People who miss appointments for HIV care are more likely to have money problems, childcare responsibilities and a history of depression according to a recent UK study. While poor attendance was more common in women, other demographic factors including ethnicity and sexual orientation were not associated with poor attendance. And there was little evidence that differences in the way services are provided affected engagement with care – probably reflecting the generally high quality of care provided at specialist HIV clinics in the UK.
Fiona Burns of University College London led the study.
A total of 983 patients attending seven London HIV clinics completed a survey on social factors and their experience of care. The data were linked to clinic records of medical issues and of attendance. Because the study was set up to better understand problems with engagement with care, the researchers attempted to recruit a greater proportion of patients with poor attendance than they would normally find – 550 respondents were regular attenders (had attended all appointments in the past year); 269 were irregular attenders (had missed at least one appointment); and 164 were classified as non-attenders (had recently disengaged with care for at least a year).
Otherwise the sample broadly reflects the patient population in London – six in ten were gay men, just over half were white, over a quarter were women, over a quarter were black African, and six in ten were born outside the UK. Whereas a quarter had been diagnosed in the past five years, half were diagnosed more than ten years ago.
There were statistically significant associations between poor attendance and the following demographic factors: female sex; younger age; less education; and more time since diagnosis of HIV.
But people born outside the UK, people of different ethnicities, and people of different sexual orientations were no more or less likely to have poor attendance than other people.
The researchers hypothesised that there could be factors which affect an individual’s physical or psychological ability to attend an appointment. For example, although people who rate their health as poor or fair might have more reason to attend a medical appointment than people in very good health, actually getting to the hospital could be harder.
The data showed that those with poor/fair health were more likely to have irregular attendance. Also, when respondents were directly asked why they had missed appointments, being too tired or too sick to attend was often given as a reason. People reporting problems with memory or concentration were also significantly more likely to have missed a recent appointment, as were individuals who used recreational drugs. Moreover, simply forgetting was an important reason given for missed appointments.
The researchers also looked at factors that could affect someone’s motivation to attend. There were statistically significant associations between poor attendance and low self-esteem, suicidal thoughts, depression and not feeling “in charge of life”. When asked why an appointment had been missed, feeling depressed was one of the most commonly given reasons. Moreover, issues related to internalised stigma such as not wanting to think about having HIV or fear of being seen at an HIV clinic were especially important for those who had had at least a year of non-attendance.
Turning to social factors which could make it easier or harder for people to attend clinical appointments, these showed some striking associations: while 27% of regular attenders had children, 34% of irregular attenders and 41% of non-attenders did; not always having enough money for basic needs was an extremely common problem for regular attenders (51%), but even more so for irregular attenders (65%) and non-attenders (66%); likewise, 14% of regular attenders sometimes went hungry, compared to 28% of irregular attenders and 24% of non-attenders.
The importance of these kind of barriers is illustrated by a quote from the qualitative component of the study. This patient had four children, two jobs and an abusive husband who was not working. “So whenever I had a free time, I was too exhausted even to think of coming to the clinic… I was always tired and the thing overwhelmed me. My mind was just concentrating at the immediate basic things in the house. My children, mortgage, work.”
Given the multiple and varied underlying drivers of poor clinic attendance, a one-size-fits-all method of improving engagement is unlikely to work, Fiona Burns concluded. But she suggested that a number of approaches may have potential – taking a systematic approach to identifying and tracing patients with missed appointments; providing multi-disciplinary, holistic support; making services more flexible; providing peer support and patient navigators; sending pre-appointment reminders; and providing transport tickets in advance of the appointment rather than reimbursing later.
The life expectancy for successfully treated people living with HIV in the UK is now similar to that in the general population but patients who engage poorly with care are at risk of poorer health outcomes and death. Engaging patients in HIV care remains a major challenge with little evidence available on the factors that need to be addressed.
We conducted a cross-sectional survey on experience of care and living with HIV for REACH (Retention and Engagement Across Care services for HIV in the UK). Patients attending seven London HIV clinics (May 2014-August 2015) completed the survey (N=990). We systematically recruited 557 regular attenders (RA: all appointments attended in past year), 269 irregular attenders (IA: one or more missed appointments in past year) and 164 non-attenders (NA: returned to care in past year after absence of a year or more). The sample was stratified to over-represent IA and NA.
The median age of patients was 44 years (IQR 37-51). 27.4% were female; 36.8% identified as heterosexual and 57.0% as homosexual; 53.4% were white, 28.1% were black African and 18.5% were from other ethnic groups; 41.0% were born in the UK; and 16.0% had no post-16yrs education.
Women were more likely to be NA (34.0%) or IA (29.3%) than RA (24.6%, p=0.05). Older people (>45yrs) were more likely to be RA (49.9%) than IA (37.6%) or NA (36.6%, p<0.001). Those who identified as homosexual were more likely to be RA (59.9%) or IA (56.9%) than NA (47.1%) whereas those who identified as heterosexual were more likely to be NA (40.8%) or IA (38.5%) than RA (34.9%, p=0.003). NA were more likely to have no post-16yrs education (20.5% vs IA=13.8%, RA=15.8%, p=0.02). There were no significant differences (p>0.05) in attendance pattern by ethnic group, country of birth, language or relationship status.