It takes more than rainbows: Supporting sexual and gender minority patients with trauma-informed cancer care.

BACKGROUND/PURPOSE: The American Society of Clinical Oncology has called for an increased priority to improve cancer care for sexual and gender minority (SGM) populations because of heightened risk of receiving disparate treatment and having suboptimal experiences, including perceived discrimination. We demonstrate how integrating trauma-informed care (TIC) principles across the cancer continuum is a key strategy to improving care delivery and outcomes among SGM populations. METHOD: This empirically informed perspective expands on the concepts generated through the American Society of Clinical Oncology position statement and uses the Substance Abuse and Mental Health Services Association's "Four Rs" Toward Trauma Informed Care: Realize, Recognize, Response, and Resist Traumatization. RESULTS: Recommendations for each component of TIC include: (1) Realize: Implement SGM cultural humility training, including modules on SGM-specific trauma, discrimination, harassment, and violence; (2) Recognize: Routinely screen for emotional distress using methods to ensure privacy, and/or normalize mental health screenings to cancer patients; (3) Respond: Create and widely disseminate policies and patients' rights that prohibit discrimination and ensure access to gender-neutral clinical environments; and (4) Resist Traumatization: Establish and respond to quality metrics (e.g., standardized patients, patient satisfaction surveys) that are informed by a community advisory board with the purpose of ensuring and maintaining quality care. CONCLUSIONS AND IMPLICATIONS: Integrating TIC principles into cancer care for SGM populations is crucial to address disparities in treatment and clinical outcomes. Our recommendations offer practical approaches for oncology teams to implement TIC care and ensure equitable and inclusive cancer care for patients and their families.

A mixed method study of medical oncologists' perceived barriers and motivators to addressing long-term effects in breast cancer survivors.

PURPOSE: The purpose of this study was to identify oncologist-reported barriers and motivators in addressing long-term effects with breast cancer survivors. METHODS: This study is a secondary analysis of data from a survey of U.S. medical oncologists (n = 217) about breast cancer survivorship care in clinical practice. Using both closed- and open-ended questions, we asked oncologists to report barriers and motivators they perceived in addressing long-term effects with breast cancer patients. Descriptive statistics were used to summarize and rank items endorsed by oncologists in analyses of quantitative data; content analysis was used to identify salient categories of barriers and motivators in qualitative data. RESULTS: Key barriers to managing physical long-term effects included lack of time during appointments (n = 128 oncologists, 59%) and perceived lack of evidence-based interventions (n = 89, 41%). With respect to psychosocial effects, oncologists reported lack of knowledge (n = 88, 40.6%) and challenges making referrals to mental health providers (n = 115, 53%). From the qualitative data, three distinct barrier categories emerged: "Competing priorities during brief appointments;" "Discussing long-term effects-Who? What? When?;" and "Beyond my expertise and comfort level." Two motivator categories emerged: "I owe it to them;" and "Giving people a life worth living." CONCLUSION: Oncologists' key motivators for addressing long-term effects were focused on professional values, relationships with survivors, and their commitment to prioritizing patients' quality of life. Future efforts should leverage oncologists' professional and interpersonal motivators to enhance the delivery of survivorship care for breast cancer.

Understanding quality and equity: patient experiences with care in older adults diagnosed with hematologic malignancies.

BACKGROUND: Oncology settings increasingly use patient experience data to evaluate clinical performance. Given that older patients with hematologic malignancies are a high-risk population, this study examined factors associated with patient-reported health care experiences during the first year of their cancer diagnosis. METHODS: Cross-sectional study using the 2000-2015 SEER-CAHPS® data to examine patient experiences of Medicare enrollees with a primary diagnosis of leukemia or lymphoma. The primary outcomes were three CAHPS assessments: overall care, personal doctor, and health plan overall. We estimated case-mix adjusted and fully adjusted associations between factors (i.e., clinical and sociodemographic) and the CAHPS outcomes using bivariate statistical tests and multiple linear regression. RESULTS: The final sample included 1,151 patients, with 431 diagnosed with leukemia and 720 diagnosed with lymphoma (median time from diagnosis to survey 6 months). Patients who completed the survey further apart from the diagnosis date reported significantly higher adjusted ratings of care overall (ß .39, p = .008) than those closer to diagnosis. American Indian/Alaska Native, Asian, and Pacific Islander patients had lower adjusted ratings of care overall (ß - .73, p = .003) than Non-Hispanic white patients. Multimorbidity was significantly associated with higher adjusted personal doctor ratings (ß .26, p = .003). CONCLUSIONS: Unfavorable patient experiences among older adults diagnosed with hematologic malignancies warrant targeted efforts to measure and improve care quality. Future measurement of experiences of cancer care soon after diagnosis, coupled with careful sampling of high-priority populations, will inform oncology leaders and clinicians on strategies to improve care for high-risk, high-cost populations.

