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. Author manuscript; available in PMC: 2026 Feb 17.
Published in final edited form as: J Geriatr Oncol. 2026 Jan 19;17(2):102855. doi: 10.1016/j.jgo.2026.102855

Health-related quality of life among adult cancer patients with and without HIV: Analysis of SEER-MHOS data (2007–2017)

Yu Chen Lin a, Di Kang b, Biwei Cao b, Emma Hume a, Amir Alishahi Tabriz a,c, Gita Suneja d, Anna E Coghill e,f,g, Heather Jim a, Kea Turner h,i, Jessica Y Islam e,f,g,*
PMCID: PMC12908220  NIHMSID: NIHMS2140600  PMID: 41558110

Abstract

Introduction:

People with HIV (PWH) are more likely to die due to cancer compared to people without HIV. Disparities in cancer care, including access to palliative care, for PWH contribute to poor health-related quality of life (HRQoL) and survival. However, limited research exists examining patient-reported HRQoL among PWH with cancer. We examined HRQoL among patients diagnosed with non-AIDS defining cancers with and without HIV.

Materials and methods:

We used the 2007–2017 Surveillance, Epidemiology, and End Results and the Medicare Health Outcomes Survey (SEER-MHOS) linkage data to assess HRQoL among patients (ages ≥18) diagnosed with breast, colorectal, gastrointestinal, head and neck, lung, lymphoma, and prostate cancers. HRQoL outcomes included the Physical Component Summary (PCS) and Mental Component Summary (MCS) scores and the eight scale scores of the Veterans RAND 12-Item Health Survey (VR-12), and the VR-6D health utility score. Higher HRQoL scores indicate better health status. Adjusting for patient characteristics, we computed mean HRQoL scores using multivariable linear regression models and the predictive margins method. The minimally important difference (MID) in HRQoL scores between patients with and without HIV by cancer types was assessed.

Results:

The sample (N = 43,973) included 310 (0.7%) patients with HIV and had an average age at cancer diagnosis of 70.8 years. PWH reported lower scores in at least one HRQoL outcome compared to patients without HIV for all cancers examined. Differences in HRQoL for PWH compared to patients without HIV exceeded the MID for cancers of the breast (PCS: −2.7; MCS: −9.1; VR-6D: −0.08), colorectum (PCS: −2.3; MCS: −6.2; VR-6D: −0.06), gastrointestinal tract (MCS: −5.9; VR-6D: −0.04), head and neck (PCS: −4.1; MCS: −7.5; VR-6D: −0.07), lungs (PCS: −2.5; MCS: −6.3; VR-6D: −0.06), lymphatic system (PCS: −2.3; MCS: −2.6; VR-6D: −0.04), and prostate (MCS: −8.0; VR-6D: −0.07).

Discussion:

Our findings demonstrated that PWH across all cancers examined reported substantially lower mental and/or physical HRQoL compared to patients without HIV. Future work can explore strategies for symptom monitoring and management among PWH.

Keywords: HIV, Cancer, Health-related quality of life, SEER-MHOS, Disparities

1. Introduction

People with HIV (PWH) face disproportionately higher rates of certain cancers and cancer mortality compared to people without HIV [1,2]. Antiretroviral therapies (ARTs) have improved the quality of life and overall survival among PWH [3]. As the aging population of PWH grows, cancer has become the leading cause of non-AIDS death among PWH in the United States (US) [1,4,5]. Historically, the most common cancers among PWH were AIDS-defining cancers (e.g., Kaposi sarcoma) that have an infectious etiology traditionally linked to living with HIV [1,4,5]. However, the leading causes of cancer deaths among PWH in the US now are largely cancers without an infectious etiology (e.g., lung and prostate cancers), collectively known as non-AIDS defining cancers [1,4,5]. Elevated mortality rates among PWH with cancer have multifaceted causes and are attributable, in part, to inequities in cancer care delivery [6,7]. In fact, PWH are less likely to receive supportive care during cancer treatment, which may contribute to the poorer cancer outcomes observed among this understudied cancer patient population [810].

Patient-reported health-related quality of life (HRQoL), including physical and psychosocial functioning, are important measures in evaluating impacts of cancer care on a patient’s well-being and can serve as prognostic factors for a cancer patient’s risk of morbidity and mortality [11,12]. Poor symptom management and lower HRQoL are highly associated with increased preventable hospitalizations, treatment discontinuation, and mortality [1315]. Patients with cancer across multiple cancer types exhibit lower HRQoL compared to the general population [12,16,17]. However, limited research exists examining patient-reported HRQoL among PWH with cancer. There is an urgent need to evaluate the HRQoL among PWH with cancer given the increased risk for reduced HRQoL due to comorbid HIV and cancer. Improving HRQoL may be an intervenable opportunity to improve cancer outcomes among PWH. We aimed to assess differences in HRQoL among a national sample of adults with non-AIDS-defining cancers with and without HIV.

2. Methods

2.1. Data

We analyzed linkage data between the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) national cancer registry and the Centers for Medicare and Medicaid Services’ Medicare Health Outcomes Survey (MHOS) [18]. The SEER-MHOS dataset contains sociodemographic, health characteristics, and patient-reported health outcomes of randomly sampled adults enrolled in Medicare Advantage plans [18]. Although MHOS respondents are Medicare-eligible individuals who are primarily age 65 and older, those younger than 65 may be included based on disability status or specific clinical conditions, such as advanced HIV or AIDS [19]. States and metropolitan areas participating in SEER included New York (24% of participants), California (16%), Georgia (8%), Massachusetts (6%), Louisiana (5%), New Jersey (5%), Seattle-Puget Sound (5%), Connecticut (4%), Hawaii (4%), Idaho (4%), New Mexico (4%), Utah (4%), Detroit (3%), Iowa (3%), and Kentucky (3%), with 2% unknown. The response rate for the MHOS across the study years averaged 52.9% (standard deviation [SD]: 7.8; range: 43.0%–63.4%) [20]. This study was reviewed and deemed exempt from formal review by the Moffitt Cancer Center Institutional Review Board of Record, Advarra.

