After the initial diagnosis of HIV infection and establishment of a care plan, ongoing regular engagement with HIV treatment services is known as “retention in care” and has been defined as having at least two monitoring visits with an HIV medical provider spaced at least three months apart within 1 year. Retention in care has been consistently shown to be an important factor influencing outcomes for HIV-infected individuals, including survival, suppression of HIV RNA levels, improved health outcomes, and lower risk of transmitting HIV.

Retention in care rates are higher for high-income compared with low- and middle-income nations, and for nations with universal healthcare. Retention in care in Australia is estimated to be relatively high by international standards. Using active follow-up of cases thought to be lost-to-follow-up, HIV treatment centres in Victoria were able to facilitate re-engagement in care and show that true rates of retention in care were higher than previously estimated.^[19]

Factors that have been associated with poor retention in care in high-income countries include drug and alcohol use, mental illness, being from an ethnic minority group, younger age, health belief systems and social barriers to care.^[20] Little specific data on factors associated with disengagement from care are available for Australia. A study of over 5,000 HIV-infected people attending six sites in Victoria found that disengagement with care was associated with being “well and busy”, transport and financial difficulties, psychological stressors or issues around acceptance of HIV diagnosis, active psychiatric illness, being from a non-English-speaking background and lack of access to Medicare services.^[21]

In order to facilitate retention in care, it is important to identify risk factors for disengagement and provide appropriate support to mitigate their potential effect on engagement in care. Strategies include developing positive therapeutic relationships, HIV education, including addressing negative health beliefs and providing support for psychosocial issues that could impact on care. Active monitoring of retention in care known as “data to care” can assist with re-linking those who lapse from care.