Sexual Orientation and Gender Identity Data Collection in Oncology Practice: Findings of an ASCO Survey.

PURPOSE: Lack of collection of sexual orientation and gender identity (SOGI) data in oncology practices limits assessment of sexual and gender minority (SGM) cancer patients' experiences and restricts opportunities to improve health outcomes of SGM patients. Despite national calls for routine SOGI data collection, individual-level and institutional barriers hinder progress. This study aimed to identify these barriers in oncology. METHODS: An online survey of ASCO members and others assessed SOGI data collection in oncology practices, institutional characteristics related to SOGI data collection, respondents' attitudes about SOGI data and SGM patients, and respondent demographics. Logistic regression calculated adjusted odds ratios (ORs) and 95% CIs for factors associated with sexual orientation (SO) and gender identity (GI) data collection. RESULTS: Less than half of 257 respondents reported institutional SO and GI data collection (40% and 46%, respectively), whereas over a third reported no institutional data collection (34% and 32%, respectively) and the remainder were unsure (21% and 17%, respectively). Most respondents felt that knowing both SO and GI was important for quality care (77% and 85%, respectively). Collection of SO and GI was significantly associated in separate models with leadership support (ORs = 8.01 and 6.02, respectively), having resources for SOGI data collection (ORs = 10.6 and 18.7, respectively), and respondents' belief that knowing patient SO and GI is important (ORs = 4.28 and 2.76, respectively). Themes from qualitative comments mirrored the key factors identified in our quantitative analysis. CONCLUSION: Three self-reinforcing factors emerged as critical drivers for collecting SOGI data: leadership support, dedicated resources, and individual respondents' attitudes. Policy mandates, implementation science, and clinical reimbursement are strategies to advance meaningful data collection and use in clinical practice.

Identification of Transgender People With Cancer in Electronic Health Records: Recommendations Based on CancerLinQ Observations.

PURPOSE: Cancer prevalence and outcomes data, necessary to understand disparities in transgender populations, are significantly hampered because gender identity data are not routinely collected. A database of clinical data on people with cancer, CancerLinQ, is operated by the ASCO and collected from practices across the United States and multiple electronic health records. METHODS: To attempt to identify transgender people with cancer within CancerLinQ, we used three criteria: (1) International Classification of Diseases 9/10 diagnosis (Dx) code suggestive of transgender identity; (2) male gender and Dx of cervical, endometrial, ovarian, fallopian tube, or other related cancer; and (3) female gender and Dx of prostate, testicular, penile, or other related cancer. Charts were abstracted to confirm transgender identity. RESULTS: Five hundred fifty-seven cases matched inclusion criteria and two hundred and forty-two were abstracted. Seventy-six percent of patients with Dx codes suggestive of transgender identity were transgender. Only 2% and 3% of the people identified by criteria 2 and 3 had evidence of transgender identity, respectively. Extrapolating to nonabstracted data, we would expect to identify an additional four individuals in category 2 and an additional three individuals in category 3, or a total of 44. The total population in CancerLinQ is approximately 1,300,000. Thus, our methods could identify 0.003% of the total population as transgender. CONCLUSION: Given the need for data regarding transgender people with cancer and the deficiencies of current data resources, a national concerted effort is needed to prospectively collect gender identity data. These efforts will require systemic efforts to create safe healthcare environments for transgender people.

Multilevel Barriers to Engagement in the HIV Care Continuum Among Residents of the State of Rhode Island Living with HIV.

An estimated 1.2 million people in the United States are living with HIV. Of those living with HIV, only 40% are engaged in HIV care, 37% are prescribed antiretroviral therapy (ART), and 30% are virally suppressed. Individual-, interpersonal-, and structural-level factors that represent barriers to engagement along the HIV care continuum are important to identify in order to inform priority areas and interventions. 296 adult residents of Rhode Island living with HIV between November 2015 and January 2016 were asked to participate in an observational study (Ryan White Part B Health Resources and Services Administration-funded consumer needs assessment) to identify the multilevel factors associated with engagement in the HIV care continuum outcomes (i.e., being retained in care, being prescribed ART, adhering to ART, and achieving viral suppression-all in the past 12 months). Multivariable logistic regression models were fit to model the four HIV care continuum outcomes. The majority of participants were over age 30 (92.5%), racial/ethnic minorities (67.1%), cisgender men (56.9%), and identified as straight/heterosexual (60.5%). Overall, 95.2% of participants were retained in care in the past 12 months, 93.0% were prescribed ART, 87.1% were currently adherent to ART, and 68.2% were virally suppressed. Factors positively associated with not being retained in HIV care in the past 12 months included having no income and challenges navigating the HIV care system. Being age 18-29 and having a provider who does not know how to treat people with HIV/AIDS were each positively associated with not being prescribed ART. Factors positively associated with not being adherent to ART included being age 18-29 and substance use in the past 12 months. Finally, having private insurance and having a provider who is not trustworthy were each positively associated with not being virally suppressed. Regardless of the fact that many of the individuals living with HIV in this sample are able to achieve an undetectable viral load, challenges with retention in HIV care and ART adherence threaten to undermine the clinical and public health benefits of treatment as prevention. Future longitudinal research conducted to better understand how to boost the effectiveness of treatment as prevention in this population should focus on examining the unique multilevel factors, polymorbidities, and conditions (mostly social determinants of health including housing, socioeconomic position, etc.) associated with suboptimal engagement across the stages of the HIV care continuum.

