Publications by authors named "Deborah K Mayer"

179 Publications

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

JCO Oncol Pract 2021 Oct 4:OP2100357. Epub 2021 Oct 4.

Wake Forest University School of Medicine, Winston-Salem, NC.

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.
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http://dx.doi.org/10.1200/OP.21.00357DOI Listing
October 2021

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.

Contemp Clin Trials 2021 08 21;107:106448. Epub 2021 May 21.

Wake Forest School of Medicine, Department of Social Sciences & Health Policy, Medical Center Boulevard, Winston-Salem, NC 27157, USA.

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.
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http://dx.doi.org/10.1016/j.cct.2021.106448DOI Listing
August 2021

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

J Clin Nurs 2021 Apr 29. Epub 2021 Apr 29.

School of Nursing, The University of North Carolina, Chapel Hill, NC, USA.

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.
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http://dx.doi.org/10.1111/jocn.15817DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8242616PMC
April 2021

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

Cancer 2021 Aug 6;127(15):2736-2742. Epub 2021 Apr 6.

Department of Epidemiology, University of North Carolina, Chapel Hill, North Carolina.

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.
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http://dx.doi.org/10.1002/cncr.33558DOI Listing
August 2021

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

Support Care Cancer 2021 Oct 31;29(10):6069-6077. Epub 2021 Mar 31.

Lineberger Comprehensive Cancer Center, North Carolina Cancer Hospital, Chapel Hill, NC, USA.

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.
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http://dx.doi.org/10.1007/s00520-021-06147-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8009761PMC
October 2021

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

J Natl Cancer Inst 2021 Sep;113(9):1136-1142

School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.

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.
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http://dx.doi.org/10.1093/jnci/djab049DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8418428PMC
September 2021

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

JAMA Oncol 2021 Apr;7(4):609-615

Department of Health Care Policy, Harvard Medical School, Boston, Massachusetts.

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.
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http://dx.doi.org/10.1001/jamaoncol.2020.7582DOI Listing
April 2021

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

J Adv Nurs 2021 Apr 18;77(4):2073-2084. Epub 2021 Jan 18.

Lineberger Comprehensive Cancer Center, University of North Carolina, Chapel Hill, North Carolina, USA.

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.
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http://dx.doi.org/10.1111/jan.14742DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8284914PMC
April 2021

Post-traumatic stress disorder symptoms in non-muscle-invasive bladder cancer survivors: A population-based study.

Urol Oncol 2021 04 8;39(4):237.e7-237.e14. Epub 2020 Dec 8.

School of Nursing, Duke University, Durham, NC.

Objective: This cross-sectional study examined the prevalence of post-traumatic stress disorder (PTSD) and identified the predictive factors associated with PTSD symptoms in a population of non-muscle-invasive bladder cancer (NMIBC) survivors.

Methods: A random sample of 2,000 NMIBC survivors, identified through the North Carolina Central Cancer Registry, were sent postal mail survey. PTSD symptoms were measured using the PTSD Checklist for DSM-5 (PCL-5). Descriptive statistics and hierarchical multiple linear regression were used to examine the prevalence of PTSD and to identify the factors associated with PTSD.

Results: A total of 376 participants were included in the analysis. The average PCL-5 score was 7.1 (standard deviation [SD] = 10.9, range: 0-66), where higher scores represent higher levels of PTSD symptoms. The prevalence of the provisional PTSD diagnosis was 5.3% or 6.9% (after adjusting for nonresponse). In addition, 28.7% of participants met criteria for at least one PTSD symptom cluster. After controlling for other variables, participants who were younger, had active disease or unsure of status, had more comorbidities, had lower social support, and had higher cognitive concerns reported significantly higher PTSD symptoms.

Conclusion: More than one-fourth of NMIBC survivors had PTSD symptoms. Thus, healthcare providers should assess PTSD symptoms and provide supportive care for NMIBC survivors in the survivorship phase of care.
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http://dx.doi.org/10.1016/j.urolonc.2020.11.033DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7956138PMC
April 2021

Developing personalized survivorship care pathways in the United States: Existing resources and remaining challenges.

Cancer 2021 Apr 1;127(7):997-1004. Epub 2020 Dec 1.

Department of Health Policy and Management, Gillings School of Global Public Health, University of North Carolina, Chapel Hill, North Carolina.

