Physical Activity Intervention Characteristics and Effects on Behavioral and Health-Related Outcomes Among Adolescents and Young Adults Living with and Beyond Cancer: A Systematic Review.

Participation in physical activity (PA) during and after cancer treatment is safe and beneficial in the adolescent and young adult (AYA) cancer population. PA can positively impact health-related outcomes; however, participation remains low. This systematic review aims to describe PA intervention characteristics and outcomes in AYA survivors of cancer (AYASCa). This review followed Preferred Reporting Index for Systematic Reviews and Meta Analyses (PRISMA) guidelines and was registered with Prospero (CRD42022365661). PubMed, CINAHL, and Scopus databases were searched for randomized control trials (RCTs) and pre/post-test studies without a control group through December 31, 2022. Data included: participant demographics, PA intervention characteristics, and health-related outcomes. Studies were assessed using the National Institute of Health Critical Appraisal Tools, and findings were synthesized to identify common characteristics of PA interventions and outcomes. Twenty-three studies were included: 15 RCTs and 8 pre/post-test studies. Heterogeneity existed across design, sample demographics, intervention timing, and observed outcomes. The most common characteristics of PA interventions were supervision of PA, wearable device use, tailored/individualized PA prescriptions, and goal setting. PA interventions positively affected health-related outcomes, with 21 studies reporting statistically significant findings. Implementing personalized PA prescriptions, utilizing wearable devices, and incorporating goal setting as characteristics in PA interventions hold potential benefits for AYASCa, leading to improved outcomes. Still, additional research is needed to explore interventions that utilize these PA characteristics and determine which ones are most effective for AYASCa. By further investigating and identifying optimal PA characteristics, interventions can be better tailored to meet this population's specific needs and preferences, ultimately enhancing their overall well-being and recovery.

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.

The PhenX Toolkit: standard measurement resources for cancer outcomes and survivorship research.

This brief report introduces the Cancer Outcomes and Survivorship domain in the PhenX Toolkit (consensus measures for Phenotypes and eXposures), which includes 15 validated measurement protocols for cancer survivorship research that were recommended for inclusion in this publicly available resource. Developed with input from the scientific community, the domain provides researchers with well-established measurement protocols for evaluating physical and psychological effects, financial toxicity, and patient experiences with cancer care. The PhenX Toolkit, funded by the National Human Genome Research Institute since 2007, is an online resource that provides high-quality standard measurement protocols for a wide range of research areas (eg, smoking cessation, harm reduction and biomarkers, and social determinants of health). Use of the PhenX Cancer Survivorship Outcomes and Survivorship domain can simplify the selection of measurement protocols, data sharing, and comparisons across studies investigating the cancer survivorship experience.

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.

Patients With Advanced Cancer and Minor Children: An Exploratory Study of Health-Related Quality of Life and Satisfaction With Care.

OBJECTIVES: Patients with advanced cancer and minor children experience high rates of depression and anxiety. However, associations between parental status and other aspects of the patient experience are not well understood. This study compared patient-reported outcomes of patients with and without minor children. SAMPLE & SETTING: This was a retrospective analysis of 448 adults with stage III or IV solid tumors from a public research registry. METHODS & VARIABLES: Multiple linear regression models or modified Poisson regression models were fitted to evaluate differences in health-related quality of life, global health, and patient satisfaction scores between patients living with and without minors. RESULTS: One in five patients lived with minor children. They reported significantly worse health-related quality of life, global physical health, and global mental health. They also expressed lower satisfaction with time spent with their provider, communication, and financial aspects. IMPLICATIONS FOR NURSING: Patients with minor children may benefit from earlier identification and support for their psychosocial needs and concerns.

Using the PDSA Framework to Improve Rates of Clinical Tool Use in Outpatient Oncology Palliative Care Clinics.

The literature indicates that patients with cancer receiving palliative care experience high symptom burden resulting from disease processes and treatment side effects. However, these symptoms may not be sufficiently or consi.

Relationships among uncertainty, post-traumatic stress disorder symptoms, and quality of life in non-muscle-invasive bladder cancer survivors.

