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.

Joint Display of Integrated Data Collection for Mixed Methods Research: An Illustration From a Pediatric Oncology Quality Improvement Study.

PURPOSE: Researchers often struggle to integrate quantitative and qualitative data. Joint displays of data collected using mixed methods provide a framework for supporting integration, yet the literature lacks methodologic articles illustrating in detail the iterative nature of constructing such displays. We demonstrate the process for creating a joint display for integrating the collection of data obtained by qualitative and quantitative methods. METHODS: Within a convergent mixed methods cohort study, the Early Discharge of Febrile Neutropenic Children with Cancer Study, we constructed a joint display to inform integrated collection of 2 forms of data (quantitative and qualitative) from 2 sources (a patient-caregiver mixed methods survey and a manual abstraction of medical records). RESULTS: In a first step, we used a data sources table to align related quantitative and qualitative data. The resulting table consisted of 2 side-by-side columns based on the mixed survey data. After several additional iterative steps, we constructed a final 6-column joint display. This final display delineated the separate data sources, linked constructs to the quantitative and qualitative variables within each source, and integrated the constructs across the separate data sources. CONCLUSIONS: Challenges of integration, though not unique to prospective mixed methods cohort studies, stem from the sheer volume of qualitative and quantitative information and the need to logically organize the data in preparation for integrated data analysis. Tailoring joint displays to specific studies is challenging, but mixed methods researchers who embrace the methodologic malleability can produce effective joint displays to illustrate the mixed data collection linkages and create a preliminary structure ultimately for organizing mixed data findings.

"Now Everybody Is Thinking About Things Like That." Young Adult Cancer Survivors Reimagining Work During the COVID-19 Pandemic.

BACKGROUND: Diagnosed between ages 20 and 39 years, young adult (YA) cancer survivors have faced disruption to their lives well before the COVID-19 pandemic. Often seen as an at-risk population within cancer survivors, YAs experience the demands of a serious illness, such as cancer, alongside meeting the typical milestones of young adulthood and often have worse quality of life than their noncancer peers. There is a need to further study the effect of the COVID-19 pandemic on specific populations, including YA cancer survivors (YACS), as it relates to work. OBJECTIVES: The aim of this study was to explore working YACS' experiences during the COVID-19 pandemic and identify facets of cancer survivorship that researchers can use to explore COVID-19 survivorship further. METHODS: Secondary thematic analysis of 40 semistructured, qualitative interviews conducted through Zoom audio during the COVID-19 pandemic. YA hematologic cancer survivors were recruited through social media; they were eligible if they had completed active therapy, were within 5 years of their diagnosis, and working at the time of diagnosis. Interviews were transcribed verbatim and subjected to thematic content analysis. RESULTS: Themes surrounded COVID-19's influence on working YACS' experiences, with the overarching theme: "From solo to shared experience: A change in awareness and understanding." A subtheme was "Lesson reaffirmed: Reimagining the work environment." DISCUSSION: The consequences of COVID-19 on the overall quality of life for YACS are multilevel. Establishing the evidence for effective interventions to support YACS in the workplace, whether physical or virtual, is critically needed. Research is needed on YACS' risk and resilience factors that could ultimately impact future health and quality of life.

Evaluation of a Conference on Cancer-Related Financial and Legal Issues: A Potential Resource to Counter Financial Toxicity.

This study describes the conception, development, and growth of the Triage Cancer Conference hosted by Triage Cancer, a national nonprofit organization providing free legal and financial education to the cancer community. We conducted a retrospective analysis of post-conference participant surveys. Descriptive statistics were calculated for participant demographics, and acceptability, feasibility, and appropriateness were evaluated. From 2016-2021, 1239 participants attended the conference and completed post-conference surveys. Participants included social workers (33%), nurses (30%), and cancer patients/survivors (21%), with representation from over 48 states. Among those who reported race, 16% were Black, and 7% were Hispanic. For acceptability, more than 90% of participants felt that the conference content, instructors, and format were suitable and useful. For feasibility, more than 90% of participants felt that the material was useful, with 93-96% reporting that they were likely to share the information and 98% reporting that they would attend another triage cancer event. Appropriateness was also high, with >80-90% reporting that the sessions met the pre-defined objectives. Triage Cancer fills an important gap in mitigating financial toxicity, and formal evaluation of these programs allows us to build evidence of the role and impact of these existing resources. Future research should focus on adding validated patient-reported outcomes, longer-term follow-up, and ensuring inclusion and evaluation of outcome metrics among vulnerable populations.