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http://dx.doi.org/10.1002/cncr.33355DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8284102PMC
April 2021

Follow-Up Care for Breast and Colorectal Cancer Across the Globe: Survey Findings From 27 Countries.

JCO Glob Oncol 2020 09;6:1394-1411

Peking University Cancer Hospital, Beijing, People's Republic of China.

Purpose: The purpose of this study was to describe follow-up care for breast and colorectal cancer survivors in countries with varying levels of resources and highlight challenges regarding posttreatment survivorship care.

Methods: We surveyed one key stakeholder from each of 27 countries with expertise in survivorship care on questions including the components/structure of follow-up care, delivery of treatment summaries and survivorship care plans, and involvement of primary care in survivorship. Descriptive analyses were performed to characterize results across countries and variations between the WHO income categories (low, middle, high). We also performed a qualitative content analysis of narratives related to survivorship care challenges to identify major themes.

Results: Seven low- or /lower-middle-income countries (LIC/LMIC), seven upper-middle-income countries (UMIC), and 13 high-income countries (HICs) were included in this study. Results indicate that 44.4% of countries with a National Cancer Control Plan currently address survivorship care. Additional findings indicate that HICs use guidelines more often than those in LICs/LMICs and UMICs. There was great variation among countries regardless of income level. Common challenges include issues with workforce, communication and care coordination, distance/transportation issues, psychosocial support, and lack of focus on follow-up care.

Conclusion: This information can guide researchers, providers, and policy makers in efforts to improve the quality of survivorship care on a national and global basis. As the number of cancer survivors increases globally, countries will need to prioritize their long-term needs. Future efforts should focus on efforts to bridge oncology and primary care, building international partnerships, and implementation of guidelines.
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http://dx.doi.org/10.1200/GO.20.00180DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7529533PMC
September 2020

Healthy Behaviors: Prevalence of Uptake Among Cancer Survivors.

Clin J Oncol Nurs 2020 10;24(5):19-29

UNC Lineberger Comprehensive Cancer Center.

Background: Although most cancer survivors adhere to recommendations to refrain from tobacco and minimize alcohol use, survivors of certain cancers are not meeting these recommendations. In addition, most cancer survivors do not achieve optimal recommendations for diet and physical activity, further decreasing survivor health and quality of life. Sun protective and sleep behaviors also tend to be suboptimal among survivors. Uptake of age-appropriate vaccinations is variable among survivors.

Objectives: The purpose of this article is to review the prevalence of healthy behavior uptake among cancer survivors and provide nurses with an overview of effective interventions, strategies, and resources to help patients improve these behaviors.

Methods: An expert panel was convened to conduct an integrative review and synthesis on the state of the science of healthy behavior uptake among cancer survivors.

Findings: Not meeting recommendations for healthy lifestyle behaviors increases the risk of second cancers and mortality and decreases overall health and quality of life. Healthy lifestyle behaviors can contribute to improved function, quality of life, and overall survival for cancer survivors. Nurses can help survivors to understand and improve their behaviors.
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http://dx.doi.org/10.1188/20.CJON.S2.19-29DOI Listing
October 2020

Building Capacity in Cancer Nurses to Deliver Self-management Support: A Call for Action Paper.

Cancer Nurs 2020 Sep/Oct;43(5):341-342

Editorial Board Member, Cancer Nursing Princess Alexandra Hospital, Metro South Health, Queensland, Australia, and School of Nursing, Queensland University of Technology, Brisbane, Australia School of Nursing, University of North Carolina, and UNC Lineberger Comprehensive Cancer Center, Chapel Hill, NC Flinders Medical Centre and Flinders University, Adelaide, Australia College of Nursing, University of Central Florida, Orlando, FL Department of Nursing, Cyprus University of Technology, and Department of Nursing, University of Turku, Finland School of Nursing, Queensland University of Technology, Brisbane, Australia Department of Supportive Care, Princess Margaret Cancer Research Center, and Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Ontario, Canada.

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http://dx.doi.org/10.1097/NCC.0000000000000855DOI Listing
August 2020

Enhancing survivorship care planning for patients with localized prostate cancer using a couple-focused web-based, mHealth program: the results of a pilot feasibility study.

J Cancer Surviv 2021 02 17;15(1):99-108. Epub 2020 Jul 17.

School of Nursing, University of North Carolina (UNC), Carrington Hall, Chapel Hill, NC, 27599-7460, USA.

