Associations with sub-optimal clinic attendance and reasons for missed appointments among heterosexual women and men living with HIV in London

Abstract

Poor engagement in HIV care is associated with poorer health outcomes and increased mortality. Our survey examined experiential and circumstantial factors associated with clinic attendance among women (n = 250) and men (n = 106) in London with heterosexually-acquired HIV. While no associations were found for women, among men, sub-optimal attendance was associated with insecure immigration status (25.6% vs. 1.8%), unstable housing (32.6% vs. 10.2%) and reported effect of HIV on daily activities (58.7% vs. 40.0%). Among women and men on ART, it was associated with missing doses of ART (OR = 2.96, 95% CI:1.74–5.02), less belief in the necessity of ART (OR = 0.56, 95% CI:0.35–0.90) and more concern about ART (OR = 3.63, 95% CI:1.45–9.09). Not wanting to think about being HIV positive was the top reason for ever missing clinic appointments. It is important to tackle stigma and the underlying social determinants of health to improve HIV prevention, and the health and well-being of people living with HIV.

Understanding the causes of missingness in primary care: a realist review

“…Ideas of ‘normal’ underpin a patient’s sense of acceptable or reasonable action (their habitus) and their sense of whether a service is ‘for me’ [ 40 , 81 ]. Patients may not attend an appointment because they no longer see any need or purpose—symptoms may resolve or be mild, they may have few complications, minimal concern, feel their condition does not impact upon their everyday lives or is manageable without further input [ 14 , 40 , 42 , 47 , 56 , 62 , 64 , 68 , 82 – 86 ]. This may be particularly so in the context of long-term health conditions where many appointments are set by service providers, not requested by patients [ 13 , 14 , 27 , 29 , 37 , 40 , 46 , 66 , 82 , 83 , 86 – 95 ].…”

“…Conversely, some patients experience a high degree of worry or fear around their health or their appointments and may manage that through denial or avoidance [ 40 , 46 , 48 , 62 , 64 , 96 – 99 ]. Many patients in adverse circumstances or with poor health have low expectations around what constitutes ‘normal’ health or may believe that healthcare can do nothing for them [ 8 , 11 , 48 , 59 , 62 , 64 , 66 , 69 , 96 , 100 , 101 ].…”

“…Conversely, some patients experience a high degree of worry or fear around their health or their appointments and may manage that through denial or avoidance [ 40 , 46 , 48 , 62 , 64 , 96 – 99 ]. Many patients in adverse circumstances or with poor health have low expectations around what constitutes ‘normal’ health or may believe that healthcare can do nothing for them [ 8 , 11 , 48 , 59 , 62 , 64 , 66 , 69 , 96 , 100 , 101 ]. If past experiences of seeking care and support have not been beneficial, or provider and patient are “misaligned” ([ 11 ], p.4) in their understanding of the causes or solutions to health problems, or of the format or purpose of appointments, this might increase the sense that future attendance is of limited value [ 11 , 50 , 62 , 64 , 71 , 83 , 86 , 93 , 102 , 103 ].…”

“…Many patients in adverse circumstances or with poor health have low expectations around what constitutes ‘normal’ health or may believe that healthcare can do nothing for them [ 8 , 11 , 48 , 59 , 62 , 64 , 66 , 69 , 96 , 100 , 101 ]. If past experiences of seeking care and support have not been beneficial, or provider and patient are “misaligned” ([ 11 ], p.4) in their understanding of the causes or solutions to health problems, or of the format or purpose of appointments, this might increase the sense that future attendance is of limited value [ 11 , 50 , 62 , 64 , 71 , 83 , 86 , 93 , 102 , 103 ]. Identification may be influenced by the dynamics of specific conditions—mental health conditions, dementia, cognitive impairment—which influence how patients understand their health or need for healthcare [ 50 , 87 , 103 ].…”

“…Studies report issues recruiting patients at risk of missing appointments, who may be less likely to participate in such research [ 42 , 44 , 52 – 59 ]. Some designs actively exclude relevant patient groups—for example, those with existing mental health issues, cognitive impairments, learning disabilities or who do not speak English [ 46 , 48 , 60 – 64 ]. Other methods are indirectly exclusionary, such as reliance on single, monolingual postal surveys, which may disadvantage those with no fixed address or who have literacy or language needs [ 45 , 65 , 66 ].…”