[Viral failure in infants perinatally infected with HIV: A double punishment]. / Échec virologique chez les nourrissons infectés par le VIH par transmission périnatale : une double peine.

BACKGROUND: Considering the remarkable efficacy of the strategies for preventing mother-to-child transmission of HIV infection (PMTCT), failures are rare in high-resource countries and deserve further investigation. Moreover, infants have been found to be at increased risk of viral failure. We analyzed the factors related to the children's environment, including maternal psychological factors that may be associated with viral failure in children diagnosed before the age of 1 year. PATIENTS AND METHODS: Retrospective study of all HIV-infected infants, born in France between July 2003 and July 2013, diagnosed before the age of 1 year, cared for in a single reference center, comparing the group of children in viral success to the group of children presenting at least one episode of viral failure, using data available in their medical, psychological and social files. RESULTS: Out of 1061 infants included in the prospective PMTCT follow-up, eight infants were found HIV-positive and an additional six cases were referred from other centers before the age of 1 year, for a total of 14 children born to 13 mothers. Seven children presented durable optimal viral control (VL<50 c/mL) whereas seven others did not reach or maintain optimal viral control over time. The main difference between the two groups was the presence among the mothers of children with viral failure of severe psychological disorders, leading to treatment adherence problems in the mothers who were aware of their HIV status before pregnancy, and difficulties in giving their children's treatments correctly. CONCLUSIONS: Although seroconversion during pregnancy is responsible for a significant proportion of residual transmission in high-resource countries, severe psychological or psychiatric conditions in HIV-positive mothers play an important role on the risk of both MTC residual transmission and viral failure in their infants.

[Pediatric aids, 30 years later]. / Le sida pédiatrique, 30ans plus tard.

Thirty years after the first descriptions of AIDS in children in May 1983, the risk of viral transmission from mother to child has been reduced to almost zero and the disease in infected children has become an asymptomatic condition, stable in the long-term, thanks to antiretroviral drugs. Unbelievable though it may have seemed until the mid-1990s, children infected during the perinatal period are now growing up to be adults in a chronic, stable, asymptomatic medical condition with often satisfactory personal, family, and social lives. The French perinatal epidemiological cohort, which was set up in 1984 and has included more than 18,000 mother-child pairs to date, traces the steps in this extraordinary revolution in the prevention and treatment of HIV-1 infection in children.

Non-disclosure of a pregnant woman's HIV status to her partner is associated with non-optimal prevention of mother-to-child transmission.

Our objective was to study relations between non-disclosure of HIV to partner, socio demographics and prevention of HIV mother-to-child transmission (PMTCT), among HIV-infected pregnant women enrolled in the French Perinatal Cohort (ANRS-EPF-CO1) from 2005 to 2009 (N = 2,952). Fifteen percent of the women did not disclose their HIV status to their partner. Non-disclosure was more frequent in women diagnosed with HIV infection late in pregnancy, originating from Sub-Saharan Africa or living alone, as well as when the partner was not tested for HIV. Non-disclosure was independently associated with non optimal PMTCT: late initiation of antiretroviral therapy, detectable viral load at delivery and lack of neonatal prophylaxis. Nonetheless, the rate of transmission did not differ according to disclosure status. Factors associated with non-disclosure reflect vulnerability and its association with non optimal PMTCT is a cause for concern although the impact on transmission was limited in this context of universal free access to care.

[Impact of maternal HIV status on family constructions and the infant's relational environment during the perinatal period]. / Impact de la séropositivité maternelle au VIH sur les constructions familiales et sur l'environnement relationnel de l'enfant en période périnatale.

OBJECTIVES: To assess whether maternal HIV-positive status negatively affects family construction and the child's psychological environment. Could this be responsible for behavioral problems observed in children infected with or affected by HIV? MATERIAL AND METHODS: Interviews were conducted with 60 HIV+ mothers and their infants during the perinatal period, within 3 months of delivery, collected at the time of a pediatric outpatient visit within a PMTCT program. RESULTS: Half of the 60 mothers did not live with the infant's father, 56% of multiparous mothers were separated from their previous children. Sixty-five percent of the fathers were informed of the mother's HIV-positive status, although 90% of fathers who lived with the mothers were informed. During pregnancy, 80% of mothers reported psychological stress; after delivery, 72% of mothers suffered from not being allowed to breastfeed their infants, 43.5% expressed a fear of transmitting the infection to the child, and 40% avoided contacts with the infant. The impact of the mother's psychological stress and anxiety related to the risk of HIV transmission through breastfeeding and casual contacts were already noticeable in the first mother-child interrelations. CONCLUSIONS: Although the risk of MTC transmission in now very small, psychological troubles related to maternal HIV status may negatively affect the children's well-being and behavior, psychological support should be provided for mothers and children as part of comprehensive services.