PURPOSE: The aim of this study was to examine relationships among uncertainty, PTSD symptoms (PTSS), and quality of life (QOL) in non-muscle-invasive bladder cancer (NMIBC) survivors. METHODS: Eligible NMIBC survivors were identified through the North Carolina Central Cancer Registry, and 398 survivors participated in a mailed survey that measured survivor's outcomes (uncertainty, PTSS, and QOL). Structural equation modeling was used to examine the mediating effect of uncertainty and PTSS on the association between personal characteristics and QOL in NMIBC survivors. RESULTS: NMIBC survivors experienced cancer-related uncertainty; higher uncertainty was associated with male, lower income, lack of cure, and lower cognition-ability. Uncertainty was significantly and negatively associated with QOL. In addition, PTSS completely mediated the effect of uncertainty on QOL, and higher PTSS had a strong association with poorer QOL. Additionally, comorbidities, cognition-general concerns, uncertainty, and PTSS had strong negative effects on QOL. CONCLUSION: This study has identified modifiable psychosocial factors which affect QOL in NMIBC survivors. The study findings can be used in the development of interventions to improve QOL for NMIBC survivors.

Workforce Caring for Cancer Survivors in the United States: Estimates and Projections of Use.

BACKGROUND: This study aims to quantify the extent and diversity of the cancer care workforce, beyond medical oncologists, to inform future demand because the number of cancer survivors is expected to grow in the United States. METHODS: Surveillance, Epidemiology, and End Results-Medicare data were used to evaluate health-care use of cancer survivors diagnosed between 2000 and 2014, enrolled in fee-for-service Medicare Parts A and B, and 65 years or older in 2008-2015. We calculated percentage of cancer survivors who saw each clinician specialty and their average annual number of visits in each phase of care. We projected the national number of individuals receiving care and number of annual visits by clinician specialty and phase of care through 2040. RESULTS: Cancer survivors had higher care use in the first year after diagnosis and last year of life phases. During the initial year after cancer diagnosis, most survivors were seen for cancer-related care by a medical oncologist (59.1%), primary care provider (55.9%), and/or other cancer-treating physicians (42.2%). The percentage of survivors with cancer-related visits to each specialty declined after the first year after diagnosis, plateauing after year 6-7. However, at 10 or more years after diagnosis, approximately 20% of cancer survivors had visits to medical oncologists and an average of 4 visits a year. CONCLUSIONS: Cancer survivors had higher care use in the first year after diagnosis and last year of life. High levels of care use across specialties in all phases of care have important implications for models of survivorship care coordination and workforce planning.

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.

Identifying Strategies for Robust Survivorship Program Implementation: A Qualitative Analysis of Cancer Programs.

PURPOSE: The Commission on Cancer seeks to promote robust survivorship programs among accredited cancer programs. In practice, cancer programs' survivorship programs range from cursory (eg, developing care plans without robust services) to robust (eg, facilitating follow-up care). To inform cancer programs' future efforts, in this study, we identified the implementation strategies that cancer programs used to achieve robust survivorship programs, distinguishing them from cursory programs. METHODS: We sampled 39 cancer programs across the United States with approaches to survivorship program implementation ranging from cursory to robust on the basis of LIVESTRONG survivorship care consensus elements. Within sampled cancer programs, we conducted in-depth semistructured interviews with a total of 42 health care professionals. We used template analysis to distinguish implementation strategies used in cancer programs with robust survivorship programs from strategies that yielded cursory survivorship programs. RESULTS: Cancer programs with robust survivorship programs established clear systems survivorship care and formal committees to improve the survivorship care processes. They sought buy-in from multiple stakeholders to leverage cancer program resources and defined clear roles with shared accountability among multidisciplinary groups. By contrast, cancer programs with cursory survivorship programs reported less consistency in survivorship care processes and lacked buy-in from key stakeholders. They had limited resources, faced persistent structural concerns, and had insufficient clarity in roles among team members. CONCLUSION: Accrediting bodies may consider incorporating the implementation strategies that robust survivorship programs have used as guidance for supporting cancer programs in operationalizing survivorship care and evaluating the use of these strategies during the accreditation and review process.

