Construct validity and responsiveness of a health-related symptom index for persons either treated or monitored for anal high-grade squamous intraepithelial lesions (HSIL): AMC-A01/-A03.

PURPOSE: To determine whether treatment of anal high-grade squamous intraepithelial lesions (HSIL), vs active monitoring, is effective in reducing incidence of anal cancer in persons living with HIV, the US National Cancer Institute funded the Phase III ANal Cancer/HSIL Outcomes Research (ANCHOR) clinical trial. As no established patient-reported outcomes (PRO) tool exists for persons with anal HSIL, we sought to estimate the construct validity and responsiveness of the ANCHOR Health-Related Symptom Index (A-HRSI). METHODS: The construct validity phase enrolled ANCHOR participants who were within two weeks of randomization to complete A-HRSI and legacy PRO questionnaires at a single time point. The responsiveness phase enrolled a separate cohort of ANCHOR participants who were not yet randomized to complete A-HRSI at three time points: prior to randomization (T1), 14-70 (T2), and 71-112 (T3) days following randomization. RESULTS: Confirmatory factor analysis techniques established a three-factor model (i.e., physical symptoms, impact on physical functioning, impact on psychological functioning), with moderate evidence of convergent validity and strong evidence of discriminant validity in the construct validity phase (n = 303). We observed a significant moderate effect for changes in A-HRSI impact on physical functioning (standardized response mean = 0.52) and psychological symptoms (standardized response mean = 0.60) from T2 (n = 86) to T3 (n = 92), providing evidence of responsiveness. CONCLUSION: A-HRSI is a brief PRO index that captures health-related symptoms and impacts related to anal HSIL. This instrument may have broad applicability in other contexts assessing individuals with anal HSIL, which may ultimately help improve clinical care and assist providers and patients with medical decision-making.

Feasibility and acceptability of using an IVRS to assess decision making about sun protection.

OBJECTIVE: We developed an interactive voice response system (IVRS), an automated telephone survey technology, to assess real-time decision making about sun protection. We examined the feasibility and acceptability of IVRS in this electronic health (eHealth) context. METHODS: Melanoma patients who underwent surgery referred their first-degree relatives (FDRs) for participation. Eligible FDRs were contacted twice daily (12:30 pm; 5:00 pm) over 14 consecutive days via IVRS to complete a survey about their sun protection behaviors and decisions about those behaviors. RESULTS: Of the 81 eligible FDRs, 69 (85%) consented to the study, and 53 (77%) completed the study. We assessed adherence with the IVRS via the number and pattern of missing survey items across all answered IVRS calls. About 80% of scheduled IVRS calls were answered (1316/1652). Most surveys (93%) of the IVRS-answered calls were completed. To examine acceptability, we analyzed the program satisfaction survey data collected at the end of the study. Most participants viewed the IVRS to be highly acceptable and easy to use. CONCLUSIONS: These findings illustrate that use of real-time IVRS data collection regarding sun protection decision making is feasible and acceptable to higher-risk research participants and could thus be used with time and location-sensitive eHealth support to enhance sun protection decision making.

Reliability and between-group stability of a health-related quality of life symptom index for persons with anal high-grade squamous intraepithelial lesions: an AIDS Malignancy Consortium Study (AMC-A03).

PURPOSE: The Anal Cancer HSIL Outcomes Research (ANCHOR) trial aims to determine whether treating precancerous anal high-grade squamous intraepithelial lesions (HSIL), versus active surveillance, is effective in reducing anal cancer incidence in HIV-infected individuals. We evaluated the reliability (i.e., internal consistency, test-retest) and between-group stability of a 25-item ANCHOR Health-Related Symptom Index (A-HRSI). METHODS: ANCHOR participants at least 1-month post-randomization to treatment or active surveillance completed the A-HRSI via telephone. Participants were contacted 7-10 days later to complete the A-HRSI and a participant global impression of change (PGIC) item. RESULTS: Participants (n = 100) were enrolled (mean age = 51.4, 79% cisgender-male, 73% African American, 9% Hispanic) from five ANCHOR sites. Cronbach's α was good for the physical symptoms (0.82) domain and fair for the physical impacts (0.79) and psychological symptoms (0.73) domains. Intraclass correlation coefficients were good for each of respective domains (i.e., 0.80, 0.85, and 0.82). There were no significant differences in PGIC between the treatment (n = 56) and active surveillance (n = 44) groups (F(1,98) = 2.03, p = 0.16). CONCLUSIONS: The A-HRSI is able to reliably assess participant-reported symptoms and impacts of anal HSIL across a 7-10 days of timeframe. Future work will involve the establishment of construct and discriminant validity prior to inclusion in the full ANCHOR trial.

