INTRODUCTION

Patients living with both HIV and cancer experience disparities in cancer treatment and outcomes in the United States. Compared with the general cancer population, people living with HIV (PLWH) and cancer (PLWHC) are less likely to receive treatment and have significantly elevated cancer-specific mortality for many common cancer types.1–3 As cancer becomes the most common cause of non–AIDS-related death and life expectancy for PLWH with modern HIV treatments is near typical expectancy,4,5 timely and appropriate cancer treatment for PLWHC is critical.

Among other patient and health system factors, clinician factors contribute to the observed differences in cancer outcomes. A national survey of medical and radiation oncologists found that a major factor driving differential treatment for PLWHC was physician behavior. When presented with vignettes, 21% of physicians reported changing their treatment regimen in PLWH, even with well-controlled HIV infection. Of note, the survey found that 45% of oncologists did not communicate with HIV specialists while treating PLWHC, and over 90% felt they lacked sufficient information about interactions between antiretroviral therapy (ART) and chemotherapy.6,7 The lack of knowledge and well-defined treatment guidelines is partly because PLWH have historically been excluded from clinical trials; thus, data on treatment safety and efficacy have been limited.8

Physician recommendations drive the cancer therapy that patients receive,9,10 yet there is limited information assessing how cancer treatment decisions are made for PLWHC. Although there are published studies examining chemotherapy-related immunosuppression, drug interactions between cancer treatment and ART, and toxicity of cancer treatments,6,11 oncologist perspectives of the barriers and facilitators to delivering optimal care have not been explored. This study aimed to better understand oncologist decision-making in cancer care for PLWHC by eliciting barriers and facilitators of care, as well as recommendations for enhancing cancer care delivery.

METHODS Sampling and Recruitment

We enrolled 25 oncologists between May 2019 and May 2021 for in-depth interviews. Participants were recruited from the University of Utah (n = 13), Duke University (n = 7), and community practices in Georgia, Louisiana, Indiana, Massachusetts, and Virginia (n = 5). University providers were identified using patient record reviews based on an algorithm that recognized clinic visits of PLWHC. To minimize recall bias, providers were offered enrollment if the clinic visits with PLWHC occurred within the past 3 months. Community practice oncologists were recruited from an online oncology community. We did not have access community practice records; therefore, enrollment was based on self-report of having a consultation with PLWHC within the past 2 years. Informed consent was obtained, and the study was approved by the IRB of the academic medical centers.

Procedures

In-depth interviews were conducted by trained members of the academic center's research core. The semistructured in-depth interview guide included open-ended questions and follow-up probes to gain an understanding of the oncologist's clinical decision-making (see Table 1 for a description of the interview guide). Interviews were audio recorded with participant consent, conducted in-person pre–COVID-19, and conducted by Zoom during the pandemic. The average length of the interviews was 24 minutes. Demographic information was collected, and participants were offered a $50 gift card.

TABLE 1. - Description of Interview Guide Section Sample Questions Impact of HIV on treatment recommendation How do you view HIV as compared with other comorbidities?
Do you have concerns about the effect of the HIV or antiretroviral therapy on your recommended cancer treatment? Initial HIV questions Do you feel that it is important to discuss their HIV status?
How do you decide whether or not to discuss HIV in a consultation? Decision support tool questions What information or training, if any, have you received about treating patients with HIV and cancer?
Are there specific challenges that oncologists face when managing patients with HIV? Patient preferences Some oncologists think that patients with HIV are less likely to want certain treatments. Do you agree or disagree with this? Why or why not? Care coordination How useful do you think it is to talk with an HIV specialist or HIV pharmacist to manage this patient's care?
What would improve or facilitate these types of consultations to maximize helpfulness and minimize inconvenience? Participants demographics How often do you see patients with HIV?
How many years ago did you complete your last year of medical training?
Data Management and Analysis

