Guideline-concordant breast cancer care by patient race and ethnicity accounting for individual-, facility- and area-level characteristics: a SEER-Medicare study.

PURPOSE: To examine racial-ethnic variation in adherence to established quality metrics (NCCN guidelines and ASCO quality metrics) for breast cancer, accounting for individual-, facility-, and area-level factors. METHODS: Data from women diagnosed with invasive breast cancer at 66+ years of age from 2000 to 2017 were examined using SEER-Medicare. Associations between race and ethnicity and guideline-concordant diagnostics, locoregional treatment, systemic therapy, documented stage, and oncologist encounters were estimated using multilevel logistic regression models to account for clustering within facilities or counties. RESULTS: Black and American Indian/Alaska Native (AIAN) women had consistently lower odds of guideline-recommended care than non-Hispanic White (NHW) women (Diagnostic workup: ORBlack 0.83 (0.79-0.88), ORAIAN 0.66 (0.54-0.81); known stage: ORBlack 0.87 (0.80-0.94), ORAIAN 0.63 (0.47-0.85); seeing an oncologist: ORBlack 0.75 (0.71-0.79), ORAIAN 0.60 (0.47-0.72); locoregional treatment: ORBlack 0.80 (0.76-0.84), ORAIAN 0.84 (0.68-1.02); systemic therapies: ORBlack 0.90 (0.83-0.98), ORAIAN 0.66 (0.48-0.91)). Commission on Cancer accreditation and facility volume were significantly associated with higher odds of guideline-concordant diagnostics, stage, oncologist visits, and systemic therapy. Black residential segregation was associated with significantly lower odds of guideline-concordant locoregional treatment and systemic therapy. Rurality and area SES were associated with significantly lower odds of guideline-concordant diagnostics and oncologist visits. CONCLUSIONS: This is the first study to examine guideline-concordance across the continuum of breast cancer care from diagnosis to treatment initiation. Disparities were present from the diagnostic phase and persisted throughout the clinical course. Facility and area characteristics may facilitate or pose barriers to guideline-adherent treatment and warrant future investigation as mediators of racial-ethnic disparities in breast cancer care.

The potential impact of exercise upon symptom burden in adolescents and young adults undergoing cancer treatment.

PURPOSE: Adolescents and young adults (AYAs) experience vast symptom burden resulting from cancer treatment-related toxicities (TRTs). Evidence supports integrated exercise to mitigate several TRTs in other cohorts; however, evidence in AYAs is lacking. Conventional reporting of TRTs adopts a maximum grade approach failing to recognise the trajectory over time, of persistent, or lower grade toxicities. Alternatively, longitudinal analysis of toxicities over time (ToxT) may provide clinically meaningful summaries of this data. We evaluated the longitudinal impact of an exercise intervention on TRTs in AYAs undergoing cancer treatment. METHODS: A prospective, randomised trial allocated participants to a 10-week exercise intervention (EG) or control group (CG) undergoing usual care. Detailed information on TRTs was collected throughout the intervention. All TRTs were graded per the Common Terminology Criteria for Adverse Events (CTCAE v5.0). RESULTS: Forty-three (43) participants (63% male, mean age 21.1 years) were enrolled. When categorised to reflect the maximal worst grade experienced (Grade 0, Grade 1-2 and ≥ Grade 3), the CG reported an increased incidence of severe fatigue (≥ Grade 3) compared with the EG (p = 0.05). No other differences between groups were evident (p > 0.05). ToxT analysis of the four most common toxicities (fatigue, pain, nausea and mood disturbances) demonstrated no difference in the mean grade of each over time (p > 0.05). CONCLUSION: A 10-week exercise intervention reduces the severity of fatigue in AYAs undergoing treatment. While the ToxT approach provided insight into the toxicity profile, adequately powered studies are needed to better understand these differences within a homogenous sample. TRIAL REGISTRATION: (ACTRN12620000663954) 10th June 2020.

Demographic and cancer-related differences between self-seeking patients and supported patients: Analysis of cancer information-service data.

