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Background: Radiation therapy is an integral component of treatment that can predispose to carotid artery stenosis (CAS) and increase the risk of cerebrovascular events for head and neck cancer survivors. The utility of screening for CAS with carotid ultrasound in asymptomatic head and neck cancer survivors is unclear. Methods: In this prospective, cross-sectional pilot study, 60 patients who have no evidence of cancer at least 2 years from completion of RT will undergo screening carotid ultrasound to identify patients with high risk of cardiovascular events. Results: Outcomes will include clinically significant CAS, carotid intima-media thickness, acceptability/feasibility of screening, barriers to care and preliminary data on changes to medical management because of screening. Correlative multi-omics analyses will examine biomarkers of CAS after radiation therapy. Conclusion: The results of this study will provide valuable data on the prevalence of CAS and preliminary patient-centered data that will inform the design of a future large-scale, multi-site clinical trial. Clinical Trial Registration:NCT05490875 (ClinicalTrials.gov) Plain Language Summary Patients with head and neck cancer are often treated with radiation therapy. Radiation therapy can cause damage to the blood vessels in the neck. This damage can manifest as narrowing of the blood vessels like the carotid artery, which can lead to stroke. Currently, it is not clear if screening head and neck cancer survivors with ultrasound scans of the carotid arteries is feasible or acceptable to patients. This has also not been formally assessed using a prospective clinical trial. In this study, patients with a history of head and neck cancer who have no evidence of their cancer for at least 2 years since completion of their radiation therapy will be enrolled. They will undergo blood testing and a research ultrasound of the carotid arteries to check for narrowing and other findings that may signal a high risk of stroke or another cardiovascular event. Participants will complete surveys on their experience with the process and how likely they are to accept further screening or additional treatment if something is found. They will also complete surveys on their perception of their personal risk of stroke and barriers to care that would prevent them from getting screening ultrasounds. Patients will be followed for up to 6 months after the ultrasound to check for any changes in their medical care that occurred because of the screening ultrasound. Article highlights Carotid artery stenosis in head & neck cancer survivors treated with radiation therapy Radiotherapy for head and neck (HN) cancer may increase the risk of accelerated atherosclerosis and late carotid artery stenosis (CAS) in 25% of patients, and screening of asymptomatic stenosis may be useful and cost-effective in specific high-risk populations. If clinically significant stenosis is identified, risk reduction strategies such as optimal medical management with or without procedural intervention may reduce the risk of stroke. Data supporting the use of carotid ultrasound (CUS) for HN cancer survivors are sparse, and no guideline currently recommends CUS screening for asymptomatic patients. Carotid ultrasound surveillance for detection of asymptomatic carotid artery stenosis after head & neck radiotherapy CUS allows for cardiovascular risk stratification using stenosis and intima-media thickness measurements. Knowledge gaps with regard to the use of CUS screening in this population include patient acceptability, feasibility, and clinical utility. Rates of change in medical management for screen-detected carotid stenosis in HN cancer survivors have not been assessed in a prospective study. Pilot trial of carotid artery ultrasound in head & neck cancer survivors In this single-institution trial, 60 patients with a history of HN cancer treated with radiotherapy will undergo screening CUS. Patients will be evaluated for CAS (peak systolic velocity by Doppler ultrasonography), and intima-media thickness will be measured. Outcomes include patient acceptability, feasibility, barriers to care and perceived stroke risk among participants. In patients with clinically significant stenosis, the rate of resultant medical interventions (e.g., new medication, additional imaging or intervention) will be determined. Conclusion This prospective study for CUS screening in HN cancer survivors will obtain novel preliminary data to better understand the utility and feasibility of a CUS screening program. Preliminary results will inform future trials focused on the efficacy and cost-effectiveness of carotid artery ultrasound screening in this patient population. Correlative analysis will elucidate novel biomarkers and mechanisms of post-radiotherapy CAS. [ABSTRACT FROM AUTHOR]

