(1) Study population
From April 2015 to September 2016, the SNACS study enrolled 184 HIV-infected participants of whom 173 were between the ages of 5 and 18 years old (median age: 12.5 years, IQR: 9.5 – 14.9), 104 presenting with MAM and 69 with SAM, were included in these analyses. All but one participant had been infected through mother-to-child transmission. The mother or father was the primary caregiver in 44% and 8% of participants, respectively, while 48% lived with a surrogate caregiver who was an ascendant (grandparents, uncles, aunts: n=24), collateral (siblings, cousins: n=57), or a neighbour (n=2). Eighty-seven per cent were on ART at enrolment for a median duration of 48 months (15 – 75). Only 28% had had their HIV serologic status disclosed for whom the median time since the disclosure was 11 months (5 – 26). HIV status disclosure was associated with virologic suppression (<50 copies/ml, P<0.0001). Sixty-one per cent of participants recovered from wasting after a median follow-up duration of 29 days (16 – 65), 31% failed to reach BMIZ ≥-2 during the time of the study, 6% defaulted and 2% died. The overall median follow-up duration was 66 days (21 – 224), which increased from 30 days (16 – 115) among participants presenting with MAM to 156 days (85 – 275) in SAM participants (P<0.0001).
(2) Acceptability of RUF and feeding practices at week 2
Overall, 87%, 79%, 85%, and 80% of participants initially rated the RUF appearance (colour and texture), taste, smell, and mouth feeling, respectively, as good. Those who stated they disliked RUF taste perceived it as too salty (38%), too sour (24%), too greasy (24%) or too sweet (14%). Participants who disliked the mouth feeling stated it was too pasty (80%) or sticky (20%). However, up to 30% reported feeling at some point disgusted by RUF (Table 2), and 19% stated there had been occasions when they refused to eat it. At least one episode of diarrhoea and/or vomiting related to RUF intake was reported by 30% of participants at the first follow up visit, 2 weeks after initiating therapy. 24% of participants presented 1 to 3 episodes of diarrhoea and 12% presented 1 to 3 episodes of vomiting. The primary mode for eating RUF was directly from the sachet (85%) (Table 2). Many participants (63%) consumed RUF in place of breakfast, while others reported eating it just before (10%), or just after (12%) meals. Only 15% reported consuming RUF as a snack. At enrolment and week 2, 56% and 39% of participants, respectively, reached the minimum dietary diversity the day before the visit. One-third of the participants stated they hid from others when eating RUF (Table 2). The reasons given were fear of envious reactions (42%), arousing pity (19%), or teasing (16%), while 23% chose not to respond to the question. Occasional RUF sharing within the household was reported by 38% of caregivers and participants (Table 2). Caregivers reported that they felt: they (82%), other adults (53%), or other children (67%) in the household needed the RUF. Acceptability data were also compared by the severity of malnutrition and no remarkable association was found.
(3) Adherence to RUF
Most participants < 12 years were provided with 2 to 3 RUF sachets daily while most of their older counterparts received 3 to 4 sachets. If the maximum energy intake to be provided by RUF had not been limited to 2,000 kcal/d i.e. 4 sachets per protocol, 15 participants would have been prescribed 5 to 6 sachets daily.
At week 2, 31% of participants were sub-optimal RUF consumers which means they had consumed less than 50% of their RUF provision. Only 11% of participants reported they had consumed all the doses prescribed.
Overall, participants reported having consumed 61% (45 – 81) of their RUF at week 2. This proportion was stable (varying between 64% and 57%) throughout the follow-up among the remaining participants. The energy provided by RUF per kg of body weight was significantly higher in MAM participants than in their SAM counterparts in both age group. However, energy intake from RUF per kg of body weight was far lower than expected based on the prescription weight bands for all participants; while being significantly higher in the younger participants than in their older counterparts (Table 3).
In both age groups, there was no difference either in proportions of sub-optimal RUF consumers or proportions of RUF intake and energy intake per kg of body weight according to the severity of malnutrition.
(4) Factors associated with sub-optimal RUF intake
To identify factors associated with early sub-optimal intake, we ran a stepwise logistic regression model with sub-optimal RUF intake (yes/no) as the dependent variable. Dislike of the taste of RUF (aOR=5.0, 95% CI: 2.0 – 12.3), HIV-non disclosure (5.1, 1.9 – 13.9) and food insecurity (2.8, 1.1 – 7.2) were the major risk factors associated with early sub-optimal RUF intake (Table 4). There was no association between food insecurity and RUF taste appreciation, however, there was a significant interaction between these two variables in the multivariable model (p =0.001). Stratified analysis indicated that in the absence of food insecurity, proportions of sub-optimal consumers were similar whatever the RUF taste appreciation (Mantel-Haenszel Chi2 test probability =0.36), while in food-insecure households, dislike of the taste of RUF was strongly associated with a sub-optimal intake (p <0.0001).