OBJECTIVE: Surrogate information seeking is quite common, and several studies have presented data on caregivers, family members, and friends who seek health information on the Internet or from a cancer-information service (CIS) on behalf of cancer patients. However, these studies provide little information about the patients who are supported by surrogate seekers. Therefore, this study analyzed demographic and cancer-related differences, including diverse informational needs, between self-seeking patients and patients who benefited from surrogate seekers (ie, caregivers, family, or friends) requesting information on their behalf. METHODS: We conducted a retrospective audit of phone and e-mail inquiries to a German CIS between January and December 2016 from self-seeking patients (n = 13 723) and surrogate information seekers, as well as the corresponding supported patients (n = 6696). RESULTS: Supported patients were more likely to be males (P < 0.001), older than self-seeking patients (P < 0.001), and older than the corresponding surrogate seekers (P < 0.001). They were also more likely to be in the diagnostic or palliative stage (P < 0.001) and were less likely to suffer from breast cancer or prostate cancer (P < 0.001) than self-seeking patients. There were significant differences in the CIS requests of self-seekers and surrogate seekers. CONCLUSIONS: The results point to different support needs of self-seekers and surrogate seekers. Thus, surrogate seekers and their corresponding supported patients should be seen as a separate target group to self-seeking patients, with the former requiring informational and emotional support on diverging topics and at different disease stages.

Improving pneumococcal vaccine uptake in veterans with chronic lymphocytic leukemia through a virtual clinic.

Through a "virtual clinic," we used the electronic medical record to identify and intervene upon patients with chronic lymphocytic leukemia (cll) who were not current for pneumococcal vaccines. Within 180 days, 100/160 patients (62%) received the recommended pneumococcal vaccine. A virtual clinic may improve vaccination rates among high-risk patient populations.

Aging-related biomarkers in testicular cancer survivors after different oncologic treatments.

PURPOSE: Testicular cancer survivors (TCS) exposed to chemotherapy have an increased expression of CDKN2A/p16INK4a and a lymphocyte phenotype associated with immunosenescence. We seek to define whether the immunosenescent phenotype is associated with chemotherapy. METHODS: Case-control study of TCS, disease-free ≥3 months and stratified by primary treatment modality into orchiectomy only, chemotherapy, or bone marrow transplant (BMT). Each group was compared with age-matched healthy controls (HC). We measured the relative proportions of lymphocyte subpopulations using flow cytometry, levels of C-reactive protein, and relative expression of CDKN2A/p16INK4a quantified by qPCR. RESULTS: We included 65 patients; 19 were treated with orchiectomy only, 35 received different doses of chemotherapy, and 11 underwent BMT. The chemotherapy and BMT groups had decreased naïve CD4 cells compared to HC. The chemotherapy group showed increased central and effector memory CD4 cells, as well as effector and terminally differentiated CD8 cells, compared to HC. Chemotherapy (chemotherapy 1.84 vs. HC 0.92; p < 0.01) and BMT (BMT 6.96 vs. HC 1.25; p < 0.005) groups had higher expression of CDKN2A/p16INK4a compared to HC. The orchiectomy group showed no significant difference with HC (orchiectomy 1.73 vs. HC 1.01; p = 0.17). CRP levels were higher in all groups when compared with HC; in the orchiectomy group, they were only marginally increased (chemotherapy 0.22 vs. HC 0.06; p < 0.01; BMT 0.26 vs. HC 0.06; p < 0.01; orchiectomy 0.09 vs. HC 0.07; p < 0.01). CONCLUSIONS: Among TCS, only patients exposed to cytotoxic agents developed an immunosenescent phenotype. This finding supports the attribution of this alteration to the cytotoxic treatment.

Incorporating Value-Based Decisions in Breast Cancer Treatment Algorithms.

Given the excellent prognosis and availability of evidence-based treatment, patients with early-stage breast cancer are at risk of overtreatment. In this review, we summarize key opportunities to incorporate value-based decisions to optimize the delivery of high-value treatment across the breast cancer care continuum.

Sexual Dysfunction Among Adolescent and Young Adult Men Diagnosed with Cancer.

