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Clinical trial participants do not reflect the racial and ethnic diversity of people with cancer. ASCO and the Association of Community Cancer Centers collaborated on a quality improvement study to enhance racial and ethnic equity, diversity, and inclusion (EDI) in cancer clinical trials. The groups conducted a pilot study to examine the feasibility, utility, and face validity of a two-part clinical trial site self-assessment to enable diverse types of research sites in the United States to (1) review internal data to assess racial and ethnic disparities in screening and enrollment and (2) review their policies, programs, procedures to identify opportunities and strategies to improve EDI. Overall, 81% of 62 participating sites were satisfied with the assessment; 82% identified opportunities for improvement; and 63% identified specific strategies and 74% thought the assessment had potential to help their site increase EDI. The assessment increased awareness about performance (82%) and helped identify specific strategies (63%) to increase EDI in trials. Although most sites (65%) were able to provide some data on the number of patients that consented, only two sites were able to provide all requested trial screening, offering, and enrollment data by race and ethnicity. Documenting and evaluating such data are critical steps toward improving EDI and are key to identifying and addressing disparities more broadly. ASCO and Association of Community Cancer Centers will partner with sites to better understand their processes and the feasibility of collecting screening, offering, and enrollment data in systematic and automated ways.
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Diversidad, Equidad e Inclusión , Neoplasias , Humanos , Etnicidad , Neoplasias/terapia , Proyectos Piloto , Autoevaluación (Psicología) , Estados Unidos , Ensayos Clínicos como AsuntoRESUMEN
PURPOSE: Cancer trial participants do not reflect the racial and ethnic diversity in the population of people with cancer in the United States. As a result of multiple system-, patient-, and provider-level factors, including implicit bias, cancer clinical trials are not consistently offered to all potentially eligible patients. MATERIALS AND METHODS: ASCO and ACCC evaluated the utility (pre- and post-test knowledge changes) and feasibility (completion rates, curriculum satisfaction metrics, survey questions, and interviews) of a customized online training program combined with facilitated peer-to-peer discussion designed to help research teams identify their own implicit biases and develop strategies to mitigate them. Discussion focused on (1) specific elements of the training modules; (2) how to apply lessons learned; and (3) key considerations for developing a facilitation guide to support peer-to-peer discussions in cancer clinical research settings. We evaluated discussion via a qualitative assessment. RESULTS: Participant completion rate was high: 49 of 50 participating cancer programs completed training; 126 of 129 participating individuals completed the training (98% response rate); and 119 completed the training and evaluations (92% response rate). Training increased the mean percentage change in knowledge scores by 19%-45% across key concepts (eg, causes of health disparities) and increased the mean percentage change in knowledge scores by 10%-31% about strategies/actions to address implicit bias and diversity concerns in cancer clinical trials. Knowledge increases were sustained at 6 weeks. Qualitative evaluation validated the utility and feasibility of facilitated peer-to-peer discussion. CONCLUSION: The pilot implementation of the training program demonstrated excellent utility and feasibility. Our evaluation affirms that an online training designed to raise awareness about implicit bias and develop strategies to mitigate biases among cancer research teams is feasible and can be readily implemented in cancer research settings.
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Sesgo Implícito , Neoplasias , Humanos , Estados Unidos , Estudios de Factibilidad , Neoplasias/terapiaRESUMEN
In order to mitigate low levels of health literacy among patients, there is need to evaluate patient education (PE) materials and to ensure that the information is readily accessible to patients. The quality and comprehensiveness of radiation therapy materials were evaluated at fourteen cancer centres. To assess quality, PE leaders independently conducted readability, actionability and understandability assessments of materials. To evaluate comprehensiveness, an assessment was conducted of the scope of symptoms covered in extant materials, and the modality they were produced in (e.g. pamphlet, video). A total of 555 PE materials were reviewed for comprehensiveness and modality and seventy underwent evaluation against health literacy best practice standards. Most materials (n = 64, 91%) had a reading grade level above the recommended grade 6 ([Formula: see text] = 9, range = 4-12). Under half (n = 34, 49%) scored at or above the 80% threshold for understandability ([Formula: see text] = 74%, 33-100%) and just over half (n = 36, 51%) scored at or above the 80% target for actionability ([Formula: see text] = 71%, 33-100%). Only two cancer centres (n = 2/14, 14%) had PE materials covering the breadth of symptoms related to radiation therapy and the vast majority of materials were pamphlets (89%). Findings indicate that most radiation therapy PE materials used in cancer centres do not meet health literacy best practices, and there is a disparity between cancer centres in the topics that are available to patients and family. This evaluation highlights the need to better incorporate health literacy best practices into the development of radiation therapy PE materials and strategies to improve accessibility of such health information.