Purpose: To examine the feasibility of an enhanced survivorship care plan (ESCP) that integrated the web-based program Patient Education Resources for Couples (PERC) into a standardized survivorship care plan (SCP) and estimated the outcomes of ESCPs versus SCPs.

Methods: In this randomized pilot trial, localized prostate cancer (PC) patients and partners (i.e., couple) were randomly assigned to ESCP that contained a link to PERC or to SCP that contained a link to general PC information on the National Cancer Institute website. Couples completed assessments measuring quality of life (QOL), appraisal of symptoms, and coping resources at baseline (T1) and 4-6 months later (T2). We examined feasibility (e.g., recruitment and retention) using descriptive statistics. Linear mixed models examined changes in couples' outcomes over time and Poisson regression examined differences in patient healthcare utilization.

Results: Sixty-two couples completed T1 surveys (recruitment rate 41.6%) and were randomly assigned to receive ESCP (n = 31) or SCP (n = 31). Twenty-eight (ESCP) and 25 (SCP) couples completed T2 surveys (retention rates = 90.3% vs. 80.7%). ESCP participants (70%) reviewed webpages consistent with patients' symptoms. ESCP patients reported greater program satisfaction (p = 0.02) and better urinary symptom scores (p < 0.01) than SCP patients.

Conclusions: Delivering ESCPs that embed a web-link to a couple-focused, tailored program is feasible and can potentially improve patient outcomes. The promising results need to be validated in a larger definitive trial using a diverse sample.

Implications For Cancer Survivors: SCPs, enhanced using a web-based intervention (e.g., PERC), may help PC cancer survivors better manage their urinary symptoms.

Trial Registration: ClinicalTrials.gov identifier: NCT04350788.
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http://dx.doi.org/10.1007/s11764-020-00914-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7855003PMC
February 2021

Mending Disconnects in Cancer Care: Setting an Agenda for Research, Practice, and Policy.

JCO Clin Cancer Inform 2020 06;4:539-546

American Cancer Society, Washington, DC.

Cancer in the United States accounts for $600 billion in health care costs, lost work time and productivity, reduced quality of life, and premature mortality. The future of oncology delivery must mend disconnects to equitably improve patient outcomes while constraining costs and burden on patients, caregivers, and care teams. Embedding learning health systems into oncology can connect care, engaging patients and providers in fully interoperable data systems that remotely monitor patients; generate predictive and prescriptive analytics to facilitate appropriate, timely referrals; and extend the reach of clinicians beyond clinic walls. Incorporating functional learning systems into the future of oncology and follow-up care requires coordinated national attention to 4 synergistic strategies: (1) galvanize and shape public discourse to develop and adopt these systems, (2) demonstrate their value, (3) test and evaluate their use, and (4) reform policy to incentivize and regulate their use.
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http://dx.doi.org/10.1200/CCI.20.00046DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7328120PMC
June 2020

Management of Cancer and Health After the Clinic Visit: A Call to Action for Self-Management in Cancer Care.

J Natl Cancer Inst 2021 May;113(5):523-531

Department of Medical Oncology, & Flinders University, Bedford Park, South Australia and members of the Global Partners for Self-Management in Cancer (GPS).

Individuals with cancer and their families assume responsibility for management of cancer as an acute and chronic disease. Yet, cancer lags other chronic diseases in its provision of proactive self-management support in routine, everyday care leaving this population vulnerable to worse health status, long-term disability, and poorer survival. Enabling cancer patients to manage the medical and emotional consequences and lifestyle and work changes due to cancer and treatment is essential to optimizing health and recovery across the continuum of cancer. In this paper, the Global Partners on Self-Management in Cancer puts forth six priority areas for action: Action 1: Prepare patients and survivors for active involvement in care; Action 2: Shift the care culture to support patients as partners in cocreating health and embed self-management support in everyday health-care provider practices and in care pathways; Action 3: Prepare the workforce in the knowledge and skills necessary to enable patients in effective self-management and reach consensus on core curricula; Action 4: Establish and reach consensus on a patient-reported outcome system for measuring the effects of self-management support and performance accountability; Action 5: Advance the evidence and stimulate research on self-management and self-management support in cancer populations; Action 6: Expand reach and access to self-management support programs across care sectors and tailored to diversity of need and stimulation of research to advance knowledge. It is time for a revolution to better integrate self-management support as part of high-quality, person-centered support and precision medicine in cancer care to optimize health outcomes, accelerate recovery, and possibly improve survival.
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http://dx.doi.org/10.1093/jnci/djaa083DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8096367PMC
May 2021

HPV Knowledge and Education: Report on Vaccination Data From a National Health Trends Survey.