The interviews were transcribed, and identifiable information was redacted. The deidentified transcripts were stored in Box, a secure online platform, and audio recordings were deleted after the transcription was uploaded. The textual data were coded and analyzed using the qualitative research software ATLAS.ti (Scientific Software, Berlin, Germany). The codebook was created using an inductive approach consistent with Crabtree and Miller's Editing Approach; a process of developing codes for salient concepts as they emerged during the analysis process.12 The analysts reviewed the transcripts and drafted an initial code list. To ensure intercoder reliability, 2 analysts (J.Y. and P.G.) cocoded 20% of the transcripts. After initial coding, they discussed discrepancies and further revised the code list. After reaching a consensus on codes and code meanings, transcripts were coded by the lead analyst (J.Y.) using the final code list. The research team discussed the distribution of codes to prioritize and organize the final stage of data analysis. Extracted quotations and code frequency data were used to draft and refine a coding report through several iterations with team feedback.

RESULTS Description of Sample

The sample included 14 females (56%), 10 males (40%), and 1 unspecified. Fourteen participants (56%) were radiation oncologists, 6 (24%) were surgical oncologists, and 5 (20%) were medical oncologists. Fourteen (56%) identified as White, 6 (24%) as Asian, 1 (4%) as Black, and 4 as “others.” In addition, of the 19 participants (76%) who reported years since they had completed residency, 48% had finished in the past 10 years and 8% over 20 years ago (see Table 2 for participant characteristics). Zero participants report having received formal training on HIV malignancies, and they stated that their knowledge on the topic had been obtained through practice or supplemental education.

TABLE 2. - Participant Demographics Variables Frequency (n = 25) Percentage (%) Gender  Female 14 56  Male 10 40  Not listed 1 4 Age  30–39 9 36  40–49 12 48  50–59 1 4  60–69 3 12 Race  Asian 6 24  Black 1 4  White 14 56  Others 4 16 Ethnicity  Hispanic 1 4  Non-Hispanic 21 84  Not listed 3 12 Subspecialty  Medical oncology 5 20  Radiation oncology 14 56  Surgical oncology 6 24 Years from residency  1–5 5 20  6–10 7 28  11–15 4 16  16–20 1 4  21–25 1 4  26+ 1 4  Did not share years since residency 6 24 Years from fellowship  1–5 5 20  6–10 4 16  11–15 1 4  16+ 2 8  Did not complete a fellowship 13 52

Below, we present themes that emerged as barriers and facilitators to providing care in both the initial consultation and during cancer treatment for PLWHC (Table 3).