Use of gabapentinoid medications among US adults with cancer, 2005-2015.

BACKGROUND: Gabapentinoid use for long-term cancer pain control may be problematic, given unclear mechanisms of action and increased concerns for physical dependence. The purpose of this report is to examine trends of gabapentinoid use among US adults with cancer from 2005 to 2015. METHODS: We conducted a serial, cross-sectional study using data from the Medical Expenditure Panel Survey (MEPS). We performed multiple logistic regression to examine the annual percentages of gabapentinoid users, which were adjusted for age, sex, and US region of residence. The amount of gabapentinoid prescriptions filled in 2015 was also estimated. RESULTS: The adjusted percentage of gabapentinoid users in 2015 was 5.60% (3.79%, 7.41%), 2.39 times greater than the percentage in 2005 (p < .001). By 2015, the number of gabapentinoid prescriptions had grown to approximately 3.52 million (2.40 million, 4.65 million). CONCLUSION: We observed greater than a twofold increase in the trend of gabapentinoid medication use among US adults with cancer. Investigations on the long-term efficacy of gabapentinoids for complex pain syndromes, and mitigation of risks, is essential to guide informed clinical management and keep patients safe.

A Second Pandemic: Mental Health Spillover From the Novel Coronavirus (COVID-19).

The novel coronavirus (COVID-19) pandemic has created an unprecedented global health challenge. There is risk that the outbreak will create a "second pandemic" of mental health crises in health systems and communities. Thus, a comprehensive public health response to the pandemic must include (a) attention to the psychological aspects of hospitalization for patients, families, and staff affected by COVID-19; (b) planning for emergency and acute psychiatric patient care if hospitals become overwhelmed with COVID-19 patients; and (c) innovations for providing mental health care in communities while social distancing is required and health system resources are strained. Nurses and nurse leaders must anticipate these mental health challenges, assist with preparedness in health systems and communities, and advocate for a coordinated response to promote mental wellness and resilience.

Impact of a health information technology tool addressing information needs of caregivers of adult and pediatric hematopoietic stem cell transplantation patients.

PURPOSE: We developed BMT Roadmap, a health information technology (HIT) application on a tablet, to address caregivers' unmet needs with patient-specific information from the electronic health record. We conducted a preliminary feasibility study of BMT Roadmap in caregivers of adult and pediatric HSCT patients. The study was registered on ClinicalTrials.gov (NCT03161665; NCT02409121). METHODS: BMT Roadmap was delivered to 39 caregivers of adult and pediatric patients undergoing first-time HSCT at a single study site. We assessed person-reported outcome measures (PROMs) at baseline (hospital admission), discharge, and day 100: usefulness of BMT Roadmap (Perceived Usefulness); activation (Patient Activation Measure-Caregiver version [PAM-C]); mental health ([POMS-2®]: depression, distress, vigor, and fatigue); anxiety (State-Trait Anxiety Inventory); and quality of life (Caregiver Quality of Life Index-Cancer [CQOLC]). To identify determinants of caregiver activation and quality of life, we used linear mixed models. RESULTS: BMT Roadmap was perceived useful and activation increased from baseline to discharge (p = 0.001). Further, burden decreased through discharge (p = 0.007). Overall, a pattern of increasing vigor and decreasing depression, distress, fatigue, and anxiety was apparent from baseline to discharge. However, overall quality of life lowered at discharge after accounting for BMT Roadmap use, depression, anxiety, and fatigue (p = 0.04). CONCLUSIONS: BMT Roadmap was a feasible HIT intervention to implement in HSCT caregivers. BMT Roadmap was associated with increased activation and decreased burden, but quality of life lowered across hospitalization. Findings support the need to further develop caregiver-specific self-directed resources and provide them both inpatient and outpatient across the HSCT trajectory.

BMT Roadmap: A User-Centered Design Health Information Technology Tool to Promote Patient-Centered Care in Pediatric Hematopoietic Cell Transplantation.