Clin J Oncol Nurs 2020 06;24(3):257-263

UNC Lineberger Comprehensive Cancer Center.

Background: Human papillomavirus (HPV) is the most common sexually transmitted infection worldwide. Several government agencies are working to achieve the Healthy People 2020 goal of reaching 80% HPV vaccination rates for adolescent males and females in the United States.

Objectives: The aim of this article is to identify trends in the knowledge of the U.S. population as related to the understanding of HPV, areas for nurse-patient education, and methods used in other countries that have achieved 80% HPV vaccination rates.

Methods: A cross-sectional analysis of Health Information National Trends Survey questions related to HPV infections and the HPV vaccine from 2005-2018 was completed to determine the knowledge of HPV infections and the HPV vaccine.

Findings: There has been little to no growth in HPV knowledge in the general population in the United States from 2005 to 2018. Additional research is needed to address the ongoing barriers to increasing knowledge of HPV vaccination.
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http://dx.doi.org/10.1188/20.CJON.257-263DOI Listing
June 2020

Research Agenda of the Oncology Nursing Society: 2019-2022.

Oncol Nurs Forum 2019 11;46(6):654-669

Dana-Farber Cancer Institute.

Problem Statement: To define the Oncology Nursing Society Research Agenda for 2019-2022.

Design: Multimethod, consensus-building approach by members of the Research Agenda Project Team.

Data Sources: Expert opinion, literature review, surveys, interviews, focus groups, town hall, and review of research priorities from other cancer care organizations and funding agencies.

Analysis: Content analysis and descriptive statistics were used to synthesize research priority themes that emerged.

Findings: Three priority areas for scientific development were identified.

Implications For Nursing: The Research Agenda can be used to focus oncology nurses' research, scholarship, leadership, and health policy efforts to advance quality cancer care, inform research funding priorities, and align initiatives and resources across the ONS enterprise.
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http://dx.doi.org/10.1188/19.ONF.654-669DOI Listing
November 2019

Health-related quality of life among non-muscle-invasive bladder cancer survivors: a population-based study.

BJU Int 2020 01 25;125(1):38-48. Epub 2019 Sep 25.

Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.

Objective: To examine the effect of non-muscle-invasive bladder cancer (NMIBC) diagnosis and treatment on survivors' quality of life (QoL).

Patients And Methods: Of the 5979 patients with NMIBC diagnosed between 2010 and 2014 in North Carolina, 2000 patients were randomly selected to be invited to enroll in this cross-sectional study. Data were collected by postal mail survey. The European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core (QLQ-C30) and the NMIBC-specific module were included in the survey to measure QoL. Descriptive statistics, t-tests, anova, and Pearson's correlation were used to describe demographics and to assess how QoL varied by sex, cancer stage, time since diagnosis, and treatment.

Results: A total of 398 survivors returned questionnaires (response rate: 23.6%). The mean QoL score for QLQ-C30 (range 0-100, higher = better QoL in all domains but symptoms) for global health status was 73.6, function domain scores ranged from 83.9 to 86.5, and scores for the top five symptoms (insomnia, fatigue, dyspnoea, pain, and financial difficulties) ranged from 14.1 to 24.3. The lowest NMIBC-specific QoL domain was sexual issues including sexual function, enjoyment, problems, and intimacy. Women had worse bowel problems, sexual function, and sexual enjoyment than men but better sexual intimacy and fewer concerns about contaminating their partner. Stage Ta had the highest global health status, followed by T1 and Tis. QoL did not vary by time since diagnosis except for sexual function. The cystectomy group (n = 21) had worse QoL in sexual function, discomfort with sexual intimacy, sexual enjoyment, and male sexual problems than the non-cystectomy group (n = 336).

Conclusion: Survivors of NMIBC face a unique burden associated with their diagnosis and the often-lifelong surveillance and treatment regimens. The finding has important implications for the design of tailored supportive care interventions to improve QoL for NMIBC survivors.
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http://dx.doi.org/10.1111/bju.14888DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7137766PMC
January 2020

What works in smoking cessation interventions for cancer survivors? A meta-analysis.