2.2. Study cohort

We included 11 cohorts of participants between January 2007 and December 2017 of participants ages 18 and older diagnosed with seven cancers common among PWH identified using the SEER cancer site recodes that were mapped to the International Classification of Diseases for Oncology, 3rd Edition and the World Health Organization 2008 site and histology codes (Appendix A) [21]. Cancers examined included breast, colorectal, gastrointestinal, head and neck, lung, lymphoma, and prostate. For each participant, we included data from the MHOS survey completed in the same month as their cancer diagnosis or the first survey completed following their cancer diagnosis. Participants of the MHOS survey provided informed consent. The SEER-MHOS linkage data are considered a limited dataset with no personal identifying information and is therefore exempt from additional informed consent requirements.

2.3. Measures

2.3.1. HIV status

Similar to the approach used in previous literature, we determined a participant’s HIV-positive status based on their use of HIV-specific antiretroviral therapy (ART) medications [22]. Specifically, participants who have used HIV-specific medications listed in Appendix B were classified as having HIV. Exceptions were made for participants who used ART medications for the treatment of hepatitis B or for pre-exposure prophylaxis (PrEP) to prevent HIV (lamivudine alone; emtricitabine alone; tenofovir disoproxil fumarate alone or in combination with emtricitabine; and tenofovir alafenamide alone or in combination with emtricitabine) [22]. We also assessed participants for the use of post-exposure prophylaxis (PEP) to prevent HIV after possible exposure (defined as a single 28-day regiment of a combination of ART medications) to determine the potential for misclassifying HIV-negative participants taking PEP as being HIV positive [23]. No participants using PEP were identified in our study.

2.3.2. Outcomes

The primary outcomes in our study included the eight scale of the Veterans RAND 12-Item Health Survey (VR-12) assessing participants’ HRQoL, which include the following domains: physical functioning, role limitations due to physical health problems (hereafter, “role physical”), bodily pain, general health, vitality, social functioning, role limitations due to personal or emotional problems (hereafter, “role emotional”), and mental health [24]. The Physical Component Summary (PCS) and Mental Component Summary (MCS) scores were also computed from the VR-12 scale scores [25]. The scale scores and the summary scores were standardized to the general US population norms using a T score metric (range 0–100, with mean score of 50 and standard deviation of 10). Higher scores indicate better HRQoL. Consistent with previous studies [26], the minimally important difference (MID), representing the minimal change in a participant’s health status to be considered meaningful, was defined as 3 points or greater in the eight scale scores and 2 points or greater in the PCS and MCS scores. We also computed the Veterans RAND 6-Dimension Health Survey (VR-6D), a single preference-based health utility measure with scores ranging from 0 (death) to 1 (perfect health) derived from the VR-12 [27,28]. The MID for the VR-6D score was defined as 0.03 or greater [29,30].

2.4. Statistical analyses

Participant characteristics were described overall and by HIV status. Participant counts smaller than 11 were suppressed to protect the identities of participants. Adjusted mean PCS and MCS scores, the eight scale scores, and the VR-6D scores with 95% confidence interval (95% CI) were computed using multivariable linear regression models and the predictive margins method with marginal standardization, averaging predicted outcomes over the observed covariate distribution within the study sample [3133]. Although the differences in adjusted mean scores were presented with 95% CIs, our study interpreted meaningful differences between participants with and without HIV based on the MID established in prior literature as described above [26,29,30]. The MID is widely accepted in its use for studies examining patient-reported outcomes due to its emphasis on clinical relevance and patient experience without the drawback of dependency on sample size as with statistical significance [34,35]. All models were adjusted for age at first cancer diagnosis, sex, race/ethnicity, highest educational attainment, marital status, annual household income, cancer stage at diagnosis, whether the participant had multiple cancer diagnoses, whether the participant was diagnosed with any of 12 chronic conditions (hypertension, arthritis of the hip or knee, arthritis of the hand or wrist, diabetes, sciatica, chronic obstructive pulmonary disease, coronary artery disease, myocardial infarction, congestive heart failure, stroke, other heart conditions, and inflammatory bowel disease), months from cancer diagnosis to survey completion, mode of survey administration, and whether the survey was completed by a proxy respondent. A complete case approach was used for analysis, with missing values at less than 10% and summarized in Table 1. All analyses were performed in RStudio (Posit, Boston, MA, USA) and SAS v.9.4 (SAS Institute, Cary, NC, USA). Figures were generated using GraphPad Prism v.10 (GraphPad Software, Boston, MA, USA).

Table 1.

Characteristics of participants overall and by HIV status.

