Developing a Comprehensive Adolescent and Young Adult Cancer Program: Lessons Learned from 7 Years of Growth and Progress.

Purpose: Every year, nearly 100,000 adolescents and young adults (15-39 years, AYAs) are diagnosed with cancer in the United States and many have unmet physical, psychosocial, and practical needs during and after cancer treatment. In response to demands for improved cancer care delivery for this population, specialized AYA cancer programs have emerged across the country. However, cancer centers face multilevel barriers to developing and implementing AYA cancer programs and would benefit from more robust guidance on how to approach AYA program development. Methods: To contribute to this guidance, we describe the development of an AYA cancer program at the University of North Carolina (UNC) Lineberger Comprehensive Cancer Center. Results: We summarize the evolution of UNC's AYA Cancer Program since it was established in 2015, offering pragmatic strategies for developing, implementing, and sustaining AYA cancer programs. Conclusion: The development of the UNC AYA Cancer Program since 2015 has generated many lessons learned that we hope may be informative to other cancer centers seeking to build specialized services for AYAs.

A Visual Case-Oriented Analysis of Stress-Related Symptoms in Caregivers of Allogeneic Bone Marrow Transplantation Recipients.

OBJECTIVES: To describe trends in caregiver stress and stress-related symptoms (anxiety, depression, fatigue, and sleep disturbance) across 12 weeks post-transplantation. SAMPLE & SETTING: 11 caregivers were recruited from a National Cancer Institute-designated comprehensive cancer center's bone marrow transplantation (BMT) outpatient clinic in the southeastern United States. METHODS & VARIABLES: A visual case-oriented analysis was conducted on data from 11 caregivers' weekly self-reported data to identify trends after allogeneic BMT. RESULTS: The authors identified three primary trends as follows: U-shaped (highest symptoms at start of transplantation and end of study; n = 3), negatively sloped (highest symptoms at beginning of transplantation and decreasing over time; n = 2), and V-shaped predischarge (highest symptoms at start of transplantation and right before discharge home; n = 4). Two caregivers did not have postdischarge data because of patient death prior to study completion. IMPLICATIONS FOR NURSING: Caregivers may benefit from additional support to manage their stress-related symptoms at the start of transplantation and just before discharge.

An academic-practice partnership during COVID-19 pandemic: Transitioning from a clinical to virtual fellowship.

AIMS: Discuss the needed modifications that occurred to the academic-practice oncology partnership during the COVID-19 pandemic. BACKGROUND: To meet the workforce needs of nurses who care for adults with cancer, an academic-practice partnership was created in 2016. The University of North Carolina at Chapel Hill School of Nursing, North Carolina Cancer Hospital and UNC Lineberger Comprehensive Cancer Center collaborated to provide structured clinical and didactic practice experiences for undergraduate nursing students interested in oncology nursing. With COVID-19, nursing students were not permitted to be in the clinical setting. DESIGN: Discursive paper. METHOD: An innovative and collaborative partnership created reflective and interactive activities. The majority of the learning activities were created at the revised Bloom's taxonomy level of application or higher, with some encompassing multiple levels. Students engaged in a variety of meaningful experiences requiring multiple learning processes that promoted professional development in the interpersonal and critical thinking domains. CONCLUSIONS: Despite the challenges of COVID-19, the delivery of oncology nurse fellowship was successful because of innovative virtual strategies. RELEVANCE TO CLINICAL PRACTICE: Our academic-practice partnership allowed the nursing students to develop their interpersonal and critical thinking skills without entering the clinical site. This is an approach encouraged by the authors for other schools of nursing. This manuscript is submitted as a Special Issue Discursive Article, and thus, the authors declare that an EQUATOR Checklist has not been used.

Management of Androgen Deprivation Therapy-Associated Hot Flashes in Men With Prostate Cancer.