Health information technology (HIT) has great potential for increasing patient engagement. Pediatric hematopoietic cell transplantation (HCT) is a setting ripe for using HIT but in which little research exists. "BMT Roadmap" is a web-based application that integrates patient-specific information and includes several domains: laboratory results, medications, clinical trial details, photos of the healthcare team, trajectory of transplant process, and discharge checklist. BMT Roadmap was provided to 10 caregivers of patients undergoing first-time HCT. Research assistants performed weekly qualitative interviews throughout the patient's hospitalization and at discharge and day 100 to assess the impact of BMT Roadmap. Rigorous thematic analysis revealed 5 recurrent themes: emotional impact of the HCT process itself; critical importance of communication among patients, caregivers, and healthcare providers; ways in which BMT Roadmap was helpful during inpatient setting; suggestions for improving BMT Roadmap; and other strategies for organization and management of complex healthcare needs that could be incorporated into BMT Roadmap. Caregivers found the tool useful and easy to use, leading them to want even greater access to information. BMT Roadmap was feasible, with no disruption to inpatient care. Although this initial study is limited by the small sample size and single-institution experience, these initial findings are encouraging and support further investigation.

Lessons Learned From a Practice-Based, Multisite Intervention Study With Nurse Participants.

PURPOSE: To identify challenges and solutions to the efficient conduct of a multisite, practice-based randomized controlled trial to improve nurses' adherence to personal protective equipment use in ambulatory oncology settings. DESIGN: The Drug Exposure Feedback and Education for Nurses' Safety (DEFENS) study is a clustered, randomized, controlled trial. Participating sites are randomized to Web-based feedback on hazardous drug exposures in the sites plus tailored messages to address barriers versus a control intervention of a Web-based continuing education video. APPROACH: The study principal investigator, the study coordinator, and two site leaders identified challenges to study implementation and potential solutions, plus potential methods to prevent logistical challenges in future studies. FINDINGS: Noteworthy challenges included variation in human subjects' protection policies, grants and contracts budgeting, infrastructure for nursing-led research, and information technology variation. Successful strategies included scheduled Web conferences, site-based study champions, site visits by the principal investigator, and centrally based document preparation. Strategies to improve efficiency in future studies include early and continued engagement with contract personnel in sites, and proposed changes to the common rule concerning human subjects. The DEFENS study successfully recruited 393 nurses across 12 sites. To date, 369 have completed surveys and 174 nurses have viewed educational materials. CONCLUSIONS: Multisite studies of nursing personnel are rare and challenging to the existing infrastructure. These barriers can be overcome with strong engagement and planning. CLINICAL RELEVANCE: Leadership engagement, onsite staff support, and continuous communication can facilitate successful recruitment to a workplace-based randomized, controlled behavioral trial.

Financial hardship and neighborhood socioeconomic disadvantage in long-term childhood cancer survivors.

BACKGROUND: Long-term survivors of childhood cancer face elevated risk for financial hardship. We evaluate whether childhood cancer survivors live in areas of greater deprivation and the association with self-reported financial hardships. METHODS: We performed a cross-sectional analysis of data from the Childhood Cancer Survivor Study between 1970 and 1999 and self-reported financial information from 2017 to 2019. We measured neighborhood deprivation with the Area Deprivation Index (ADI) based on current zip code. Financial hardship was measured with validated surveys that captured behavioral, material and financial sacrifice, and psychological hardship. Bivariate analyses described neighborhood differences between survivors and siblings. Generalized linear models estimated effect sizes between ADI and financial hardship adjusting for clinical factors and personal socioeconomic status. RESULTS: Analysis was restricted to 3475 long-term childhood cancer survivors and 923 sibling controls. Median ages at time of evaluation was 39 years (interquartile range [IQR] = 33-46 years and 47 years (IQR = 39-59 years), respectively. Survivors resided in areas with greater deprivation (ADI ≥ 50: 38.7% survivors vs 31.8% siblings; P < .001). One quintile increases in deprivation were associated with small increases in behavioral (second quintile, P = .017) and psychological financial hardship (second quintile, P = .009; third quintile, P = .014). Lower psychological financial hardship was associated with individual factors including greater household income (≥$60 000 income, P < .001) and being single (P = .048). CONCLUSIONS: Childhood cancer survivors were more likely to live in areas with socioeconomic deprivation. Neighborhood-level disadvantage and personal socioeconomic circumstances should be evaluated when trying to assist childhood cancer survivors with financial hardships.

Models of Clinical Practice Integration in Academic Oncology Nursing.

Oncology nursing faculty at academic institutions help equip the next generation of cancer care professionals. In research- and teaching-focused nursing faculty roles, there are barriers to maintaining clinical oncology nursi.

Social Perception of External Laryngeal Anatomy Related to Gender Expression in a Web-based Survey.