Purpose: Adolescent and young adult (AYA) cancer patients frequently demonstrate sexual dysfunction; however, there is a lack of data quantifying the severity and frequency. Methods: Males aged 18-39 years, diagnosed with cancer of any kind and who were scheduled to begin, were actively receiving, or had completed cancer treatment within 6 months, were offered validated surveys during their oncology appointment. These surveys included the International Index of Erectile Function (IIEF-6), Masturbation Erection Index (MEI), 36-Item Short Form Survey, and 5-point Likert scales to assess their desire and ability to engage in sex and masturbation. Results: Forty subjects completed the IIEF survey with a mean score of 17.7 ± 11, erectile dysfunction (ED) prevalence accordingly was 58%. Thirty-eight subjects completed the MEI with a mean score of 25.3 ± 5.3, ED prevalence was again 58%. Age and IIEF scores demonstrated a statistically significant (p < 0.05, n = 38) Pearson's correlation coefficient of 0.40, patients younger than 30 years had an ED prevalence of 72% (mean IIEF 13), whereas patients aged 30 years and older had an ED prevalence of 45% (mean IIEF 22). All treatment modalities had ED rates >30%: chemotherapy demonstrated the highest prevalence at 64% (mean IIEF 17), whereas radiation therapy had the lowest prevalence at 33% (mean IIEF 23). Conclusion: This study demonstrates that the prevalence of sexual dysfunction among male AYA patients undergoing treatment for cancer is high. AYA oncologists should discuss potential sexual health concerns when treating this population. The exact cause of ED (non-organic vs. organic) within this group should be explored further.

Telemedicine and cancer care in India: promises, opportunities and caveats.

Telemedicine has revolutionized areas of medical practice and care. It has a potential in field of continuum of cancer care in India. SARS-CoV-2 has highlighted the potential use of this tool effectively. Scope of newer applications of telemedicine in field of cancer is reviewed in current paper enlisting benefits to patient, healthcare providers and centers in a developing country like India. Each of them is supported by appropriate evidence and examples. An analysis of strengths and opportunities when compared with weakness and threats brings out how telemedicine can redistribute oncology work force in a rational way and minimize disruption caused by the pandemic. Telemedicine can be utilized in cancer management starting from prevention, screening, diagnosis, treatment and rehabilitation to palliative care.

Specialists working for decades in the field of oncology are the best persons to endorse telemedicine, as they can leverage its use to its full potential. The present article is a rigorous review of past literature on telemedicine as well as proposed uses of technologies based on experiences of the authors. It will strengthen promotive, preventive, curative and rehabilitative healthcare delivery.

Achieving a multilevel evidence-based approach to improve cancer care in the U.S. post-COVID era: What is the role of management?

In 2013, the Institute of Medicine already had declared the state of U.S. cancer care as "a delivery system in crisis." Beginning in early 2020, the ongoing COVID-19 pandemic has dramatically revealed the fragile nature of the U.S. health system. As a microcosm of that larger health system, cancer care can provide us with opportunities for innovative thinking and new solutions. This paper describes a series of public and private-sector cancer care initiatives that are the building blocks for a multilevel evidence-based approach to improve cancer care in the post-COVID era. Achieving these objectives requires significant managerial policy decisions, some risk taking, and the development of organizational strategies that involve collaboration within the managerial and clinical leadership. Such strategies should reflect adaptability to navigate the complex and changing science, policy and financing environment, while retaining the central values of patient-centered care. As suggested by Edward Deming, an early pioneer in quality-improvement initiatives, the problems are with the system, and the system belongs to management. Though future challenges are undefined and likely to be significant, the foundational elements of a multilevel, evidence-based approach for improving cancer care are established and able to be built upon and will offer application in the post-COVID era.

Palliative Care Referral Patterns for Adolescent and Young Adult Patients at a Comprehensive Cancer Center.

Palliative care (PC) serves a valuable role throughout the disease trajectory for adolescents and young adults (AYAs) living with cancer. A 3-year retrospective chart review was performed to characterize AYA PC referral patterns in patients aged 18-39 years to identify strategies for improving PC access. Despite known benefits, AYA referrals to PC during oncologic treatment occurred only for a small percentage of eligible patients (8.4%), largely occurred in the inpatient setting (73%), and were more likely in specific cancer types with high symptom burden and/or poor survival, with the greatest penetrance noted in lung cancer (51%).

Perception Gap in Health-Related Quality of Life Between Young Adult Survivors of Childhood Cancer and Their Family.