[Implicit value judgments in the measurement of health inequalities]. / Juicios de valor implícitos en la medición de las desigualdades en salud.

CONTEXT: Quantitative estimates of the magnitude, direction, and rate of change of health inequalities play a crucial role in creating and assessing policies aimed at eliminating the disproportionate burden of disease in disadvantaged populations. It is generally assumed that the measurement of health inequalities is a value-neutral process, providing objective data that are then interpreted using normative judgments about whether a particular distribution of health is just, fair, or socially acceptable. METHODS: We discuss five examples in which normative judgments play a role in the measurement process itself, through either the selection of one measurement strategy to the exclusion of others or the selection of the type, significance, or weight assigned to the variables being measured. FINDINGS: Overall, we find that many commonly used measures of inequality are value laden and that the normative judgments implicit in these measures have important consequences for interpreting and responding to health inequalities. CONCLUSIONS: Because values implicit in the generation of health inequality measures may lead to radically different interpretations of the same underlying data,we urge researchers to explicitly consider and transparently discuss the normative judgments underlying their measures. We also urge policymakers and other consumers of health inequalities data to pay close attention to the measures on which they base their assessments of current and future health policies.

Juicios de valor implícitos en la medición de las desigualdades en salud / Implicit value judgments in the measurement of health inequalities

CONTEXTO: Los estimados cuantitativos de magnitud, dirección e índice de cambio de las desigualdades en salud juegan un papel crucial en la creación y evaluación de las políticas destinadas a eliminar la desproporcionada carga de enfermedad en las poblaciones carenciadas. En general se asume que la medición de las desigualdades en salud es un proceso con un valor neutral que brinda datos objetivos que luego se interpretan usando juicios normativos sobre si una particular distribución de la salud es justa, ecuánime o socialmente aceptable. MÉTODOS: Se discuten cinco ejemplos en los cuales los juicios normativos juegan un papel en la medición del proceso en sí, sea mediante la selección de una estrategia de medición sobre la exclusión de otras como mediante la selección del tipo, importancia o peso asignados a las variables que se están midiendo. HALLAZGOS: En términos generales, encontramos que muchas medidas de desigualdad comúnmente usadas son subjetivas y que los juicios normativos implícitos en estas medidas tienen importantes consecuencias de interpretación y respuesta a las desigualdades en salud. CONCLUSIONES: Debido a que los valores implícitos en la generación de las medidas de desigualdad en salud pueden llevar a interpretaciones radicalmente diferentes de los mismos datos subyacentes, instamos a los investigadores a considerar en forma explícita y discutir con transparencia los juicios normativos subyacentes en sus medidas. También instamos a los responsables de las políticas y a otros consumidores de datos sobre desigualdades en salud a prestar mucha atención a las medidas sobre las cuales basan su evaluación sobre las políticas de salud actuales y futuras.

CONTEXT: Quantitative estimates of the magnitude, direction, and rate of change of health inequalities play a crucial role in creating and assessing policies aimed at eliminating the disproportionate burden of disease in disadvantaged populations. It is generally assumed that the measurement of health inequalities is a value-neutral process, providing objective data that are then interpreted using normative judgments about whether a particular distribution of health is just, fair, or socially acceptable. METHODS: We discuss five examples in which normative judgments play a role in the measurement process itself, through either the selection of one measurement strategy to the exclusion of others or the selection of the type, significance, or weight assigned to the variables being measured. FINDINGS: Overall, we find that many commonly used measures of inequality are value laden and that the normative judgments implicit in these measures have important consequences for interpreting and responding to health inequalities. CONCLUSIONS: Because values implicit in the generation of health inequality measures may lead to radically different interpretations of the same underlying data,we urge researchers to explicitly consider and transparently discuss the normative judgments underlying their measures. We also urge policymakers and other consumers of health inequalities data to pay close attention to the measures on which they base their assessments of current and future health policies.

