Adherence & Retention

Hello Alexander, All,
Certainly, there are obstacles to adherence that are unique to pediatric care. Here are some sources I came across while searching for comprehensive models to retain pediatric HIV patients. I’m sure it is not a complete list but it is a start…

Here are some resources from organizations who are addressing this:
- The Baylor International Pediatric AIDS Initiative (BIPAI) publishes some strategies on how to improve adherence in their Toolkit (http://bayloraids.org/toolkit/)—see step 5, page 36.
- The “Working Group on Antiretroviral Therapy and Medical Management of HIV-Infected Children. Guidelines for the Use of Antiretroviral Agents in Pediatric HIV Infection” is another helpful resource: http://www.aidsinfo.nih.gov/Guidelines/GuidelineDetail.aspx?MenuItem=Guidelin...
It was updated recently (Feb 23) and contains a section on adherence strategies summarized in Table 11. It is also a comprehensive resource for other issues related to ART in pediatric populations.

And some literature:
1) "All you need to know about HIV and ARVS Youth Booklet":A pocket size booklet containing basic information about HIV, AIDS, opportunistic infections (OIs), HAART, nutrition and positive living attitudes for teenagers. - an additional file to the article above.
Format: ZIP Size: 41.2MB ...

Hello Alexander, All,
Certainly, there are obstacles to adherence that are unique to pediatric care. Here are some sources I came across while searching for comprehensive models to retain pediatric HIV patients. I’m sure it is not a complete list but it is a start…

Here are some resources from organizations who are addressing this:
- The Baylor International Pediatric AIDS Initiative (BIPAI) publishes some strategies on how to improve adherence in their Toolkit (http://bayloraids.org/toolkit/)—see step 5, page 36.
- The “Working Group on Antiretroviral Therapy and Medical Management of HIV-Infected Children. Guidelines for the Use of Antiretroviral Agents in Pediatric HIV Infection” is another helpful resource: http://www.aidsinfo.nih.gov/Guidelines/GuidelineDetail.aspx?MenuItem=Guidelin...
It was updated recently (Feb 23) and contains a section on adherence strategies summarized in Table 11. It is also a comprehensive resource for other issues related to ART in pediatric populations.

And some literature:
1) "All you need to know about HIV and ARVS Youth Booklet":A pocket size booklet containing basic information about HIV, AIDS, opportunistic infections (OIs), HAART, nutrition and positive living attitudes for teenagers. - an additional file to the article above.
Format: ZIP Size: 41.2MB http://www.biomedcentral.com/content/supplementary/1471-2431-8-52-s2.zip
2) Antiretroviral therapy during infancy: essential intervention for resource-limited settings by Eley
http://www.ingentaconnect.com/content/ftd/eri/2008/00000006/00000005/art00007...
There is limited information regarding the outcome of infants treated with highly active antiretroviral therapy (HAART) in middle- and low-income countries. The mean/median age of children enrolled on HAART in these countries is generally high; however, it is acknowledged that untreated HIV-infected children under 2 years of age, including infected infants, are an extremely vulnerable group. This article assessed the findings of a recently published paper describing the outcome of 63 infants randomized to commence immediate or deferred HAART in a resource-poor setting and documented favorable short-term outcome in both groups, with correspondingly high adherence rates. The recent change in global treatment guidelines, recommending that all HIV-infected infants should be commenced on HAART soon after diagnosis, irrespective of their clinical status and/or immunological severity, is discussed in relation to the key findings of the article.
3) Adherence to antiretroviral therapy in young children in Cape Town, South Africa, measured by medication return and caregiver self-report: a prospective cohort study.
Full text: http://www.biomedcentral.com/1471-2431/8/34
Background:
Antiretroviral therapy (ART) dramatically improves outcomes for children in Africa; however excellent adherence is required for treatment success. This study describes the utility of different measures of adherence in detecting lapses in infants and young children in Cape Town, South Africa.
Methods:
In a prospective cohort of 122 HIV-infected children commenced on ART, adherence was measured monthly during the first year of treatment by medication return (MR) for both syrups and tablets/capsules. A questionnaire was administered to caregivers after 3 months of treatment to assess experience with giving medication and self-reported adherence. Viral and immune response to treatment were assessed at the end of one year and associations with measured adherence determined.
Results:
Medication was returned for 115/122 (94%) children with median age (IQR) of 37 (16 – 61) months. Ninety-one (79%) children achieved annual average MR adherence ≥ 90%. This was an important covariate associated with viral suppression after adjustment for disease severity (OR = 5.5 [95%CI: 0.8–35.6], p = 0.075), however was not associated with immunological response to ART. By 3 months on ART, 13 (10%) children had deceased and 11 (10%) were lost to follow-up. Questionnaires were completed by 87/98 (90%) of caregivers of those who remained in care. Sensitivity of poor reported adherence (missing ≥ 1 dose in the previous 3 days) for MR adherence <90% was only 31.8% (95% CI: 10.7% – 53.0%). Caregivers of 33/87 (38.4%) children reported difficulties with giving medication, most commonly poor palatability (21.8%). Independent socio-demographic predictors of MR adherence ≥ 90% were secondary education of caregivers (OR = 4.49; 95%CI: 1.10 – 18.24) and access to water and electricity (OR = 2.65; 95%CI: 0.93 – 7.55). Taking ritonavir was negatively associated with MR adherence ≥ 90% (OR = 0.37; 95%CI: 0.13 – 1.02).
Conclusion:
Excellent adherence to ART is possible in African infants and young children and the relatively simple low technology measure of adherence by MR strongly predicts viral response. Better socio-economic status and more palatable regimens are associated with better adherence.
4) Success with antiretroviral treatment for children in Kigali, Rwanda: experience with health center/nurse-based care, BMC Pediatrics
Full text: http://www.biomedcentral.com/1471-2431/8/39

Background:
Although a number of studies have shown good results in treating children with antiretroviral drugs (ARVs) in hospital settings, there is limited published information on results in pediatric programs that are nurse-centered and based in health centers, in particular on the psychosocial aspects of care.