Large-scale North American cancer survivorship surveys: 2011-2019 update.

PURPOSE: There are gaps in our knowledge to provide quality cancer care to the growing numbers of survivors. Leveraging existing data to answer survivorship research questions is one approach to address these gaps. Therefore, the purpose of this paper is to replicate and expand a previous report of existing cancer survivorship survey data. METHODS: We conducted a trifold search strategy for relevant surveys and data sets to (1) determine the extent to which cancer survivors are being surveyed, (2) determine the topics being covered in these surveys, and (3) create a compendium of information about these surveys and data sets, so researchers can conduct additional analyses. RESULTS: Thirty-five surveys were identified and included in this report; most were longitudinal studies (71%) in adult cancer survivors (91%). The domains addressed in these surveys were general medical characteristics, medical conditions, costs, employment, symptoms and/or side effects, psychosocial factors and coping, perceived quality of care, and health behaviors. CONCLUSIONS: Existing data are available for researchers to explore new knowledge to enhance cancer survivorship quality care. This is an opportunity to fully utilize existing data to answer survivorship questions in a cost effective manner. IMPLICATIONS FOR CANCER SURVIVORS: Survivors should be encouraged to participate in research studies as these data can close the gap in our knowledge and care of this growing population.

Alcohol Consumption: Discussing Potential Risks for Informed Decisions in Breast Cancer Survivors.

BACKGROUND: Alcohol consumption is a known risk factor for breast cancer. Because breast cancer survivors are already at risk for recurrence, it is important to understand whether these survivors could benefit from survivor-specific recommendations for alcohol consumption. OBJECTIVES: The purpose of this article was to review primary research specific to alcohol and breast cancer survivors to see whether those who consume alcohol experience more adverse effects. METHODS: This literature review examined nine cohort studies specific to breast cancer survivors, alcohol consumption, and risks for breast cancer recurrence, breast cancer-specific mortality, and second primary breast cancers. FINDINGS: Current guideline recommendations of a safe limit of one drink per day or less may not protect breast cancer survivors from cancer- related adverse events. The authors recommend that breast cancer survivors be educated about the associated risks of alcohol consumption so that they can make informed decisions about usage.

The Head and Neck Survivorship Tool (HN-STAR) Trial (WF-1805CD): A protocol for a cluster-randomized, hybrid effectiveness-implementation, pragmatic trial to improve the follow-up care of head and neck cancer survivors.

Survivors of head and neck cancer (HNC) can have multiple health concerns. To facilitate their care, we developed and pilot-tested a clinical informatics intervention, HN-STAR. HN-STAR elicits concerns online from HNC survivors prior to a routine oncology clinic visit. HN-STAR then presents tailored evidence-based clinical recommendations as a clinical decision support tool to be used during the visit where the oncology clinician and survivor select symptom management strategies and other actions. This generates a survivorship care plan (SCP). Online elicitation of health concerns occurs 3, 6, and 9 months after the clinic visit, generating an updated SCP each time. HN-STAR encompasses important methods of improving survivorship care (e.g., needs assessment, tailored interventions, dissemination of guidelines) and will be evaluated in a pragmatic trial to maximize external validity. This hybrid type 1 implementation-effectiveness trial tests HN-STAR effectiveness while studying barriers and facilitators to implementation in community oncology practices within the National Cancer Institute Community Oncology Research Program. Effectiveness will be measured as differences in key survivorship outcomes between HNC participants who do and do not use HN-STAR over one year after the clinic visit. The primary endpoint is HNC-specific quality of life; other outcomes include patient-centered measures and receipt of guideline-concordant care. Implementation outcomes will be assessed of survivors, providers, and clinic stakeholders. The hybrid design will provide insight into a dose-response relationship between the extent of implementation fidelity and effectiveness outcomes, as well as how to incorporate HN-STAR into standard practice outside the research setting.

Trends in the proportion of second or later primaries among all newly diagnosed malignant cancers.

