Cancer specialists not making decisions based on HIV status, but also not discussing HIV with patients

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A qualitative study explored factors that influenced how oncologists approached cancer treatment among people living with HIV in the US. The providers rarely discussed the intersection of HIV and cancer with their patients, often for confidentiality reasons. None had received specific training on HIV, and most reported treating HIV like any other chronic health condition. They did report routine communication with their patient’s HIV providers.

Compared to the general population, people living with HIV have an increased risk of getting and dying from cancer, which is the leading cause of non-HIV related death among people living with HIV in the US.

Disparities in mortality are at least partially caused by inadequate cancer treatment among people living with HIV. A previous survey of oncologists found that nearly one in four reported that they would not offer the standard of care to people living with HIV, even when their HIV was well controlled. That study uncovered stereotypes, such as beliefs that people living with HIV would not be adherent to their treatment or that treatment would not work as well for them.

Glossary

radiotherapy

A medical treatment using radiation (also known as radiation therapy). Beams of radiation may be produced by a machine and directed at a diseased area from a distance. Alternatively, radioactive material, in the form of needles, wires or pellets may be implanted in the body. Many forms of cancer can be destroyed by radiotherapy.

standard of care

Treatment that experts agree is appropriate, accepted, and widely used for a given disease or condition. In a clinical trial, one group may receive the experimental intervention and another group may receive the standard of care.

stigma

Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

sample

Studies aim to give information that will be applicable to a large group of people (e.g. adults with diagnosed HIV in the UK). Because it is impractical to conduct a study with such a large group, only a sub-group (a sample) takes part in a study. This isn’t a problem as long as the characteristics of the sample are similar to those of the wider group (e.g. in terms of age, gender, CD4 count and years since diagnosis).

qualitative

Qualitative research is used to explore and understand people’s beliefs, experiences, attitudes or behaviours. It asks questions about how and why. Qualitative research might ask questions about why people find it hard to use HIV prevention methods. It wouldn’t ask how many people use them or collect data in the form of numbers. Qualitative research methods include interviews, focus groups and participant observation.

This study sought to take a closer at knowledge, attitudes, and practices that influence how oncologists treat people living with HIV and cancer. Researchers held semi-structured interviews with 25 oncologists within two weeks of them having a consultation with a patient who had both HIV and cancer between 2019 and 2021.

Twenty of the providers worked at academic medical centres and five at community practices. Over half (56%) of the participants specialised in radiation oncology, followed by surgical oncology (24%) and medical oncology (20%).

Just over half the providers were female; the same proportion were White and a quarter were Asian.

Results

None of these cancer specialists had received formal education or training in HIV malignancies. Most said that they learned to treat people living with HIV on the job, while others did independent research:

“Well, I guess it's part of the general knowledge base during our training that we learn something about the differences in treating anal cancers in patients who have HIV and who don't, but I don't believe that I had a formal dedicated lecture or anything like that.”

The providers didn’t talk to their patients much about the intersection of HIV and cancer. One large reason was fear of inadvertently disclosing a person’s status when they had someone in the appointment with them:

“I guess there are certain considerations from a social standpoint; I want to make sure that the family members who are with the patient know and that the patients’ are okay with discussing their HIV diagnosis. Sometimes, that’s a difficult thing to approach because they are literally there in the room.”

Others reflected that they’d never really been asked:  

“I have not had a patient ask me, ‘How will this affect my HIV status?’ And I was thinking if I had had that question in the past, I would have been pushed to do more research on, ‘Well, how's this going to affect things?’ So, I haven't had any patients say I want a different type of treatment or less treatment or some other discussion about treatment related to HIV.”

Providers did not believe that their patients living with HIV were less likely to want specific treatments because of their HIV status. Many emphasised the importance of not generalising treatment recommendations because of status.

“There may be some [patients] that have preferences for or against certain treatments, and of course, their underlying health status will impact some of their preferences, but I would not ever generalize it to all HIV patients because I don't think that's true at all.”

While they seemed to view HIV like any other chronic health condition, many did highlight that their patients living with HIV often had high social and financial needs.

“I do think that there seems to be more challenges or difficulties in terms of access to care, logistics of getting here daily for radiation. Those sorts of things.”

Some referred all of their patients with both HIV and cancer to social workers, while others took an individualised approach:

“I don't think if you have a well-functioning person who just happens to be HIV positive, you need to automatically get a social worker to see the patient.”

Overall, 88% of the time there was at least some sort of other multidisciplinary provider involved with the care of their patient. Nearly all of the participants (92%) communicated with their patient’s infectious disease providers, but they didn’t often reach out directly unless something was unclear or whether further discussion was needed.

“I make sure my note is sent to the HIV doctor; I want to make sure I know who the patient's ID doctor is. If everything is within normal limits, I do not reach out unless I have to.”

Conclusion

Reassuringly, the providers in this sample did not report treating people differently or withholding the standard of care due to a person’s HIV status as found in previous surveys. However, the lack of opportunity to explicitly discuss HIV with patients is concerning. Attention to issues with stigma and confidentiality is a good thing, but it is important to ensure that awareness of higher socioeconomic needs among people living with HIV as a whole does not translate into making assumptions based on stereotypes.

The researchers call for considerations on treating people living with HIV to be included in oncologists’ initial training and subsequent professional development. They also suggest further dissemination of existing resources, since few participants reported consulting the clinical guidelines to inform decision making.

References

Henry V et al. Improving cancer care for people living with HIV: a qualitative study of provider knowledge, attitudes, and practice. International Journal of Radiation Oncology, Biology, and Physics, 116: 60-67, May 01, 2023 (open access).

doi: 10.1016/j.ijrobp.2023.01.045