Purpose: Financial hardship as a result of cancer treatment can have a significant and lasting negative impact on adolescents and young adults (AYAs) and their families. To address a lack of developmentally informed and psychometrically sound measures of financial hardship for AYAs and their caregivers, we used rigorous measurement development methods recommended by the National Institutes of Health's Patient-Reported Outcomes Measurement Information System® (PROMIS®) to determine comprehensibility and relevance of measure content. Methods: Our multi-step approach involved item identification, refinement, and generation; translatability and reading level review; and cognitive interviews. A purposive sample of 25 AYAs and 10 caregivers participated, ensuring representation across age, education, gender, race/ethnicity, and cancer type. Results: Fifty patient-reported and caregiver-reported items were developed across material, psychosocial, and behavioral subdomains of financial hardship. Translatability and reading level reviews resulted in 22 patient-reported and 25 caregiver-reported items being rewritten. Eighty-eight percent of patients and all caregivers described the items as easy to answer. Younger AYAs (15 to 25 years of age) were more likely to say the items were less relevant for them. Forty-six patient-reported and 48 caregiver-reported items were recommended for further testing. Conclusion: This study is the first to use in-depth qualitative methods to center AYA patient and caregiver experiences in the creation of new measures of financial hardship. Data support the comprehensibility and content validity of these preliminary item banks. Future large-scale, quantitative testing will lead to additional refinements and support the use of short forms and computer-adaptive testing for a diverse sample of AYAs and their caregivers. [ABSTRACT FROM AUTHOR]

PURPOSE: Routine collection of sexual orientation (SO) and gender identity (GI; collectively SOGI) in cancer clinics advances cancer care equity. METHODS: In 2022, NCI Community Oncology Research Program (NCORP) practice groups were asked about routine collection of SOGI data in the electronic health record. The proportions of practice groups reporting collection of SO and/or GI data were calculated, and practice group characteristics were assessed for associations. RESULTS: Of 271 practice groups nationwide, 42% (n = 112) collect SO data, 58% (n = 157) collect GI data, and 35% (n = 96) collect both. In multivariate analyses, SO data collection was associated with practice groups having minority outreach staff (odds ratio [OR], 2.07 [95% CI, 1.12 to 3.81]; P =.02); GI data collection was associated with practice groups located in the Northeastern United States (OR, 2.08 [95% CI, 0.73 to 5.91]; P =.045), and those with a higher proportion of new patients who were White (OR, 1.02 [95% CI, 1.01 to 1.04]; P <.001). Practice groups in the South were least likely to collect SOGI data (OR, 0.49 [95% CI, 0.26 to 0.94]; P =.004). There were no statistically significant differences in SO and/or GI collection on the basis of the practice group's proportion of Medicaid/Medicare patients, number of new patients with cancer per year, or practice ownership. CONCLUSION: Slightly over one third of NCORP practice groups report routinely collecting SOGI data. There are regional differences in data collection, underscoring the need to craft targeted, region-specific interventions focused on boosting the capture and recording of SOGI data in an affirming manner. [ABSTRACT FROM AUTHOR]

Background: Adolescents and young adults (AYAs) commonly receive cancer care in the community setting, but the availability of treatment options, resources, and support services for this population is not well known. The National Cancer Institute Community Oncology Research Program (NCORP) funds a network of practices whose mission is to increase access to cancer care and clinical trials in the community setting. We describe our interdisciplinary methodological approach to identify and characterize NCORP practices where AYAs receive cancer care. Methods: NCORP practices completed a cross-sectional Landscape Assessment to describe resources and practice characteristics. We established an interdisciplinary team of stakeholders to analyze the Landscape Assessment data relating to AYAs. Through an iterative process, we assessed NCORP practice responses to questions assessing AYA cancer care capacity, determined a threshold to define practices treating AYAs, and characterized these practices. Results: We determined that practices provide cancer care to AYAs if the following criteria were met: (1) endorsed having an AYA program (n = 20), (2) AYAs comprised ≥5% of annual cancer cases (n = 55), or (3) the practice treated ≥50 AYA cancer cases annually (n = 70). Of 271 NCORP practices, 100 (37%) met any criteria, whereas 87 (32%) did not; 84 (31%) could not be classified due to missing or unknown data. Conclusion: Using an interdisciplinary process, we define practices that treat AYAs in the community. We posit a uniform approach to examine resources and practice capacity for AYAs receiving cancer care across the United States to guide future AYA-focused cancer care delivery research development. [ABSTRACT FROM AUTHOR]

