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May05

Why do people with HIV drop out of care?

Thursday, 05 May 2016

Aidsmap reports UK researchers are trying to understand more about the needs of people who have missed appointments at their HIV clinic.

Why do people with HIV drop out of care?

This article by Roger Pebody first appeared in aidsmap.com here.

Multiple social and health factors associated with irregular attendance at London HIV clinics. One-size-fits-all approach to improving engagement with care unlikely to be effective. 

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 presented the data to the Public Health England HIV Reporters’ Meeting last week. The study was also presented in a poster at the recent Conference on Retroviruses and Opportunistic Infections (CROI 2016).  

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. 

Five hundred and fifty 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
  • 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. 

Capability 

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. 

Motivation 

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. 

Opportunity 

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.” 

Possible interventions 

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. 

References 

Burns F et al. Barriers to regular attendance for HIV care: the REACH study. HIV Reporters’ Meeting, Public Health England, April 11 2016. 

Howarth A et al. Factors associated with Retention and Engagement in HIV care (the REACH survey). Conference on Retroviruses and Opportunistic Infections (CROI), Boston, abstract 996, 2016. 

View the abstract and e-poster on the conference website.

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