A Needs Assessment Approach for Adolescent and Young Adult Sexual and Gender Diverse Cancer Survivors.

Sexual and gender diverse (SGD) adolescent and young adult (AYA) cancer survivors are an increasing and vulnerable group with unique needs that often remain unmet in the healthcare system. This paper describes the conceptualization and development of a community-based organization dedicated to serving SGD AYAs, in addition to reporting on the results of a community-led needs assessment. A total of 56 SGD AYA community members completed the online survey. Most participants were between the ages of 26 to 33, identified as white, cisgender, bisexual women, and had hematologic malignancies. Identified unmet needs of SGD AYAs included the following: sexual health and family planning; gender affirmation; financial stability; and emotional support. Areas within the community organization were identified as gaps, areas of expansion, and assets. Results highlight the role of community and academic partnerships in improving cancer care delivery for SGD AYA cancer survivors.

"Both a life saver and totally shameful": young adult cancer survivors' perceptions of medical crowdfunding.

PURPOSE: Young adults (YAs) diagnosed with cancer face high financial burden at a time in their lives when they are financially vulnerable. Some turn to medical crowdfunding, that is, using social media and other means to raise funds or resources to offset medical and usual life expenses. Major research gaps exist regarding the experiences of those who pursued crowdfunding. Thus, the study purpose was to describe the perceptions of, and experiences with, medical crowdfunding among a sample of YA cancer survivors. METHODS: In February 2021, we distributed an online survey to YAs with a history of a cancer diagnosis, who had received grants from an organization that offers financial assistance. We calculated descriptive statistics on the crowdfunding sample and employed thematic analysis to analyze the open-ended questions. RESULTS: In this sample (N = 113), 46 YA cancer survivors had engaged in medical crowdfunding and shared their perceptions and experiences. Our central theme, "The Crowdfunding Compromise" captures the trade-offs participants faced, which included subthemes of "crowdfunding as useful/helpful," "factors associated with crowdfunding success," and "questioning the why?". CONCLUSIONS: Among YA cancer survivors, medical crowdfunding brings shame and stigma in addition to financial support. YA cancer survivors demonstrate resilience in their attempts to find individual solutions to financial problems created by unchecked health care costs, the US health insurance infrastructure, and lack of legislation. IMPLICATIONS FOR CANCER SURVIVORS: This study fills an important gap in understanding individual-level crowdfunding experiences. Implications include system-level approaches to addressing cancer-related financial burden and potential worsening of existing disparities through medical crowdfunding.

Profiles of Work and Quality of Life among Young Adult Cancer Survivors.

Work ability, or the perception of one's ability to work presently and in the future, may impact quality of life (QOL) among young adult (YA) cancer survivors. Through a convergent mixed methods design, we explored work ability, work-related goals, and QOL among YA hematologic cancer survivors within five years of diagnosis. We described associations at the individual- and microsystem (work)- levels; and compared factors across low and high work ability groups. Participants (N = 40) completed a survey and interview via digital platforms. Qualitative analysis revealed self-assessed declines in work ability led to questioning work-related goals and influenced QOL. Integrated analysis led to the development of four profiles, growing our understanding of work's influence on QOL for YA cancer survivors, and identifying components YAs considered when contemplating work-related goals after a cancer diagnosis. Larger studies are needed to elucidate these profiles and identify modifiable factors to inform targeted interventions to improve QOL.

Exploring the Relationship between Self-Rated Health and Unmet Cancer Needs among Sexual and Gender Minority Adolescents and Young Adults with Cancer.