TABLE 3. - Representative Quotations Barriers and Facilitators Code Frequency, N = Total Quotes (%, Total Quotes/No. of Participants) Illustrative Quote Intake/consult  Facilitators Information gathering 24 (96%) “You could envision a scenario where you had a fractured medical record where the patient was being managed by an infectious disease doctor, but you didn't have access to the notes, didn't even know the person, you didn't know what the lab values were, and that would be more problematic.” P16  Barriers Patient confidentiality 21 (84%) “I can't really think of a scenario when I would say, “Oh, it's inappropriate to discuss HIV with the patient,” with the caveat of the confidentiality issue. So that's where—if you're going to start talking about the patient's HIV, you need to make sure that they're comfortable with any other family members or friends who may be present with them. And so that's where you have to invite the family members to step out, talk to the individual, and—you don't really need the family members there when you talk about HIV issues.” P16 During treatment  Facilitators Interdepartmental communication 23 (92%) “I do have concerns about that [the effect of ART on cancer treatment]. Most of the time it's just a matter of me calling their ID provider and sort of having a conversation about what needs to give, what happens if they're off their antiretrovirals for a brief period of time. If I get a moderate drug interaction, sometimes I'll call their HIV doctor to just say, “Hey, are you still prescribing these medications when they're taking this, or is this something I should really avoid?”” P24 Medication adherence 20 (80%) “They are also more used to taking lots of medications, so at some level, they are more adherent and more at peace with taking medications than other types of patients who don't take them.” P19  Barriers Drug–drug interactions and concerns for elevated toxicity 22 (88%) “And then the other challenge that I do find a lot is a lot of the prescription medications that I would typically give for symptom management, when I go to prescribe them, I find that there's interactions with their HIV medications and so it becomes a little bit more challenging to find medications for symptom management where there's not a drug interaction.” P24 Lack of formal education on HIV malignancies 25 (100%) “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. But it would certainly come up in terms of maybe journal clubs where we would discuss outcomes in patients with HIV or not HIV or things like that. But I don't recall a specific course or anything.” P10 Access to care 19 (76%) “Social issues can also be a problem as well. Sometimes patients who have diagnosis of HIV, they are also more socially and economically disadvantaged and have trouble, say, getting their rent paid, or sometimes food can be scarce. So it's a lot of different combinations of social issues that can kind of play out a little bit more in our HIV-positive patients.” P25 Perception of life expectancy 2 (8%) “Maybe more likely to recommend surveillance or less aggressive treatment options in general because again, life span potential being compromised, there's reason to think that with the longevity that prostate cancer takes to affect the patient that if they don't get their HIV under control, there's really no rush to treat the prostate cancer, so why be rushed about treating this disease [prostate cancer] when you're gonna die from that disease and why cause side effects from this disease when you're gonna die of that disease [HIV].” P1
Facilitators and Barriers to Care During the Initial Intake/Consult Facilitators Information Gathering

Nearly all oncologists explained that they review the patient's medical record on initial consult to gain understanding of the patient's health, including HIV status and disease parameters such as CD4+ count and viral load. It was noted that if the patient was already established within the hospital system's electronic medical record, it was easier for the providers to see HIV indicated in the patient's history. If the patient was seeing an infectious disease (ID) physician outside the hospital system, many oncologists would call the ID doctor or request the outside records. Many participants stated that they considered a patient's CD4+ count, level of adherence to ART, and viral load when deciding on a treatment plan.

“You could envision a scenario where you had a fractured medical record where the patient was being managed by an ID doctor, but you didn't have access to the notes, didn't know the person, didn't know what the lab values were, and that would be more problematic.” P16

After gathering information about ART utilization, CD4+ count, and viral load, several providers felt confident in creating a cancer treatment plan. In situations where patients were consistently taking ART and had well-managed HIV, many physicians would offer the same cancer treatment as they would to patients without HIV.

“I try to assure them, meaning if they have normal CD4 counts and good viral loads then I sort of put it within that context that you’re basically an immunocompetent person.” P6

Barriers Patient Confidentiality

The most common barrier mentioned during the initial intake/consult period was concern for maintaining patient confidentiality when a partner or family member accompanied them to the appointment. Many providers were typically unaware if patients have shared their HIV diagnosis with those in the room and were concerned about unwanted disclosure and anticipated stigma. For patients diagnosed with cancers associated with sexual transmission (eg, human papillomavirus and anal cancer), providers noted concerns over the additional potential for stigma. Given inconsistencies in documenting patient disclosure and preferences in medical records, some providers expressed difficulty in navigating this during the initial consultation.

“I can't really think of a scenario when I’d say, “Oh, it's inappropriate to discuss HIV with the patient,” with the caveat of the confidentiality issue. So that's where—if you're going to start talking about the patient’s HIV, you need to make sure that they're comfortable with any other family members or friends who may be present with them. And so that's where you have to invite the family members to step out… you don't really need the family members there when you talk about HIV issues.” P16

“For anal cancer in particular, I’ve noticed that some patients are very concerned about their family members or friends being made aware of what they’re being treated for and have asked that it just be left that they have cancer, not necessarily specifying the type of cancer. I think it has more to do with the stigma of the cancer diagnosis itself and thoughts that there are certain behaviors that contribute to that cancer.” P25

Facilitators and Barriers to Care During Treatment Facilitators Interdepartmental Communication

Generally, oncologists discussed collaborating with other providers while treating PLWHC. For example, most of the participants stated that communicating with a patient's ID doctor was routine. Some communicated with the ID doctor to make sure they were aware of the patient's cancer diagnosis, whereas others discussed communication to better inform both cancer and HIV management. It was mentioned that although care coordination was helpful, at times it did not change cancer treatment recommendations.

