Long-term follow-up of uninfected children born to HIV-infected women and exposed to antiretroviral therapy: survey of parents’ and health professionals’ views

Abstract

Most uninfected children born to diagnosed HIV-infected women are now exposed to antiretroviral therapy (ART) in utero and neonatally and concerns have been raised over the safety of this exposure. To explore parents’ and health professionals’ views on the long-term follow-up of uninfected children two related surveys were conducted in the UK. Questionnaires were completed by 140 parents/carers and 40 health professionals. Most of the respondents in both surveys (96% overall) acknowledged that it was important to follow up children to identify possible side effects from ART exposure. Almost all respondents (99%) found at least one of the strategies acceptable: follow-up through the clinic, by telephone, post or using data linkage. A third of parents and nearly half of health professionals strongly objected to at least one strategy, mostly postal and clinic contact respectively. The majority of parents (98%) thought they should be told if a potential health risk associated with ART exposure was identified; 73% of parents wanted any direct contact to be through them even when the child had grown up. Almost all respondents were supportive of the rationale for follow-up and, while expressing a preference for certain strategies, generally did not dismiss others. However, developing a single form of long-term follow-up which is both acceptable and feasible is challenging.

Acknowledgments

We thank all those who completed the parent questionnaire and we are grateful to Positively Women for piloting the questionnaire. We thank the following health professionals for their invaluable assistance: S Hawkins (King's College Hospital, London); D Gurtin, B Ramaboea, H Caller (Homerton University Hospital, London); S Wong, T Fisher, C Tawana, H Noble, A Fakoya (Newham General Hospital, London); P Seery, EGH Lyall (Chelsea and Westminster Hospital, London); S Donaghy, S Storey, P Hay, A Adebiyi (St George's Hospital, London); R Cross (St Thomas’ Hospital, London); H Mactier (Princess Royal Maternity Hospital, Glasgow); L Miall (St James's University Hospital, Leeds); F Thompson (Northampton General Hospital, Northampton); R Jones (Wexham Park Hospital, Slough); R Ironton (Princess Anne Hospital, Southampton); T Gardiner (University Hospital of Wales, Cardiff). We also thank all respondents to the health professional survey. We are grateful to all members of the NSHPC team, and other colleagues at the Institute of Child Health, particularly Susan Cliffe and Lucy Pembrey. These surveys were undertaken as part of the CHART study, funded by the Medical Research Council. The NSHPC is funded by the Health Protection Agency. Research at the Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust benefits from R&D funding received from the Department of Health.