This study evaluates the unmet needs of sexual and gender minority (SGM) adolescent and young adult (AYA) cancer survivors by comparing SGM AYA self-rated health (SRH) scores to their non-SGM (i.e., cisgender/heterosexual) counterparts. The Cancer Needs Questionnaire-Young People (CNQ-YP) and self-rated health measures were used to assess unmet needs in AYAs aged 15-39 who had been diagnosed with cancer in the previous ten years (n = 342). Participants were recruited from a National Cancer Institute (NCI) Comprehensive Cancer Center registry using the modified Dillman's method. Self-reported sexual orientation and gender identity (SO/GI) data were collected. Independent t-tests were used to test between-group differences in unmet needs and Pearson's chi-square test was used to determine the difference in SRH scores between SGM and non-SGM AYA cancer survivors. SGM AYA cancer survivors reported greater mean needs than their non-SGM counterparts across all six domains and reported significantly greater needs in the domains of Feelings and Relationships, t(314) = -2.111, p = 0.036, Information and Activities, t(314) = -2.594, p = 0.009, and Education, t(207) = -3.289, p < 0.001. SGM versus non-SGM SRH scores were significantly different, indicating that a higher percentage of SGM AYAs reported poor/fair health compared to those who were non-SGM. Unmet life and activities needs were negatively associated with AYA cancer survivors' SRH, whereas unmet work needs were positively associated with AYA cancer survivors' SRH. An AYA's gender identity (SGM versus non-SGM) was not a moderator. SGM AYAs are an understudied group within an already vulnerable patient population. Unmet psychosocial needs related to one's feelings and relationships, and information and activity needs merit further research to develop tailored interventions that reflect the experiences of SGM AYAs.

The Patient Experience of Prior Authorization for Cancer Care.

Importance: Prior authorization (PA) requires clinicians and patients to navigate a complex approval pathway. Resultant delays and denials can be particularly problematic for patients with cancer, who often need urgent treatment or symptom management. Objective: To investigate the patient perspective of PA for cancer-related care, including perceptions about the process, outcomes (including delays and denials), and patient administrative burden. Design, Setting, and Participants: This cross-sectional, anonymous survey used a convenience sample of patients with PA experience. Participants were recruited using social media and email lists of US-based cancer advocacy organizations from July 1 to October 6, 2022. Exposure: Prior authorization for any cancer-related service. Main Outcomes and Measures: Delays to care, outcome of PA, communication, and changes in anxiety (measured on a scale of 0-100, with 0 indicating no anxiety and higher scores indicating higher levels of anxiety) and trust. Results: Of 178 respondents (158 women [88%], 151 non-Hispanic White respondents [84%], 164 respondents [92%] <65 years), 112 (63%) reported that their cancer care was approved and given as recommended, and 39 (22%) did not receive recommended care due to delays or denials. Most respondents (123 [69%]) reported a PA-related delay in care; of those with delayed care, 90 (73%) reported a delay of 2 or more weeks. Most respondents (119 [67%]) had to personally become involved in the PA process; 35 (20%) spent 11 or more hours dealing with PA issues. Overall, the PA experience was rated as bad (70 [40%]) or horrible (55 of 174 [32%]); ratings were associated with the length of delay (ρ = 0.36; P < .001) and the time spent on PA (ρ = 0.42; P < .001). Self-reported PA-related anxiety was higher than usual anxiety (mean [SD] score, 74.7 [20.2] vs 37.5 [22.6]; P < .001) and was correlated with delay length (ρ = 0.16; P = .04), time spent on PA (ρ = 0.27; P < .001), and overall PA experience (ρ = 0.34; P < .001). After PA, 159 respondents (89%) trusted their insurance company less, and 148 respondents (83%) trusted the health care system less. Patient involvement in the PA process was associated with increased odds of distrusting their insurance company (ß = 6.0; 95% CI, 1.9-19.2) and the health care system (ß = 3.3; 95% CI, 1.4-8.1) and of having a negative experience (ß = 6.6; 95% CI, 3.1-14.3). Conclusions and Relevance: This survey-based cross-sectional study of the patient experience with PA highlights an adverse outcome of PA: 22% of patients did not receive the care recommended by their treatment team because of PA. Most respondents experienced a delay in recommended oncology care, and delays were associated with increased anxiety, a negative perception of the PA process, and patient administrative burden.

Financial Toxicity and Its Association With Health-Related Quality of Life Among Partners of Colorectal Cancer Survivors.