“I do have concerns about that [effect of ART on cancer treatment]. Most of the time it's just a matter of me calling their ID provider and having a conversation about what needs to give, what happens if they're off their antiretrovirals for a brief period of time. If I get a moderate drug interaction, sometimes I'll call their HIV doctor to just say, “Hey, are you still prescribing these medications when they're taking this, or is this something I should really avoid?”” P24

Moreover, some participants also felt that referring patients to social workers and mental health counselors was an important part of cancer management. Participants felt it was unnecessary to refer to social work based on the HIV diagnosis itself, but rather, they offer supportive services to all patients based on conversations about psychosocial concerns or difficulty with housing, logistics, and transportation for appointments. Many oncologists noted that the need for social work and psycho-oncology was very common among all patients living with cancer.

“Cancer care is really complicated. And then, when you add in HIV care that’s also complicated, that can be a really big psychological and emotional burden for people. And so having resources to address that part of care, too, not just about, the medical aspect of, “Is this safe, and is this going to interact with this drug?” and all of these things. But it's a big deal to get diagnosed with HIV, and it's a big deal to get diagnosed with cancer. And so helping people through a lot of the psychological and emotional milieu of that is a really important aspect of care.” P12

Medication Adherence

Many providers believed that PLWHC are more adherent to cancer medications than patients without HIV, thereby improving their cancer care. Several participants commented that, especially in patients who had been living with HIV for a long time, they noticed that they are more likely to adhere to cancer treatment because they are used to taking their HIV medications every day.

“They’re also more used to taking lots of medications, so at some level, they’re more adherent and more at peace with taking medications than other types of patients who don't take them.” P19

Barriers Drug–Drug Interactions and Concerns for Elevated Toxicity

Overall, medical oncologists reported that they considered drug–drug interactions between chemotherapy and ART in cancer treatment decision-making. One common concern was pronounced chemotherapy side effects, for example, a higher chance of neutropenia requiring hospitalization. Medical oncologists reported using CD4+ counts to determine whether systemic cancer therapy could be safely administered. Another concern was interactions between ART and cancer supportive care drugs.

“The other challenge that I find a lot is a lot of the prescription medications that I’d typically give for symptom management, when I go to prescribe them, I find that there's interactions with their HIV medications and so it becomes a little bit more challenging to find medications for symptom management where there's not a drug interaction.” P24

Concerns about drug–drug interactions were less pronounced among radiation and surgical oncologists.

Lack of Formal Education on HIV Malignancies

Although some participants noted exposure to HIV learning opportunities in their medical education and training, none had received comprehensive formal education in management of HIV malignancies. All knowledge had been gained through clinical experience and other supplemental resources.

“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. But it would certainly come up in terms of journal clubs where we would discuss outcomes in patients with HIV or not HIV or things like that. But I don't recall a specific course or anything.” P10

Access to Care

Another barrier to recommending cancer treatment was access to care and navigation of the healthcare system. Many oncologists feared that logistical and social challenges were major obstacles to treatment among PLWHC. This included the lack of transportation to the clinic, lack of social support due to HIV stigma, and difficulty paying rent or finding affordable housing near treatment sites. These challenges were of particular concern when social workers were unavailable to assist the patient in navigating treatment. One participant expressed frustration in not having a social worker on the inpatient oncology service at their institution.