Methods:
Program treatment and outcome data were reported from two government-run health centers that were supported by Médecins Sans Frontières (MSF) in Kigali, Rwanda between October 2003 and June 2007. Interviews were held with health center staff and MSF program records were reviewed to describe the organization of the program. Important aspects included adequate training and supervision of nurses to manage ARV treatment. The program also emphasized family-centered care addressing the psychosocial needs of both caregivers and children to encourage early diagnosis, good adherence and follow-up.

Results:
A total of 315 children (< 15 years) were started on ARVs, at a median age of 7.2 years (range: 0.7–14.9). Sixty percent were in WHO clinical stage I/II, with a median CD4% of 14%. Eighty-nine percent (n = 281) started a stavudine-containing regimen, mainly using the adult fixed-dose combination. The median follow-up time after ARV initiation was 2 years (interquartile range 1.2–2.6). Eighty-four percent (n = 265) of children were still on treatment in the program. Thirty (9.5%) were transferred out, eight (2.6%) died and 12 (3.8%) were lost to follow-up. An important feature of the study was that viral loads were done at a median time period of 18 months after starting ARVs and were available for 87% of the children. Of the 174 samples, VL was < 400 copies/ml in 82.8% (n = 144). Two children were started on second-line ARVs. Treatment was changed due to toxicity for 26 children (8.3%), mainly related to nevirapine.

Conclusion:
This report suggests that providing ARVs to children in a health center/nurse-based program is both feasible and very effective. Adequate numbers and training of nursing staff and an emphasis on the psychosocial needs of caregivers and children have been key elements for the successful scaling-up of ARVs at this level of the health system.

Hi Alexander
Here's one more resource that might be useful (specifically chapter 8,9,10,11):

Handbook on Pædiatric AIDS in Africa, by the African Network for the Care of Children Affected by AIDS (ANECCA), funded by USAID's Regional Economic Development Services Office with the production managed by Family Health International.

Revised in 2006, The Handbook on Pædiatric AIDS in Africa is an accessible, practical tool designed specifically for use by practitioners in resource-constrained African countries.

ANECCA is an informal network of health workers and social scientists committed to improving care for HIV-exposed and -infected children in Africa. You can download the handbook in English here: http://www.fhi.org/en/HIVAIDS/pub/guide/mans1.htm

Hi everyone,

This article, published today in BMC Pediatrics, investigates obstacles to and facilitators of adherence to ART in a pediatric population in Malawi:
http://www.biomedcentral.com/1471-2431/9/45 (open source)

ABSTRACT
Background
Ensuring good adherence is critical to the success of anti-retroviral treatment (ART).
However, in resource-poor contexts, where paediatric HIV burden is high there has been limited progress in developing or adapting tools to support adherence for HIVinfected children on ART and their caregivers. We conducted formative research to assess children’s adherence and to explore the knowledge, perceptions and attitudes of caregivers towards children’s treatment.

Methods
All children starting ART between September 2002 and January 2004 (when ART was at cost in Malawi) were observed for at least 6 months on ART. Their adherence was assessed quantitatively by asking caregivers of children about missed ART doses during the previous 3 days at monthly visits. Attendance to clinic appointments was also monitored. In June and July 2004, four focus group discussions, each with 6 to 8 caregivers, and 5 critical incident narratives were conducted to provide complementary contextual data on caregivers’ experiences on the challenges to and opportunities of paediatric ART adherence.

Results
We followed ...

Hi everyone,

This article, published today in BMC Pediatrics, investigates obstacles to and facilitators of adherence to ART in a pediatric population in Malawi:
http://www.biomedcentral.com/1471-2431/9/45 (open source)

ABSTRACT
Background
Ensuring good adherence is critical to the success of anti-retroviral treatment (ART).
However, in resource-poor contexts, where paediatric HIV burden is high there has been limited progress in developing or adapting tools to support adherence for HIVinfected children on ART and their caregivers. We conducted formative research to assess children’s adherence and to explore the knowledge, perceptions and attitudes of caregivers towards children’s treatment.

Methods
All children starting ART between September 2002 and January 2004 (when ART was at cost in Malawi) were observed for at least 6 months on ART. Their adherence was assessed quantitatively by asking caregivers of children about missed ART doses during the previous 3 days at monthly visits. Attendance to clinic appointments was also monitored. In June and July 2004, four focus group discussions, each with 6 to 8 caregivers, and 5 critical incident narratives were conducted to provide complementary contextual data on caregivers’ experiences on the challenges to and opportunities of paediatric ART adherence.

Results
We followed prospectively 47 children who started ART between 8 months and 12 years of age over a median time on ART of 33 weeks (2-91 weeks). 72% (34/47) never missed a single dose according to caregivers’ report and 82% (327/401) of clinic visits were either as scheduled, or before or within 1 week after the scheduled appointment. Caregivers were generally knowledgeable about ART and motivated to support children to adhere to treatment despite facing multiple challenges. Caregivers were particularly motivated by seeing children begin to get better; but faced challenges in meeting the costs of medicine and transport, waiting times in clinic, stock outs and remembering to support children to adhere in the face of multiple responsibilities.

Conclusions
In the era of rapid scale-up of treatment for children there is need for holistic support strategies that focus on the child, the caregiver and the health worker and which are situated within the reality of fragile health systems. The findings highlight the need for cost-free and less complex paediatric ART regimes and culturally appropriate tools to support children’s adherence.