Journal of the National Cancer Institute. Monographs最新文献

Introduction: Policy interventions to reduce racial/ethnic cigarette smoking and related health disparities are needed to improve health equity. Simulation models can be useful in gauging the impact of tobacco control policies on trends in smoking-related outcomes, but few have systematically analyzed the impact of tobacco control policies across racial/ethnic groups.

Methods: We developed 3 separate SimSmoke models for the non-Hispanic White (NHW), non-Hispanic Black (NHB), and Hispanic populations. Following a first-order Markov process, population projections evolve through net immigration and death rates, and smoking prevalence evolves through initiation, cessation, and relapse. The models incorporate policies implemented from 2011 to 2023 and are used to consider trends in NHW, NHB, and Hispanic smoking prevalence and smoking-attributable death and the impact of policies on those trends.

Results: The models indicate major differences in smoking trends and smoking-attributable deaths (SADs) among NHW, NHB, and Hispanic adults, with NHB males experiencing the smallest smoking decline through 2023 and having the highest 2023 smoking prevalence. The models predict major differences in the impact of tobacco control policies, especially the greater effect of cigarette taxes on NHB and Hispanic adults than NHW adults and the reduced impact of T21 laws on NHB compared to NHW and Hispanic adults.

Discussion: The models predict large differences in levels and rates of decline in NHW, NHB, and Hispanic smoking prevalence, leading to widening health disparities between racial/ethnic groups. Further study is needed on differential race/ethnicity impacts of tobacco control policies and the role of cigars, e-cigarettes, and other product use.

This paper describes the process used by the Social Justice Competencies Subcommittee to identify social justice competency domains and related constructs that inform social justice approaches to research, practice, policies, and government infrastructures. The Subcommittee held monthly virtual meetings from November 2023 to September 2024. A literature review was conducted to identify existing competency measures. Voting and consensus processes were used to determine the content validity of the domains and constructs. The Subcommittee identified 5 domains and 59 constructs that describe (1) internal awareness; (2) attitudes, values, and beliefs; (3) knowledge that influences a social justice orientation or action; (4) skills in practice that incite others into action; and (5) skills in practice that build strong research and practice teams to engage in social justice approaches. Endgame strategies to eliminate chronic disease and risk factor disparities require that the workforce has the competencies to execute impactful research, practice, and policies.

More than 13 million adults in the United States identify as a sexual or gender minority (SGM). This study aimed to describe the barriers and facilitators to SOGI data collection in health-care settings, looking to understand current and past practices with a goal of improving future data collection. With the aid of community-based organizations (CBOs) focused either on cancer or LGBTQ+ issues, 31 individuals were recruited to participate in 4 focus groups. Focus groups were analyzed using thematic analysis, and 5 themes were identified: barriers to SOGI data collection; facilitators to SOGI data collection; discrimination; disclosing SOGI status; shifting landscape of SOGI status and data collection; and practical experiences of SOGI data collection. More than half of the participants identified as Black/African American, and the majority of focus groups participants were sexual or gender minorities. Our study identified gaps in current SOGI data collection practices, experiences of harm in disclosure, and areas for growth and improvement in the overall health experiences for SGM individuals.

Background: Though sexual and gender minority people experience multiple cancer disparities, they remain largely invisible in oncology clinical care. Despite repeated calls by national medical and oncology organizations to address the lack of sexual orientation and gender identity data, there remains a dearth of information to guide research, clinical care, and creation of national priorities to address important health inequities. We aimed to develop effective strategies to collect sexual orientation and gender identity data within our Midwestern Comprehensive Cancer Center based on barriers and facilitators identified by community members, staff, and clinicians.

Methods: We conducted 5 focus groups of sexual and gender minority and cisgender, heterosexual community members (n = 24). We interviewed clinicians and registration staff across 3 ambulatory cancer clinics (n = 27). Rapid qualitative analysis was used to identify themes from focus groups and interviews.

Results: Focus group participants' average age was 37 years with a majority identifying as White (79%, n = 19) and non-Hispanic (92%, n = 22); most participants were women (58%, n = 14) and queer (58%, n = 14). Staff and clinicians' average age was 40 years; most identified as White (82%, n = 22), women (82%, n = 22), and straight (82%, n = 22). Qualitative themes to guide sexual orientation and gender identity data collection included comfort and trust, support services, physical space, training, data collection procedures, data access and privacy, and influence on care.