Young adult survivors of childhood cancer may have a perception gap with their families. Patients aged 18-39 years after treatment of cancer and their families (28 pairs) completed a survey that contained questions on health-related quality of life using the 36-item short form survey. There was a significant difference in the role-social component score (mean difference -2.23; p = 0.04) with family reporting higher scores than patients. Families may overestimate the social function of cancer survivors, emphasizing the importance of the long-term follow-up by taking into account the risk of a gap (IRB approval No.: R2257-1).

The Emergence of a Sustainable Tobacco Treatment Program across the Cancer Care Continuum: A Systems Approach for Implementation at the University of California Davis Comprehensive Cancer Center.

Tobacco treatment is increasingly recognized as important to cancer care, but few cancer centers have implemented sustainable tobacco treatment programs. The University of California Davis Comprehensive Cancer Center (UCD CCC) was funded to integrate tobacco treatment into cancer care. Lessons learned from the UCD CCC are illustrated across a systems framework with the Cancer Care Continuum and by applying constructs from the Consolidated Framework for Implementation Research. Findings demonstrate different motivational drivers for the cancer center and the broader health system. Implementation readiness across the domains of the Cancer Care Continuum with clinical entities was more mature in the Prevention domain, but Screening, Diagnosis, Treatment, and Survivorship domains demonstrated less implementation readiness despite leadership engagement. Over a two-year implementation process, the UCD CCC focused on enhancing information and knowledge sharing within the treatment domain with the support of the cancer committee infrastructure, while identifying available resources and adapting workflows for various cancer care service lines. The UCD CCC findings, while it may not be generalizable to all cancer centers, demonstrate the application of conceptual frameworks to accelerate implementation for a sustainable tobacco treatment program. Key common elements that may be shared across oncology settings include a state quitline for an adaptable intervention, cancer committees for outer/inner setting infrastructure, tobacco quality metrics for data reporting, and non-physician staff for integrated services.

Integrating biology and access to care in addressing breast cancer disparities: 25 years' research experience in the Carolina Breast Cancer Study.

PURPOSE OF REVIEW: To review research on breast cancer mortality disparities, emphasizing research conducted in the Carolina Breast Cancer Study, with a focus on challenges and opportunities for integration of tumor biology and access characteristics across the cancer care continuum. RECENT FINDINGS: Black women experience higher mortality following breast cancer diagnosis, despite lower incidence compared to white women. Biological factors, such as stage at diagnosis and breast cancer subtypes, play a role in these disparities. Simultaneously, social, behavioral, environmental, and access to care factors are important. However, integrated studies of biology and access are challenging and it is uncommon to have both data types available in the same study population. The central emphasis of Phase 3 of the Carolina Breast Cancer Study, initiated in 2008, was to collect rich data on biology (including germline and tumor genomics and pathology) and health care access in a diverse study population, with the long term goal of defining intervention opportunities to reduce disparities across the cancer care continuum. SUMMARY: Early and ongoing research from CBCS has identified important interactions between biology and access, leading to opportunities to build greater equity. However, sample size, population-specific relationships among variables, and complexities of treatment paths along the care continuum pose important research challenges. Interdisciplinary teams, including experts in novel data integration and causal inference, are needed to address gaps in our understanding of breast cancer disparities.

How vision and leadership shaped the U.S. National Cancer Institute's 50-year journey to advance the evidence base of cancer control and cancer care delivery research.

In 1971, Congress passed the National Cancer Act, landmark legislation that reorganized the National Institutes of Health's National Cancer Institute (NCI). The Act included a new focus on cancer control, including the requirement that the NCI award research grants and contracts, in collaboration with other public agencies and private industry, to conduct cancer control activities related to the diagnosis, prevention, and treatment of cancer. The requirement placed the NCI at the nexus of a rapidly changing science and a complex and dynamic healthcare delivery system and involved an evolutionary transformation to advance cancer control and cancer care delivery research along the cancer care continuum. Analysis is based on a qualitative ethnographic approach using historical records, oral histories, and targeted interviews. The multimethod approach provided the opportunity to describe the vision, leadership, and struggle to build an infrastructure, expand expertise, and forge collaboration with the NCI and a complex and changing healthcare system. As the 50th anniversary of the National Cancer Act approaches in 2021, the process and these achievements are at risk of being taken for granted or lost in the flow of history. Documenting the process, milestones, and key players provides insight and guidance for continuing to improve cancer care, advance research, and reduce cancer incidence and mortality. Cancer care is a microcosm of the larger healthcare system providing insight and lessons on the importance of developing and maintaining a research infrastructure and the role of multi-level collaboration and partnerships involving both the private and public sectors.