“Social issues can also be a problem. Sometimes patients who have diagnosis of HIV, they’re also more socially and economically disadvantaged and have trouble, say, getting their rent paid, or sometimes food can be scarce. So, it's a lot of different combinations of social issues that can kind of play out a little bit more in our HIV-positive patients.” P25

“We know that there’s a problem for folks getting access to care with cancer that have low SES that are African American and Hispanic. I actually don’t know how that tracks with the HIV population, but I’d imagine that it tracks and I think that access to adequate care, getting into care, staying in care, being compliant, all the issues that surround that, I think probably would impact the HIV population the most.” P5

Perception of Life Expectancy

Last, a small number of oncologists discussed the challenge of considering life expectancy when presenting and discussing treatment options. When life expectancy was limited due to advanced age or severe medical comorbidities, cancer care was often de-escalated to reduce harm and maintain quality of life.13 One participant noted that the perception of decreased life expectancy due to HIV may impact likelihood of giving treatment for prostate cancer:

“Maybe more likely to recommend surveillance or less aggressive treatment options in general because again, life span potential being compromised, there’s reason to think that with the longevity that prostate cancer takes to affect the patient that if they don’t get their HIV under control, there’s really no rush to treat the prostate cancer, so why be rushed about treating this disease [prostate cancer] when you’re gonna die from that disease and why cause side effects from this disease when you’re gonna die of that disease [HIV].” P1

“It's part of their overall health issue. So whenever you're making any treatment decisions, I think it's essential that you know how your treatment fits in with their overall healthcare… If they have a relatively short life expectancy, then that certainly figures into decisions about treating that cancer.” P22

Recommendations to Improve Care

Participants had a variety of suggestions to improve cancer treatment decision-making and care delivery for PLWH. Oncologists, particularly those who experienced barriers to care coordination, recommended improving direct communication with ID providers and other specialists, additional social and mental health resources, the use of an HIV-specialized pharmacist to assist medical oncologists, and the use of a risk-benefit calculator to consider life expectancy. Other less frequently shared ideas involved more compassionate care from physicians, HIV malignancy teaching in medical education, ensuring documentation of HIV status and confidentiality preferences, and connecting patients with organizations that offer services for PLWH.

Given the existing complexities of care coordination, many oncologists discussed the importance of efficient methods of collaborating with other members in the patient's care team, including ID doctors, HIV pharmacists, and social workers. Several participants agreed that they often reached out to the ID doctor, for example, but would rather have an automated way of receiving information about their patients. One participant suggested setting up a “central coordinator” to help with coordination between the various healthcare professionals throughout the cancer care process.

“You have to make things as easy as possible for providers when you're going to make improvements in care delivery. And so having a central coordinator for that person might be very useful, where you contact them, and then they can make sure they get the social work that they need, they get the HIV specialist that they need, they get the pharmacy information, and then they communicate it back to you or facilitate setting up meetings with those different people.” P12

Owing to the lack of formal training, oncologists discussed their desire for more educational materials and suggested resources to enhance treatment decision-making for their patients living with HIV. These included publications, consensus guidelines, and multidisciplinary HIV cancer rounds.

DISCUSSION

This study identified barriers and facilitators to cancer treatment decision-making by oncologists across the cancer care continuum for PLWHC. Our findings build on and complement prior studies by providing a clinician perspective on barriers and facilitators to providing cancer care.1,3 PLWHC report stigma regarding their HIV status as a barrier to participating in cancer care. In a study by Knettel et al,14 PLWHC expressed hesitation in bringing family to appointments due to fear of providers disclosing their HIV status. Similarly, concerns about unwanted disclosure of HIV status during an initial consultation was a common barrier among participants in our study. One participant suggested that patient preferences be highlighted in the medical record, such as a “keep confidential” indicator. In addition, although several participants in this study discussed bringing up a patient's HIV status, Corrigan et al15 previously reported that one-third of PLWHC said their diagnoses were never discussed with their oncologist. This highlights a discordance in physician and patient experiences and an opportunity for enhanced mutual communication and decision-making about the impact of HIV on cancer treatment and outcomes.