PROBLEM IDENTIFICATION: To determine best practices for managing hot flashes associated with androgen deprivation therapy (ADT) in men with prostate cancer. LITERATURE SEARCH: The CINAHL®, Embase®, PsycINFO®, PubMed®, and Scopus® databases were used to identify randomized controlled trials (RCTs) and quasiexperimental studies published between January 1994 and June 2018. DATA EVALUATION: Using the Cochrane Handbook for Systematic Reviews of Interventions, the authors reviewed 15 studies examining the effects of pharmacologic or complementary and alternative medicine interventions on ADT-associated hot flashes in men with prostate cancer. SYNTHESIS: Pharmacologic interventions (e.g., cyproterone, medroxyprogesterone, megestrol acetate) showed some promise for reducing hot flashes but were associated with side effects and risks. Acupuncture demonstrated potential benefit in reducing hot flashes without side effects. IMPLICATIONS FOR RESEARCH: Evidence is insufficient to support interventions for ADT-associated hot flashes in men with prostate cancer. Future RCTs should be sufficiently powered, include a control group, and use standardized outcome measures.

Developing a Quality of Cancer Survivorship Care Framework: Implications for Clinical Care, Research, and Policy.

There are now close to 17 million cancer survivors in the United States, and this number is expected to continue to grow. One decade ago the Institute of Medicine report, From Cancer Patient to Cancer Survivor: Lost in Transition, outlined 10 recommendations aiming to provide coordinated, comprehensive care for cancer survivors. Although there has been noteworthy progress made since the release of the report, gaps remain in research, clinical practice, and policy. Specifically, the recommendation calling for the development of quality measures in cancer survivorship care has yet to be fulfilled. In this commentary, we describe the development of a comprehensive, evidence-based cancer survivorship care quality framework and propose the next steps to systematically apply it in clinical settings, research, and policy.

The Effects of Exercise on Patient-Reported Outcomes and Performance-Based Physical Function in Adults With Acute Leukemia Undergoing Induction Therapy: Exercise and Quality of Life in Acute Leukemia (EQUAL).

INTRODUCTION: Fatigue is a distressing symptom for adults with acute leukemia, often impeding their ability to exercise. OBJECTIVES: 1) Examine effects of a 4-week mixed-modality supervised exercise program (4 times a week, twice a day) on fatigue in adults with acute leukemia undergoing induction chemotherapy. 2) Evaluate effects of exercise program on cognition, anxiety, depression, and sleep disturbance. 3) Evaluate effect of intervention on adherence to exercise. METHODS: 17 adults (8 intervention, 9 control), aged 28-69 years, newly diagnosed with acute leukemia were recruited within 4 days of admission for induction treatment. Patient-reported outcomes (PROs) (fatigue, cognition, anxiety, depression, sleep disturbance, mental health, and physical health) and fitness performance-based measures (Timed Up and Go [TUG], Karnofsky Performance Status, and composite strength scoring) were assessed at baseline and at discharge. Changes in PRO and performance-based physical function measures from baseline to time of discharge were compared between groups using Wilcoxon Rank Sum tests. RESULTS: With PROMIS (Patient-Reported Outcomes Measurement Information System) Fatigue, we found a median change in fatigue (-5.95) for the intervention group, which achieved a minimally important difference that is considered clinically relevant. Intervention group reduced their TUG performance by 1.73 seconds, whereas the control group remained fairly stable. A concerning finding was that cognition decreased for both groups during their hospitalization. 80% adherence of visits completed with a mean of 6 sessions attended per week. CONCLUSIONS: Our study provides information on the impact of exercise on symptomatology, with focus on fatigue and other psychosocial variables in acute leukemia.

Survivorship Care Planning: Why Is It Taking So Long?

Survivorship care planning is a process that focuses on the transition from active cancer treatment to a coordinated and comprehensive care system to address patients' unique needs. Survivorship care plans (SCPs) are increasingly viewed as a key component of survivorship care planning. SCPs have been recommended for >10 years to promote care coordination, communication, and record-keeping efficiency; however, SCP implementation has been challenging. We elaborate on the challenges of SCP implementation, summarize evidence regarding potential methods of promoting SCP implementation, and describe a research agenda for generating more definitive evidence to support SCP implementation in practice.

Parenting while living with advanced cancer: A qualitative study.