Intra-individual study of mindfulness: ecological momentary perspective in post-surgical lung cancer patients.

The period of recovery following a lung-cancer surgery presents unique challenges and psychological demands. The study utilized ecological momentary assessments (EMA) to repeatedly sample mindfulness states in a sample of mindfulness-untrained individuals following hospital discharge. Intra- and inter- individual variability was assessed to examine cancer patients' natural capacity to exhibit mindfulness states during two weeks of recovery. Fifty nine stage I lung cancer patients (61% women, mean age = 66.1, SD = 7.9) completed EMA twice a day for two weeks. Mean level of mindfulness in the sample was low and equaled .49 (SD = .51) on the 5 point scale, with older participants being less likely to endorse mindful states. Net variability in mindfulness, defined as the person-based standard deviation in momentary scores, equaled .42 (SD = .26), ranging for 0 to 1.3 and indicating very modest variability for most participants. Results of the multi-level variance partitioning model revealed 41.4% of variance in mindfulness scores at the inter-individual, 2.4% on the temporal (i.e., .2% weekly and 2.2% daily), and 56.2% on the momentary levels. Findings indicate that, for cancer patients recovering from surgery, the innate ability to exhibit mindfulness is limited. From the methodological standpoint, consideration of intra-individual variability has implications for conceptualization and design of EMA studies.

Initial Development and Content Validation of a Health-Related Symptom Index for Persons either Treated or Monitored for Anal High-Grade Squamous Intraepithelial Lesions.

BACKGROUND: Anal cancer, caused by oncogenic types of human papillomavirus, is a growing problem in the United States. A key focus of anal cancer prevention has been screening for and treating precancerous high-grade squamous intraepithelial anal lesions (HSILs). OBJECTIVES: To develop a health-related symptom index for HSIL using qualitative techniques because anal HSIL and its treatment may have a negative impact on health-related quality of life (HRQOL), and no HRQOL measure specific to this condition and treatment currently exists. METHODS: Expert consultation was used to guide one-on-one concept elicitation interviews with participants to identify HRQOL aspects they attribute to their anal HSIL and its treatment. This resulted in a draft instrument, which was administered to an independent participant sample, where cognitive interview techniques assessed comprehension. RESULTS: Eighteen anal HSIL-related concepts were identified by the expert panel. Across the 41 concept elicitation interviews, 23 items representing physical symptoms, physical impacts, and psychological symptoms were identified to comprise the initial measure, which was then evaluated during three rounds of cognitive interviews (n = 45). Several questionnaire aspects were refined on the basis of participant input, with three additional items added per expert/participant recommendation. One item was removed because of poor comprehension, resulting in a 25-item measure. CONCLUSIONS: Using state-of-the-art qualitative methodology, we have established the content validity of this new instrument, the ANCHOR Anal HSIL Health-Related Symptom Index. Quantitative validation efforts are currently underway. The participant-driven process of developing this tool will facilitate a participant-centered evaluation of the impact on morbidity for treatment of anal HSIL or observation without treatment.

Examining transdiagnostic vulnerabilities among HIV positive smokers seen at three inner city community based organizations.

Investigators have proposed a "transdiagnostic vulnerability framework" that examines the relationship between smoking and broader emotional factors, including anhedonia, anxiety sensitivity, and distress tolerance. Because smoking and depression are more common in persons living with HIV and AIDS (PLWHA) than in the general population, understanding the relationship between smoking and mental health is critical. The following study aims to characterize levels of clinically significant depressive symptoms and these broader emotional factors as well as the relationship between these factors and smoking-related variables in a sample of PLWHA. This cross-sectional study employed convenience sampling to survey adult clients who attended one of three AIDS service organizations in New York City. The questionnaires assessed sociodemographic and HIV health care variables, tobacco use, and anxiety - and depression-related constructs. 150 PLWHA completed surveys. Among the 118 smokers, the prevalence of clinically depressive symptoms was 53%. Participants with clinically significant depressive symptoms had significantly higher mean anhedonia scores and anxiety sensitivity scores and lower mean distress tolerance total scores compared to participants without clinically significant depressive symptoms (p < 0.001). Smoking cessation treatment for persons with co-morbid psychiatric disorders has been suboptimal and treatment for co-morbid mental health conditions tends to align with disorder-specific treatment. Given that PLWHA are a priority population, further research should address how to best tailor interventions to a group with multiple obstacles to successful tobacco cessation.