[Consequences and experiences of the transition to adult medicine for young people living with human immunodeficiency virus (HIV)]. / Conséquences et vécu de la transition en médecine d'adultes des jeunes vivant avec le virus de l'immunodéficience humaine (VIH).

OBJECTIVES: Continuity of care is a major challenge for young people living with HIV, especially when transitioning from pediatric to adult care. A qualitative study was conducted in an attempt to explore and describe the transitions resulting from this change of care and to identify factors influencing this process. PATIENTS AND METHODS: Seven young adults, HIV-infected since childhood, with a median age of 25 years, with more than 2 years of experience since transitioning to adult care, participated in this qualitative research. Data were collected through semi-structured interviews. RESULTS: Becoming an adult has depended upon a double change in perception: leaving the cocoon of the pediatric ward made them feel more adult, but entering the adult universe where the disease is more visible and the environment more "cold" and "unfamiliar" made them feel more vulnerable. This "clash of worlds" creates a transformation leading to adulthood, where a relation based on mutual trust remains fundamental for the continuity of care and for pursuing the youth's personal development in the social and affective spheres. CONCLUSION: Self-construction on various levels (identity, social, affective) while maintaining regular medical care is the challenge of youth transitioning to adult care. A specific nurse-based consultation could be a useful tool for helping young people through this difficult process.

Long-term outcomes in adolescents perinatally infected with HIV-1 and followed up since birth in the French perinatal cohort (EPF/ANRS CO10).

BACKGROUND. Increasing numbers of children perinatally infected with human immunodeficiency virus (HIV) are reaching adolescence, largely because of advances in treatment over the past 10 years, but little is known about their current health status. We describe here the living conditions and clinical and immunovirologic outcomes at last evaluation among this pioneering generation of adolescents who were born before the introduction of prophylaxis for vertical transmission and whose infections were diagnosed at a time when treatment options were limited. METHODS. The eligible population consisted of HIV-1-infected children who were born before December 1993 and who were included at birth in the prospective national French Perinatal Cohort (EPF/ANRS CO10). RESULTS. Of the 348 eligible children, 210 (60%; median age, 15 years) were still alive and regularly followed up. Current treatment was highly active antiretroviral therapy (HAART) in 77% and 2 nucleoside analogues in 5.0%; 16% had stopped treatment, and 2% had never been treated. The median CD4 cell count was 557 cells/microL, and 200 cells/microL was exceeded in 94% of patients. The median viral load was 200 copies/mL. Viral load was undetectable in 43% of the adolescents and in 54.5% of those receiving HAART. Median height, weight, and body mass index were similar to French reference values for age, and school achievement was similar to nationwide statistics. Better immunologic status was associated with being younger and with having begun HAART earlier. Undetectable viral load was associated with maternal geographic origin and current HAART. CONCLUSIONS. Given the limited therapeutic options available during the early years of these patients' lives and the challenge presented by treatment adherence during adolescence, the long-term outcomes among this population are encouraging.

Correction of facial lipoatrophy using autologous fat transplants in HIV-infected adolescents.

OBJECTIVES: Antiretroviral therapy has dramatically improved the survival of HIV-infected children. Nevertheless, side effects comparable to those found in adults have been encountered, such as facial lipoatrophy, which can have a negative impact on the self-esteem of otherwise healthy adolescents. Cosmetic surgical procedures in adolescents raise psychological issues which need to be specifically addressed and which have never been previously reported in this population. We evaluated the patient satisfaction, safety and cosmetic results of HIV-infected adolescents who experienced autologous fat transplants for the correction of facial lipoatrophy. METHODS: We report the results of plastic surgery using autologous fat transplants (Coleman's Lipostructure) in six HIV-infected adolescents with facial lipoatrophy: three boys and three girls, aged 14-19 years. RESULTS: The quantity of reinjected fat on each side of the face varied from 5 to 12 mL within a single procedure. All the patients reported being satisfied or very satisfied with the cosmetic results and reported a positive impact on their daily life. CONCLUSIONS: With well-trained surgeons and carefully selected indications, corrective surgery of facial lipoatrophy in HIV-infected adolescents can provide immediate and long-lasting benefits in terms of physical appearance and psychological wellbeing, and should be considered as a component of comprehensive care.

[Psychosocial issues in HIV positive women during the perinatal period]. / Vécu des mères séropositives pour le VIH dans la période périnatale.