Importance: Partners of colorectal cancer (CRC) survivors play a critical role in diagnosis, treatment, and survivorship. While financial toxicity (FT) is well documented among patients with CRC, little is known about long-term FT and its association with health-related quality of life (HRQoL) among their partners. Objective: To understand long-term FT and its association with HRQoL among partners of CRC survivors. Design, Setting, and Participants: This survey study incorporating a mixed-methods design consisted of a mailed dyadic survey with closed- and open-ended responses. In 2019 and 2020, we surveyed survivors who were 1 to 5 years from a stage III CRC diagnosis and included a separate survey for their partners. Patients were recruited from a rural community oncology practice in Montana, an academic cancer center in Michigan, and the Georgia Cancer Registry. Data analysis was performed from February 2022 to January 2023. Exposures: Three components of FT, including financial burden, debt, and financial worry. Main Outcomes and Measures: Financial burden was assessed with the Personal Financial Burden scale, whereas debt and financial worry were each assessed with a single survey item. We measured HRQoL using the PROMIS-29+2 Profile, version 2.1. We used multivariable regression analysis to assess associations of FT with individual domains of HRQoL. We used thematic analysis to explore partner perspectives on FT, and we merged quantitative and qualitative findings to explain the association between FT and HRQoL. Results: Of the 986 patients eligible for this study, 501 (50.8%) returned surveys. A total of 428 patients (85.4%) reported having a partner, and 311 partners (72.6%) returned surveys. Four partner surveys were returned without a corresponding patient survey, resulting in a total of 307 patient-partner dyads for this analysis. Among the 307 partners, 166 (56.1%) were aged younger than 65 years (mean [SD] age, 63.7 [11.1] years), 189 (62.6%) were women, and 263 (85.7%) were White. Most partners (209 [68.1%]) reported adverse financial outcomes. High financial burden was associated with worse HRQoL in the pain interference domain (mean [SE] score, -0.08 [0.04]; P = .03). Debt was associated with worse HRQoL in the sleep disturbance domain (-0.32 [0.15]; P = .03). High financial worry was associated with worse HRQoL in the social functioning (mean [SE] score, -0.37 [0.13]; P = .005), fatigue (-0.33 [0.15]; P = .03), and pain interference (-0.33 [0.14]; P = .02) domains. Qualitative findings revealed that in addition to systems-level factors, individual-level behavioral factors were associated with partner financial outcomes and HRQoL. Conclusions and Relevance: This survey study found that partners of CRC survivors experienced long-term FT that was associated with worse HRQoL. Multilevel interventions for both patients and partners are needed to address factors at individual and systemic levels and incorporate behavioral approaches.

Exploring Online Crowdfunding for Cancer-Related Costs Among LGBTQ+ (Lesbian, Gay, Bisexual, Transgender, Queer, Plus) Cancer Survivors: Integration of Community-Engaged and Technology-Based Methodologies.

BACKGROUND: Cancer survivors frequently experience cancer-related financial burdens. The extent to which Lesbian, Gay, Bisexual, Transgender, Queer, Plus (LGBTQ+) populations experience cancer-related cost-coping behaviors such as crowdfunding is largely unknown, owing to a lack of sexual orientation and gender identity data collection and social stigma. Web-scraping has previously been used to evaluate inequities in online crowdfunding, but these methods alone do not adequately engage populations facing inequities. OBJECTIVE: We describe the methodological process of integrating technology-based and community-engaged methods to explore the financial burden of cancer among LGBTQ+ individuals via online crowdfunding. METHODS: To center the LGBTQ+ community, we followed community engagement guidelines by forming a study advisory board (SAB) of LGBTQ+ cancer survivors, caregivers, and professionals who were involved in every step of the research. SAB member engagement was tracked through quarterly SAB meeting attendance and an engagement survey. We then used web-scraping methods to extract a data set of online crowdfunding campaigns. The study team followed an integrated technology-based and community-engaged process to develop and refine term dictionaries for analyses. Term dictionaries were developed and refined in order to identify crowdfunding campaigns that were cancer- and LGBTQ+-related. RESULTS: Advisory board engagement was high according to metrics of meeting attendance, meeting participation, and anonymous board feedback. In collaboration with the SAB, the term dictionaries were iteratively edited and refined. The LGBTQ+ term dictionary was developed by the study team, while the cancer term dictionary was refined from an existing dictionary. The advisory board and analytic team members manually coded against the term dictionary and performed quality checks until high confidence in correct classification was achieved using pairwise agreement. Through each phase of manual coding and quality checks, the advisory board identified more misclassified campaigns than the analytic team alone. When refining the LGBTQ+ term dictionary, the analytic team identified 11.8% misclassification while the SAB identified 20.7% misclassification. Once each term dictionary was finalized, the LGBTQ+ term dictionary resulted in a 95% pairwise agreement, while the cancer term dictionary resulted in an 89.2% pairwise agreement. CONCLUSIONS: The classification tools developed by integrating community-engaged and technology-based methods were more accurate because of the equity-based approach of centering LGBTQ+ voices and their lived experiences. This exemplar suggests integrating community-engaged and technology-based methods to study inequities is highly feasible and has applications beyond LGBTQ+ financial burden research.