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Alfabetización en Salud , Humanos , Educación del Paciente como Asunto , Materiales de Enseñanza , Comprensión , Lectura , InternetRESUMEN
A concerted commitment across research stakeholders is necessary to increase equity, diversity, and inclusion (EDI) and address barriers to cancer clinical trial recruitment and participation. Racial and ethnic diversity among trial participants is key to understanding intrinsic and extrinsic factors that may affect patient response to cancer treatments. This ASCO and Association of Community Cancer Centers (ACCC) Research Statement presents specific recommendations and strategies for the research community to improve EDI in cancer clinical trials. There are six overarching recommendations: (1) clinical trials are an integral component of high-quality cancer care, and every person with cancer should have the opportunity to participate; (2) trial sponsors and investigators should design and implement trials with a focus on reducing barriers and enhancing EDI, and work with sites to conduct trials in ways that increase participation of under-represented populations; (3) trial sponsors, researchers, and sites should form long-standing partnerships with patients, patient advocacy groups, and community leaders and groups; (4) anyone designing or conducting trials should complete recurring education, training, and evaluation to demonstrate and maintain cross-cultural competencies, mitigation of bias, effective communication, and a commitment to achieving EDI; (5) research stakeholders should invest in programs and policies that increase EDI in trials and in the research workforce; and (6) research stakeholders should collect and publish aggregate data on racial and ethnic diversity of trial participants when reporting results of trials, programs, and interventions to increase EDI. The recommendations are intended to serve as a guide for the research community to improve participation rates among people from racial and ethnic minority populations historically under-represented in cancer clinical trials. ASCO and ACCC will work at all levels to advance the recommendations in this publication.
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Ensayos Clínicos como Asunto , Etnicidad , Neoplasias , Selección de Paciente , Humanos , Oncología Médica , Grupos Minoritarios , Neoplasias/terapia , Grupos Raciales , Estados UnidosRESUMEN
Importance: The COVID-19 pandemic has impacted cancer systems worldwide. Quantifying the changes is critical to informing the delivery of care while the pandemic continues, as well as for system recovery and future pandemic planning. Objective: To quantify change in the delivery of cancer services across the continuum of care during the COVID-19 pandemic. Design, Setting, and Participants: This population-based cohort study assessed cancer screening, imaging, diagnostic, treatment, and psychosocial oncological care services delivered in pediatric and adult populations in Ontario, Canada (population 14.7 million), from April 1, 2019, to March 1, 2021. Data were analyzed from May 1 to July 31, 2021. Exposures: COVID-19 pandemic. Main Outcomes and Measures: Cancer service volumes from the first year of the COVID-19 pandemic, defined as April 1, 2020, to March 31, 2021, were compared with volumes during a prepandemic period of April 1, 2019, to March 31, 2020. Results: During the first year of the pandemic, there were a total of 4â¯476â¯693 cancer care services, compared with 5â¯644â¯105 services in the year prior, a difference of 20.7% fewer services of cancer care, representing a potential backlog of 1â¯167â¯412 cancer services. While there were less pronounced changes in systemic treatments, emergency and urgent imaging examinations (eg, 1.9% more parenteral systemic treatments) and surgical procedures (eg, 65% more urgent surgical procedures), major reductions were observed for most services beginning in March 2020. Compared with the year prior, during the first pandemic year, cancer screenings were reduced by 42.4% (-1â¯016â¯181 screening tests), cancer treatment surgical procedures by 14.1% (-8020 procedures), and radiation treatment visits by 21.0% (-141â¯629 visits). Biopsies to confirm cancer decreased by up to 41.2% and surgical cancer resections by up to 27.8% during the first pandemic wave. New consultation volumes also decreased, such as for systemic treatment (-8.2%) and radiation treatment (-9.3%). The use of virtual cancer care increased for systemic treatment and radiation treatment and psychosocial oncological care visits, increasing from 0% to 20% of total new or follow-up visits prior to the pandemic up to 78% of total visits in the first pandemic year. Conclusions and Relevance: In this population-based cohort study in Ontario, Canada, large reductions in cancer service volumes were observed. While most services recovered to prepandemic levels at the end of the first pandemic year, a substantial care deficit likely accrued. The anticipated downstream morbidity and mortality associated with this deficit underscore the urgent need to address the backlog and recover cancer care and warrant further study.