Characteristic No. (%) or Mean (SD)
Overall (N = 43,973) HIV negative (N = 43,663) HIV positive (N = 310)
Sociodemographic
Age at cancer diagnosis, years
 18–65 8464 (19.2) 8243 (18.9) 221 (71.3)
 ≥65 35,509 (80.8) 35,420 (81.1) 89 (28.7)
Mean (SD) 70.8 (8.58) 70.9 (8.49) 57.6 (10.4)
Sex
 Male 22,542 (51.3%) 22,295 (51.1%) 247 (79.7%)
 Female 21,431 (48.7%) 21,368 (48.9%) 63 (20.3%)
Race/ethnicity
 White, non-Hispanic 32,274 (73.4%) 32,164 (73.7%) 110 (35.5%)
 Black or other, non-Hispanic 10,206 (23.2%) 10,041 (23.0%) 165 (53.2%)
 Hispanic/Latinx 1493 (3.40%) 1458 (3.34%) 35 (11.3%)
Highest educational attainment
 Some high school or less or unknown 11,812 (26.9%) 11,720 (26.8%) 92 (29.7%)
 High school or equivalent 13,284 (30.2%) 13,209 (30.3%) 75 (24.2%)
 Some college or 2-year degree 10,266 (23.3%) 10,186 (23.3%) 80 (25.8%)
 4-year college or more 8611 (19.6%) 8548 (19.6%) 63 (20.3%)
Marital status
 Never married 2929 (6.66%) 2781 (6.37%) 148 (47.7%)
 Married 22,290 (50.7%) 22,250 (51.0%) 40 (12.9%)
 Separated 1134 (2.58%) 1105 (2.53%) 29 (9.35%)
 Divorced 6624 (15.1%) 6584 (15.1%) 40 (12.9%)
 Widowed 9793 (22.3%) 9757 (22.3%) 36 (11.6%)
 Unknown 1203 (2.74%) 1186 (2.72%) 17 (5.48%)
Annual household income
 Less than $5000 2402 (5.46%) 2361 (5.41%) 41 (13.2%)
 $5000–$9999 3334 (7.58%) 3272 (7.49%) 62 (20.0%)
 $10,000–$19,999 8019 (18.2%) 7932 (18.2%) 87 (28.1%)
 $20,000 or more 21,082 (47.9%) 21,018 (48.1%) 64 (20.6%)
 Unknown 9136 (20.8%) 9080 (20.8%) 56 (18.1%)
Urbanicity of residence
 Big metropolitan area (counties with ≥1 million population) 25,504 (58.0%) 25,239 (57.8%) 265 (85.5%)
 Non-big metropolitan area or unknown 18,469 (42.0%) 18,424 (42.2%) 45 (14.5%)
Home ownership
 Not owned or rented 10,545 (24.0%) 10,342 (23.7%) 203 (65.5%)
 Owned 28,846 (65.6%) 28,786 (65.9%) 60 (19.4%)
 None of the above 2207 (5.02%) 2183 (5.00%) 24 (7.74%)
 Unknown 2375 (5.40%) 2352 (5.39%) 23 (7.42%)
Health characteristics
Cancer site
 Breast 12,828 (29.2%) 12,801 (29.3%) 27 (8.71%)
 Colorectal 5968 (13.6%) 5943 (13.6%) 25 (8.06%)
 Gastrointestinal 2437 (5.54%) 2338 (5.35%) 99 (31.9%)
 Head and neck 1818 (4.13%) 1799 (4.12%) 19 (6.13%)
 Lung 4705 (10.7%) 4683 (10.7%) 22 (7.10%)
 Lymphoma 2597 (5.91%) 2557 (5.86%) 40 (12.9%)
 Prostate 13,620 (31.0%) 13,542 (31.0%) 78 (25.2%)
Cancer stage at diagnosis
 In situ or unknown 4980 (11.3%) 4898 (11.2%) 82 (26.5%)
 Localized 25,922 (58.9%) 25,788 (59.1%) 134 (43.2%)
 Regional 9073 (20.6%) 9021 (20.7%) 52 (16.8%)
 Distant 3998 (9.09%) 3956 (9.06%) 42 (13.5%)
Whether diagnosed with multiple cancers
 No 32,185 (73.2%) 31,957 (73.2%) 228 (73.5%)
 Yes 11,788 (26.8%) 11,706 (26.8%) 82 (26.5%)
Smoking status
 No 38,222 (86.9%) 38,002 (87.0%) 220 (71.0%)
 Everyday or some days 4647 (10.6%) a a
 Unknown 1104 (2.51%) a a
Diagnosed with any of the 12 chronic conditionsb
 No 4437 (10.1) 4386 (10.0) 51 (16.5)
 Yes 39,536 (89.9) 39,277 (90.0) 259 (83.5)
Survey characteristics
Time from cancer diagnosis to survey, months 32.0 (28.1) 31.9 (28.1) 36.0 (28.8)
Mode of survey administration
 Mail 34,976 (79.5%) 34,734 (79.6%) 242 (78.1%)
 Telephone 8997 (20.5%) 8929 (20.4%) 68 (21.9%)
Survey completed by a proxy respondent
 No 36,405 (82.8%) 36,155 (82.8%) 250 (80.6%)
 Yes 5377 (12.2%) 5337 (12.2%) 40 (12.9%)
 Unknown 2191 (4.98%) 2171 (4.97%) 20 (6.45%)
a

Suppressed due to small cell.

b

Chronic conditions included hypertension, arthritis of the hip or knee, arthritis of the hand or wrist, diabetes, sciatica, chronic obstructive pulmonary disease, coronary artery disease, myocardial infarction, congestive heart failure, stroke, other heart conditions, and inflammatory bowel disease.

To compare participants with HIV in our sample to similar participants without HIV in order to reduce the potential effects of confounding [3638], we performed a propensity score matching analysis (Appendix C). Using logistic regression models, we estimated propensity scores based on variables recommended by SEER-MHOS guidance [39], including age within five years, sex, race/ethnicity, cancer type, and year of cancer diagnosis. Using the nearest neighbor method without replacement, participants without HIV were matched 5:1 to participants with HIV, yielding a matched sample of 309 participants with HIV and 1528 participants without HIV (one participant with HIV was unable to be matched). Standardized mean differences across covariates were reduced after matching, with most covariates achieving an absolute standardized mean difference below 0.1. Covariate-specific density plots further confirmed improved balance across the matched samples.

3. Results

3.1. Sample characteristics

The study included 43,973 participants, and 310 (0.7%) participants were HIV positive (Table 1). The average age at cancer diagnosis was 70.8 years, and 80.8% of participants were age 65 and older. About half (51.3%) of participants were male, and the racial/ethnic composition of participants included non-Hispanic (NH)-White (73.4%), NH-Black or other race (23.2%), and Hispanic/Latinx (3.4%). The highest educational attainment of most participants was high school or equivalent (30.2%) or some college (23.3%). Half (50.7%) of participants were married, and 47.9% of participants had an annual household income of $20,000 or more.

Cancer sites of participants included prostate (31.0%), breast (29.2%), colorectal (13.6%), lung (10.7%), lymphoma (5.9%), gastrointestinal (5.5%), and head and neck (4.1%) (Table 1). Most participants responded to the survey via mail (79.5%) and completed the survey on their own (82.8%). The average time between cancer diagnosis to survey completion was 32.0 months. Select patient characteristics, including sex, age at cancer diagnosis, and time from cancer diagnosis to survey completion by cancer sites are shown in Table 2.

Table 2.

Select participant characteristics by cancer sites.