Electronic cigarette use among patients with cancer: characteristics of electronic cigarette users and their smoking cessation outcomes.

BACKGROUND: Given that continued smoking after a cancer diagnosis increases the risk of adverse health outcomes, patients with cancer are strongly advised to quit. Despite a current lack of evidence regarding their safety and effectiveness as a cessation tool, electronic cigarettes (E-cigarettes) are becoming increasingly popular. To guide oncologists' communication with their patients about E-cigarette use, this article provides what to the authors' knowledge is the first published clinical data regarding E-cigarette use and cessation outcomes among patients with cancer. METHODS: A total of 1074 participants included smokers (patients with cancer) who recently enrolled in a tobacco treatment program at a comprehensive cancer center. Standard demographic, tobacco use history, and follow-up cessation outcomes were assessed. RESULTS: A 3-fold increase in E-cigarette use was observed from 2012 to 2013 (10.6% vs 38.5%). E-cigarette users were more nicotine dependent than nonusers, had more prior quit attempts, and were more likely to be diagnosed with thoracic and head or neck cancers. Using a complete case analysis, E-cigarette users were as likely to be smoking at the time of follow-up as nonusers (odds ratio, 1.0; 95% confidence interval, 0.5-1.7). Using an intention-to-treat analysis, E-cigarette users were twice as likely to be smoking at the time of follow-up as nonusers (odds ratio, 2.0; 95% confidence interval, 1.2-3.3). CONCLUSIONS: The high rate of E-cigarette use observed is consistent with recent articles highlighting increased E-cigarette use in the general population. The current longitudinal findings raise doubts concerning the usefulness of E-cigarettes for facilitating smoking cessation among patients with cancer. Further research is needed to evaluate the safety and efficacy of E-cigarettes as a cessation treatment for patients with cancer.

Impact of symptom burden in post-surgical non-small cell lung cancer survivors.

PURPOSE: Pain, fatigue, dyspnea, and distress are commonly reported cancer-related symptoms, but few studies have examined the effects of multiple concurrent symptoms in longer-term cancer survivors. We examined the impact of varying degrees of symptom burden on health-related quality of life (HRQOL) and performance status in surgically treated non-small cell lung cancer (NSCLC) survivors. METHODS: A sample of 183 NSCLC survivors 1-6 years post-surgical treatment completed questionnaires assessing five specific symptoms (pain, fatigue, dyspnea, depression, and anxiety), HRQOL, and performance status. The number of concurrent clinically significant symptoms was calculated as an indicator of symptom burden. RESULTS: Most survivors (79.8 %) had some degree of symptom burden, with 30.6 % reporting one clinically significant symptom, 27.9 % reporting two symptoms, and 21.3 % reporting three or more symptoms. Physical HRQOL significantly decreased as the degree of symptom burden increased, but mental HRQOL was only significantly decreased in those with three or more symptoms. Receiver-operating characteristic (ROC) curves showed that having multiple concurrent symptoms (two or more) was most likely associated with limitations in functioning (area under a ROC curve = 0.75, sensitivity = 0.81, specificity = 0.54). CONCLUSIONS: Two or more clinically significant symptoms are identified as the "tipping point" for showing adverse effects on HRQOL and functioning. This highlights the need for incorporating multiple-symptom assessment into routine clinical practice. Comprehensive symptom management remains an important target of intervention for improved post-treatment HRQOL and functioning among lung cancer survivors.

Optimal management of malignant pleural effusions (results of CALGB 30102).

The optimal strategy to achieve palliation of malignant pleural effusions (MPEs) is unknown. This multi-institutional, prospective, randomized trial compares 2 established methods for controlling symptomatic unilateral MPEs. Patients with unilateral MPEs were randomized to either daily tunneled catheter drainage (TCD) or bedside talc pleurodesis (TP). This trial is patterned after a previous randomized trial that showed that bedside TP was equivalent to thoracoscopic TP (CALGB 9334). The primary end point of the current study was combined success: consistent/reliable drainage/pleurodesis, lung expansion, and 30-day survival. A secondary end point, survival with effusion control, was added retrospectively. This trial randomized 57 patients who were similar in terms of age (62 years), active chemotherapy (28%), and histologic diagnosis (lung, 63%; breast, 12%; other/unknown cancers, 25%) to either bedside TP or TCD. Combined success was higher with TCD (62%) than with TP (46%; odds ratio, 5.0; P = .064). Multivariate regression analysis revealed that patients treated with TCD had better 30-day activity without dyspnea scores (8.7 vs. 5.9; P = .036), especially in the subgroup with impaired expansion (9.1 vs. 4.6; P = .042). Patients who underwent TCD had better survival with effusion control at 30 days compared with those who underwent TP (82% vs. 52%, respectively; P = .024). In this prospective randomized trial, TCD achieved superior palliation of unilateral MPEs than TP, particularly in patients with trapped lungs.