Exploration of Relationships Between Symptoms, Work Characteristics, and Quality of Life in Young Adult Hematologic Cancer Survivors.

This study explores relationships between individual, microsystem (work) characteristics, and quality of life (QOL) among young adult (YA; ages 20-39 years at diagnosis) hematologic cancer survivors. Forty YAs who had completed cancer therapy within the past 5 years were recruited through social media and completed an online survey. Poorer QOL was associated with higher levels of depressive symptoms, fatigue, impaired cognitive function, and poorer work ability and financial health (all p < 0.05). A comprehensive understanding of work characteristics, including work ability, may lead to multilevel interventions improving QOL. Future research should include larger, more diverse samples of YA cancer survivors.

Financial Toxicity in Adolescents and Young Adults With Cancer: A Concept Analysis.

BACKGROUND: A cancer diagnosis as an adolescent and young adult (AYA) poses exceptional challenges, including potential greater financial toxicity than older survivors experience who have had more time for career establishment and to build financial assets. Costs to patients have increased more than the past decade; prospects for AYA long-term survival have also increased. A better understanding of what financial toxicity is, how it presents, and the immediate and longer-term implications for AYAs is needed. OBJECTIVE: The aim of this study was to analyze the concept financial toxicity in AYAs diagnosed with cancer. METHODS: We used Rodgers' evolutionary method and articles published between January 2013 and December 2020. RESULTS: We identified key antecedents, attributes, and consequences of financial toxicity in AYAs and review its related terms that have often been used as surrogate terms. Attributes were financial burden, financial distress, and competing financial pressures. Consequences were mostly adverse and persistent and included engaging in various financial problem-solving behaviors, material hardship and poor financial well-being, and deteriorated quality of life. CONCLUSIONS: Results of this analysis clarify financial toxicity and provide guidance for a conceptual framework in the context of AYA cancer survivorship. Its consequences in AYAs with cancer are profound and will continue to evolve over time with changes in health systems and the economy. IMPLICATIONS FOR PRACTICE: Oncology nurses should understand the attributes and consequences of financial toxicity for AYAs throughout the cancer trajectory. Future research on financial toxicity should extend across AYAs living with other chronic illnesses and cancer survivors in other age groups.

Transition-to-U.S. Practice Experiences of Internationally Educated Nurses: An Integrative Review.

Internationally educated nurses (IENs) are an important part of the U.S. nursing workforce. Optimizing their transition-to-practice (TTP) experiences in the United States is crucial for ensuring high-quality patient and IENs' outcomes. The purpose of this integrative review is to analyze and synthesize the current evidence surrounding IEN TTP experiences in the United States from 2000 to 2018 to inform improvements in TTP. Eighteen studies were included. TTP was defined through IENs' description of facilitators and barriers of the transition process and presented in seven themes. Two themes were facilitators: support from family and nursing colleagues, and perceptions of self-efficacy. The remaining five themes were barriers: (a) the stigma associated with educational preparation, (b) communication and language, (c) differences in culture, (d) differences in nursing practice, and (e) legal issues. Findings are important for improving TTP programs. Further research focusing on the outcomes of transition programs is needed to inform policymaking surrounding IEN recruitment and retention.