BHIVA and the UK Health Security Agency (UKHSA), formerly Public Health England (PHE), are collaborating nationally to review late diagnoses and mortality among people with HIV. The protocol for reporting locally conducted late diagnosis reviews was developed following successful pilots in 2018. The national mortality review has been adapted from a London-wide review running since 2013.
While participation is voluntary, the BHIVA Audit and Standards Sub-Committee expects that clinical services will wish to take part in both initiatives in order to meet recommendations in BHIVA Standards of Care 2018.
Late HIV diagnosis has several negative impacts: it increases the risk of early mortality 8-fold, causes significant morbidity with big impacts on quality of life and can increase onward transmission. By understanding the reasons for late diagnoses and identifying where missed opportunities for testing occur, we aim to target interventions such as promoting testing to people at risk of undiagnosed HIV and supporting healthcare providers to offer testing where indicated. BHIVA Standards of Care 2018 recommends reviewing all late diagnoses of HIV with a lookback of previous engagement with healthcare services (Standard 1A).
A short-form version of the late diagnosis review protocol – collecting key summary data from locally conducted late diagnosis reviews – is now available for all services in England to complete. A pilot in the South East region in 2021 is exploring whether collecting more detailed data will produce intelligence that better addresses barriers to earlier testing. If successful, the long-form version will be made available for all services in due course.
Through this national review, we aim to better understand causes of death and preventable mortality among people with HIV and be able to monitor progress towards the UNAIDS/Fast Track City Initiative target of zero HIV-related preventable deaths. BHIVA Standards of Care 2018 recommends review of all deaths among people known to have HIV (Standards 4A and 8B). Participating services are requested to submit data on all known deaths among people with HIV, as selected deaths might be unrepresentative. An NHMR working group brings together regional representatives and expert specialists to review progress and findings and to guide future development of the review.
To be included in analysis, deaths which took place in 2020 should be reported by the end of June 2021. Any death submitted through NHMR does not need to also be submitted through HARS. Annual summaries will be sent back to all participating services/Trusts.