Background Despite their vital roles, informal caregivers of adult cancer patients are commonly overlooked in cancer care. This study describes processes for identifying cancer caregivers and processes for distress screening and management among caregivers and patients in the understudied community oncology setting. Methods Supportive care leaders from the National Cancer Institute Community Oncology Research Program practices completed online survey questions regarding caregiver identification, caregiver and patient distress screening, and distress management strategies. We described practice group characteristics and prevalence of study outcomes. Multivariable logistic regression explored associations between practice group characteristics and caregiver identification in the electronic health record (EHR). Results Most (64.9%, 72 of 111) supportive care leaders reported routine identification and documentation of informal caregivers; 63.8% record this information in the EHR. Only 16% routinely screen caregivers for distress, though 92.5% screen patients. Distress management strategies for caregivers and patients are widely available, yet only 12.6% are routinely identified and screened and had at least 1 referral strategy for caregivers with distress; 90.6% are routinely screened and had at least 1 referral strategy for patients. Practices with a free-standing outpatient clinic (odds ratio [OR] = 0.29, P  = .0106) and academic affiliation (OR = 0.01, P  = .04) were less likely to identify and document caregivers in the EHR. However, higher oncologist volume was associated with an increased likelihood of recording caregiver information in the EHR (OR = 1.04, P  = .02). Conclusions Despite high levels of patient distress screening and management, few practices provide comprehensive caregiver engagement practices. Existing patient engagement protocols may provide a promising platform to build capacity to better address caregiver needs. [ABSTRACT FROM AUTHOR]

Objective: Characterize key factors and training needs of U.S. cancer centers in implementing family caregiver support services. Methods: Sequential explanatory mixed methods design consisting of: (1) a national survey of clinicians and administrators from Commission‐on‐Cancer‐accredited cancer centers (N = 238) on factors and training needed for establishing new caregiver programs and (2) qualitative interviews with a subsample of survey respondents (N = 30) to elicit feedback on survey findings and the outline of an implementation strategy to facilitate implementation of evidence‐based family caregiver support (the Caregiver Support Accelerator). Survey data was tabulated using descriptive statistics and transcribed interviews were analyzed using thematic analysis. Results: Top factors for developing new caregiver programs were that the program be: consistent with the cancer center's mission and strategic plan (87%), supported by clinic leadership (86.5%) and providers and staff (85.7%), and low cost or cost effective (84.9%). Top training needs were how to: train staff to implement programs (72.3%), obtain program materials (63.0%), and evaluate program outcomes (62.6%). Only 3.8% reported that no training was needed. Qualitative interviews yielded four main themes: (1) gaining leadership, clinician, and staff buy‐in and support is essential; (2) cost and clinician burden are major factors to program implementation; (3) training should help with adapting and marketing programs to local context and culture; and (4) the Accelerator strategy is comprehensive and would benefit from key organizational partnerships and policy standards. Conclusion: Findings will be used to inform and refine the Accelerator implementation strategy to facilitate the adoption and growth of evidence‐based cancer caregiver support in U.S. cancer centers. [ABSTRACT FROM AUTHOR]