Implicit value judgments in the measurement of health inequalities.

CONTEXT: Quantitative estimates of the magnitude, direction, and rate of change of health inequalities play a crucial role in creating and assessing policies aimed at eliminating the disproportionate burden of disease in disadvantaged populations. It is generally assumed that the measurement of health inequalities is a value-neutral process, providing objective data that are then interpreted using normative judgments about whether a particular distribution of health is just, fair, or socially acceptable. METHODS: We discuss five examples in which normative judgments play a role in the measurement process itself, through either the selection of one measurement strategy to the exclusion of others or the selection of the type, significance, or weight assigned to the variables being measured. FINDINGS: Overall, we find that many commonly used measures of inequality are value laden and that the normative judgments implicit in these measures have important consequences for interpreting and responding to health inequalities. CONCLUSIONS: Because values implicit in the generation of health inequality measures may lead to radically different interpretations of the same underlying data, we urge researchers to explicitly consider and transparently discuss the normative judgments underlying their measures. We also urge policymakers and other consumers of health inequalities data to pay close attention to the measures on which they base their assessments of current and future health policies.

Access to mammography screening in a large urban population: a multi-level analysis.

OBJECTIVE: To understand area-based sociodemographics, physician and medical practice characteristics, and community indicators associated with mammography use in Los Angeles County. An earlier multi-level analysis by Gumpertz et al. found that distance to the nearest mammography facility helped explain the higher proportion of Latinas diagnosed with late stage breast cancer compared with non-Latina Whites in Los Angeles County. Our study examined whether Latinas also have lower rates of mammography use. METHODS: We used a multi-level spatial modeling approach to examine individual and community level associations with mammography use among a diverse group of women aged 40-84 years in Los Angeles County. To build our multi-level spatial data set, we integrated five data sources: (1) 2001 California Health Interview Survey (CHIS) data, (2) 2001 Food and Drug Administration (FDA) certified mammography facility data, (3) 2003 LA Transit Authority data, (4) 2000 US Decennial Census data, and (5) 2001 Community Tracking Study (CTS) Physician's Survey data. RESULTS: Our study confirmed for Los Angeles County many associations for mammography use found in other locations. An unexpected finding was that women with limited English proficiency (predominantly Latina) were significantly more likely to have had a recent mammogram than English-proficient women. We also found that, after controlling for other factors, mammography use was higher in neighborhoods with a greater density of mammography facilities. CONCLUSION: Women with limited English proficiency were especially likely to report recent mammography in Los Angeles. This unexpected finding suggests that the intensive Spanish-language outreach program conducted by the Every Woman Counts (EWC) Program in low-income Latina communities in Los Angeles has been effective. Our study highlights the success of this targeted community-based outreach conducted between 1999 and 2001. These are the same populations that Gumpertz et al. identified as needing intervention. It would be useful to conduct another study of late-stage diagnosis in Los Angeles County to ascertain whether increased rates of mammography have also led to less late-stage diagnosis among Latinas in the neighborhoods where they are concentrated in Los Angeles.

Trends in area-socioeconomic and race-ethnic disparities in breast cancer incidence, stage at diagnosis, screening, mortality, and survival among women ages 50 years and over (1987-2005).

BACKGROUND: Breast cancer is the most commonly diagnosed cancer and the second leading cause of cancer death among women in the United States and varies systematically by race-ethnicity and socioeconomic status. Previous research has often focused on disparities between particular groups, but few studies have summarized disparities across multiple subgroups defined by race-ethnic and socioeconomic position. METHODS: Data on breast cancer incidence, stage, mortality, and 5-year cause-specific probability of death (100 - survival) were obtained from the Surveillance, Epidemiology, and End Results program and data on mammography screening from the National Health Interview Survey from 1987 to 2005. We used four area-socioeconomic groups based on the percentage of poverty in the county of residence (<10, 10-15, 15-20, +20%) and five race-ethnic groups (White, Black, Asian, American Indian, and Hispanic). We used summary measures of disparity based on both rate differences and rate ratios. RESULTS: From 1987 to 2004, area-socioeconomic disparities declined by 20% to 30% for incidence, stage at diagnosis, and 5-year cause-specific probability of death, and by roughly 100% for mortality, whether measured on the absolute or relative scale. In contrast, relative area-socioeconomic disparities in mammography use increased by 161%. Absolute race-ethnic disparities declined across all outcomes, with the largest reduction for mammography (56% decline). Relative race-ethnic disparities for mortality and 5-year cause-specific probability of death increased by 24% and 17%, respectively. CONCLUSIONS: Our analysis suggests progress towards race-ethnic and area-socioeconomic disparity goals for breast cancer, especially when measured on the absolute scale. However, greater progress is needed to address increasing relative socioeconomic disparities in mammography and race-ethnic disparities in mortality and 5-year cause-specific probability of death.