Conclusions: To encourage patient disclosure, a supportive environment where privacy is upheld and health-care staff are trained to competently interact with lesbian, gay, bisexual, transgender, queer, plus patients is needed. We also share our process of sexual orientation and gender identity data collection implementation at our cancer hospital.

Background: Sexual and gender minority (SGM) patients face disparities in cancer care, partly due to the lack of sexual orientation and gender identity (SOGI) data collection. We sought to use electronic health record-based metrics, integrated with SOGI data to characterize the SGM cancer population with the future goal of addressing disparities within this population.

Methods: The cancer population was identified using Epic's active cancer registry at Thomas Jefferson University Hospital. Additional data elements linked included SOGI information, general demographics, alcohol and drug use, molecular diagnostic information, and census-level SDOH data. Z-tests assessed differences in cancer risk factors, social vulnerability index factors, and genomic testing between the 2 populations.

Results: A total of 92 116 patients were identified from the active cancer registry with SOGI data available on 9544 patients (565 SGM and 8979 non-SGM patients). The SGM patients were younger, less likely to be married, and had higher rates of cancer associated risk factors. When comparing census-level social vulnerability data, SGM patients were overall more vulnerable. The groups had even representation of cancer types aside from higher anal cancer and Kaposi's sarcoma in the SGM population. No significant differences in cancer genomic testing were noted.

Conclusions: This study highlights the opportunities of integrating SOGI data with clinical and other data types, revealing disparities in cancer risk factors, social determinants of health, and specific cancer types. These findings emphasize the need for targeted interventions and personalized care to address the specific needs of SGM cancer patients and improve their health outcomes.

Background: Sexual and gender minorities (SGM) experience health disparities across cancer care continuum. However, inconsistent sexual orientation and gender identity (SOGI) data collection precludes measurement of the burden, and points to intervene. Comprehensive cancer centers (CCC) and their network hospitals are integrating SOGI data collection in their electronic medical records (EMRs), but significant challenges and barriers remain in data completion.

Methods: We evaluated the completeness of SOGI data in EMRs between 2021 and 2023 for cancer registry patients from 3 of the 54 CCC network hospitals/clinics in western PA used descriptive and bivariate statistics to compare between those with completed data and those that did not.

Results: Results found 12% of patients with completed SOGI data with notable differences by sex-at-birth, urban/rural status, and age. SOGI data completion rates increased each year significantly but overall remained low.

Conclusion: Strong leadership, culturally sensitive education of clinical, research staff and patients, routine monitoring of SOGI data, and education of SGM on self-advocacy can address some of these gaps.

Background: Routine collection and use of sexual orientation and gender identity data can assist in understanding and addressing the health disparities that affect lesbian, gay, bisexual, transgender, queer+ (LGBTQ+), also known as sexual and gender minority, individuals and communities. This study explored the implementation of a culturally relevant sexual and gender minority/sexual orientation and gender identity training program at a National Cancer Institute (NCI)-Designated Comprehensive Cancer Center.

Methods: The training consisted of 6 in-person 15-minute modules or 3 virtual 30-minute modules that occurred during established high-reliability organization huddles attended by oncology faculty and staff. Module topics were (1) Building LGBTQ+ Knowledge & LGBTQ+ Cancer Disparities, (2) Creating an Inclusive Environment, (3) Recovering From Misgendering/Making Assumptions, (4) How to Receive & Respond to Feedback, (5) Witnessing & Responding to Discrimination, and (6) Making and Sustaining a Change. All high-reliability organization attendees were considered eligible for participation and were provided with pretraining and post-training surveys. Survey items included comfort caring for sexual and gender minority patients, practice collecting sexual orientation and gender identity data, knowledge of sexual and gender minority health, and demographics.

Results: A total of 344 individuals completed the presurvey and 187 completed the postsurvey. Postsurvey results demonstrated a statistically significant improvement in self-perceived knowledge about sexual and gender minority health (scale: 0-100, with 100 = highest; presurvey vs postsurvey, 69 vs 84; P < .001). Respondents also reported statistically significant improvements in confidence in engaging with sexual orientation and gender identity questions (53 vs 79, P < .001) as well as intention to collect patient sexual orientation and gender identity information (49 vs 75, P < .001). Notably, sexual orientation and gender identity data collection tracking demonstrated a 311% increase in sexual orientation and 262% in gender identity disclosure during the study period.

