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ELECTRONIC ARTICLE: Gretchen M. Roberts, J. Gary Wheeler, Nancy C. Tucker, Chris Hackler, Karen Young, Holly D. Maples, and Toni Darville Nonadherence With Pediatric Human Immunodeficiency Virus Therapy as Medical Neglect Pediatrics 2004; 114: e346-e353 [Abstract] [Full text] [PDF]

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Strategies to increase adherence in HIV-infected children: striking soft may be better.

Alfredo Guarino, Fabio Albano, Vania Giacomet, Eugenia Bruzzese and Giulio De Marco   (8 September 2004)

Strategies to increase adherence in HIV-infected children: striking soft may be better. 8 September 2004
Alfredo Guarino, Associate Professor of Pediatrics Dept of Pediatrics, Univ. Federico II, Naples, Italy, Fabio Albano, Vania Giacomet, Eugenia Bruzzese and Giulio De Marco Send letter to journal: Re: Strategies to increase adherence in HIV-infected children: striking soft may be better. alfguari{at}unina.it Alfredo Guarino, et al.	We have recently reported non-adherence in 21/129 HIV-infected Italian children and found that the major determinant of non adherence was the relationship between the caregiver and the child. Namely, foster parents were more adherent than second degree relatives, and the latter were so compared to child’s parents (Acta Paediatr 2002;92:1398-402). There is no doubt that the caregiver is the primary target of interventions put forward to increasing children adherence. However, as pediatricians and therefore as advocates to the child, we believe that -although in principle the issues raised by the authors are well taken- their stepwise approach to ensure drug administration to HIV- infected children is rather an aggressive one, for the following reasons: 1) Taking the child away from parents is usually an irreversible action. The cases reported by the authors and consistent experience support this statement. 2) Going to the court is also irreversible. Calling a judge is like throwing an arrow. The judge usually takes the decision of immediately separating the child from parents, in the light of the clinical dangers. The rise of HIV viral load may be life-threatening, but –after all- not that immediately, as it allows some time for other less aggressive, maybe equally effective interventions. 3) In all six non adherent children described by Roberts, home health nurse visit failed. The authors openly admit that the nurses had no specific training in HIV infection. They also state that “logistic problems were the primary reason home visit failed”. These statements raise more than one problem when considering the subsequent steps. 4) We have observed that adherence is not a stable, but rather a dynamic phenomenon. When we reassessed adherence in the same 129 HIV-infected children, one year after the baseline study, we found that a substantial number of formerly non adherent children (caregivers) had become adherent. Conversely some adherent children (caregivers) lost their perfect adherence. Interestingly the final balance provided a stable ratio between adherent and non adherent children in either observation, around 15% of non adherence rates. 5) If the small population described by Roberts and coworkers would be considered as representative of children with HIV infection, not less than 10% of all HIV-infected children should be taken away from their parents. This is somehow embarrassing and suggests that such an intervention strategy is probably not appropriate to effectively solve the problem. Overall, many options are available to increase adherence rates. Among the latter, transferring drug administration from adult caregivers directly to children themselves, may be tremendously effective in increasing adherence. This should be done in combination with the disclosure of HIV- infection and as early as at 8 to 10 year of age. However, this should be done with professional psychological support and in close cooperation between the child’s caregiver and the medical staff. Likewise, it is an ethical obligation that all members of the professional staff, including doctors, nurses and social workers involved with children with AIDS, should be professionally trained.