Clinical trial recruitment of people who speak languages other than English: a Childrens Oncology Group report.

BACKGROUND: Persons who speak languages other than English are underrepresented in clinical trials, likely in part because of inadequate multilevel resources. We conducted a survey of institutions affiliated with the Childrens Oncology Group (COG) to characterize current research recruitment practices and resources regarding translation and interpretation services. METHODS: In October 2022, a 20-item survey was distributed electronically to institutions affiliated with COG to assess consent practices and resources for recruiting participants who speak languages other than English to COG trials. Descriptive statistics were used to summarize responses; responses were compared by institution size and type as well as respondent role. RESULTS: The survey was sent to 230 institutions, and the response rate was 60% (n = 139). In total, 60% (n = 83) of those respondents had access to short-form consent forms. Full consent form translation was required at 50% of institutions, and 12% of institutional review boards restricted use of centrally translated consent forms. Forty-six percent (n = 64) of institutions reported insufficient funding to support translation costs; 19% (n = 26) had access to no-cost translation services. Forty-four percent (n = 61) were required to use in-person interpreters for consent discussions; the most frequently cited barrier (56%) to obtaining consent was lack of available in-person interpreters. Forty-seven percent (n = 65) reported that recruiting persons who speak languages other than English to clinical trials was somewhat or very difficult. CONCLUSIONS: Institutions affiliated with COG face resource-specific challenges that impede recruitment of participants who speak languages other than English for clinical trials. These findings indicate an urgent need to identify strategies aimed at reducing recruitment barriers to ensure equitable access to clinical trials

Socioeconomic Factors and Adherence to Healthcare Recommendations in Adolescent and Young Adult Cancer Survivors

Thesis (Master's)--University of Washington, 2021Introduction: The majority of adolescent and young adult (AYA) cancer survivors do not receive recommended healthcare surveillance after completing cancer therapy. The impact of socioeconomic status and social support factors such as income, education, marital status, and insurance on healthcare adherence among AYA cancer survivors is unknown. Methods: Five cancer centers invited eligible survivors diagnosed between ages 18-39 years who were 1-5 years from cancer therapy completion. Participants completed online surveys including sociodemographic factors, patient-reported outcomes, and the Healthcare Adherence (HCA) measure to assess healthcare services and screening test utilization. Diagnosis and treatment data were abstracted from medical records. Using the standard adherence cutpoint based on AYA survivorship guidelines, nonadherence was defined as a score <0.80 (range 0-1.0). We used multivariable logistic regression to calculate odds ratios (ORs) and 95% confidence intervals (CI) for adherence in relation to socioeconomic status and social support factors. Results: Of 344 participants, 36% were adherent to healthcare recommendations. Nonadherence was associated with having less education (OR 0.43; 95% CI: 0.23-0.80 for < 4-year college degree), and relatively low household income (OR 0.51; 95% CI: 0.28-0.95 for $41,000-$80,000; OR 0.40; 95% CI: 0.19-0.86 for ≤ $40,000). Decreased adherence was observed in those not identifying as Non-Hispanic White among breast cancer survivors (OR 0.39, 95$81,000-$120,000; OR 0.24; 95$41,000-$80,000; OR 0.13; 95$40,000). Conclusion: Nonadherence to healthcare guidelines was associated with lower income and education levels in general, and with reported Non-White status among AYA breast cancer survivors. Identification of barriers to adherence in AYA cancer survivors will help in the design of interventions to meet the needs of these high-risk groups, particularly during the first years after diagnosis

Access to Chimeric Antigen Receptor T Cell Clinical Trials in Underrepresented Populations: A Multicenter Cohort Study of Pediatric and Young Adult Acute Lymphobastic Leukemia Patients.

Chimeric antigen receptor T cell (CAR-T) therapy is a promising approach to improve survival for children and adults with relapsed/refractory (r/r) B cell acute lymphoblastic leukemia (B-ALL), but these clinical trials might not be equally accessible to patients of low socioeconomic status (SES) or to patients from racial or ethnic minority groups. We sought to describe the sociodemographic characteristics of pediatric and adolescent and young adult (AYA) patients enrolled in CAR-T clinical trials and to compare these characteristics to those of other patients with r/r B-ALL. We conducted a multicenter retrospective cohort study at 5 pediatric consortium sites to compare the sociodemographic characteristics of patients treated and enrolled in CAR-T trials at their home institution, other patients with r/r B-ALL treated at these sites, and patients referred from an external hospital for CAR-T trials. The patients were age 0 to 27 years with r/r B-ALL treated at 1 of the consortium sites between 2012 and 2018. Clinical and demographic data were collected from the electronic health record. We calculated distance from home to treating institution and assigned SES scores based on census tract. Among the 337 patients treated for r/r B-ALL, 112 were referred from an external hospital to a consortium site and enrolled in a CAR-T trial and 225 were treated primarily at a consortium site, with 34% enrolled in a CAR-T trial. Patients treated primarily at a consortium site had similar characteristics regardless of trial enrollment. Lower proportions of Hispanic patients (37% versus 56%; P&nbsp;=&nbsp;.03), patients whose preferred language was Spanish (8% versus 22%; P&nbsp;=&nbsp;.006), and publicly insured patients (38% versus 65%; P&nbsp;=&nbsp;.001) were referred from an external hospital than were treated primarily at a consortium site and enrolled in a CAR-T trial. Patients who are Hispanic, Spanish-speaking, or publicly insured are underrepresented in referrals from external hospitals to CAR-T centers. External provider implicit bias also may influence referral of these patients. Establishing partnerships between CAR-T centers and external hospital sites may improve provider familiarity, patient referral, and patient access to CAR-T clinical trials

Impact of COVID-19 on Hematology-Oncology Trainees: A Quantitative and Qualitative Assessment.

PurposeGraduate medical and research training has drastically changed during the COVID-19 pandemic, with widespread implementation of virtual learning, redeployment from core rotations to the care of patients with COVID-19, and significant emotional and physical stressors. The specific experience of hematology-oncology (HO) fellows during the COVID-19 pandemic is not known.MethodsWe conducted a mixed-methods study using a survey of Likert-style and open-ended questions to assess the training experience and well-being of HO fellows, including both clinical and postdoctoral trainee members of the American Society of Hematology and ASCO.ResultsA total of 2,306 surveys were distributed by e-mail; 548 (23.8%) fellows completed the survey. Nearly 40% of fellows felt that they had not received adequate mental health support during the pandemic, and 22% reported new symptoms of burnout. Pre-existing burnout before the pandemic, COVID-19-related clinical work, and working in a primary research or nonclinical setting were associated with increased burnout on multivariable logistic regression. Qualitative thematic analysis of open-ended responses revealed significant concerns about employment after training completion, perceived variable quality of virtual education and board preparation, loss of clinical opportunities to prepare for independent clinical practice, inadequate grant funding opportunities in part because of shifting research priorities, variable productivity, and mental health or stress during the pandemic.ConclusionHO fellows have been profoundly affected by the pandemic, and our data illustrate multiple avenues for fellowship programs and national organizations to support both clinical and postdoctoral trainees