The Benefit of Physical Activity in Adolescent and Young Adult Cancer Patients During and After Treatment: A Systematic Review.

Cancer and its associated therapies can severely impact the physical and psychosocial functioning of adolescent and young adults (AYAs), both during treatment and well into survivorship. Physical activity during and after cancer treatment could be beneficial to the AYA population, although this cohort has received little scientific attention. A systematic search of the literature was conducted to investigate current exercise interventions in AYA-specific populations. Studies were eligible for inclusion if >50% of the study population was aged between 15 and 25 years and the study included a physical activity intervention during or after cancer treatment. Studies were critically appraised using the Cochrane Risk of Bias tool. Six articles were identified as meeting the criteria, of which 2 were nonrandomized controlled studies and 4 were pilot studies, comprising a total of 135 AYA participants. The quality of studies was variable across all assessed domains. Direct comparison on intervention outcomes was not possible due to the heterogeneity of the studies; however, trends emerged on the feasibility, acceptability, and potential positive impact of physical activity in this cohort. This review highlights the lack of high-quality studies aimed to improve physical and psychosocial functioning in AYA patients across the cancer continuum. Physical activity interventions in this cohort appear to be feasible; however, larger randomized controlled trials are warranted to investigate the direct impact of interventions on health outcomes in this cohort.

Care Transitions in Childhood Cancer Survivorship: Providers' Perspectives.

PURPOSE: Most adolescent and young adult (AYA)-aged childhood cancer survivors develop physical and/or psychosocial sequelae; however, many do not receive long-term follow-up (LTF) critical for screening, prevention, and treatment of late effects. To develop a health services research agenda to optimize care models, we conducted qualitative research with LTF providers examining existing models, and successes and challenges in maintaining survivors' connections to care across their transition to adulthood. METHODS: We interviewed 20 LTF experts (MDs, RNs, social workers, education specialists, psychologists) from 10 Children's Oncology Group-affiliated institutions, and analyzed data using grounded theory and content analysis techniques. RESULTS: Participants described the complexity of survivors' healthcare transitions. Survivors had pressing educational needs in multiple domains, and imparting the need for prevention was challenging. Multidisciplinary LTF teams focused on prevention and self-management. Care and decisions about transfer were individualized based on survivors' health risks, developmental issues, and family contexts. An interplay of provider and institutional factors, some of which were potentially modifiable, also influenced how transitions were managed. Interviewees rarely collaborated with community primary care providers to comanage patients. Communication systems and collective norms about sharing care limited comanagement capacity. Interviewees described staffing practices, policies, and informal initiatives they found reduced attrition. CONCLUSIONS: Results suggest that survivors will benefit from care models that better connect patients, survivorship experts, and community providers for uninterrupted LTF across transitions. We propose research priorities, framing attrition from LTF as a public health concern, transition as the central challenge in LTF, and transition readiness as a multilevel concept.

Being Young and Getting Cancer: Development of a Questionnaire Reflecting the Needs and Experiences of Adolescents and Young Adults with Cancer.

PURPOSE: Cancer is the leading cause of nonaccidental deaths among adolescents and young adults (AYAs). In Denmark, there are substantial gaps in knowledge concerning how AYAs with cancer perceive their diagnostic and therapeutic trajectory and report health-related outcomes. The aim of this study is to describe the development of a questionnaire targeting AYAs with cancer aiming to evaluate treatment and survivorship from the perspective of the patients. METHODS: Identification of themes and development of items included in the questionnaire were based on a synthesis of literature and qualitative interviews with AYAs in an iterative process involving both a professional advisory panel and a youth panel. During the development process, items were validated through cognitive interviews. RESULTS: The final questionnaire contained 151 closed- and open-ended items divided into 6 sections regarding: (1) "Time before treatment," (2) "Being told about your illness," (3) "Being a young patient," (4) "Your treatment," (5) "Receiving help living with and after Cancer," and (6) "How are you feeling today?." One hundred one items were specifically developed for this study, while 50 were standardized validated indexes. The questionnaire combined different types of items such as needs, preferences, experiences, and patient-reported outcomes. CONCLUSION: This is one of few developed questionnaires aiming to evaluate the perspective of AYAs with cancer through their whole cancer trajectory. Results from the questionnaire survey are intended for quality improvements and research in AYA cancer care. The study highlights the importance of an extensive patient involvement in all steps of a questionnaire development process.

