Significant numbers of people with well-controlled HIV in Amsterdam report symptoms of post-traumatic stress disorder, Kevin Moody of the University of Amsterdam told the 19th European AIDS Conference (EACS 2023) in Warsaw yesterday.
Post-traumatic stress disorder (PTSD) occurs when a person has experienced a traumatic event and is unable to process the shock properly. Such events could include a serious injury, illness, or accident; being abused or sexually assaulted; multiple bereavements; being rejected because of stigma or prejudice; war, political violence or forced migration.
PTSD can cause flashbacks, nightmares, a powerful sense of dread, nervousness and an avoidance of reminders of the event. Memories of the event can also be affected and people often say they have difficulty concentrating as they are easily distracted by worries.
A previous systematic review suggested that 28% of people living with HIV have PTSD, but over half of the 38 studies in the review came from the United States and most others were from sub-Saharan Africa. Apart from two UK studies, there were none from Europe.
As part of a larger project asking people attending the Amsterdam Medical Center to complete surveys which included patient reported outcome measures before their clinical appointment, a screening tool for PTSD (PC-PTSD-5) was included. This asks firstly: “Have you ever experienced a traumatic event?”.
Those who have experienced such an event are then asked about experiences in the past month such as having nightmares about the event, avoiding situations that reminded them of it, being ‘on guard’ or watchful, feeling numb or detached, or feeling guilty about it. Those with three or more of these possible symptoms may have PTSD.
The 474 people completing the screening tool were predominantly male (85%), born in the Netherlands and other high-income countries (79%) and virally suppressed (99%). Half had been diagnosed for more than around 16 years.
Sixty-two respondents (13%) met the criteria for symptoms of PTSD. This exceeds the prevalence of PTSD in the general population (in global surveys, 4% of people who have experienced a traumatic event), and is comparable to figures for people with cancer (15%), people with chronic pain (10%) and military veterans (14%).
There were few demographic or HIV factors which distinguished those with symptoms from the larger patient cohort – in the first analysis there was a trend for those with PTSD symptoms to be more likely to be female, younger, born in a low- or middle-income country, diagnosed for slightly less time and with a higher CD4 nadir. People with PTSD were also more likely to report symptoms of anxiety, depression, fatigue and sleep problems, and to be socially isolated, to have concerns about self-image in relation to HIV and to have problems with housing, finances or migration status.
However, in a multivariate analysis – which is more reliable – only the following factors were significantly associated with PTSD symptoms – younger age (those with symptoms had a median age of 46, compared to 56 in those without), having symptoms of depression (48% vs 10%) and reporting fatigue (45% vs 13%).
One limitation of the study is that it assessed PTSD in people using an electronic patient portal. That resource may be less likely to be used by people with more economic challenges who are less familiar with the Dutch health system.
Moody said healthcare providers should consider including screening for post-traumatic stress disorder as a routine part of clinical care for all people with HIV. Even if clinicians are not trained in managing PTSD, they can work with the person living with HIV to identify preferred follow-up actions, such as referral to peer support or professional mental health services.
Moody K et al. PC-PTSD-5 self-reported screening tool introduced as part of routine clinical care detects high levels of clinically relevant PTSD symptoms in well-treated people with HIV. 19th European AIDS Conference, Warsaw, abstract OS1.O4, 2023.