Cancer site Overall, No. Female, % Age at cancer diagnosis, years Months from diagnosis to survey
Mean (SD) Median (IQR) Mean (SD) Median (IQR)
Total HIV− HIV+ HIV− HIV+ HIV− HIV+ HIV− HIV+ HIV− HIV+ HIV− HIV+
Total 43,973 43,663 310 48.9 20.3 70.9 (8.5) 57.6 (10.4) 71 (66, 76) 59 (51, 66) 31.9 (28.1) 36.0 (28.8) 23 (10, 49) 31 (11, 56)
Breast 12,828 12,801 27 99.3 100.0 70.5 (9.0) 58.7 (11.2) 70 (65, 76) 60 (50, 67) 34.0 (28.4) 40.7 (23.6) 25 (11, 51) 46 (24, 55.5)
Colorectal 5968 5943 25 51.5 40.0 72.4 (9.2) 59.8 (8.5) 72 (67, 79) 61 (55, 66) 31.3 (27.6) 29.0 (23.6) 22 (10, 48) 23 (11, 47)
Gastrointestinal 2437 2338 99 44.8 a 71.1 (9.2) 55.1 (10.5) 71 (66, 77) 55 (50, 62) 23.1 (24.5) 36.1 (29.2) 14 (5, 33) 31 (11, 55)
Head and neck 1818 1799 19 34.7 a 69.5 (9.6) 55.5 (10.7) 70 (64, 76) 55 (46, 67) 31.3 (27.6) 40.8 (23.0) 22 (9, 48) 41 (20, 58)
Lung 4705 4683 22 55.5 a 72.1 (8.2) 60.5 (7.2) 72 (67, 78) 62 (57, 66.8) 21.9 (23.1) 27.6 (27.6) 14 (5, 30) 18 (8.5, 37)
Lymphoma 2597 2557 40 51.7 a 71.6 (9.7) 51.2 (11.7) 72 (66, 78) 50.5 (44.5, 57) 31.0 (27.8) 51.5 (29.8) 21 (9, 46) 58 (24.8, 70.2)
Prostate 13,620 13,542 78 N/A N/A 70.3 (7.0) 62.9 (7.2) 70 (66, 75) 63.5 (57, 67.8) 35.6 (29.1) 29.6 (29.9) 27 (12, 54) 20 (7, 41.5)
a

Suppressed due to small cell.

3.2. Health-related quality of life

Table 3 summarizes the adjusted physical (PCS) and mental (MCS) symptom scores by cancer sites among patients with and without HIV. Among PWH, PCS scores were lowest for patients with lung cancer (30.5) (Table 3). PWH had lower MCS scores across all the cancers examined (range: 41.1–47.2) compared to patients without HIV (range: 47.3–51.0) (Table 3). Among PWH, MCS score was lowest for patients with breast (41.1) and head and neck (41.4) cancers. PWH had lower VR-6D scores across all cancers examined (range: 0.57–0.62) compared to patients without HIV (range: 0.63–0.69) (Table 3). Among PWH, VR-6D scores were lowest for patients with lung cancer (0.57). PWH with breast, colorectal, head and neck, lung, and lymphoma cancers had lower PCS, MCS, and VR-6D scores compared to patients without HIV (Table 3).

Table 3.

Adjusted mean Physical and Mental Component Summary scores and Veterans RAND 6-Dimension Health Survey (VR-6D) utility scores by HIV status and cancer sites.

Cancer Site HIV negative HIV positive Difference (95% CI)
N Mean (95% CI) N Mean (95% CI)
Physical Component Summarya,b
Breast 12,793 37.3 (37.0, 37.5) 27 34.6 (29.9, 39.4) −2.7 (−7.4, 2.0)
Colorectal 5938 37.1 (36.8, 37.4) 25 34.8 (30.1, 39.4) −2.3 (−7.0, 2.4)
Gastrointestinal 2338 34.3 (33.9, 34.8) 99 35.7 (33.4, 38.0) 1.4 (−1.0, 3.8)
Head and neck 1799 36.7 (36.1, 37.2) 19 32.6 (28.7, 36.5) −4.1 (−8.1, −0.1)
Lung 4680 33.0 (32.6, 33.3) 22 30.5 (26.4, 34.6) −2.5 (−6.6, 1.6)
Lymphoma 2556 36.3 (35.8, 36.7) 40 34.0 (29.5, 38.4) −2.3 (−6.8, 2.2)
Prostate 13,533 38.5 (38.3, 38.8) 78 37.5 (34.7, 40.3) −1.0 (−3.8, 1.8)
Mental Component Summarya, b
Breast 12,790 50.2 (49.9, 50.4) 27 41.1 (35.9, 46.2) −9.1 (−14.2, −4.0)
Colorectal 5939 50.0 (49.7, 50.3) 25 43.8 (39.3, 48.2) −6.2 (−10.7, −1.7)
Gastrointestinal 2337 47.8 (47.3, 48.3) 99 41.9 (39.2, 44.6) −5.9 (−8.7, −3.1)
Head and neck 1796 48.9 (48.4, 49.5) 19 41.4 (35.7, 47.1) −7.5 (−13.2, −1.8)
Lung 4679 48.6 (48.2, 48.9) 22 42.3 (37.1, 47.4) −6.3 (−11.4, −1.2)
Lymphoma 2554 49.8 (49.3, 50.3) 40 47.2 (43.2, 51.2) −2.6 (−6.5, 1.3)
Prostate 13,528 51.0 (50.7, 51.3) 78 43.0 (40.0, 46.1) −8.0 (−11.1, −4.9)
VR-6Da, c
Breast 12,794 0.67 (0.67, 0.67) 27 0.59 (0.55, 0.64) −0.08 (−0.12, −0.04)
Colorectal 5940 0.67 (0.67, 0.67) 25 0.61 (0.56, 0.65) −0.06 (−0.10, −0.02)
Gastrointestinal 2338 0.64 (0.63, 0.64) 99 0.60 (0.58, 0.63) −0.04 (−0.06, −0.02)
Head and neck 1799 0.66 (0.65, 0.66) 19 0.59 (0.54, 0.64) −0.07 (−0.11, −0.03)
Lung 4681 0.63 (0.63, 0.64) 22 0.57 (0.54, 0.61) −0.06 (−0.10, −0.02)
Lymphoma 2556 0.66 (0.66, 0.67) 40 0.62 (0.58, 0.66) −0.04 (−0.08, 0.00)
Prostate 13,533 0.69 (0.68, 0.69) 78 0.62 (0.60, 0.65) −0.07 (−0.09, −0.05)
a

All models were adjusted for age at first cancer diagnosis, sex, race/ethnicity, highest educational attainment, marital status, annual household income, cancer stage at diagnosis, whether the participant had multiple cancer diagnoses, whether the participant was diagnosed with any of 12 chronic conditions, months from diagnosis to survey, mode of survey administration, and whether the survey was completed by a proxy respondent.

b

Bolded Physical and Mental Component Summary scores represent a minimally important difference of 2.0 or greater between the HIV-negative and HIV-positive groups.

c

Bolded VR-6D scores represent a minimally important difference of 0.03 or greater between the HIV-negative and HIV-positive groups.