BACKGROUND: Improvements in cancer survival mean that an increasing number of survivors may live long enough beyond their initial cancer to be diagnosed with additional independent primary cancers. The proportion of newly diagnosed cancers that are second- or higher-order primaries and how this proportion has changed over the past several decades were examined. METHODS: Data from the Surveillance, Epidemiology, and End Results (SEER) program were used to identify incident malignant primaries diagnosed between 1975 and 2017. Using the SEER sequence number, the authors tabulated the proportion of all cancers in each calendar year that were second- or higher-order primaries. The average annual percent change (AAPC) was then calculated to assess how this proportion has changed over time. RESULTS: Analyses included nearly 4.9 million incident cancers diagnosed during 1975-2017. The proportion of all cancers that were second- or higher-order increased steadily from 9.77% during 1975-1984 to 21.03% during 2015-2017, reflecting an AAPC of 2.41% (95% CI, 2.16%-2.65%). In 2015-2017, second- or higher-order cancers were most prevalent among cancers of the bladder (28.79%), followed by lung and bronchus (28.07%), melanoma (27.88%), and leukemia (26.10%). The highest AAPCs over the study period were observed for melanoma (4.05%), leukemia (3.51%), and lung and bronchus (3.36%). CONCLUSIONS: The proportion of newly diagnosed cancers that are second- or higher-order has grown rapidly over the past several decades and currently exceeds 20%. Continued monitoring of second and later primaries will be critical for anticipating the future impact on cancer treatment and survivorship care.

Evidence Gaps in Cancer Survivorship Care: A Report From the 2019 National Cancer Institute Cancer Survivorship Workshop.

Today, there are more than 16.9 million cancer survivors in the United States; this number is projected to grow to 22.2 million by 2030. Although much progress has been made in describing cancer survivors' needs and in improving survivorship care since the seminal 2006 Institute of Medicine report "From Cancer Patient to Cancer Survivor: Lost in Transition," there is a need to identify evidence gaps and research priorities pertaining to cancer survivorship. Thus, in April 2019, the National Cancer Institute convened grant-funded extramural cancer survivorship researchers, representatives of professional organizations, cancer survivors, and advocates for a 1-day in-person meeting. At this meeting, and in a subsequent webinar aimed at soliciting input from the wider survivorship community, evidence gaps and ideas for next steps in the following 6 areas, identified from the 2006 Institute of Medicine report, were discussed: surveillance for recurrence and new cancers, management of long-term and late physical effects, management of long-term and late psychosocial effects, health promotion, care coordination, and financial hardship. Identified evidence gaps and next steps across the areas included the need to understand and address disparities among cancer survivors, to conduct longitudinal studies as well as longer-term (>5 years postdiagnosis) follow-up studies, to leverage existing data, and to incorporate implementation science strategies to translate findings into practice. Designing studies to address these broad evidence gaps, as well as those identified in each area, will expand our understanding of cancer survivors' diverse needs, ultimately leading to the development and delivery of more comprehensive evidence-based quality care.

A new proactive virtual resource center navigation model identifies patient risk factors to reduce barriers to cancer care during the COVID-19 pandemic.

PURPOSE: The COVID-19 pandemic has exacerbated cancer treatment disparities, including accessibility to resources. We describe the process and outcomes of a new proactive, virtual nurse-led, resource center navigation model enhanced by using volunteer patient navigators. Using known patient risk factors, this model provides interventions to reduce barriers to care, with an emphasis on non-English-speaking populations. METHODS: Patients were included if they (1) were in active cancer treatment and (2) had one or more known risk factors: distance from cancer hospital, needing complex care, 65 years or older, malignant hematological diagnosis, new treatment start, lives alone, non-English speaker, or a new hospital discharge. Nurse navigators triaged referrals to appropriate team members who identified and addressed barriers to care. RESULTS: The program engaged with 586 adult cancer patients over 1459 encounters. The most common risk factors included distance (59.7%), complex care (48.8%), and new treatment start (43.5%). The most common interventions were core education (69.4%), emotional support (61.2%), and education (35.7%). Statistical differences were found between Spanish-speaking (n = 118) and non-Spanish-speaking patients (n = 468). While Spanish-speaking patients had fewer risk factors (1.95 vs. 2.80, p ≤ .0001), they had nearly double the number of visits (4.27 vs. 2.04, p ≤ .0001) and 69% more interventions (8.26 vs. 4.90, p ≤ .0001). Many patients (42.7%) required follow-up visits. CONCLUSION: We successfully established a new navigation model for the resource center during the pandemic that identified and reduced barriers to care, particularly in the Spanish-speaking population.