Health Psychol 2019 Oct 1;38(10):855-865. Epub 2019 Jul 1.

Department of Health Behavior, University of North Carolina at Chapel Hill.

Objective: We conducted a meta-analysis of randomized controlled trials designed to promote smoking cessation among cancer survivors to (a) assess how effective interventions are at increasing quit rates, and (b) determine which intervention strategies are associated with effect sizes.

Methods: Out of 10,848 records that were located using computerized searches and informal sources, 21 interventions met the inclusion criteria for the review. We developed a bespoke taxonomy of 36 categories of techniques designed to change smoking behavior, and coded sample, intervention, and methodological characteristics. Random effects meta-analysis and metaregressions were conducted.

Results: The sample-weighted average effect size for smoking cessation was d+ = .030, and was not significantly different from zero (95%CI = -.042 to .101). Effect sizes exhibited both publication bias and small sample bias. Metaregressions indicated that, out of the many potential moderators that were tested, just a single intervention feature was associated with effect sizes. Interventions delivered solely by nurses exhibited larger effects compared to interventions from other sources.

Conclusion: The present review indicates that current smoking cessation interventions for cancer survivors are ineffective. High-quality and effective interventions are needed. We offer suggestions regarding promising intervention strategies. (PsycINFO Database Record (c) 2019 APA, all rights reserved).
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http://dx.doi.org/10.1037/hea0000757DOI Listing
October 2019

Response to Jefford.

J Natl Cancer Inst 2020 03;112(3):322-323

UNC Lineberger Comprehensive Cancer Center and School of Nursing, University of North Carolina-Chapel Hill, NC.

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http://dx.doi.org/10.1093/jnci/djz129DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7073931PMC
March 2020

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

Oncol Nurs Forum 2019 07;46(4):E107-E118

University of North Carolina.

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.
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http://dx.doi.org/10.1188/19.ONF.E107-E118DOI Listing
July 2019

Building Personalized Cancer Follow-up Care Pathways in the United States: Lessons Learned From Implementation in England, Northern Ireland, and Australia.

Am Soc Clin Oncol Educ Book 2019 Jan 17;39:625-639. Epub 2019 May 17.

5 School of Nursing and Linegerger Comprehensive Cancer Center, The University of North Carolina, Chapel Hill, Chapel Hill, NC and National Cancer Institute, Rockville, MD.

There is a global need to transform cancer follow-up care to address the needs of cancer survivors while efficiently using the health care system to limit the effects of provider shortages, gaps in provider knowledge, and already overburdened clinics; improve the mental health of clinicians; and limit costs to health care systems and patients. England, Northern Ireland, and Australia are implementing an approach that triages patients to personalized follow-up care pathways depending on the types and levels of resources needed for patients' long-term care that has been shown to meet patients' needs, more efficiently use the health care system, and reduce costs. This article discusses lessons learned from these implementation efforts, identifying the necessary components of these care models and barriers and facilitators to implementation of this care. Specifically, the United States and other countries looking to transform follow-up care should consider how to develop six key principles of this care: algorithms to triage patients to pathways; methods to assess patient issues to guide care; remote monitoring systems; methods to support patients in self-management; ways to coordinate care and information exchange between oncology, primary care, specialists, and patients; and methods to engage all stakeholders and secure their ongoing buy-in. Next steps to advance this work in the United States are discussed.
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http://dx.doi.org/10.1200/EDBK_238267DOI Listing
January 2019

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

J Natl Cancer Inst 2019 11;111(11):1120-1130

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.
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http://dx.doi.org/10.1093/jnci/djz089DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6855988PMC
November 2019

Promoting physical activity among cancer survivors: Meta-analysis and meta-CART analysis of randomized controlled trials.

Health Psychol 2019 Jun 11;38(6):467-482. Epub 2019 Apr 11.

School of Nursing.

Objective: We conducted a meta-analysis of physical activity interventions among cancer survivors to (a) quantify the magnitude of intervention effects on physical activity and (b) determine what combination of intervention strategies maximizes behavior change.

