Loss to follow up within an HIV cohort

BHIVA guidelines recommend that all ARV-naïve and stable on-treatment patients are monitored at least 6 monthly [1]. Studies have shown that loss to follow up (LFU) not only worsens outcomes [2] but has increased potential for onward transmission. Case notes of 1275 HIV patients registered under our care up to January 2011 were examined for attendance within the previous 6 months. 788 (61%) patients had not been seen within the previous 6 months. Reasons for non attendance were identified. These are outlined below: 76% of the 130 LFU whose demographics were further examined were of Black African ethnicity, 54% female, 51% of single marital status and 48% of patients had been taking ARVs at the time of LFU. Interestingly, 53% of patients were lost to follow up within 1 year of diagnosis. The LFU patients (88) that had a local GP and a registered current address were sent recall letters. A small number of patients reengaged with care as a result of this action, some having not attended for over 5 years. Partner notification led to a number of new diagnoses in these cases. Failure to respond led to subsequent letters inviting them to clinic and finally a letter to their GP informing them of non attendance. In September 2011, a new recall system using Lillie Electronic Patient Records (EPR) was introduced to promptly recognise if a patient had not attended for care as planned. Prior to this, recall was a manual process carried out by the Health Advising Team. We conclude that within our cohort we had a particularly mobile group of patients; 455 (36%) transferring care to another clinic within the UK, 54 (4%) moving out of UK. 76% of the LFU group being of Black African ethnicity highlights the ongoing problem of retention of care in this group. Further exploration is needed to identify additional issues besides housing and immigration that lead to LFU. Furthermore, the disportionate number of patients (53%) disengaging with services within 1 year of diagnosis should encourage HIV services to provide additional support within this time period to reduce LFU. This study highlights the need for robust recall systems within clinics to identify those individuals not engaging with services or not attending for routine monitoring. These may be easier to implement with the increasing use of EPR. An audit of the recall system is planned in September 2012 to re-examine loss to follow up rates after its implementation.