An overview of methods for monitoring social disparities in cancer with an example using trends in lung cancer incidence by area-socioeconomic position and race-ethnicity, 1992-2004.

The authors provide an overview of methods for summarizing social disparities in health using the example of lung cancer. They apply four measures of relative disparity and three measures of absolute disparity to trends in US lung cancer incidence by area-socioeconomic position and race-ethnicity from 1992 to 2004. Among females, measures of absolute and relative disparity suggested that area-socioeconomic and race-ethnic disparities increased over these 12 years but differed widely with respect to the magnitude of the change. Among males, the authors found substantial disagreement among summary measures of relative disparity with respect to the magnitude and the direction of change in disparities. Among area-socioeconomic groups, the index of disparity increased by 47% and the relative concentration index decreased by 116%, while for race-ethnicity the index of disparity increased by 36% and the Theil index increased by 13%. The choice of a summary measure of disparity may affect the interpretation of changes in health disparities. Important issues to consider are the reference point from which differences are measured, whether to measure disparity on the absolute or relative scale, and whether to weight disparity measures by population size. A suite of indicators is needed to provide a clear picture of health disparity change.

Neighborhood disadvantage and anger among older adults: social comparisons as effect modifiers.

Using data from a sample of 1,136 adults ages 65 and older in the District of Columbia and two adjoining counties in Maryland, we examine the association between neighborhood structural disadvantage and levels of anger. In addition, we test whether subjective financial comparisons with neighbors modify those effects differently for elders at different levels of income. We find that the association between neighborhood disadvantage and anger is positive among lower-income elders who feel financially advantaged relative to their neighbors. In contrast, the association between neighborhood disadvantage and anger is positive among higher-income elders who feel financially disadvantaged relative to their neighbors. Irrespective of income, neighborhood disadvantage is unrelated to anger among people who feel financially similar to their neighbors. We discuss the implications of our findings for the study of neighborhood context and health, underscoring interrelationships among inequality, social comparisons, and the stress process.

Stress, health, and the life course: some conceptual perspectives.

This article proposes several conceptual perspectives designed to advance our understanding of the material and experiential conditions contributing to persistent disparities in rates of morbidity and mortality among groups unequal in their social and economic statuses. An underlying assumption is that these disparities, which are in clear evidence at mid- and late life, may be anchored to earlier circumstances of the life course. Of particular interest are those circumstances resulting in people with the least privileged statuses having the greatest chances of exposure to health-related stressors. Among the stressors closely linked to status and status attainment are those that continue or are repeated across the life course, such as enduring economic strain and discriminatory experiences. Also taking a long-range toll on health are circumstances of stress proliferation, a process that places people exposed to a serious adversity at risk for later exposure to additional adversities. We suggest that this process can be observed in instances of trauma, in early out-of-sequence transitions, and in the case of undesired changes that disrupt behaviors and relationships in established roles. Effective effort to close the systemic health gaps must recognize their structural underpinnings.

Neighborhood problems and health among older adults: received and donated social support and the sense of mastery as effect modifiers.

OBJECTIVES: This study examines the associations between perceived neighborhood problems and mental and physical health, exploring the extent to which received social support, donated social support, and the sense of mastery moderate those associations. METHODS: In 2001-2002, face-to-face interviews were conducted with a sample of 1,167 adults over age 65 in several counties in Maryland and the District of Columbia. RESULTS: For men, received support and perceived mastery buffer against the detrimental effects of neighborhood problems on anger. In contrast, donated support exacerbates the negative physical health effects of neighborhood problems. For women, donated support amplifies the effects of neighborhood problems on anger. However, with anger and depression, the buffering effects of received support become evident only after accounting for the interaction between neighborhood problems and donated support. DISCUSSION: The findings have implications for the stress process model, the theoretical perspectives on different forms of social support, and the "buffering" and "cost of caring" predictions for women and men.