Adjusting for covariates, the mean difference in at least one HRQoL outcome exceeded the MID (2 points or greater for PCS and MCS; 0.03 or greater for VR-6D) for all cancer sites examined (Fig. 1). Differences in the PCS, MCS, and VR-6D scores for PWH compared to patients without HIV exceeded the MID for cancers of the breast (PCS: −2.7, 95% CI: −7.4, 2.0; MCS: −9.1, 95% CI: −14.2, −4.0; VR-6D: −0.08, 95% CI: −0.12, −0.04), colorectum (PCS: −2.3, 95% CI: −7.0, 2.4; MCS: −6.2, 95% CI: −10.7, −1.7; VR-6D: −0.06, 95% CI: −0.10, −0.02), gastrointestinal tract (MCS: −5.9, 95% CI: −8.7, −3.1; VR-6D: −0.04, 95% CI: −0.06, −0.02), head and neck (PCS: −4.1, 95% CI: −8.1, −0.1; MCS: −7.5, 95% CI: −13.2, −1.8; VR-6D: −0.07, 95% CI: −0.11, −0.03), lung (PCS: 2.5, 95% CI: −6.6, 1.6; MCS: −6.3, 95% CI: −11.4, −1.2; VR-6D: −0.06, 95% CI: −0.10, −0.02), lymphatic system (PCS: −2.3, 95% CI: −6.8, 2.2; MCS: −2.6, 95% CI: −6.5, 1.3; VR-6D: −0.04, 95% CI: −0.08, 0.00), and prostate (MCS: −8.0, 95% CI: −11.1, −4.9; VR-6D: −0.07, 95% CI: −0.09, −0.05) (Fig. 1).

Fig. 1.

Fig. 1.

Adjusted mean differences in a) Physical and Mental Component Summary scores and b) Veterans RAND 6-Dimension Health Survey (VR-6D) utility scores between HIV-positive and HIV-negative patients by cancer sites.

Similar findings between patients with and without HIV were observed for the eight VR-12 scale scores (Table 4). Physical functioning scores were similar between patients with and without HIV for colorectal, gastrointestinal, lung, lymphoma, and prostate cancers (Fig. 2). The largest differences in physical functioning scores for PWH compared to patients without HIV were for patients with head and neck (−3.5, 95% CI: −8.8, 1.8) and breast (−3.5, 95% CI: −9.6, 2.6) cancers, where the MID of 3 points was exceeded. Among PWH, physical functioning score was lowest for patients with lung cancer (31.9) (Table 4). Scores for role limitations due to physical health problems were similar between patients with and without HIV for breast, gastrointestinal, lung, lymphoma, and prostate cancers (Fig. 2). Differences in role physical scores between patients with and without HIV were found for patients with head and neck (−6.7, 95% CI: −11.2, −2.2) and colorectal (−3.3, 95% CI: −8.0, 1.4) cancers. Among PWH, patients with head and neck cancers reported the lowest role physical score (32.2) (Table 4). Bodily pain scores were similar between patients with and without HIV for gastrointestinal cancer (Fig. 2). PWH had lower bodily pain scores compared to patients without HIV for breast (−7.4, 95% CI: −12.5, −2.3), lung (−7.2, 95% CI: −11.1, −3.3), lymphoma (−4.3, 95% CI: −7.8, −0.8), colorectal (−4.2, 95% CI: −9.1, 0.7), prostate (−3.8, 95% CI: −6.4, −1.2), and head and neck (−3.2, 95% CI: −7.2, 0.8) cancers. Among PWH, patients with lung cancer had the lowest bodily pain score (33.0) (Table 4). General health scores were similar for patients with and without HIV for gastrointestinal, lung, and lymphoma cancers (Fig. 2). PWH reported lower general health scores for head and neck (−8.3, 95% CI: −14.2, −2.4), colorectal (−5.5, 95% CI: −10.8, −0.2), breast (−4.0, 95% CI: −10.1, 2.1), and prostate (−3.9, 95% CI: −7.0, −0.8) cancers. Among PWH, patients with head and neck cancer had the lowest general health score (32.2) (Table 4).

Table 4.

Adjusted mean Veterans RAND 12-Item Health Survey (VR-12) scale scores by HIV status and cancer sites.