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COVID-19 , Gripe Humana , Neoplasias , Adulto , COVID-19/epidemiología , Niño , Estudios de Cohortes , Humanos , Gripe Humana/prevención & control , Neoplasias/epidemiología , Neoplasias/terapia , Ontario/epidemiología , PandemiasRESUMEN
BACKGROUND: In 2016, a sexual health guideline recommended that the first step to addressing sexual health and dysfunction resulting from cancer and its treatment is for healthcare providers to initiate sexual health conversations with patients. To action this, a sexual health knowledge translation (KT) pilot was developed. METHODS: The Relationships, Body image, and Intimacy (RBI) pilot was implemented at four regional cancer centres (RCCs) from January 2018 to February 2020 which focused on medical radiation therapists (MRT(T)s) initiating conversations with radiation therapy patients. MRT(T)s were recruited to be RBI champion role models and were trained on RBI topics, trained fellow MRT(T)s, and modelled best practice for sexual health conversations with cancer patients. Pilot interventions were developed to address barriers to RBI conversations. Both qualitative and quantitative data collection activities were implemented to evaluate pilot interventions. RESULTS: Before the RBI pilot, over 80% of MRT(T)s reported they did not initiate RBI conversations with patients. By the end of the pilot, over 52% of MRT(T)s reported initiating RBI conversations with all or almost all patients. Feedback from patients was positive. Barriers to comfort level with RBI topic were successfully addressed with continued education and training throughout the pilot. DISCUSSION: Results show increased RBI conversations during the pilot, and MRT(T)s reported increased comfort speaking with patients about RBI with continued practice. The RBI champions played a pivotal role in the pilot's success and increased MRT(T) comfort with RBI. Initial barriers to RBI conversations were less reported as the pilot progressed and RBI conversations were normalized for patients. CONCLUSIONS: The RBI pilot was a novel KT initiative focused on supporting MRT(T)s to ensure patients were aware of sexual health resources available to them during their radiation therapy. Knowledge gained from this pilot can easily be adapted to assist other health care providers and additional RCCs to confidently initiate RBI conversations with their patients.
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Neoplasias , Salud Sexual , Técnicos Medios en Salud , Imagen Corporal , Personal de Salud , Humanos , Neoplasias/radioterapia , Ontario , Salud Sexual/educaciónRESUMEN
BACKGROUND:: Transitioning low-risk cancer survivors back to their primary care provider (PCP) has been shown to be safe but the effect on health system resources and costs has not been examined. METHODS:: A Well Follow-Up Care Initiative (WFCI) was implemented in the publicly funded health system. Low-risk breast cancer (BC) survivors in the WFCI intervention group were transitioned from oncologist-led cancer clinics to PCPs. We compared health system costs ($2,014 in Canadian dollars) and resource utilization in this intervention group with that in propensity-score-matched nontransitioned BC survivors (ie, controls) diagnosed in the same year, with similar disease profile and patient characteristics using publicly funded administrative databases. RESULTS:: A total of 2,324 BC survivors from the WFCI intervention group were 1:1 matched to controls and observed for 25 months. Compared with controls, survivors in the intervention group incurred a similar number of PCP visits (6.9 v 7.5) and fewer oncologist visits (0.3 v 1.2) per person-year. Fewer survivors in the intervention group (20.1%) were hospitalized than in the control group (24.4%). There were no differences in emergency visits. More survivors in the intervention group had mammograms (82.6% v 73.1%), but other diagnostic tests were less frequent. There was a 39.3% reduction in overall mean annual costs ($6,575 v $10,832) and a 22.1% reduction in overall median annual costs ($2,261 v $2,903). Overall survival in the intervention group was not worse than controls. CONCLUSION:: Transitioning low-risk BC survivors to PCPs was associated with lower health system resource use and a lower annual cost per patient than matched controls. The WFCI model represents a reasonable approach at the population level to delivering quality care for low-risk BC survivors that seems to be cost effective.
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OBJECTIVE: To integrate patient and caregiver feedback into end-of-life (EOL) care improvement, we tested the feasibility of a standardized, common instrument to measure care experiences across multiple settings in the last three months of life. METHODS: We developed and tested a survey, called the CaregiverVoice survey, which combined two validated questionnaires, the FAMCARE-2 and VOICES-SF. A retrospective, observational design was used to survey bereaved caregivers of decedents who had received homecare services in Ontario, Canada. RESULTS: In total, 330 surveys were completed (overall response rate of 13%, regional rates ranged from 4% to 83%). There was less than 5% missing data. Most patients received care from multiple settings in the last three months of life, including 60% for which a hospital stay was reported. The overall mean of the 19 FAMCARE-2 items was 1.7 (SD 0.7), with 72% of ratings as 1 very satisfied to 2 satisfied. On VOICES-SF items, 6% of respondents rated "all end-of-life services" as fair or poor, 24% as good, and 70% as excellent or outstanding, with variation depending on care site rated. 13% of caregivers reported that pain management was fair or poor in the last week of life. CONCLUSIONS: This pilot study provides preliminary evidence that it is feasible to capture the patient and caregiver experience at EOL using a comprehensive survey, though survey distribution method greatly affected response rates. The majority of responses rated care as excellent or very good, although several specific areas for improvement were identified.