HIV clinicians in Spain underestimate their patients’ HIV-related symptoms

Despite advances in HIV care and treatment, a study has found a large proportion of people with HIV still experience symptoms that are underestimated or unacknowledged by their HIV doctors. Dr José Galindo Puerto of the Spanish AIDS Interdisciplinary Society (SEISIDA) and colleagues found discrepancies between the frequency and burdens of HIV and HIV treatment symptoms reported by Spaniards living with HIV and the HIV specialists caring for them. Their results highlight a need for better communication between clinicians and patients.

When experienced, HIV symptoms and HIV drug side effects are burdensome for people with HIV, impacting quality of life even when a person is virologically suppressed and has a strong immune system. Typically, the success of antiretroviral therapy is measured against its ability to rebuild and maintain a person’s immune system and suppress viral load with minimal toxicity. It is important to understand if there are additional aspects of therapy, beyond suppression and minimal toxicity, which are important to people living with HIV. If these are better understood, there may be greater opportunity for drug development and clinical practice to optimise quality of life.

The study

The study team sought to evaluate HIV-related symptoms reported by people with HIV and their doctors’ awareness of those symptoms. They also wanted to understand if the HIV clinicians felt these symptoms could be related to HIV treatment and lead people to stop taking treatment.

Surveys were completed by HIV specialist doctors and people with HIV in 2020. Participants were recruited from 18 sites (a combination of NGOs and hospitals) across six Spanish regions (Alicante, Sevilla, Pontevedra, Valencia, Madrid, Vizcaya, and Barcelona). The doctors were working in the HIV care units that the respondents living with HIV attended.

People living with HIV were asked to score the presence of symptoms and to score how burdensome they were, ranging from 1 (‘not bothersome’) to 4 (‘it bothers me a lot’). The survey was based on the HIV Symptom Index. Clinicians were asked to estimate the percentage of patients experiencing symptoms and the percentage of patients whose symptoms they believed may as a result discontinue their treatment. The questions for both groups were similar except where lay language was used instead of clinical language to ensure comprehension among respondents living with HIV.

A total of 502 people with HIV and 101 HIV specialists took part in the study. Three-quarters of the people living with HIV were male, their average age was 43 years old and over 90% had an undetectable viral load. On average, participants had been taking antiretroviral therapy for just over 10 years. Over 30% of people living with HIV were taking more than one pill a day.

Clinicians underestimate the burden of HIV-related symptoms

Patients and clinicians were asked which symptoms they had respectively experienced and perceived in the past four weeks. Overall, HIV specialists were less aware of the symptoms reported by patients. Between half and two-thirds of people living with HIV reported experiencing each of the following in the month before completing the survey: nervousness or anxiety, sadness, fatigue, sleep problems, or muscle/joint pain. However, clinicians estimated that only 22% to 27% of people with HIV experienced these symptoms. Moreover, between a third and half of patients experienced each of the following: difficulties remembering, sexual problems, bloating, headaches, diarrhoea, body changes, skin problems, and pain or numbness. Clinicians were most likely to underestimate the prevalence of gastrointestinal symptoms (such as bloating, pain, or gas in the stomach); 66% of patients reported them compared to 45% of clinicians.

As well as being asked about symptom frequency, patients were asked how bothersome symptoms were. In 10 of the 20 symptoms reported by people living with HIV, the degree of discomfort they caused differed significantly from that perceived by their specialists. The most bothersome symptom was sleeping difficulties (81%). Around 70% reported that symptoms related to their mental health or central nervous system (such as anxiety, sadness, depression and lack of energy) were bothersome, with a similar proportion reporting that for hair problems. The least bothersome symptoms (fever, chills or sweats and dizziness or light-headedness) were still bothersome for at least two in five patients.

Women were more likely to report symptoms than men. There was a weak correlation between number of symptoms and advancing age.

Almost half (47%) of respondents living with HIV had experienced at least one drug-related adverse event in the last month. They were asked about outcomes when discussing it with their HIV specialist, and just over 60% felt listened to and that their doctor took appropriate action. A quarter felt their doctor downplayed their experience and around one in five had to insist on receiving the required care.

In terms of adherence, 21% of participants had missed one or more than one dose in the last week, this increased to 47% in the last month. Clinicians considered depression, dizziness and sleep problems to be the most frequent cause of antiretroviral therapy discontinuation. Clinicians thought gastrointestinal symptoms were related to medication in 15 to 17% of all cases and resulted in HIV treatment discontinuation in approximately 10% of the cases.

Both groups reported high satisfaction with antiretroviral therapy, although clinicians actually reported lower satisfaction than their patients. All respondents were asked to score the importance of different antiretroviral therapy characteristics as either ‘quite’ or ‘very’ important. People with HIV and clinicians agreed that the most important characteristics of antiretroviral therapies were efficacy and low toxicity. While there were no differences according to gender, gay and bisexual men assessed all 11 characteristics as significantly more important than the heterosexual respondents.

Conclusion

A limitation of this study is that some symptoms may have had a cause not related to HIV or HIV treatment, especially as data were collected in the height of the COVID-19 pandemic. Nonetheless the findings provide important evidence of a disconnect between patients’ experiences and clinicians’ perceptions.

“Some symptoms may go unnoticed by physicians, which highlights the need to correctly address symptomology by having focused conversations with patients,” state the authors. In underestimating the frequency and burden of HIV-related symptoms there may be missed opportunities for person-centred care and improving the quality of life for people living with HIV in Spain.