Insights from the Chiva Research Plenary: Advancements in Paediatric HIV Research and Patient-Centred Care
In the research plenary at the Chiva Conference in March 2024, presentations led by Dr Katja Doerholt from St George’s University Hospitals NHS Foundation Trust and Professor Ali Judd, University College London, shed light on various aspects of HIV research and patient-centred care (PCC) strategies for children and young people living with HIV.
Amanda Ely (Chiva CEO) and members of the Chiva Youth Committee shared findings from a recent youth consultation on clinic attendance experiences to inform the development of clinic surveys.
Prof Judd’s presentation focused on findings derived from the historical CHIPS (Collaborative HIV Paediatric Study) data. Notable updates included insights from studies published in 2023 such as the evolution of CD4 counts among young individuals who initiated antiretroviral therapy (ART) less than a decade ago.
Another study explored the incidence of Covid-19 among children and young people living with HIV, revealing mild infection rates.
Ongoing research initiatives highlighted trends in obesity within the CHIPS cohort and investigations into long-term, non-progressors in the studies within the EPPICC (European Pregnancy and Paediatric Infections Cohort Collaboration) cohorts, alongside assessments of the effectiveness of specific ART treatments.
Furthermore, new research ideas were proposed, encompassing long-acting ART, estimating long-term survival, and analysing outcomes associated with second/third-line ART usage. Plans to access CHARS (Childrens HIV and AIDS Reporting System) data were also discussed to improve research efforts, and clinic teams encouraged to continue to submit their paediatric HIV reports.
Dr Doerholt’s presentation focused on the importance of ensuring patient-centred care (PCC) for children and young people living with HIV, emphasising the importance of placing children and young people at the forefront of healthcare practices. Tools, including Patient Reported Experience Measures (PREMs) and Patient Reported Outcome Measures (PROMs) were discussed as a means to assess patient clinic experiences and health and wellbeing outcomes effectively. Plans were outlined for Chiva to begin PREMs and PROMs development, with an emphasis on engaging with young people and other stakeholders to ensure inclusivity.
Amanda Ely and members of the Chiva Youth Committee shared insights into the experiences faced by children and young people during clinic attendance from a group consultation conducted to inform the development of a clinic survey on patient experiences (PREM). Methods applied were group discussion, using a collective storytelling approach to build a character based on shared experiences in the group. This revealed the emotional toll, physical exhaustion, and logistical burdens associated with clinic visits.
Overall, attending a clinic can have a significant impact on daily life, routines and educational experiences. It can be stressful and tiring, money can be a problem even if able to claim costs back as funds are needed upfront.
The consultation also included young people coming up with potential clinic survey questions associated with the themes derived from the character development exercise.
Chiva will take these questions forward to produce a draft clinic survey to be piloted in two lead peadiatric centres in the coming months. The themes and questions identified in the consultation will also inform the development of PROMS which Chiva will begin developing as a strategic priority. This places quality of life and wellbeing as key health related outcomes.
This session offered an insight into a holistic approach to HIV research and patient care, emphasising the importance of understanding patient experiences, maintaining longitudinal studies to understand long term health outcomes and treatment effects, and fostering meaningful engagement of young people in the research process.