Psychometric Analysis of the Three-Factor Eating Questionnaire-R18V2 in Adolescent and Young Adult-Aged Central Nervous System Tumor Survivors.

PURPOSE: Adolescent and young adult (AYA)-aged central nervous system (CNS) tumor survivors are an understudied population that is at risk of developing adverse health outcomes, such as obesity. Long-term follow-up guidelines recommend monitoring those at risk of obesity, thus motivating the need for an eating behavior questionnaire. An abbreviated online version of the Three-Factor Eating Questionnaire (TFEQ-R18v2) has been developed, but its applicability to this population is not yet known. This study investigated the instrument's factor structure and reliability in this population. METHODS: AYA-aged CNS tumor survivors (n = 114) aged 15-39 years completed the TFEQ-R18V2 questionnaire online. Confirmatory factor analysis was used to examine the fit of the three-factor structure (uncontrollable eating, cognitive restraint, and emotional eating [EE]) and reliability (internal consistency of the TFEQ-R18v2). Associations between the three factors and body mass index (BMI) were assessed by linear regression. RESULTS: The theorized three-factor structure was supported in our population (RMSEA = 0.056 and CFI = 0.98) and demonstrated good reliability (α of 0.81-0.93). EE (ß = 0.07, 95% CI 0.02-0.13) was positively associated with BMI, whereas the other two subscale scores were not. CONCLUSION: The TFEQ-R18v2 instrument holds promise for research and clinical use among AYA-aged CNS tumor survivors. The instrument may be a useful tool for researchers to develop tailored weight management strategies. It also may be a valuable tool for clinicians to monitor survivors who are at risk of obesity and to facilitate referral. Our results also suggest that EE in this population should be further investigated as a potential target for intervention.

Prevalence and Intensity of Pain and Other Physical and Psychological Symptoms in Adolescents and Young Adults Diagnosed with Cancer on Referral to a Palliative Care Service.

PURPOSE: While adolescent and young adult (AYA) oncology is recognized as a distinct specialty, there remains a paucity of literature documenting symptomatology in this cohort. This study aimed to identify the prevalence, severity, and mechanism of pain and other symptoms in AYA patients referred to a palliative care service in a specialist Australian cancer center. METHODS: A retrospective design analyzed the case file data of 33 eligible AYA patients aged 15-25 years old at diagnosis and two randomly selected control groups of patients >25 years old: unmatched and matched for diagnosis and sex. All cases were referred to the palliative care service between July 2009 and June 2012. Descriptive statistics, analysis of Edmonton Symptom Assessment Scale (ESAS) and Edmonton Classification System of Cancer Pain (ECS-CP) data, and non-parametric tests were performed. RESULTS: The most common malignancies among the AYA patients were sarcoma and hematological cancers. All AYA patients reported pain syndrome on the ECS-CP compared with 85% of the matched controls (p=0.018). An age group effect was found for mechanisms of pain (p=0.035). A trend toward more neuropathic pain among AYA cases was also found (59% vs. 39%). The most common ESAS symptoms in AYAs were pain (91%), diminished well-being (76%), fatigue (75%), and decreased appetite (67%). CONCLUSION: AYA cancer patients appear to experience a unique symptom profile with high symptom prevalence and complexity. Further research is warranted to identify determinants and inform integration of supportive and palliative care services for this unique patient cohort.

A Feasibility Study to Measure Physical Activity, Fatigue, Sleep-Wake Disturbances, and Depression in Young Adults During Chemotherapy.

Little is known about the physical activity (PA) of young adults (YAs) during cancer therapy. In this feasibility study, 14 YAs (20-34 years old) completed a six-minute walk test, recorded their steps per day for one week, and answered weekly self-reports about physical activity, fatigue, sleep-wake disturbances, and depression during one cycle of chemotherapy. Findings suggest YAs are willing to complete a PA study during chemotherapy and have variable sleep and activity schedules. Their symptoms varied in severity, with highest scores for fatigue. Studies to improve PA in YAs during chemotherapy are warranted to manage short- and long-term treatment effects.