PURPOSE: We described information technology support and use of telemedicine for cancer care and research purposes at community oncology practices within the National Cancer Institute Community Oncology Research Program (NCORP). METHODS: We used data from the NCORP 2017 and 2022 Landscape Assessments. Separate logistic regression models were used to assess factors associated with the use of telemedicine for delivery of cancer care in 2017 and for research purposes in 2022 (cancer care delivery not assessed in 2022). RESULTS: Information was available from 210 and 259 practice groups excluding pediatric-only groups in 2017 and 2022, respectively. In 2017, 30% of practice groups used telemedicine for delivery of cancer care; half of these (15% overall) could use telemedicine for research purposes. In 2022, telemedicine was used for research purposes in 73% of practice groups. In multivariable models, self-identifying as a safety-net hospital was associated with a lower odd of telemedicine use for delivery of cancer care (adjusted odds ratio [AOR], 0.39; 95% CI, 0.17 to 0.93), whereas affiliation with a designated critical access hospital was associated with a higher odd of telemedicine use for delivery of cancer care (AOR, 2.29; 95% CI, 1.10 to 4.76). Having a general survivorship clinic (AOR, 1.92; 95% CI, 1.04 to 3.54) and number of oncology providers (increase per 10 providers; AOR, 1.32; 95% CI, 1.05 to 1.65) were associated with telemedicine use for research purposes. CONCLUSION: Almost one third of NCORP practice groups used telemedicine for cancer care delivery in 2017. In 2022, there is high capacity among NCORP practices (almost three-quarters) to use telemedicine for research purposes, especially among practices with a general survivorship clinic and a greater provider number. 3/4 of #ncorp practices used #telemed for research, more use when they have more providers and a survivorship clinic. [ABSTRACT FROM AUTHOR]

Background: Cancer and its treatments can result in substantial financial burden that may be especially distressing for adolescents and young adults (AYAs) since they are at a developmental stage focused on completing one's education and establishing independence. The purpose of this study was to develop a conceptual model of financial burden among AYA cancer patients to inform development of a financial burden measure. Methods: In‐depth concept elicitation interviews were conducted with a purposive‐selected stakeholder sample (36 AYAs and 36 AYA oncology health care providers). The constant comparative method was used to identify themes that illustrate AYAs' experience of financial burden by stakeholder groups. Results: Eleven financial burden themes emerged: (1) impact of socioeconomic status and age; (2) significant cancer costs; (3) indirect cost "ripple effects"; (4) limited awareness of costs (adolescents); (5) emotional impact; (6) feeling overwhelmed navigating the health care system; (7) treatment decision modifications; (8) reducing spending; (9) coping strategies; (10) financial support; and (11) long‐lasting impact. The conceptual model highlights the importance of material, psychosocial, and behavioral domains of financial burden with an emphasis on phase along the cancer continuum and developmental stage in the experience of financial burden for AYAs. Conclusions: Issues presented in the voice of AYA patients and providers highlight the profound impact of financial burden in this survivor group. The next step in this work will be to develop and test a patient‐reported measure of financial burden among AYA cancer survivors. [ABSTRACT FROM AUTHOR]

Background: Cancer-related financial hardship is associated with poor care outcomes and reduced quality of life for patients and families. Scalable intervention development to address financial hardship requires knowledge of current screening practices and services within community cancer care. Methods: The NCI Community Oncology Research Program (NCORP) 2017 Landscape Assessment survey assessed financial screening and financial navigation practices within U.S. community oncology practices. Logistic models evaluated associations between financial hardship screening and availability of a cancer-specific financial navigator and practice group characteristics (e.g., safety-net designation, critical access hospital, proportion of racial and ethnic minority patients served). Results: Of 221 participating NCORP practice groups, 72% reported a financial screening process and 50% had a cancer-specific financial navigator. Practice groups with more than 10% of new patients with cancer enrolled in Medicaid (adjOR = 2.81, P = 0.02) and with less than 30% racial/ethnic minority cancer patient composition (adjOR = 3.91, P < 0.01) were more likely to screen for financial concerns. Practice groups with less than 30% racial/ethnic minority cancer patient composition (adjOR = 2.37, P < 0.01) were more likely to have a dedicated financial navigator or counselor for patients with cancer. Conclusions: Most NCORP practice groups screen for financial concerns and half have a cancer-specific financial navigator. Practices serving more racial or ethnic minority patients are less likely to screen and have a designated financial navigator. [ABSTRACT FROM AUTHOR]

