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NCCN Guidelines® Insights: Distress Management, Version 2.2023

Featured Updates to the NCCN Guidelines

Michelle B. Riba, Kristine A. Donovan, Kauser Ahmed, Barbara Andersen, IIana Braun, William S. Breitbart, Benjamin W. Brewer, Cheyenne Corbett, Jesse Fann, Stewart Fleishman, Sofia Garcia, Donna B. Greenberg, George F. Handzo Rev., Laura Herald Hoofring, Chao-Hui Huang, Sean Hutchinson, Shelley Johns, Jennifer Keller, Pallavi Kumar, Sheila Lahijani, Sara Martin, Shehzad K. Niazi, Megan Pailler, Francine Parnes, Vinay Rao, Jaroslava Salman, Eli Scher, Jessica Schuster, Melissa Teply, Angela Usher, Alan D. Valentine, Jessica Vanderlan, Megan S. Lyons, Nicole R. McMillian, and Susan D. Darlow

These NCCN Guidelines for Distress Management discuss the identification and treatment of psychosocial problems in patients with cancer. All patients experience some level of distress associated with a cancer diagnosis and the effects of the disease and its treatment regardless of the stage of disease. Clinically significant levels of distress occur in a subset of patients, and identification and treatment of distress are of utmost importance. The NCCN Distress Management Panel meets at least annually to review comments from reviewers within their institutions, examine relevant new data from publications and abstracts, and reevaluate and update their recommendations. These NCCN Guidelines Insights describe updates to the NCCN Distress Thermometer (DT) and Problem List, and to the treatment algorithms for patients with trauma- and stressor-related disorders.

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Victoria Hood, Lindsey Bandini, Taneal Carter, Alyssa Schatz, John Sweetenham, Warren Smedley, Joanna Fawzy Morales, Rebecca V. Nellis, Randy A. Jones, Lynn Zonakis, and Robert W. Carlson

Survival rates for people with cancer and quality of life for survivors have increased significantly as a result of innovations in cancer treatment, improvements in early detection, and improved healthcare access. In the United States, 1 in 2 men and 1 in 3 women will be diagnosed with cancer in their lifetime. As more cancer survivors and patients remain in the workforce, employers must evaluate how they can adjust workplace policies to meet employee and business needs. Unfortunately, many people still encounter barriers to remaining in the workplace following a cancer diagnosis for themselves or a loved one. In an effort to explore the impacts of contemporary employment policies on patients with cancer, cancer survivors, and caregivers, NCCN hosted the Policy Summit “Cancer Care in the Workplace: Building a 21st Century Workplace for Cancer Patients, Survivors, and Caretakers” on June 17, 2022. This hybrid event, through keynotes and multistakeholder panel discussions, explored issues regarding employer benefit design, policy solutions, current best and promising practices for return to work, and how these issues impact treatment, survivorship, and caregiving in the cancer community.

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Peter J. Van Veldhuizen

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Krupal B. Patel, Amir Alishahi Tabriz, Kea Turner, Brian D. Gonzalez, Laura B. Oswald, Heather S.L. Jim, Oliver T. Nguyen, Young-Rock Hong, Nasrin Aldawoodi, Biwei Cao, Xuefeng Wang, Dana E. Rollison, Edmondo J. Robinson, Cristina Naso, and Philippe E. Spiess

Background: Patients with cancer require timely access to care so that healthcare providers can prepare an optimal treatment plan with significant implications for quality of life and mortality. The COVID-19 pandemic spurred rapid adoption of telemedicine in oncology, but study of patient experience of care with telemedicine in this population has been limited. We assessed overall patient experience of care with telemedicine at an NCI-designated Comprehensive Cancer Center during the COVID-19 pandemic and examined changes in patient experience over time. Patients and Methods: This was a retrospective study of outpatient oncology patients who received treatment at Moffitt Cancer Center. Press Ganey surveys were used to assess patient experience. Data from patients with appointments between April 1, 2020, and June 30, 2021, were analyzed. Patient experience was compared between telemedicine and in-person visits, and patient experience with telemedicine over time was described. Results: A total of 33,318 patients reported Press Ganey data for in-person visits, and 5,950 reported Press Ganey data for telemedicine visits. Relative to patients with in-person visits, more patients with telemedicine visits gave higher satisfaction ratings for access (62.5% vs 75.8%, respectively) and care provider concern (84.2% vs 90.7%, respectively) (P<.001). When adjusted for age, race/ethnicity, sex, insurance, and clinic type, telemedicine visits consistently outperformed in-person visits over time regarding access and care provider concern (P<.001). There were no significant changes over time in satisfaction with telemedicine visits regarding access, care provider concern, telemedicine technology, or overall assessment (P>.05). Conclusions: In this study, a large oncology dataset showed that telemedicine resulted in better patient experience of care in terms of access and care provider concern compared with in-person visits. Patient experience of care with telemedicine visits did not change over time, suggesting that implementing telemedicine was effective.