Factors associated with inconsistent sun protection in first-degree relatives of melanoma survivors.

First-degree relatives (FDRs) of melanoma survivors are at heightened risk for developing melanoma, but use sun protection inconsistently. To develop appropriate interventions, in this article we identify factors related to sun protection inconsistency in melanoma FDRs using ethnographic decision tree modeling. We conducted in-home interviews with 25 melanoma FDRs balanced across gender and sunbathing attitudes and identified factors related to daily decision making about use of sunscreen, shade seeking, hats, and clothing. Results indicated primary facilitators for sun protection involved water settings and sunny weather. Physical activities such as exercise served to promote as well as inhibit sun protection. If participants anticipated shade cover, they tended to forgo other sun protection. The use of hats and clothing was often dictated by nonsun-protection goals. Understanding factors related to inconsistent sun protection with detail and nuance is an important prerequisite to interventions aimed to improve sun-protection maintenance in this population.

Impact of an LGBTQ Cultural Competence Training Program for Providers on Knowledge, Attitudes, Self-Efficacy, and Intensions.

This paper describes the development and implementation of a robust lesbian, gay, bisexual, transgender, and queer (LGBTQ) cultural competence curriculum for training health and human service providers across New York State. Between 2013-2018, The National LGBT Cancer Network developed and published Best Practices in Creating and Delivering LGBTQ Cultural Competency Trainings for Health and Social Service Agencies and designed a training curriculum. They also conducted Train the Trainer sessions, and evaluated pre- and post- curriculum knowledge, attitudes, self-efficacy and intentions of individuals who attended educational sessions conducted by the certified trainers. Most respondents improved from pretest to posttest, with significant improvements in knowledge, attitudes, self-efficacy and intentions. An increase in self-efficacy was significantly associated with pre- to posttest improvement in respondent intention. Future research should focus on what components specifically bolster self-efficacy and intention. Increasing the number of health and human service providers who are trained to address the needs of this population is an important step toward providing culturally competent care.

Perceived risk for cancer in an urban sexual minority.

Lesbians, gay men, and bisexuals are a sexual minority experiencing elevated cancer risk factors and health disaparites, e.g., elevated tobacco use, disproportionate rates of infection with human immunodeficiency virus. Little attention has been paid to cancer prevention, education, and control in sexual minorities. This study describes cancer risk perceptions and their correlates so as to generate testable hypotheses and provide a foundation for targeting cancer prevention and risk reduction efforts in this high risk population. A cross-sectional survey of affiliates of a large urban community center serving sexual minority persons yielded a study sample of 247 anonymous persons. The survey assessed demographics, absolute perceived cancer risk, cancer risk behaviors, desired lifestyle changes to reduce cancer risk, and psychosocial variables including stress, depression, and stigma. Univariate and multivariate nonparametric statistics were used for analyses. The sample was primarily white non-Hispanic, middle-aged, and > 80% had at least a high school education. Mean values for absolute perceived cancer risk (range 0-100% risk), were 43.0 (SD = 25.4) for females, and for males, 49.3 (SD = 24.3). For females, although the multivariate regression model for absolute perceived cancer risk was statistically significant (P < .05), no single model variable was significant. For men, the multivariate regression model was significant (P < .001), with endorsement of "don't smoke/quit smoking" to reduce personal cancer risk (P < .001), and greater number of sexual partners (P = .054), positively associated with absolute perceived risk for cancer. This study provides novel data on cancer risk perceptions in sexual minorities, identifying correlates of absolute perceived cancer risk for each gender and several potential foci for cancer prevention interventions with this at-risk group.

Qualitative evaluation of a new tobacco cessation training curriculum for patient navigators.