Cancer HIV negative HIV positive Difference (95% CI)
N Mean (95% CI) N Mean (95% CI)
Physical functioninga
Breast 12,695 37.3 (37.0, 37.6) 27 33.8 (27.7, 39.9) −3.5 (−9.6, 2.6)
Colorectal 5884 37.2 (36.9, 37.5) 25 34.4 (29.1, 39.6) −2.8 (−8.1, 2.5)
Gastrointestinal 2319 34.7 (34.1, 35.2) 99 34.7 (31.8, 37.5) 0.0 (−3.0, 3.0)
Head and neck 1785 36.8 (36.1, 37.4) 19 33.3 (27.9, 38.7) −3.5 (−8.8, 1.8)
Lung 4643 32.4 (32.0, 32.8) 21 31.9 (26.6, 37.2) −0.5 (−5.8, 4.8)
Lymphoma 2549 36.3 (35.7, 36.8) 39 34.1 (28.7, 39.5) −2.2 (−7.7, 3.3)
Prostate 13,445 39.2 (38.9, 39.5) 78 37.3 (34.2, 40.4) −1.9 (−5.1, 1.3)
Role - Physicala
Breast 12,680 39.7 (39.4, 40.0) 25 37.1 (31.7, 42.5) −2.6 (−8.1, 2.9)
Colorectal 5888 39.4 (39.1, 39.7) 25 36.1 (31.5, 40.7) −3.3 (−8.0, 1.4)
Gastrointestinal 2314 36.7 (36.2, 37.2) 98 36.8 (34.4, 39.3) 0.1 (−2.5, 2.7)
Head and neck 1779 38.9 (38.3, 39.4) 19 32.2 (27.6, 36.7) −6.7 (−11.2, −2.2)
Lung 4640 36.1 (35.7, 36.4) 22 33.2 (28.7, 37.6) −2.9 (−7.4, 1.6)
Lymphoma 2543 38.4 (37.9, 38.9) 39 35.8 (31.5, 40.2) −2.6 (−6.9, 1.7)
Prostate 13,420 40.9 (40.6, 41.2) 77 38.6 (35.6, 41.7) −2.3 (−5.2, 0.6)
Bodily paina
Breast 12,611 41.8 (41.6, 42.1) 27 34.4 (29.4, 39.4) −7.4 (−12.5, −2.3)
Colorectal 5831 42.1 (41.8, 42.4) 24 37.9 (32.9, 42.8) −4.2 (−9.1, 0.7)
Gastrointestinal 2290 40.3 (39.8, 40.8) 99 38.0 (35.8, 40.1) −2.3 (−4.5, −0.1)
Head and neck 1768 41.1 (40.6, 41.6) 18 37.9 (34.0, 41.7) −3.2 (−7.2, 0.8)
Lung 4596 40.2 (39.8, 40.5) 21 33.0 (29.2, 36.8) −7.2 (−11.1, −3.3)
Lymphoma 2517 41.5 (41.0, 41.9) 39 37.2 (33.7, 40.7) −4.3 (−7.8, −0.8)
Prostate 13,322 42.7 (42.4, 43.0) 77 38.9 (36.3, 41.4) −3.8 (−6.4, −1.2)
General healtha
Breast 12,557 41.9 (41.6, 42.2) 24 37.9 (31.8, 44.0) −4.0 (−10.1, 2.1)
Colorectal 5808 41.3 (41.0, 41.6) 24 35.8 (30.5, 41.2) −5.5 (−10.8, −0.2)
Gastrointestinal 2297 37.3 (36.8, 37.8) 97 37.6 (34.7, 40.4) 0.3 (−2.7, 3.3)
Head and neck 1762 40.5 (39.9, 41.0) 19 32.2 (26.2, 38.1) −8.3 (−14.2, −2.4)
Lung 4587 37.2 (36.8, 37.6) 21 34.7 (29.2, 40.3) −2.5 (−8.0, 3.0)
Lymphoma 2513 41.0 (40.5, 41.5) 40 39.0 (34.2, 43.8) −2.0 (−6.7, 2.7)
Prostate 13,359 42.4 (42.1, 42.7) 77 38.5 (35.3, 41.6) −3.9 (−7.0, −0.8)
Vitalitya
Breast 12,548 45.4 (45.2, 45.7) 26 40.0 (35.4, 44.7) −5.4 (−10.1, −0.7)
Colorectal 5818 45.4 (45.1, 45.7) 25 44.4 (40.1, 48.7) −1.0 (−5.3, 3.3)
Gastrointestinal 2295 43.0 (42.5, 43.5) 99 42.1 (39.8, 44.5) −0.9 (−3.3, 1.5)
Head and neck 1753 44.8 (44.2, 45.3) 19 41.5 (36.6, 46.4) −3.3 (−8.2, 1.6)
Lung 4592 42.3 (41.9, 42.7) 22 36.7 (32.2, 41.1) −5.6 (−10.1, −1.1)
Lymphoma 2505 44.9 (44.4, 45.4) 39 45.2 (41.1, 49.3) 0.3 (−3.8, 4.4)
Prostate 13,293 46.9 (46.6, 47.2) 77 43.6 (40.4, 46.7) −3.3 (−6.4, −0.2)
Social functioninga
Breast 12,565 44.1 (43.8, 44.5) 26 34.5 (28.2, 40.7) −9.6 (−15.9, −3.3)
Colorectal 5847 43.7 (43.4, 44.1) 24 37.8 (33.0, 42.6) −5.9 (−10.6, −1.2)
Gastrointestinal 2296 40.6 (40.0, 41.1) 99 34.5 (31.6, 37.4) −6.1 (−9.1, −3.1)
Head and neck 1762 42.7 (42.1, 43.4) 19 33.8 (28.8, 38.9) −8.9 (−14.0, −3.8)
Lung 4603 41.0 (40.6, 41.4) 21 32.3 (25.8, 38.7) −8.7 (−15.2, −2.2)
Lymphoma 2519 43.2 (42.7, 43.8) 40 40.1 (35.5, 44.8) −3.1 (−7.8, 1.6)
Prostate 13,343 45.3 (45.0, 45.6) 78 37.2 (33.8, 40.6) −8.1 (−11.5, −4.7)
Role - Emotionala
Breast 12,676 46.3 (46.0, 46.6) 26 37.9 (32.1, 43.7) −8.4 (−14.3, −2.5)
Colorectal 5875 46.1 (45.8, 46.4) 25 38.5 (33.8, 43.3) −7.6 (−12.3, −2.9)
Gastrointestinal 2312 43.9 (43.4, 44.4) 97 38.9 (36.1, 41.7) −5.0 (−7.8, −2.2)
Head and neck 1776 45.4 (44.8, 45.9) 19 37.8 (31.9, 43.7) −7.6 (−13.5, −1.7)
Lung 4621 44.3 (43.9, 44.7) 22 39.8 (33.6, 46.0) −4.5 (−10.8, 1.8)
Lymphoma 2533 45.5 (45.0, 46.0) 40 43.8 (39.0, 48.7) −1.7 (−6.6, 3.2)
Prostate 13,417 47.2 (46.9, 47.4) 77 39.9 (36.7, 43.1) −7.3 (−10.4, −4.2)
Mental healtha
Breast 12,659 48.7 (48.5, 49.0) 26 41.1 (35.6, 46.7) −7.6 (−13.1, −2.1)
Colorectal 5880 48.7 (48.3, 49.0) 24 42.1 (37.2, 47.1) −6.6 (−11.5, −1.7)
Gastrointestinal 2310 46.6 (46.1, 47.2) 98 42.5 (39.7, 45.3) −4.1 (−6.9, −1.3)
Head and neck 1770 47.3 (46.7, 47.9) 19 40.5 (34.6, 46.4) −6.8 (−12.7, −0.9)
Lung 4625 46.8 (46.5, 47.2) 22 42.8 (37.9, 47.6) −4.0 (−8.9, 0.9)
Lymphoma 2526 48.6 (48.1, 49.1) 40 43.5 (39.4, 47.7) −5.1 (−9.3, −0.9)
Prostate 13,413 49.7 (49.4, 50.0) 78 43.3 (40.3, 46.3) −6.4 (−9.3, −3.5)
a

All models were adjusted for age at first cancer diagnosis, sex, race/ethnicity, highest educational attainment, marital status, annual household income, cancer stage at diagnosis, whether the participant had multiple cancer diagnoses, whether the participant was diagnosed with any of 12 chronic conditions, months from diagnosis to survey, mode of survey administration, and whether the survey was completed by a proxy respondent. Bolded VR-12 scale scores represent a minimally important difference of 3.0 or greater between the HIV-negative and HIV-positive groups.