The most discussed facilitator to cancer treatment decision-making was communication with other providers. Yet, in a national survey study conducted in 2015 among medical and radiation oncologists, Suneja et al7 reported that 45% of respondents who had treated PLWHC in the past 12 months never communicated with an HIV specialist. Similarly, only 50% of PLWHC perceived that there was communication between their oncologist and their HIV provider, and many expressed disappointment in the lack of communication among their care team. This suggests that streamlining ease and frequency of provider communication may be one way to improve and support cancer treatment decision-making. Participants also suggested incorporating care coordinators that could facilitate critical communication about patients.

A critical barrier to care delivery was concern regarding drug–drug interactions between chemotherapy and ART. Knettel et al14 reported that PLWHC shared concerns regarding how their cancer treatment may affect the efficacy of their ART. Prior work has demonstrated that medical oncologists often use lower doses or fewer cycles of chemotherapy with PLWH. This was also true among radiation oncologists who reported lower radiation doses and/or smaller fields. Suneja et al7 also reported that 18% of oncologists were not comfortable discussing adverse treatment effects with PLWH, and many felt that guidelines for coordinating treatment between HIV and cancer are not well-defined in the literature. Furthermore, medical oncologists reported using CD4 counts to determine candidacy for systemic therapy; this may inadvertently exclude PLWHC from receiving novel cancer treatments (eg, immunotherapy) or enrolling in clinical trials.16 Efforts to address these gaps with design of inclusive trials and dissemination of clinical management guidelines are underway.17

Several oncologists expressed views that appeared to conflate patient risks with stereotypes of PLWH. Associations between HIV, race/ethnicity, low socioeconomic status, and adherence to HIV and cancer treatment were described. Although PLWH in the United States are disproportionately Black and experience social and structural disparities that negatively affect health,17,18 it is important for providers to assess each individual patient's risk and not rely on assumptions or introduce biases.

Similarly, incorrect assumptions about limited life expectancy among PLWH were reported. Given recent advances in ART and HIV treatment, PLWH who achieve goal levels of CD4+ counts and viral loads within one year of beginning ART therapy have typical life expectancy.5 Education regarding life expectancy, as well as underlying biases from a prior era of poor HIV outcomes, should be addressed. Enhancements in care coordination may also facilitate discussions regarding life expectancy and prognosis with the patient's HIV provider.

Key strengths of the study include the diversity of practice type and geography of the enrolled oncologists. Notable limitations include the small sample size, inability to observe clinical interactions between provider and patient, and overrepresentation of radiation oncologists in the sample. In addition, given the overall rarity of HIV in the US population, participants may have been relatively inexperienced in caring for PLWHC; however, this reflects real-world practice. There is evidence to suggest that PLWHC have improved treatment outcomes in high volume centers.19 Finally, we did not interview HIV specialists, whose perspectives on care for PLWHC are vital to improving cancer treatment and care coordination. Nonetheless, some pertinent themes that emerged for HIV specialists were enhancing 2-way communication, as most oncologists interviewed in this study felt they initiated communication, and availability for telephone discussion as opposed to discussion by email or electronic medical record.

CONCLUSION

This is the first known oncologist-focused qualitative study that examined factors affecting cancer treatment decision-making for PLWH and contributes to the limited published data exploring drivers of cancer treatment disparities for PLWH. The study describes the barriers and facilitators faced by oncologists in both the initial consult and during cancer treatment, as well as recommendations to enhance treatment decision-making for PLWHC. Future studies may evaluate health system interventions including provider education to recognize and minimize the impact of biases on treatment decision-making, facilitating better communication among healthcare providers, and enhancing supportive care resources for patients. Addressing the factors identified in this study is critical to advancing equitable, evidence-based cancer care for people living with HIV.

ACKNOWLEDGMENTS

The authors acknowledge Anthony Ariotti and Noelani Ho for their contributions as research assistants.

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