BACKGROUND: Patients with advanced cancer who have dependent children are an important population with a life-limiting illness and high levels of psychological distress. Few studies have addressed the experience of being a parent with advanced cancer and their potential palliative needs. AIM: To describe the experience of living with advanced cancer as a parent, including illness experience, parental concerns, and treatment decision making and to explore whether these experiences differ by their functional status. DESIGN: We conducted a cross-sectional, qualitative study using in-depth, semi-structured interviews. Data were analyzed using thematic content analysis. SETTING AND PARTICIPANTS: A total of 42 participants with metastatic cancer and with at least one child under the age of 18 years were recruited from a comprehensive cancer center. 25 participants were rated as having high functional status (the Eastern Cooperative Oncology Group (ECOG) Performance Status Scale = 0-1) and 17 with low functional status (ECOG=2-4). RESULTS: We identified four themes regarding the experience of being a parent with advanced cancer: (1) parental concerns about the impact of their illness and death on their children, (2) "missing out" and losses of parental role and responsibilities, (3) maintaining parental responsibilities despite life-limiting illness, and (4) parental identity influencing decision making about treatment. Parental functional status influenced not only physical responsibilities but also intensified parenting psychological concerns. CONCLUSION: Parents with metastatic cancer may have unique palliative care needs as they experience parenting concerns while managing the psychological and physical demands of advanced cancer.

Assuring Quality Cancer Survivorship Care: We've Only Just Begun.

Clinical practice guidelines, quality metrics, and performance improvement projects are the key tools of the national movement to improve and assure quality cancer care. Each of these evaluation instruments is intended to assess quality from a unique perspective, including that of the individual provider, the practice/hospital, and the health care system. A number of organizations have developed or endorsed quality measures specific to cancer, however, these have not formally included survivorship measures. Fortunately, the American Society of Clinical Oncology (ASCO), the National Comprehensive Cancer Network, the American Cancer Society, and the American College of Surgeons (ACoS) have taken a leadership role in developing survivorship guidelines and quality metrics. Both ASCO and ACoS have focused their efforts on the treatment summary and care plan, a document that was proposed in the 2006 Institute of Medicine report on cancer survivorship. ASCO has proposed a care plan template for implementation and incorporation into the electronic health records (EHR), which will lend itself to structure, process, and outcome measurement. ACoS, conversely, has included the care plan in its cancer program standards with annual evaluation metrics. In addition, ASCO has developed a number of key survivorship-relevant metrics as part of its Quality Oncology Practice Initiative (QOPI), a tool developed to measure quality cancer care and assess adherence to guidelines across academic and community practices. Together, these efforts will direct us to more effective ways to disseminate guideline recommendations and to better methods of assessing quality survivorship care nationally.

Patient-reported symptoms and quality of life in adults with acute leukemia: a systematic review.

PURPOSE/OBJECTIVES: Systematically summarize findings from research conducted on adult acute leukemia survivors as they relate to symptoms and quality of life (QOL). 
 DATA SOURCES: Systematic review of the literature from 1990­2013 found in the PubMed, PsycINFO®, EMBASE, and CINAHL® databases, as well as manual searches. 
 DATA SYNTHESIS: The review identified 16 quantitative studies and 1 qualitative study published from 1990­2013 that used a self-reported QOL or symptom questionnaire. Fatigue was the most commonly assessed and reported symptom, followed by depression. 
 CONCLUSIONS: Acute leukemia and its treatment have a significant impact in all QOL domains. Future studies should include longitudinal research, more than one recruitment site, increased minority representation, and home-based exercise interventions as ways to improve all domains of QOL. 
 IMPLICATIONS FOR NURSING: This review increases awareness of commonly reported symptoms faced by adults with acute leukemia. Oncology nurses are central in monitoring and reporting symptoms to the interdisciplinary team that may contribute to changes in function, with the overall goal of optimizing QOL over time. 


Palliative Sedation: An Analysis of International Guidelines and Position Statements.

