Support needed to prevent missed clinic visits becoming long-term disengagement from care

Missed clinic visits may be unintentional or intentional, with complex reasons that change over time, according to qualitative research conducted with people with HIV in three African countries and published in PLOS Medicine. While the initial, practical reasons for non-attendance may pass, people are frequently reluctant to return to the clinic, owing to feeling shame about their absence and in anticipation of negative responses from care providers.

Over a lifetime of antiretroviral treatment, some absences are inevitable, the authors say. Efforts to prevent missed clinic visits are required, but so is work to minimise barriers to people coming back into care.

A systematic review has previously found that in sub-Saharan Africa around 30% of people who are not yet on antiretroviral (ARV) treatment are retained in care. On average, between 60 to 70% of patients remain on ARVs for two years after starting treatment.

Research has identified a number of factors which contribute to missed clinic visits – stigma, fear of disclosure, difficulties travelling to clinic, dissatisfaction with care, improved health, feeling discouraged and wanting to ‘give up’ and a desire to return to a ‘normal life’.

But, according to Norma Ware of Harvard Medical School, most studies simply report lists of the reasons that patients give, stopping short of deeper analysis. She therefore designed a large, qualitative study in order to explore these issues further.

Participants were recruited through three large clinics providing comprehensive HIV and AIDS care in Jos, Nigeria; Mbarara, Uganda; and Dar es Salaam, Tanzania.

In each setting, trained staff or volunteers known as ‘clinical trackers’ attempt to make contact with people who have stopped attending, either by phone or by home visits, in order to facilitate re-engagement with care.

Once standard clinical tracking procedures were complete, patients were asked if they were willing to be contacted by the researchers. Interviews, of an average duration of one hour, were conducted in the local language, exploring experiences of care at the clinic and the circumstances of missed appointments. (One limitation of the study is that the experiences of individuals who wished to avoid all HIV-related activities or who were impossible to contact are under-represented.)

Ninety-one individuals were recruited in this way. Their average age was 36, a little over half were female and three-quarters were employed. Their average journey time to clinic was 45 minutes (maximum three hours).

Findings

While the language of patients “defaulting” or “disengaging” implies that patients choose not to attend, the researchers found that the origins of missed visits were usually unintentional.

Interviewees had to deal with competing demands on their time. When demands stemmed from cultural and family obligations, or economic requirements, they sometimes took precedence over keeping clinic appointments. An individual could be required to travel for work, attend a relative’s funeral or care for a sick family member in a distant location. Moreover, plans were often complicated by unexpected events, as this interview quote illustrates.

“What caused me not to come to the clinic was that I lost my father. When he died, I went to [name of town] for the burial and the money that I had taken with me ran out. And so I had to first stay there to make some more to facilitate my return. When I was able to return to my home, I failed to get the money for transport to the hospital and so I started working to be able to earn the amount enough to facilitate my transport fare.”

Other unintentional reasons included misunderstandings about visit dates and forgotten appointments.

But some missed visits were intentional, often motivated by dissatisfaction with care. For example, some interviewees objected to long waiting times and restrictions on the dates and times when they could attend.

Moreover, a number of participants complained of “harsh treatment” by healthcare providers. This referred to staff who were perceived to be rude, rejecting, lacking in compassion, or who used “bad language”. Such experiences left patients feeling hurt, angry and humiliated.

“The first day I came, I didn't know I had to drop my card—hand card—by the door. So I came in and sat down where my friend said. The nurse there was so harsh that I didn't drop my card. She said all nasty things to me and at a point I said, ‘Amen! Let me just go.’ That was the first day; that was the first experience. I felt it was not a place to be. It was like I should just leave the hospital immediately.”

“Like my last clinic visit, it became too much. They really looked like they didn't care… Sometimes when you enter the doctor's room, they start conversing and talking about their own things while you just sit there and wait for them to finish.”

Absences were not usually the result of a single “reason”, but the product of a complex chain of events

The researchers report that prolonged absences were not usually the result of a single “reason”, but the product of a complex chain of events, which need to be examined together. For example, there may be more to “transport problems” than initially meets the eye. Take the case of this man who had not attended for two years.

“We fail to get vehicles sometimes. And when you go to look for money for [a motorcycle taxi] you find you do not have it. So when you miss your appointment and go to clinic on another day, [the provider] starts quarreling with you about not having come on the appointed day. And when you tell that person you got problems, he tells you, “You should spend the night on the road.” How can I spend the night on the road? Here I am, having failed to get money for taking me to the hospital and then I'm supposed to get money to spend the night somewhere and feed myself? These are some of the problems I have in going to the clinic.”

The authors say that the man stopped attending, not really because of transport difficulties, but due to the staff’s lack of understanding and flexibility.

Circumstances often change, and initial problems – such as money shortages or competing obligations – cease to be an obstacle to attendance. But many patients were nervous about difficult interactions with staff, should they attempt to resume treatment after an absence. Interviewees were afraid of being “abused”, “yelled at” and “chased from the clinic”.

“I was scared of coming back and them telling me that they will not accept me because I didn't come when they told me to. I was wondering whether they would accept me or not or whether they would scold me.”

Moreover, the interviews suggest that during patient education about antiretroviral therapy, stern warnings about adherence and a lifelong commitment to therapy can have unintended, adverse effects.

“When they accept us and open our files, they tell us this—that when you start, you should not stop. And if you know you will play with it, then do not start. So it was because I know I was wrong. That is why I said I will not be able to return.”

According to Norma Ware and colleagues, these accounts point to the exchange-based relationship between healthcare providers and patients. In return for access to lifesaving treatment, patients are expected to reciprocate with adherence to both medication and appointments.

“The commitment entails a moral obligation; missed visits are thus a moral failing,” she writes. The moral aspect makes sense of patients’ shame and the “scolding” of staff.

Overall, the findings suggest a process in which “unintentional and intentional missed visits evolve into a weakened sense of connectedness, reluctance to return, and, ultimately, disengagement from care”.

The authors recommend that clinicians need to address the reasons patients are reluctant to return and minimise the barriers to re-engaging with care, as well as prevent missed visits in the first place.