Treatments for tobacco dependence exist but are underutilized, particularly among low-income and minority smokers. Patient navigation has been shown to help patients overcome barriers to quality care. In preparation for testing the feasibility of integrating tobacco cessation patient navigation into primary care, this paper describes the development and qualitative evaluation of a new curriculum for training patient navigators to address cessation treatment barriers faced by low-income, minority smokers who are advised to quit by their physicians. Thematic text analysis of transcripts obtained from focus groups with experienced patient navigators (n = 19) was conducted. Participants endorsed patient navigation as a relevant strategy for addressing tobacco cessation treatment barriers and made several recommendations regarding the knowledge, core competencies, and skills needed to conduct tobacco cessation patient navigation. This curriculum could be used by existing patient navigation training centers or made available as a self-guided continuing education program for experienced navigators who wish to expand their navigation interventions to include a tobacco cessation focus.

Physical, psychological, and social sequelae following hematopoietic stem cell transplantation: a review of the literature.

OBJECTIVE: This article reviews recent literature on adults' quality of life following hematopoietic stem cell transplantation (HSCT). METHODS: We identified 22 prospective reports with at least 20 participants at baseline through a search of databases (Medline and PsycInfo) and handsearching of articles published from 2002 to October 2007. If longitudinal data were not available or were scarce for a particular topic or time point, cross-sectional studies were reviewed. RESULTS: Although physical, psychological, and social aspects of quality of life tend to improve during the years following transplantation, a significant proportion of HSCT survivors experience persistent anxiety and depressive symptoms, fatigue, sexual dysfunction, and fertility concerns. Despite ongoing treatment side effects, the majority of HSCT survivors resume their work, school, or household activities. CONCLUSION: We conclude that theory-driven research with larger samples is needed to identify subgroups of HSCT survivors with adjustment difficulties. Such research would examine survivors' evolving standards and definitions of quality of life to improve the accuracy and meaningfulness of assessment and incorporate biological, psychological, and contextual factors that may contribute to positive adjustment.

Intention to quit smoking among lesbian, gay, bisexual, and transgender smokers.

INTRODUCTION: Smoking is highly prevalent among lesbian, gay men, bisexual, and transgender (LGBT) persons and contributes to health disparities. Guided by the theory of planned behavior (TPB), we identified beliefs related to attitudes, perceived behavioral control, and subjective norms, as well as LGBT-specific variables, to explain variance in intention to quit smoking in the next 6 months in LGBT smokers. METHODS: Individual interviews (n = 19) identified beliefs about quitting smoking and LGBT-salient variables and aided in survey development. Surveys were sent to a random sample from an LGBT community center's mailing list and center attendees, with a 25.4% response rate. Bivariate and multivariate analyses were conducted with the final sample of 101 smokers. RESULTS: No sociodemographic or LGBT-specific variables beyond the TPB constructs were related to intention to quit smoking. A multivariate TPB model explained 33.9% of the variance in quitting intention. More positive attitudes and specific beliefs that cessation would make smokers feel more like their ideal selves and improve health and longevity were related to greater intention to quit (p values < .05). Subjective norm and perceived behavioral control were marginally significant, with perceived approval of partners and others and beliefs that life goal achievement would make it easier to quit positively related to intention. Depression and stress levels were high. DISCUSSION: This is among the first studies to examine theoretically grounded variables related to intention to quit smoking in LGBT smokers. We identified specific behavioral, normative, and control beliefs that can serve as intervention targets to reduce smoking in the LGBT community.

The QuitIT Coping Skills Game for Promoting Tobacco Cessation Among Smokers Diagnosed With Cancer: Pilot Randomized Controlled Trial.