Caregivers of children with chronic illnesses experience elevated stress and reduced self‐care. Although self‐care can be beneficial, it is a form of disengagement coping, disengaging from the stressor to try and feel better, which has been characterized as a maladaptive coping strategy. In this study, we test the formulation that avoidance, avoiding the stressor and any thoughts related to it, is a maladaptive disengagement coping strategy, whereas distraction, taking a break from the stressor to do something pleasant, is an adaptive disengagement coping strategy. We assessed these strategies as well as psychosocial outcomes and trait predictors in caregivers of children with chronic illnesses. Results showed that those high in avoidance coping reported lower well‐being, higher depression and higher stress. Alternatively, when controlling for avoidance, those high in distraction reported higher well‐being, lower depression and lower stress. In addition, distraction exhibited strong relationships to increased positive emotions during caregiving situations and was associated with positive personality traits. These results suggest that not all disengagement coping strategies are equal; although avoidance may be a maladaptive strategy, distraction can be an effective positive emotional strategy for coping with the chronic stress of caregiving for a child with a chronic illness. [ABSTRACT FROM AUTHOR]

Background: Supportive care interventions have demonstrated benefits for both informal and/or family cancer caregivers and their patients, but uptake generally is poor. To the authors' knowledge, little is known regarding the availability of supportive care services in community oncology practices, as well as engagement practices to connect caregivers with these services. Methods: Questions from the National Cancer Institute Community Oncology Research Program (NCORP)'s 2017 Landscape Survey examined caregiver engagement practices (ie, caregiver identification, needs assessment, and supportive care service availability). Logistic regression was used to assess the relationship between the caregiver engagement outcomes and practice group characteristics. Results: A total of 204 practice groups responded to each of the primary outcome questions. Only 40.2% of practice groups endorsed having a process with which to systematically identify and document caregivers, although approximately 76% were routinely using assessment tools to identify caregiver needs and approximately 63.7% had supportive care services available to caregivers. Caregiver identification was more common in sites affiliated with a critical access hospital (odds ratio [OR], 2.44; P =.013), and assessments were less common in safety‐net practices (OR, 0.41; P =.013). Supportive care services were more commonly available in the Western region of the United States, in practices with inpatient services (OR, 2.96; P =.012), and in practices affiliated with a critical access hospital (OR, 3.31; P =.010). Conclusions: Although many practice groups provide supportive care services, fewer than one‐half systematically identify and document informal cancer caregivers. Expanding fundamental engagement practices such as caregiver identification, assessment, and service provision will be critical to support recent calls to improve caregivers' well‐being and skills to perform caregiving tasks. Although many community oncology practice groups provide supportive care services, fewer than one‐half systematically identify and document informal cancer caregivers. Expanding fundamental engagement practices such as caregiver identification, assessment, and service provision will be critical to support recent calls to improve caregivers' well‐being and skills to perform caregiving tasks. [ABSTRACT FROM AUTHOR]

Objective: The demands of providing unpaid care for someone with a disabling health condition (i.e., informal caregiving) can limit attention to one's own health needs. Using a nationally representative survey, this study examines whether caregivers report different healthcare utilization relative to non-caregivers. Method: Participants in the Health Information National Trends Survey 5, Cycle 1 reported whether they provided unpaid care and healthcare utilization outcomes. Logistic regressions and chi-square tests with jackknife variance estimation were used. Results: Caregivers (N = 391) did not differ from non-caregivers (N = 2,894) in time since routine checkup or number of healthcare appointments in the past year (p values >.25). Among caregivers, number of healthcare appointments differed according to caregivers' relationship to the care recipient (p =.04). Discussion: Findings suggest that informal caregivers access routine healthcare at a frequency similar to non-caregivers. Further research should determine whether this utilization is optimal, or whether increased utilization during caregiving might help attenuate caregivers' longer term morbidity. [ABSTRACT FROM AUTHOR]