Method: Out of 32,626 records that were located using computerized searches, 138 independent tests ( = 13,050) met the inclusion criteria for the review. We developed a bespoke taxonomy of 34 categories of techniques designed to promote psychological change, and categorized sample, intervention, and methodological characteristics. Random effects meta-analysis and metaregressions were conducted; effect size data were also submitted to meta-analysis with classification and regression trees (i.e., meta-CART).

Results: The sample-weighted average effect size for physical activity interventions was = .35, equivalent to an increase of 1,149 steps per day. Effect sizes exhibited both publication bias and small sample bias but remained significantly different from zero, albeit of smaller magnitude ( ≥ .20), after correction for bias. Meta-CART indicated that the major difference in effectiveness was attributable to supervised versus unsupervised programs ( = .49 vs. .26). Greater contact time was associated with larger effects in supervised programs. For unsupervised programs, establishing outcome expectations, greater contact time, and targeting overweight or sedentary participants each predicted greater program effectiveness, whereas prompting barrier identification and providing workbooks were associated with smaller effect sizes.

Conclusion: The present review indicates that interventions have a small but significant effect on physical activity among cancer survivors and offers insights into how the effectiveness of future interventions might be improved. (PsycINFO Database Record (c) 2019 APA, all rights reserved).
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http://dx.doi.org/10.1037/hea0000712DOI Listing
June 2019

Implementing personalized pathways for cancer follow-up care in the United States: Proceedings from an American Cancer Society-American Society of Clinical Oncology summit.

CA Cancer J Clin 2019 05 8;69(3):234-247. Epub 2019 Mar 8.

Associate Professor, Department of Pediatrics, and Medical Director, Childhood Cancer Survivor Center, The University of Chicago Comer Children's Hospital, Chicago, IL.

A new approach to cancer follow-up care is necessary to meet the needs of cancer survivors while dealing with increasing volume and provider shortages, knowledge gaps, and costs to both health care systems and patients. An approach that triages patients to personalized follow-up care pathways, depending on the type(s) and level(s) of resources needed for patients' long-term care, is in use in the United Kingdom and other countries and has been shown to meet patients' needs, more efficiently use the health care system, and reduce costs. Recognizing that testing and implementing a similar personalized approach to cancer follow-up care in the United States will require a multipronged strategy, the American Cancer Society and the American Society of Clinical Oncology convened a summit in January 2018 to identify the needed steps to move this work from concept to implementation. The summit identified 4 key strategies going forward: 1) developing a candidate model (or models) of care delivery; 2) building the case for implementation by conducting studies modeling the effects of personalized pathways of follow-up care on patient outcomes, workforce and health care resources, and utilization and costs; 3) creating consensus-based guidelines to guide the delivery of personalized care pathways; and 4) identifying and filling research gaps to develop and implement needed care changes. While these national strategies are pursued, oncology and primary care providers can lay the groundwork for implementation by assessing their patients' risk of recurrence and the chronic and late effects of cancer as well as other health care needs and resources available for care and by considering triaging patients accordingly, referring patients to appropriate specialized survivorship clinics as these are developed, helping to support patients who are capable of self-managing their health, setting expectations with patients from diagnosis onward for the need for follow-up in primary care and/or a survivorship clinic, and improving coordination of care between oncology and primary care.
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http://dx.doi.org/10.3322/caac.21558DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7376887PMC
May 2019

Personalized Risk-Stratified Cancer Follow-Up Care: Its Potential for Healthier Survivors, Happier Clinicians, and Lower Costs.

J Natl Cancer Inst 2019 05;111(5):442-448

American Cancer Society, Inc.

The growth in the number of cancer survivors in the face of projected health-care workforce shortages will challenge the US health-care system in delivering follow-up care. New methods of delivering follow-up care are needed that address the ongoing needs of survivors without overwhelming already overflowing oncology clinics or shuttling all follow-up patients to primary care providers. One potential solution, proposed for over a decade, lies in adopting a personalized approach to care in which survivors are triaged or risk-stratified to distinct care pathways based on the complexity of their needs and the types of providers their care requires. Although other approaches may emerge, we advocate for development, testing, and implementation of a risk-stratified approach as a means to address this problem. This commentary reviews what is needed to shift to a risk-stratified approach in delivering survivorship care in the United States.
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http://dx.doi.org/10.1093/jnci/djy232DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6804411PMC
May 2019

Dual cigarette and e-cigarette use in cancer survivors: an analysis using Population Assessment of Tobacco Health (PATH) data.