(5) Expectations, perceptions and experiences of participants in the nutritional intervention
The qualitative analysis concerned a convenience sub-sample of 24 participants in Dakar of whom 9 were girls and 8 were enrolled as SAM (Table 5). Four FGDs were conducted: two FGDs with participants who recovered within the study (one group with HIV-disclosed and one group with HIV-undisclosed participants), one in each Dakar study site and two FGDs with those who failed or defaulted using the same format. Discussions last 1h30 on average. FGDs revealed that all the participants had similar expectations of the therapy. They were very concerned about their physical appearance, associating their skinniness with being short and weak. The SAM participants reported they had been frequently left out of school sports programmes or street football games due to their poor fitness. Participants expressed their strong motivation to gain weight when they started the study. Those who recovered from wasting demonstrated satisfaction and pride in having gained weight. Since youths generally define themselves through the eyes of others, they also perceived the signs of their body shape’s normalization in friends’ comments: ‘People tell me I’ve got big now! Big as a baobab tree! That I’ve got stronger and have calf muscles! That I’ve got more muscle!’ Boy, 9 years, HIV-undisclosed, recovery.
Most participants reported that those around them were not told that they were participating in a nutrition intervention; a strategy recommended by health workers to avoid RUF sharing. Managing the daily intake of RUF out of sight proved complicated in homes - sometimes polygamous - where there is practically no space for young people; in particular for boys, to have some privacy: ‘I used to hide on the roof terrace to eat (RUF) because I’ve got a little brother who spends the day asking questions about everything he sees. If I don’t give him some he tells his mother and she tells me to give him some.’ Boy, 12 years, HIV-disclosed, recovery. This daily effort by participants and caregivers to conceal consumption of RUF, however, is not always enough to avoid the sometimes necessary intra-familial sharing: ‘My grandfather takes some from me, and sometimes he takes a lot. One day 12 sachets went missing.’ Boy, 16 years, HIV-undisclosed, failure, as well as extra-familial sharing, which is sometimes deliberate: ‘My friends used to ask me to give them some. I used to steal them from my grandmother’s bedroom and I hid them like that (he gestures) and I used to give some outside.’ Boy, 11 years, HIV-disclosed, recovery.
This secrecy, also motivated by the desire to divert friends’ curiosity and comments; even from well-meaning adults shows the secrecy that surrounds HIV infection and taking ARV: ‘My friends used to ask me what I was taking. I didn’t tell them anything. You want to know my secret but I’m not going to say - because I can’t say!’ Boy, 14 years, HIV-disclosed, recovery. ‘Sometimes I meet people who tell me I’ve got bigger but I don’t tell them anything. I don’t want them to ask me.’ Boy, 8 years, HIV-undisclosed, failure.
Close follow-up visits at the hospital affected participants badly, worried that these repeated absences might arouse suspicion at school: ‘It used to bother me because I was absent too often. In the end, my classmates used to ask me what I had; sometimes it was my teachers. Only my teaching assistant knew that I was sick. It was my mother who went there. I don’t really know what she told them. My classmates used to ask me all the time why I was going to the hospital. I used to change the subject.’ Girl, 16 years, HIV-disclosed, recovery. Repeated absences could sometimes disrupt following classes and learning: ‘I lost marks because of my absences. Our lessons are long and catching up classes is complicated. It’s difficult to re-copy notes. It makes me tired.’ Boy, 12 years, HIV-disclosed, default.
The main divergence observed between participants who recovered and those who did not concerned the perception of RUF. The disgust of RUF, occurring early on or overtime, was a major constraint to RUF adherence: ‘We have an illness [HIV-infection] and on top of that we have malnutrition. My friends are well-built; more than me. I feel that I’m malnourished and I am until now. At the start, I wanted it [RUF]. I forced myself; I used to take four (sachets) per day. I even liked it but over time it was the smell. It disgusted me.’ Boy, 16 years, HIV-disclosed, default.
Nausea, diarrhoea and vomiting whilst taking RUF were most often reported by unsuccessful participants for whom this represented a huge obstacle: ‘The doctor asked me why I wasn’t putting on any weight. I told him every time I ate some I felt I was going to vomit. He said ‘Oh really?’ I replied yes. It was me that decided to give up.’ Girl, 8 years, HIV-undisclosed, failure.
Participants who recovered reported the various strategies they implemented to cope with the growing fatigue they felt in adhering to the RUF prescription, which consisted in alternating between modes of intake, or for some of the oldest, to allow themselves to have breaks of one to two days in RUF feeding. One participant, although affected by the study constraints, reorganized his daily routine around visits to the clinic and RUF feeding: ‘I had to take three and I set the times: at 7:30 am I used to get up and take it. At 12:30 pm I used to leave the room to go into the bedroom. At 7:30 pm I used to go into the bedroom, heat the water, cut [the RUF] in the cup with water. I’d stir it and drink it. I think about my health and growth above all. I’ve got used to it.’ Boy, 13 years, HIV-disclosed, recovery.