PURPOSE: To describe the suggested clinical practice of palliative sedation as it is presented in the literature and discuss available guidelines for its use. METHODS: CINAHL, PubMed, and Web of Science were searched for publications since 1997 for recommended guidelines and position statements on palliative sedation as well as data on its provision. Keywords included palliative sedation, terminal sedation, guidelines, United States, and end of life. Inclusion criteria were palliative sedation policies, frameworks, guidelines, or discussion of its practice, general or oncology patient population, performance of the intervention in an inpatient unit, for humans, and in English. Exclusion criteria were palliative sedation in children, acute illness, procedural, or burns, and predominantly ethical discussions. RESULTS: Guidelines were published by American College of Physicians-American Society of Internal Medicine (2000), Hospice and Palliative Nurses Association (2003), American Academy of Hospice and Palliative Medicine (2006), American Medical Association (2008), Royal Dutch Medical Association (2009), European Association for Palliative Care (2009), National Hospice and Palliative Care Organization (2010), and National Comprehensive Cancer Network (2012). Variances throughout guidelines include definitions of the practice, indications for its use, continuation of life-prolonging therapies, medications used, and timing/prognosis. RECOMMENDATIONS: The development and implementation of institutional-based guidelines with clear stance on the discussed variances is necessary for consistency in practice. Data on provision of palliative sedation after implementation of guidelines needs to be collected and disseminated for a better understanding of the current practice in the United States.

Summing it up: an integrative review of studies of cancer survivorship care plans (2006-2013).

In 2006, the Institute of Medicine recommended that cancer survivors who are completing primary treatment receive a survivorship care plan (SCP) based on face validity. The state of scientific knowledge regarding the SCP is unclear. The authors conducted an integrative review of existing evidence regarding SCPs. The MEDLINE/PubMed database, the Excerpta Medica Database (EMBASE), and the Cumulative Index to Nursing and Allied Health Literature (CINAHL) database were searched for relevant studies published between 2006 and 2013 using a combination of keywords: "survivors," "survivorship," "care plans," "care planning," "treatment summaries," and "cancer." Articles were included if they 1) reported results from an empirical study, 2) included cancer survivors who were diagnosed at age ≥ 18 years, 3) related to SCP, and 4) were published in English. In total, 781 records were retrieved; 77 were identified as duplicates, and 665 were abstracts or presentations that did not relate to SCPs for adults or were not empirical, which left 42 articles for inclusion in this review. Studies regarding SCP fell into 3 categories: 1) content (n=14), 2) dissemination and implementation (n=14), and 3) survivor and provider outcomes (n=14). SCPs have been endorsed and are associated with improved knowledge, but SCP use remains sporadic. Only 4 studies were randomized controlled trials (RCTs) that avoided many biases associated with observational studies. Other limitations included cross-sectional or pre-SCP-post-SCP ("pre-post") designs, limited generalizability caused by a lack of sample diversity, and a lack of systematic testing of data-collection tools. The quantity and quality of SCP research are limited. SCPs have been endorsed, but evidence of improved outcomes associated with SCP is limited. Future research that addresses the methodological concerns of extant studies is needed regarding SCP use, content, and outcomes.

Assessing the feasibility of a virtual tumor board program: a case study.

Multidisciplinary tumor boards involve various providers (e.g., oncology physicians, nurses) in patient care. Although many community hospitals have local tumor boards that review all types of cases, numerous providers, particularly in rural areas and smaller institutions, still lack access to tumor boards specializing in a particular type of cancer (e.g., hematologic). Videoconferencing technology can connect providers across geographic locations and institutions; however, virtual tumor board (VTB) programs using this technology are uncommon. In this study, we evaluated the feasibility of a new VTB program at the University of North Carolina (UNC) Lineberger Comprehensive Cancer Center, which connects community-based clinicians to UNC tumor boards representing different cancer types. Methods included observations, interviews, and surveys. Our findings suggest that participants were generally satisfied with the VTB. Cases presented to the VTB were appropriate, sufficient information was available for discussion, and technology problems were uncommon. UNC clinicians viewed the VTB as a service to patients and colleagues and an opportunity for clinical trial recruitment. Community-based clinicians presenting at VTBs valued the discussion, even if it simply confirmed their original treatment plan or did not yield consensus recommendations. Barriers to participation for community-based clinicians included timing of the VTB and lack of reimbursement. To maximize benefits of the VTB, these barriers should be addressed, scheduling and preparation processes optimized, and appropriate measures for evaluating impact identified.