OBJECTIVE(S): To quantify the effect of laryngeal prominence size on socially perceived attributes relating to gender expression. Chondrolaryngoplasty ("tracheal shave") is a common procedure performed for transgender women to feminize neck appearance. The extent of thyroid cartilage resection needed to convey socially-perceived feminine gender expression without destabilizing the voice is incompletely understood. METHODS: Cross-sectional evaluation of a randomized allocation of images of varying laryngeal prominence to a non-repeated, random sample from November 2021 to December 2021. Photos of laryngeal prominence were isolated against a constant neck baseline with lateral, oblique, and frontal views. The images were embedded into a web-based survey with visual analog scales to capture perceived scaled gender expression (masculinity, femininity) and social traits (e.g., attractiveness, friendliness, leadership). We performed bivariate and multivariate analyses relating the laryngeal prominence to perceived gender expression and social traits. RESULTS: The analytic sample included 1,026 respondents. Laryngeal grades similar to the demonstrated "grade M" in this study and smaller demonstrated similar perceptions of increased femininity and decreased masculinity. Grades larger than M demonstrate significantly increased perceived masculinity and significantly decreased perceived femininity. The lateral and oblique views of the neck appear to be the most gender-informative. CONCLUSION: This crowd-sourced analysis of external laryngeal anatomy by a large population of observers provides clear, reproducible insights into social perceptions of gender identity and specifically femininity. These data will meaningfully inform patient counseling and surgical planning for gender-affirming interventions by establishing normative data representing the general public's perceptions. LEVEL OF EVIDENCE: NA Laryngoscope, 133:2292-2300, 2023.

Health care experiences for older adults diagnosed with leukemia and lymphoma: Factors associated with emergency department use, timeliness and access of health care.

OBJECTIVES: This study examined the association of ED use in the first year of diagnosis and patient experiences in care among older adults with hematologic malignancies. MATERIALS AND METHODS: Cross-sectional design using SEER-CAHPS® data from 2002 to 2015 to study Medicare fee-for-service enrollees with a primary diagnosis of leukemia or lymphoma. We linked the CAHPS survey data (patient-reported experiences with health services) to patients' cancer registry information and Medicare outpatient claims from the SEER-CAHPS resource. We estimated associations of ED use and clinical characteristics with two CAHPS outcomes - "getting care quickly" (timeliness) and "getting needed care" (access) - with bivariate and multivariate analyses. RESULTS: The analytic sample included 751 patients, 125 of whom had an ED claim in the first year of cancer diagnosis. The most frequent ED diagnosis clusters were fever and infection (n = 17, 13.6%), orthopedic and injury (16, 12.8%) and pain (16, 12.8%). Significantly more enrollees with an ED claim were diagnosed with lymphoma (p < 0.01), lived in rural areas (p < 0.01), and lived in areas with many families living in poverty (p < 0.01). In adjusted models, enrollees with an ED claim reported significantly worse access to care (ß - 4.83; 95%CI -9.29,-0.38; p = 0.03). CONCLUSION: The management of urgent care concerns for adults with hematologic malignancies remains an important clinical and quality improvement imperative. Further study is warranted to enhance the management of emergent complications in older adults receiving care for hematologic malignancies, with efforts that enhance coordination of ambulatory oncology care.

Influences of Physical Layout and Space on Patient Safety and Communication in Ambulatory Oncology Practices: A Multisite, Mixed Method Investigation.

OBJECTIVE: To examine how physical layouts and space in ambulatory oncology practices influence patient safety and clinician communication. BACKGROUND: Ambulatory oncology practices face unique challenges in delivering safe care. With increasing patient volumes, these settings require additional attention to support patient safety and efficient clinical work processes. METHODS: This study used a mixed methods design with sequential data collection. Eight ambulatory oncology practices (of 29 participating practices) participated in both the quantitative and qualitative phases. In surveys, clinicians (n = 56) reported on safety organizing and communication satisfaction measures. Qualitative data included observations and semistructured interviews (n = 46) with insight into how physical layout influenced care delivery. Quantitative analysis of survey data included descriptive and correlational statistics. Qualitative analysis used inductive and thematic content analysis. Quantitative and qualitative data were integrated using side-by-side comparison tables for thematic analysis. RESULTS: Safety organizing performance was positively correlated with clinician communication satisfaction, r(54 df) = .414, p = .002. Qualitative analyses affirmed that the physical layout affected communication around chemotherapy infusion and ultimately patient safety. After data integration, safety organizing and clinician communication were represented by two themes: visibility of patients during infusion and the proximity of clinicians in the infusion center to clinicians in the clinic where providers see patients. CONCLUSIONS: Physical layouts of ambulatory oncology practices are an important factor to promote patient safety. Our findings inform efforts to construct new and modify existing infusion centers to enhance patient safety and clinician communication.