Conclusion: Despite the availability of sexual orientation and gender identity data fields within electronic health records, sexual orientation and gender identity disclosure remains an ongoing nationwide problem. Use of culturally relevant sexual and gender minority/sexual orientation and gender identity training can help improve oncology staff and clinician sexual and gender minority knowledge and confidence when engaging patients with and subsequent documentation of sexual orientation and gender identity data, resulting in improvement of data completion.

Background: Patient navigators have a range of training, lived experience, and empathy to draw on when working with patients facing breast cancer diagnoses. We examined the knowledge and impact of sexual orientation and gender identity (SOGI) data training for patient navigators who work with individuals with a diagnosis of breast cancer.

Methods: We offered a 2-hour SOGI data training to patient navigators working with individuals with known breast cancer diagnoses. This training was preceded by a pretest to gauge work experience, and initial knowledge of SOGI issues and comfort with LGBTQ+ populations. Following the training, we conducted one-on-one qualitative interviews of open-ended questions with each participant in lieu of a posttest.

Results: Five patient navigators participated in the training. The participants work experience in medical clinics ranged from 2 to 30 years (mean = 15.8 years), and in oncology clinics from 2 to 18 years (mean = 10.4 years). Participants had a median rating of "somewhat comfortable" for comfort with populations who are sexual minorities or whose gender identity is different than their own, and a median rating of "absolutely comfortable" for comfort with collecting SOGI data. Qualitative interviews illuminated that all the participants requested either a much longer training session or multiple training sessions to delve deeper into specific topics. Topics requested include specific sessions on each of the populations under the LGBTQ+ umbrella, as well as intersectionality for understanding social inequality.

Conclusions: This study supports previous research showing the importance of patient navigator training for diverse populations, especially LGBTQ+ populations. We add to the research focused on oncology settings, and more specifically, breast cancer clinics. Overall, the patient navigators practicing in this highly academic setting were knowledgeable and comfortable working with LGBTQ+ populations yet yearned to learn more. Adding an intersectional perspective during the training helped the participants connect this issue of patient equity with other issues, which was powerful for them. This training can be expanded to include patient navigators with community experience or working in other types of medical settings, to patient navigators working with individuals with diagnoses of other tumor types, and to clinicians.

Background: Lack of sexual orientation and gender identity (SOGI) collection hinders the ability to identify cancer disparities, create opportunities for improvement, and reveal the burden of cancer among sexual and gender minority (SGM) populations. Our institution is one of the first NCI-Designated Comprehensive Cancer Centers to collect SOGI as standard-of-care demographics.

Methods: This analysis includes 118 320 patients who came to the H. Lee Moffitt Cancer Center & Research Institute ("Moffitt") between January 1, 2016 and December 31, 2023 and completed the institutional standard-of-care electronic patient questionnaire. Descriptive analyses were conducted to assessed overall and age-specific differences between SGM and non-SGM patients (ie, cisgender-heterosexual) for demographics, SOGI disclosure, clinical covariates, and psychosocial and quality-of-life needs.

Results: Compared with non-SGM patients, SGM patients were statistically significant younger, single, self-identified as racial and ethnic minorities, reported higher psychosocial and quality-of-life needs, and had higher-than-expected rates for several specific cancer sites.

Conclusions: Revealing these real-world cancer disparities among SGM patients based on only 7 years of SOGI data collection highlights the fundamental importance of systematic collection of this demographic information for identifying and eventually mitigating health disparities.

Cancer research focusing on sexual and gender minority populations is limited by lack of sexual orientation and gender identity data in medical records and cancer registries. We implemented multimethod sexual orientation and gender identity data collection in 2 pilot clinics at a National Cancer Institute-Designated Comprehensive Cancer Center, with first-line collection by telephone intake schedulers and second-line via physical form in clinics. Changes in data completion were compared with 2 control clinics, and staff shared intervention experiences. In pilot clinics, completion rates statistically significantly increased for gender identity (from 55.6% to 65.1%), sex assigned at birth (from 58.4% to 63.2%), sexual orientation (from 45.1% to 53.7%), and all 3 (from 37.8% to 44.7%) when compared with control clinics (P < .05). Staff reported a mix of patient reactions to sexual orientation and gender identity data collection. Sexual orientation and gender identity data collection can be enhanced in the cancer care setting with multimethod approaches.