OBJECTIVE: To study the feelings of HIV infected mothers during the perinatal period regarding circumstances of HIV diagnosis, disclosure to partner and fear of contamination. POPULATION AND METHODS: A study based upon personal interviews was carried out from November 2003 to January 2004 upon routine pediatric outpatient visits for infants born to HIV positive mothers. RESULTS: This study included 54 women of which 70% were from Sub-Saharan Africa. Fifty-nine per cent discovered their HIV status during a pregnancy. Seventy-seven per cent of partners were informed of maternal status. Among the women reluctant to inform their partner, the main reasons given were fear of violence and separation. Seventy-two per cent of interviewed women refused their spouses to be informed by the medical staff. Medical care during pregnancy (moral support, delivery) was judged as good by a majority of women (90%) who found the behavior of the staff mostly satisfactory. Final child serology remains the most definitive test for mothers, 47% of whom fear the risk of a potential postnatal contamination of their children. CONCLUSION: In these isolated women, many of whom have recently discovered their HIV status, a multidisciplinary approach including psychosocial support is essential.

[Quality of life of adolescents surviving childhood acute lymphoblastic leukemia]. / Vécu des adolescents guéris d'une leucémie aiguë lymphoblastique.

PURPOSE: To evaluate how adolescents and young adults cured of acute lymphoblastic leukemia (ALL) treated during childhood have integrated the disease, and possible death related to cancer. Particularly, we have focused on experiences related to diagnosis announcement, hospitalisation and treatments and consequences on their social, psychological and somatic behaviour. PATIENTS: Forty-one patients cured of ALL have been enrolled in the study and answered one interview with clinical psychologist or research nurse. RESULTS: Although 60% of the patients argued that they think rarely of their disease, 10% thought about it every day. Traumatic evidence was detectable in most of them. Physical pain was the most reported stress, mainly during hospitalisation (93%), as well as psychological suffering (83%). Afterwards, the mostly often-reported stress was psychological pain (61%). Sixty-six percent declared that they still experience psychological and health consequences at the time of the interview, in some cases reported as a handicap in their life. In 83% of the cases they considered themselves as cured, nevertheless fear of relapse persisted in 1/3. Ninety percent said they have a pleasant life, 56% did not like to talk about leukaemia and 70% thought they could have died. For 85%, disease has been the most important event of their life and 75% testify to repercussions of the disease on their family (family relationship changes, overprotection, siblings difficulties). CONCLUSION: Most of these patients declared to be 'as the others' and developed life projects, but overcoming the pain experience of the disease remained difficult. This study emphasized the need for long-term continuous information and reinforces the importance of addressing treatment psychological and physical pain mainly after the initial hospitalisation period.

[Ethical dilemmas in the sharing of information in the care of HIV-infected children]. / Les dilemmes du partage d'information dans la prise en charge de l'infection à VIH chez l'enfant.

Ethical dilemmas are regularly encountered in the care of patients infected with HIV (Human Immunodeficiency Virus), especially in issues regarding professional confidentiality and shared information with the child and his/her family as well as among professional health workers. This communicable disease, which can be treated but not yet cured, leads to exclusion, due to the fear of infection, to its severity and induces stigmatisation of affected individuals. It interferes with life projects, sexuality, reproductive health, family life, projection into the future. In HIV paediatrics, practitioners regularly deal with complex situations and need to balance parental authority and children's needs/dependence, respect of patient's confidentiality and hazards to another person's health, potential negative impact of disclosing information and risks attributable to the lack of information.

[Factors impacting on antiretroviral therapy compliance in HIV positive adolescents]. / Observance du traitement antirétroviral de l'adolescent séropositif pour le VIH.

UNLABELLED: Is poor treatment observance frequently observed in HIV positive adolescent population, due to the adolescent developmental process, their experience of living with HIV, or lack of information on the disease or treatment? METHODS: We interviewed the 29 HIV positive adolescents followed up in one pediatric reference center. Confidential interviews were performed according to a standard questionnaire by psychologist and research nurse. RESULTS: Seventy-nine percent had stopped at least once a time their treatment who was the major barrier to their sense of freedom behind their adolescence (one-third of them decided to stop it more than one month), although 75% knew the potential consequences and had a good information about their seeks. Fifty-five percent expressed feelings of loneliness or depression, yet 75% consider they had a pleasant life because they had a normal life. In fact, the secret and silence about HIV were the price for this normality. CONCLUSION: Being dependent upon a treatment is a major constraint on the lives of HIV positive adolescents. Although they are fully informed, the deliberate interruption of treatment could attest of their expressed need for autonomy and medical prescription have to be careful with this problem.