Standards of Care and a new Patient Reported Experiences Measures (PREMs) survey launched to optimise HIV care for youth      

The19th Annual Chiva Conference on 4 April unveiled crucial updates to the Chiva Standards of Care, aimed at enhancing HIV services for children and young people up to age 25. Originally developed in 2009 and last revised in 2017, the 2025 edition reflects new clinical knowledge, patient needs, and service specifications.

Amanda Ely, CEO of Chiva, presented the key updates, including improved guidance on infant feeding, support for young people with additional needs, reference to prevention of onward HIV transmission, and alignment with England’s updated Paediatric Service Specification. The standards now cover care from before birth through adolescence and young adulthood, offering a holistic framework.

The standards emphasise requirements for mental health support, peer support, confidentiality, and meaningful youth involvement in decision-making. Care delivery is anchored by Lead Paediatric HIV Centres, including Imperial College NHS Trust, Great Ormond Street Hospital, St George’s University Hospitals, and Heartlands Hospital in Birmingham, alongside Special Interest Centres to ensure consistent access to expert care nationwide.

Another new tool launched at the conference was the development of the Chiva Patient Reported Experience Measures (PREMs), created to capture young people’s experiences of clinic appointments. It was co-designed with the Chiva Youth Committee (CYC), including consultations in February and October 2024. Dr Katja Doerholt, PID Consultant at St George’s Hospital, and one of the members of the CYC, explained the functionality of PREMs and how youth aged 15-18 provided feedback on the clarity, engagement, and relevance of questions, leading to a more accessible and effective survey.

The PREMs survey covers topics like confidentiality, access to care, clinic environment, and youth involvement in decision-making. Youth tested the tool in clinics using QR codes, with responses highlighting largely positive experiences of their clinic appointments. Young people mostly felt welcomed and well-informed but noted travel time and school absences as barriers. Feedback underscored the value of transparency and emphasised the need to improve logistics, such as clinic timing and privacy.

The PREMs survey is now being rolled out in clinics that care for 12-25 year olds who have grown up living with HIV, across the UK. Young people’s responses will periodically be shared with clinic staff to help them optimise clinic experiences. 

Clinics can request a PREMs resources pack by emailing [email protected].

Critical Reviewer: Nguilulu R. Messa, PhD Candidate, School of Pharmacy and Pharmaceutical Sciences, Trinity College Dublin