BACKGROUND: Although smoking cessation apps have become popular, few have been tested in randomized clinical trials or undergone formative evaluation with target users. OBJECTIVE: We developed a cessation app targeting tobacco-dependent cancer patients. Game design and behavioral rehearsal principles were incorporated to help smokers identify, model, and practice coping strategies to avoid relapse to smoking. In this randomized pilot trial, we examined feasibility (recruitment and retention rates), acceptability (patient satisfaction), quitting self-confidence, and other cessation-related indices to guide the development of a larger trial. METHODS: We randomized 42 English-speaking cancer patients scheduled for surgical treatment to either the Standard Care (SC; telecounseling and cessation pharmacotherapies) or the experimental QuitIT study arm (SC and QuitIT game). Gameplay parameters were captured in-game; satisfaction with the game was assessed at 1-month follow-up. We report study screening, exclusion, and refusal reasons; compare refusal and attrition by key demographic and clinical variables; and report tobacco-related outcomes. RESULTS: Follow-up data were collected from 65% (13/20) patients in the QuitIT and 61% (11/18) in SC arms. Study enrollees were 71% (27/38) females, 92% (35/38) white people, and 95% (36/38) non-Hispanic people. Most had either lung (12/38, 32%) or gastrointestinal (9/38, 24%) cancer. Those dropping out were less likely than completers to have used a tablet (P<.01) and have played the game at all (P=.02) and more likely to be older (P=.05). Of 20 patients in the QuitIT arm, 40% (8/20) played the game (system data). There were no differences between those who played and did not play by demographic, clinical, technology use, and tobacco-related variables. Users completed an average of 2.5 (SD 4.0) episodes out of 10. A nonsignificant trend was found for increased confidence to quit in the QuitIT arm (d=0.25, 95% CI -0.56 to 1.06), and more participants were abstinent in the QuitIT group than in the SC arm (4/13, 30%, vs 2/11, 18%). Satisfaction with gameplay was largely positive, with most respondents enjoying use, relating to the characters, and endorsing that gameplay helped them cope with actual smoking urges. CONCLUSIONS: Recruitment and retention difficulties suggest that the perihospitalization period may be a less than ideal time for delivering a smoking cessation app intervention. Framing of the app as a "game" may have decreased receptivity as participants may have been preoccupied with hospitalization demands and illness concerns. Less tablet experience and older age were associated with participant dropout. Although satisfaction with the gameplay was high, 60% (12/20) of QuitIT participants did not play the game. Paying more attention to patient engagement, changing the intervention delivery period, providing additional reward and support for use, and improving cessation app training may bolster feasibility for a larger trial. TRIAL REGISTRATION: ClinicalTrials.gov NCT01915836; https://clinicaltrials.gov/ct2/show/NCT01915836 (Archived by WebCite at http://www.webcitation.org/73vGsjG0Y).

Psychological distress in long-term survivors of hematopoietic stem cell transplantation.

The prevalence of psychological distress is higher in cancers with poorer prognoses and speculated as higher in those receiving more aversive treatments. Since hematopoietic stem cell transplant (HSCT) is one of the most taxing cancer treatments to endure and is therefore likely to have more long-term sequelae, this study examined psychological distress symptoms in long-term HSCT survivors who were at least 1 year post-transplant. Participants in this cross-sectional study were recruited from urban medical centers as part of a larger study of HSCT survivors. The sample comprised 236 adults who were on average 3.4 years since transplant. Psychological distress was measured by a commonly used self-report questionnaire, the Brief Symptom Inventory. Clinically elevated psychological distress caseness was present in 43% of long-term HSCT survivors. Elevations were highest on clinical subscales of obsessive-compulsiveness, somatization, and psychoticism. However, item-level analyses revealed that the content of the most frequently reported symptoms included trouble with memory and feelings of loneliness. Results of this study suggest that HSCT survivors may experience memory and existential concerns and that such symptoms may not represent psychiatric sequelae.

Participant characteristics and clinical trial decision-making factors in AIDS malignancy consortium treatment trials for HIV-infected persons with cancer (AMC #S006).

BACKGROUND: Overall, people living with HIV/AIDS (PLWHA) are living longer, but compared with the general population, they are at elevated risk for numerous AIDS-defining and non-AIDS-defining cancers. The AIDS Malignancy Consortium (AMC) is dedicated to conducting clinical trials aimed at prevention and treatment of cancers among PLWHA. OBJECTIVE: To examine patient-level characteristics and perceptions that influence decision-making regarding AMC treatment trial participation. METHODS: PLWHA diagnosed with cancer or anal high-grade intraepithelial neoplasia who were ≥18 years old and offered participation on a therapeutic AMC clinical trial were eligible. Participants completed a 17-item survey assessing sociodemographic and other factors potentially influencing decision-making regarding trial participation. RESULTS: The sample of 67 participants was mainly male (n = 62, 92.5%), non-Hispanic (89.5%) and white (67.2%), with a mean age of 48.3 years. About half of participants were screened for lymphoma studies. Nearly all (98.5%) of the participants learned about AMC clinical trials from a medical provider, most (73.1%) knew little about clinical trials in general, and half decided on trial participation on their own. Altruism was the most frequently cited reason for trial participation. Participant recommendations for improving AMC trial accrual included systems changes to speed access to clinical trials and reduce participant burden. CONCLUSIONS: This formative study highlights the perceived benefits to others, i.e. altruism, as an important factor in trial decision-making, little knowledge about clinical trials in general, and the role of physicians in informing participants about clinical trials. Future research should address knowledge barriers and explore systems- and provider-level factors affecting accrual to AMC trials.