Causes and Consequences of Chemotherapy Delays in Ambulatory Oncology Practices: A Multisite Qualitative Study.

PURPOSE: In oncology, chemotherapy treatment delays potentially jeopardize patient safety and impede progress toward disease remission. The purpose of this study was to examine the causes and consequences of chemotherapy treatment delays and possible solutions to improve quality of care. PARTICIPANTS & SETTING: The current authors selected a purposive sample of eight ambulatory oncology practices for ethnographic site visits, which lasted five days each. METHODOLOGIC APPROACH: The authors conducted 290 observation hours, including clinician shadowing, and 46 semistructured interviews with clinicians (oncology nurses, physicians, and advanced practice providers). Deductive and inductive thematic analysis was performed on all data. FINDINGS: The authors identified four primary themes from the analysis that affect delays. IMPLICATIONS FOR NURSING: Future investigations should examine nurses' communication practices in the context of timely chemotherapy administration because communication and documentation technologies within healthcare settings continuously evolve.

Patient-reported outcomes collected in ambulatory oncology practices: Feasibility, patterns, and correlates.

OBJECTIVE: To examine the feasibility of soliciting outcomes from adults who received chemotherapy treatment for cancer and describe the patterns and correlates of patient-reported toxicities. DATA SOURCES: Patient survey data from 29 Michigan ambulatory oncology practices collected in 2017. STUDY DESIGN: Secondary analysis of patient survey data. Descriptive statistics were generated at the patient and practice levels. Thematic analysis of open-text comments identified clusters of frequently reported toxicities. DATA COLLECTION METHODS: Patients completed 11 items from the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events. Using a 5-point Likert scale, patients rated the frequency of nausea, vomiting, diarrhea, and pain; the severity of nausea, vomiting, constipation, numbness/tingling, and pain; and how much numbness/tingling and pain interfered with usual or daily activities. Patients could also report two toxicities in open-text comments. Finally, patients reported unplanned health care service for toxicity or side effect management. PRINCIPAL FINDINGS: Of 3565 eligible patients, 2245 participated (63%) and 457 (20%) rated at least one toxicity as severe/very severe. Across practices, the proportion of patients who reported at least one severe/very severe toxicity ranged from 8% to 50%. Troubling toxicities included pain frequency (mean 2.3, SD 1.3), pain severity (2.1, 1.1), and diarrhea frequency (1.9, 1.0). From completed assessments, 1653 (74%) reported at least one toxicity in open-text comments; fatigue (n = 182), stomach discomfort (n = 53), and skin/nail changes (n = 41) were most frequently reported. Regarding consequences, 156 patients (7%) reported unplanned health care service use: 41 (26%) visited an emergency department and 32 (21%) were admitted to a hospital. CONCLUSIONS: Querying patients on chemotherapy treatment experiences and toxicities was feasible. Toxicity rates varied across practices, which informed quality improvement. Toxicity severity and service use incidence exceed previously published trial data, particularly for pain, fatigue, and gastrointestinal issues. Open-text questions enabled exploration with newer treatment regimens.

Hazardous Drug Exposure: Case Report Analysis From a Prospective, Multisite Study of Oncology Nurses' Exposure in Ambulatory Settings.

BACKGROUND: Hazardous drug exposure is an occupational health hazard to oncology nurses. Sparse data are available regarding the frequency and characteristics of hazardous drug spills. OBJECTIVES: This article aims to describe nurses' hazardous drug exposures and use of personal protective equipment during drug spills. METHODS: The Drug Exposure Feedback and Education for Nurses' Safety study launched in March 2015. When drug spills occurred, consented RNs administering chemotherapy in ambulatory infusion settings completed brief questionnaires. Descriptive statistics were used to summarize equipment use and spill events. FINDINGS: Spills were common, despite the use of closed-system transfer devices. Over two years, 51 nurses from 12 participating academic infusion centers reported 61 unique spills. Spills commonly involved highly toxic drugs. Personal protective equipment use during drug spills was suboptimal. These foundational data reveal gaps in clinical practice.

340B Drug Pricing Program: The Expansion and Its Effect on Cancer Care.

The 340B Drug Pricing Program is a complex federal program that is intended to provide financial relief to hospitals that provide care to greater volumes of low-income, uninsured, and underinsured patients. The body of literature is growing on how cancer care has transformed since freestanding cancer hospitals became eligible for the 340B program. Currently, community oncology practices are not eligible for the 340B program.