Background: A recommendation to undergo a colonoscopy, an invasive procedure that requires commitment and motivation, planning (scheduling and finding a driver) and preparation (diet restriction and laxative consumption), may be uniquely challenging for individuals with multiple chronic conditions (MCCs). This qualitative study aimed to describe the barriers and facilitators to colonoscopy experienced by such patients. Materials and methods: Semistructured focus groups were conducted with male Veterans who were scheduled for outpatient colonoscopy and either failed to complete the procedure or completed the examination. Focus group recordings were transcribed and analyzed by an inductive grounded approach using constant comparative analysis. Results: Forty-four individuals aged 51-83 years participated in this study (23 adherent and 21 nonadherent). Participants had an average of 7.4 chronic conditions (range 2-14). The five most common chronic conditions were hypertension (75%), hyperlipidemia (75%), osteoarthritis/degenerative joint disease (59%), atherosclerotic heart disease (48%), and diabetes mellitus (36%). We identified four unique themes that influenced motivation to undergo a colonoscopy: competing medical priorities, low perceived benefit, a prior negative colonoscopy experience, and pre-existing medical conditions. Additionally, we identified four themes that influenced individuals' ability to complete the examination: difficulty with bowel cleansing, difficulty with travel, worry about exacerbation of pre-existing conditions, and heightened concerns about potential complications. Conclusion: MCCs are common in individuals referred for colonoscopy and generate unique barriers to colonoscopy completion related to medication, dietary changes, transportation, preparation processes, symptoms exacerbation, and complication concerns. Future research should examine whether tailored interventions that include education and support in addressing the unique barriers can enhance colonoscopy completion. [ABSTRACT FROM AUTHOR]

Purpose: Head and neck cancer (HNC) patients suffer from significant morbidity, which may introduce challenging care demands and subsequent stress-induced mind–body interactions for informal caregivers. This prospective study evaluated patient and caregiver predictors of diurnal cortisol rhythm among HNC caregivers during radiation treatment. Method: Patient–caregiver dyads completed measures at radiation treatment start (T1; n = 32) and 5 weeks into treatment (T2; n = 29). Measures included the Functional Assessment of Cancer Therapy–Head and Neck, the Caregiver Quality of Life (QOL) Index–Cancer, the Caregiver Reaction Assessment, the Medical Outcomes Social Support Survey, and the Eating Assessment tool. Patients also received a clinical swallowing evaluation using the Functional Assessment of Oral Intake Scale. Caregiver cortisol concentrations were assessed from salivary samples at T1 and T2. Results: Caregiver cortisol slope became significantly flatter during radiation treatment. Greater caregiver schedule burden was associated with a flatter cortisol slope (β = .35, p = .05) in caregivers at T1. Lower patient functional QOL (β = −.41, p = .05) and lower overall caregiver QOL at T1 (β = −.39, p = .04) were each separately associated with a flatter cortisol slope in caregivers over treatment. Conclusions: Results suggest the presence of a mind–body interaction in HNC caregivers. Dysregulation in diurnal cortisol rhythm in caregivers was significantly associated with increased caregiver schedule burden and lower patient and caregiver QOL. Targeted interventions developed for HNC caregivers may help to prevent negative health outcomes associated with dysregulated cortisol. [ABSTRACT FROM AUTHOR]

Understanding the experiences of community oncology practices in recruiting informal (unpaid/family) caregivers into research studies can inform strategies to improve caregiver enrollment. We used data from the 2022 National Cancer Institute Community Oncology Research Program (NCORP) Landscape Assessment to describe the experience of recruiting informal caregivers for research studies in community oncology practices. Among 258 practice groups, only one-third (30%, 78/258) reported prior experience recruiting informal caregivers for research studies. In multivariable logistic analyses, having a greater number of oncology providers (increase per 10 providers, adjusted odds ratio [AOR] 1.16, 95% CI 1.03-1.31) and having advanced practice providers (APPs) involved in research (AOR 2.17, 95% CI 1.05-4.48) were significantly associated with prior experience recruiting caregivers. In conclusion, many community oncology practices lack caregiver recruitment experience and may benefit from education, integration of APPs/caregiver stakeholders in research infrastructure, and/or other strategies to improve caregiver recruitment., (© The Author(s) 2024. Published by Oxford University Press.)