patients with documented treatment interruption (in-depth interviews; n=26)

Basic knowledge about HIV/AIDS and ART	Illustrative quotes
The patient was able to …
… differentiate between HIV and AIDS	HIV is a virus that causes AIDS, while AIDS is the accumulation of different diseases caused when body immunity is low. (Female, 29 years, 37 months on ART)
… describe the effect of ARVs	It is a type of medication that boosts one's immune system and it is taken in every day of one's life, when one is HIV positive. Again ARVs help to prevent opportunistic infections. (Male, 33 years, 28 months on ART)
… understand that ART is a lifelong therapy	Because the virus will not be healed but will remain in the body the rest of life. It does not mean that when we take the drugs, the HIV/AIDS will go, no. They are not like cough treatment where we get healed, so we need to take them the rest of our life. (Female, 17 years, on starter pack)
… describe the possible consequences of an interruption of ART	The importance is that when you adhere to treatment the virus cannot resist drugs and that we will have healthy life. (Female, 28 years, 22 months on ART)
Social support systems	Illustrative quotes
Disclosure to …
… relatives.	Disclosure to relatives: I told them to know so that I may get proper care and help when I am sick, and also to know where to seek care, better a government facility than a private clinic. (Female, 26 year)
… close friends.	Disclosure to spouse: So that he may as well go for HTC [HIV testing and counselling]. (Female, 33 years)
… employer, church leader and/or neighbour.	Disclosure to employer: So that he should not be surprised whenever I make an excuse to be absent from work to go to the hospital as it has happened today. (Male, 32 years)
Support group	We encourage each other and care for people who are very ill, that can't work on their own. (Female, 29 years, married)
Support through church/religion	They normally talk of how best an HIV patient can live as well as encouraging people to adhere to treatment. (Female, 39 years)
Treatment supporter/guardian*	I was advised to come for another counselling session with a guardian at a given date but a problem was which guardian [treatment supporter] I could bring since my wife is away, my brother is a busy person. (Male, 33 years)

AIDS: acquired immunodeficiency syndrome; ART: antiretroviral therapy; HIV: human immunodeficiency virus.

*All respondents had a documented treatment supporter; however, some patients stated challenges as shown in the illustrative quote.

Table 3 Reasons for treatment interruption (in-depth interviews; n=26)

Categories	Definition	Illustrative quotes
Travel (n=16)
Family related	Patient was travelling far in order to support family members. The distance to the clinic caused the treatment interruption.	I went to a funeral in Balaka, but failed to come back on time because I didn't have transport money. (Female, 22 years)
Work related	Patient was travelling far because of any kind of work, a job opportunity or assignment. The distance to the clinic caused the treatment interruption.	Since I am a labourer, I went to Dzalanyama to collect firewood, unfortunately had a car breakdown, slept there and did not carry my medicine. (Male, 44 years)
Financial barriers (n=7)
Transport cost	The patient could not afford the transport to the health centre, because of the distance and/or the lack of money.	Sometimes I even lack transport to come here from Chinsapo to collect my medication. (Female, 23 years)
Own health related (n= 6)
Adverse drug effects	The patient suffered from strong adverse effects of ART. He/she stopped treatment in order to improve his/her well-being.	I was having rashes, dizziness, stomach-ache and swollen legs (Female, 26 years)
Weakness/Sickness	The patient suffered from any symptoms not necessarily related to ART. He/she stopped because of illness.	I stopped because I was sick; had terrible headache and coughing (Female, 24 years)
Pregnancy/delivery	The patient was pregnant and or delivered a baby when she was supposed to collect drugs from LH/MPC. Her special condition detained her from collecting the drugs.	That time I had just delivered this baby so had no strength to walk to here. (Female, 33 years)
Health provider related (n=8)
Perceived rejection to receive ART re-fill	The patient felt/was told not to fulfil the requirements to collect ART at the centre. He/she therefore avoided going to the health centre.	I lost my health passport book through robbery. […] I thought that I could not be helped without this book. (Female, 42 years)
Disturbed relationship to health care provider	The patient experienced/perceived difficulties collecting new drugs from the health centre. He/she therefore avoided going to health centre.	I was afraid I could be shouted at by the Doctor (Female, 22 years)
General adherence (n=1)
Treatment fatigue	The patient was overwhelmed by the challenge to adhere to ART. He/she gave up and stopped therapy.	Laziness, and sometimes I take the medication without food, which raises fears in me. (Female, 23 years)