Individualizing Surveillance Mammography for Older Patients After Treatment for Early-Stage Breast Cancer: Multidisciplinary Expert Panel and International Society of Geriatric Oncology Consensus Statement.

IMPORTANCE: There is currently no guidance on how to approach surveillance mammography for older breast cancer survivors, particularly when life expectancy is limited. OBJECTIVE: To develop expert consensus guidelines that facilitate tailored decision-making for routine surveillance mammography for breast cancer survivors 75 years or older. EVIDENCE: After a literature review of the risk of ipsilateral and contralateral breast cancer events among breast cancer survivors and the harms and benefits associated with mammography, a multidisciplinary expert panel was convened to develop consensus guidelines on surveillance mammography for breast cancer survivors 75 years or older. Using an iterative consensus-based approach, input from clinician focus groups, and critical review by the International Society for Geriatric Oncology, the guidelines were refined and finalized. FINDINGS: The literature review established a low risk for ipsilateral and contralateral breast cancer events in most older breast cancer survivors and summarized the benefits and harms associated with mammography. Draft mammography guidelines were iteratively evaluated by the expert panel and clinician focus groups, emphasizing a patient's risk for in-breast cancer events, age, life expectancy, and personal preferences. The final consensus guidelines recommend discontinuation of routine mammography for all breast cancer survivors when life expectancy is less than 5 years, including those with a history of high-risk cancers; consideration to discontinue mammography when life expectancy is 5 to 10 years; and continuation of mammography when life expectancy is more than 10 years. Individualized, shared decision-making is encouraged to optimally tailor recommendations after weighing the benefits and harms associated with surveillance mammography and patient preferences. The panel also recommends ongoing clinical breast examinations and diagnostic mammography to evaluate clinical findings and symptoms, with reassurance for patients that these practices will continue. CONCLUSIONS AND RELEVANCE: It is anticipated that these expert guidelines will enhance clinical practice by providing a framework for individualized discussions, facilitating shared decision-making regarding surveillance mammography for breast cancer survivors 75 years or older.

Positive psychological states and stress responses in caregivers of adults receiving an allogeneic bone marrow transplant: A study protocol.

AIMS: This protocol directs a study that aims to: (a) describe the caregiver's experience over 8-12 weeks after an index adult patient's allogeneic bone marrow transplant (BMT) for advanced cancer using a case-oriented approach and mixed methods, with qualitative methods in the foreground; and (b) explore networks of relationships among psycho-neurological symptoms, positive psychological states and caregiver health. DESIGN: Case-oriented longitudinal design using multiple data types and analytic approaches. METHODS: Data will be collected from 10-12 caregivers. The sample will be recruited from a large public hospital in the southeastern United States using maximum variation sampling (e.g., caregiver race/ethnicity, relationship to patient, age, education, and number of caregiving roles). Participants will be asked to complete weekly surveys, have their blood drawn bi-weekly and participate in an interview each month during the study period (~100 days). Aim 1 analysis will include directed content analysis and case-oriented visual analysis. Aim 2 analysis will include symptom network estimation of psycho-neurological symptoms, positive psychological states, and caregiver health. Institutional review board approval was obtained August 2018. DISCUSSION: Results will provide an in-depth description of caregivers' experiences in the 100 days after BMT. Findings will inform generation of hypotheses and identification of targets for interventions to improve caregiver's experiences after BMT. IMPACT: This in-depth multi-method longitudinal study to describe caregivers of adult patients receiving an allogeneic BMT is an essential step in understanding caregivers' complex responses to chronic stress and the role of positive psychological states. The results from this study will inform future research on chronic stress processes, intense caregiving, and intervention development.