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Deborah A. Freedman-Cass, Tanya Fischer, Ash B. Alpert, Juno Obedin-Maliver, Pamela L. Kunz, Wui-Jin Koh, and Robert W. Carlson

A core component of NCCN’s mission is to improve and facilitate equitable cancer care. Inclusion and representation of diverse populations are essential toward this goal of equity. Within NCCN’s professional content, inclusivity increases the likelihood that clinicians are prepared to provide optimal oncology care to all patients; within NCCN’s patient-facing content, it helps ensure that cancer information is relevant and accessible for all individuals. This article describes changes that have been made in the language and images used in the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) and the NCCN Guidelines for Patients to promote justice, respect, and inclusion for all patients with cancer. The goals are to use language that is person-first, nonstigmatizing, inclusive of individuals of all sexual orientations and gender identities, and anti-racist, anti-classist, anti-misogynist, anti-ageist, anti-ableist, and anti–fat-biased. NCCN also seeks to incorporate multifaceted diversity in images and illustrations. NCCN is committed to continued and expanding efforts to ensure its publications are inclusive, respectful, and trustworthy, and that they advance just, equitable, high-quality, and effective cancer care for all.

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Noël Arring, Christopher R. Friese, Bidisha Ghosh, Marita Titler, Heidi Hamann, Sanja Percac-Lima, Adrian Sandra Dobs, Michelle J. Naughton, Pooja Mishra, Melissa A. Simon, Bingxin Chen, Electra D. Paskett, Robert J. Ploutz-Snyder, Martha Quinn, and Debra L. Barton

Background: Large segments of the US population do not receive quality cancer care due to pervasive and systemic inequities, which can increase morbidity and mortality. Multicomponent, multilevel interventions can address inequities and improve care, but only if they reach communities with suboptimal access. Intervention studies often underenroll individuals from historically excluded groups. Methods: The Alliance to Advance Patient-Centered Cancer Care includes 6 grantees across the United States who implemented unique multicomponent, multilevel intervention programs with common goals of reducing disparities, increasing engagement, and improving the quality of care for targeted populations. The Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework informed the evaluation efforts across sites. Each Alliance site identified their intended populations, which included underrepresented minorities (eg, Black and Latinx persons), individuals who prefer a language other than English, and rural residents. We evaluated the demographic characteristics of participants to determine program reach. Results: Between 2018 and 2020, a total of 2,390 of 5,309 potentially eligible participants were enrolled across the 6 sites. The proportion of enrolled individuals with selected characteristics included 38% (n=908) Black adults, 24% (n=574) Latinx adults, 19% (n=454) preferring a language other than English, and 30% (n=717) rural residents. The proportion of those enrolled who were the intended population was commensurate to the proportion with desired characteristics in those identified as potentially eligible. Conclusions: The grantees met or exceeded enrollments from their intended populations who have been underserved by quality cancer care into patient-centered intervention programs. Intentional application of recruitment/engagement strategies is needed to reach individuals from historically underserved communities.

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Jan Philipp Bewersdorf, Scott F. Huntington, and Amer M. Zeidan

Acute myeloid leukemia (AML) is the most common acute leukemia in adults in the United States and has seen the approval of several novel agents over the past decade. Similar to treatments for other hematologic and solid malignancies, these novel agents are costly. In the setting of finite financial resources in the healthcare system, the concept of cost-effectiveness analyses has been developed to compare the estimated costs and associated benefits expected with different interventions (eg, drugs, diagnostic tests, procedures). Although drug approvals in the United States are not based on budgetary considerations, cost-effectiveness analyses can inform health policy decisions, resource allocation, and societal debates. However, such analyses are only capturing parts of the costs and benefits to the healthcare system, payers, and consumers, and are based on modeling assumptions with inherent limitations. In addition, cost-effectiveness analyses for several of the novel agents approved for treatment of AML are limited and have reported conflicting results. This review uses cost-effectiveness analyses of azacitidine/venetoclax and liposomal cytarabine/daunorubicin as examples to review considerations and best practices when conducting and interpreting such studies. To ensure adequate interpretability of cost-effectiveness studies, transparency in the model inputs/assumptions, data sources, and funding is of great importance, as evidenced by the discrepant conclusions across studies. Furthermore, the perspective and the healthcare system from which a cost-effectiveness analysis is conducted are important to consider because practice patterns and drug prices between countries can be variable. However, with advances in health economic modeling techniques, adherence to best practices, and increasing public interest in these types of studies, cost-effectiveness analyses can become an important tool to inform various stakeholders in the healthcare system to allocate limited resources most efficiently.

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Ivan Lolli, Anna Maria Valentini, Angela Dalia Ricci, and Raffaele Armentano

Anaplastic classic Kaposi sarcoma (CKS) is an extremely rare pathologic variant of CKS characterized by high aggressiveness and poor prognosis. We report the clinical course of this malignant histologic form in an otherwise healthy 67-year-old male from Apulia in Southern Italy. The anaplastic progression arose during a long history of CKS and developed after multiple local and systemic treatments. The extremely aggressive and chemorefractory nature of the disease dictated amputation of a lower limb and, later, surgery for metastatic pulmonary involvement. At subsequent relapse, therapy with the anti–PD-1 inhibitor pembrolizumab was started. The immunotherapy was selected based on the PD-L1 expression in the tumor and tumor microenvironment. Remarkably, PD-1 blockade induced a complete and durable response in the patient, with a disease-free survival that has exceeded 18 months, and follow-up is still ongoing.