Fig. 2.

Fig. 2.

Adjusted mean differences in Veterans RAND 12-Item Health Survey (VR-12) scale scores between HIV-positive and HIV-negative patients by cancer sites.

PWH with colorectal, gastrointestinal, and lymphoma cancers reported similar vitality scores compared to patients without HIV (Fig. 2). PWH had lower vitality score compared to patients without HIV for lung (−5.6, 95% CI: −10.1, −1.1), breast (−5.4, 95% CI: −10.1, −0.7), head and neck (−3.3, 95% CI: −8.2, 1.6), and prostate (−3.3, 95% CI: −6.4, −0.2) cancers. PWH with lung cancer reported the lowest vitality score (36.7) (Table 4). Compared to patients without HIV, PWH had lower social functioning scores across all cancers, including breast (−9.6, 95% CI: −15.9, −3.3), head and neck (−8.9, 95% CI: −14.0, −3.8), lung (−8.7, 95% CI: −15.2, −2.2), prostate (−8.1, 95% CI: −11.5, −4.7), gastrointestinal (−6.1, 95% CI: −9.1, −3.1), colorectal (−5.9, 95% CI: −10.6, −1.2), and lymphoma (−3.1, 95% CI: −7.8, 1.6) cancers (Fig. 2). PWH with lung cancer reported the lowest social functioning scores (32.3) (Table 4). Compared to patients without HIV, PWH had lower scores for role limitations due to personal or emotional problems across all cancers except lymphoma, including breast (−8.4, 95% CI: −14.3, −2.5), head and neck (−7.6, 95% CI: −13.5, −1.7), colorectal (−7.6, 95% CI: −12.3, −2.9), prostate (−7.3, 95% CI: −10.4, −4.2), gastrointestinal (−5.0, 95% CI: −7.8, −2.2), and lung (−4.5, 95% CI: −10.8, 1.8) cancers (Fig. 2). PWH with head and neck (37.8) and breast (37.9) cancers reported the lowest role emotional scores (Table 4). PWH across all cancers reported lower mental health scores compared to patients without HIV, including breast (−7.6, 95% CI: −13.1, −2.1), head and neck (−6.8, 95% CI: −12.7, −0.9), colorectal (−6.6, 95% CI: −11.5, −1.7), prostate (−6.4, 95% CI: −9.3, −3.5), lymphoma (−5.1, 95% CI: −9.3, −0.9), gastrointestinal (−4.1, 95% CI: −6.9, −1.3), and lung (−4.0, 95% CI: −8.9, 0.9) cancers (Fig. 2). Among PWH, patients with head and neck cancer reported the lowest mental health score (40.5) (Table 4). PWH with head and neck cancer reported lower HRQoL on all eight scales compared to patients without HIV.

4. Discussion

This study aimed to assess differences in HRQoL among a national sample of adults with non-AIDS-defining cancers with and without HIV. To our knowledge, limited research exists examining patient-reported HRQoL among PWH with cancer. Our findings demonstrated that PWH with cancer experience substantially lower HRQoL across all the cancers examined. In particular, PWH with breast, colorectal, and head and neck cancers exhibited the greatest difference in HRQoL compared to patients without HIV. Future work can explore strategies for monitoring and managing symptoms among PWH with cancer, particularly among older patients. The inclusion of Medicare-eligible PWH under age 65 in our study played a critical role in assessing the difference in symptom burden for PWH given the overall aging of people with HIV and the growing population of older adults with HIV with cancer [5]. Leveraging the SEER-Medicare data has been critical to assessing the differences in cancer-related outcomes among people with and without HIV in prior seminal work [4042]. Compared to people without HIV, PWH experience geriatric conditions at a younger age, including living with a greater number of comorbidities [43], functional impairments (particularly due to frailty) [44], cognitive decline [43], physical function decline [45], and impairments in activities of daily living [43]. The greater prevalence of aging-related conditions in younger PWH due to advanced HIV disease can severely impact outcomes across the cancer care continuum, including cancer treatment receipt, care quality, and mortality [2,610].

In cancer care, patients experience multifaceted symptoms due to the side effects associated with systemic therapy and treatments generally [15]. High symptom burden associated with cancer treatment is known to lead to lower patient satisfaction, adherence to cancer treatment, and survival probabilities [14,46,47]. Living with comorbidities while undergoing cancer treatment exacerbates existing symptoms [12,48]. This is particularly critical for the case of PWH with cancer given the symptomology associated with living with HIV and adherence to ART medications. Long-term use of ART to control HIV is associated with digestive discomfort, skin rashes, numbness, memory loss, dizziness, as well as a high burden of depressive symptoms [49]. Additionally, PWH can also face clinical factors that contribute to lower HRQoL, including poor HIV control and high HIV viral load. Lower CD4 cell count is associated with worse physical health and greater disease progression [50,51]. Given the dual burden of living with both HIV and cancer, future work can examine interventions and care coordination models to monitor patient-reported outcomes and manage symptom burden among PWH with cancer.

Our results are similar to one prior study that evaluated patient-reported outcomes among PWH with cancer [52]. Evaluated using the Edmonton Symptom Assessment Scale (ESAS), symptom burden, including pain, anxiety, depression, and nausea, was significantly higher among PWH compared to those without HIV [52]. Although to our knowledge, symptom burden and HRQoL have not been previously evaluated among PWH with cancers besides head and neck, there is extensive literature demonstrating that patients across many cancer types experience lower HRQoL compared with the general population [12,16,17]. In our study, among the cancers examined, PWH with head and neck cancers reported some of the lowest PCS, MCS, and VR-6D scores. We also found that PWH with head and neck cancers scored the lowest on HRQoL physical scales (physical functioning, role physical, and general health) and mental scales (role emotional and mental health). This is consistent with the symptom profile and treatment-associated side effects of head and neck cancers, including the loss of functions for swallowing, eating, and speaking [53].

Addressing high symptom burden and improving HRQoL is a major priority for cancer care among older patients. Older cancer patients face unique care needs but despite this, a review found that 15–93% of older patients undergoing cancer treatment had unmet needs [54]. The most common needs included psychological and emotional (e.g., anxiety, fear), need for information, and physical (e.g., fatigue, pain) [54,55]. These needs are most prevalent immediately after diagnosis and during treatment [54]. Geriatric assessments to detect and monitor unaddressed needs should be used to inform care plans that incorporate patient preferences and shared decision-making [56]. In 2014, the National Comprehensive Cancer Network recommended that palliative care should be integrated into routine cancer care at the start of diagnosis, particularly for high-risk patients with competing comorbidities [57]. Palliative care provides an opportunity for patients to discuss symptom burden with a dedicated care team focused on mitigating the adverse impacts of symptoms during the cancer treatment experience. However, despite evidence showing that receipt of palliative care early in cancer care leads to improved HRQoL and survival [5860], PWH are less likely to access palliative or supportive care services, particularly PWH of low socioeconomic backgrounds [810]. Access to supportive care services is influenced by multilevel individual, healthcare system, and social level factors [61]. In addition, PWH face unique barriers to cancer care such as low social support, stigma, and discrimination due to their HIV status [50]. These social factors negatively impact the receipt and quality of cancer care that PWH receive in the US [50]. Integrated palliative care interventions can reduce social barriers to care and HIV stigma among PWH [62].

5. Limitations

This study should be considered in light of the following limitations. First, we were only able to determine a participant’s HIV status based on their ART medication use due to the lack of information on HIV laboratory tests and diagnosis codes in the SEER-MHOS linkage data. Ideally, HIV-positive status would be determined based on validated approaches that used a combination of data on HIV medication, tests, and diagnosis codes [22]. Furthermore, the small number of participants with HIV may limit the precision of the estimates and generalizability of the results to the population of PWH. However, we observed substantial disparities in HRQoL between participants with and without HIV even though the potential misclassification of HIV status would bias our results toward the null. Second, the SEER data only included Medicare Advantage beneficiaries from 12 participating states and 4 metropolitan areas [63]. Therefore, findings from this study may not be representative of Medicare fee-for-service beneficiaries or of patients from non-participating geographic areas. Third, only services covered by Medicare were available in the SEER-MHOS data. HIV-related clinical information, such as viral load and CD4 cell count, were also not available. Receipt of cancer care not covered by Medicare and HIV-related clinical information that may be important in explaining a participant’s HRQoL were not accounted for in this study. Fourth, the time from cancer diagnosis to survey completion differed by HIV status and cancer type, even though it was adjusted for in the analysis. Ideally, a future dataset would have a measurement of HRQoL taken close to active cancer treatment to better attribute the effect of HRQoL on patient cancer outcomes, such as treatment tolerance and adherence. Fifth, there is the potential for non-response bias to the MHOS based on certain sociodemographic characteristics including age, race/ethnicity, sex, and whether patient was residing in a long-term institutionalized facility [64,65]. Furthermore, the non-response bias among people with and without HIV is unknown. However, prior studies have found that the non-response bias is modest and did not bias estimations of health status or cause the resulting sample to be non-representative of the eligible population [6466].

6. Conclusion

Our findings demonstrated that PWH across all cancers examined reported substantially lower mental and/or physical HRQoL compared to patients without HIV. In particular, PWH with breast, colorectal, and head and neck cancers exhibited the greatest difference in HRQoL compared to patients without HIV. Among PWH, patients with head and neck cancers reported some of the lowest PCS, MCS, and VR-6D scores. Future work can explore strategies for symptom monitoring and management to identify and address high symptom burden among PWH.

Supplementary Material

Supplementary Material

Acknowledgements

This study used data from the SEER-MHOS linked data resource. The interpretation and reporting of these data are the sole responsibility of the authors. The authors acknowledge the efforts of the National Cancer Institute; the Centers for Medicare & Medicaid Services; Information Management Services (IMS), Inc.; and the Surveillance, Epidemiology, and End Results (SEER) Program tumor registries in the creation of the SEER-MHOS database. This work has been supported in part by the Biostatistics and Bioinformatics Shared Resource at the H. Lee Moffitt Cancer Center & Research Institute, an NCI-Designated Comprehensive Cancer Center.

Funding

This study was funded by the National Cancer Institute (grant R03 CA278603-01A1).

Declaration of competing interest

The authors declare the following financial interests/personal relationships which may be considered as potential competing interests:

Jessica Y. Islam reports financial support was provided by National Cancer Institute. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Appendix A. Supplementary data

Supplementary data to this article can be found online at https://doi.org/10.1016/j.jgo.2026.102855.

Footnotes

CRediT authorship contribution statement

Yu Chen Lin: Methodology, Formal analysis, Writing – original draft. Di Kang: Methodology, Formal analysis, Writing – review & editing. Biwei Cao: Methodology, Formal analysis, Writing – review & editing. Emma Hume: Project administration, Writing – review & editing. Amir Alishahi Tabriz: Writing – review & editing. Gita Suneja: Writing – review & editing. Anna E. Coghill: Writing – review & editing. Heather Jim: Writing – review & editing. Kea Turner: Writing – review & editing. Jessica Y. Islam: Conceptualization, Methodology, Formal analysis, Supervision, Project administration, Writing – review & editing.

Ethics approval

This study was reviewed and deemed exempt from formal review by the Moffitt Cancer Center Institutional Review Board of Record, Advarra. Participants of the MHOS survey provided informed consent. The SEER-MHOS linkage data are considered a limited dataset with no personal identifying information and is therefore exempt from additional informed consent requirements.

Data availability

The data analyzed in this study are available from SEER-MHOS. Restrictions apply to the availability of these data, and investigators interested in using the SEER-MHOS data must submit a request for access.

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This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

Supplementary Material

Data Availability Statement

The data analyzed in this study are available from SEER-MHOS. Restrictions apply to the availability of these data, and investigators interested in using the SEER-MHOS data must submit a request for access.

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