J Cancer Surviv 2019 04 24;13(2):161-170. Epub 2019 Jan 24.

Department of Health Behavior, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, USA.

Purpose: Cancer survivors who smoke cigarettes face health risks from continued smoking. Some smokers use e-cigarettes to reduce combustible cigarette use, but research on whether cancer survivors do the same is limited. Research is needed to understand whether smokers who are cancer survivors use e-cigarettes at higher rates than smokers never diagnosed with cancer, to inform provider-patient discussions about e-cigarettes.

Methods: Using cross-sectional data from current cigarette smokers in Wave 1 (2013-2014) of the Population Assessment of Tobacco Health (PATH) study, we compared cancer survivors (n = 433) and those without a prior cancer diagnosis (n = 10,872) on e-cigarette use and reasons for use.

Results: Among smokers, 59.4% of cancer survivors and 63.2% of those without a cancer diagnosis had ever used e-cigarettes, and nearly one-quarter of both groups (23.1% and 22.3%, respectively) reported being current users. Multivariate results, however, suggest that cancer survivors might be more likely to be ever (OR = 1.28; p = .05) or current (OR = 1.25; p = .06) e-cigarette users compared to those never diagnosed, although results were marginally significant. The majority of both groups (> 71%) reported using e-cigarettes for perceived health-related reasons-including smoking reduction.

Conclusions: Our study found that among smokers, cancer survivors were using e-cigarettes at similar rates as never-diagnosed smokers and both groups used e-cigarettes largely for perceived health-related reasons.

Implications For Cancer Survivors: Clinicians who treat cancer survivors may need to routinely ask their patients who smoke about e-cigarette use and address the limited research on the efficacy of e-cigarettes as a cessation aid as compared to other evidence-based options.
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http://dx.doi.org/10.1007/s11764-019-0735-yDOI Listing
April 2019

The impact of psychosocial characteristics in predicting smoking cessation in long-term cancer survivors: A time-to-event analysis.

Psychooncology 2018 10 4;27(10):2458-2465. Epub 2018 Sep 4.

Department of Health Behavior, Gillings School of Global Public Health, UNC Chapel Hill, Chapel Hill, North Carolina, USA.

Objective: Smoking poses significant health risks to cancer survivors. Cancer survivorship may heighten psychological distress and reduce social support and health-related quality of life (HRQOL) for years after diagnosis, which could inhibit long-term successful smoking cessation. Understanding longitudinal associations between these psychosocial characteristics and successful cessation could help clinicians tailor cessation interventions for their patients.

Methods: Time-to-event analyses using data from the American Cancer Society Study of Cancer Survivors-I (SCS-I)-a longitudinal nationwide study-examined the relationship of psychosocial characteristics with cessation likelihood and amount of time from diagnosis to quitting in cancer survivors diagnosed 7 to 10 years prior.

Results: Cancer survivors with high physical HRQOL were more likely to quit smoking within 10 years from cancer diagnosis than survivors with low physical HRQOL, controlling for cancer type and number of comorbid conditions at baseline (HR = 1.96; 95% CI: 1.10-2.70; P = .02). Survivors with high physical HRQOL also took less time to quit than survivors with low physical HRQOL. Survivors of tobacco-related cancers with low physical HRQOL were the least likely group to quit. No significant relationships between other psychosocial predictors and cessation outcomes were observed.

Conclusions: Smoking cessation programs are needed for all cancer survivors who smoke, but survivors with low physical HRQOL 1 year after diagnosis may need more intensive long-term smoking cessation interventions with multiple check-in points after smoking relapses. Cessation interventions that include strategies to mitigate physical symptoms in those with poor physical HRQOL deserve consideration in research and practice.
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http://dx.doi.org/10.1002/pon.4851DOI Listing
October 2018

Strategies for Successful Survivorship Care Plan Implementation: Results From a Qualitative Study.

J Oncol Pract 2018 08 13;14(8):e462-e483. Epub 2018 Jul 13.

Gillings School of Global Public Health, University of North Carolina at Chapel Hill; Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, Chapel Hill; and RTI International, Research Triangle Park, NC.

Introduction: Care for US cancer survivors is often fragmented, contributing to poor health outcomes. Care and outcomes may improve when survivors and follow-up care providers receive survivorship care plans (SCPs), written documents containing information regarding cancer diagnosis, treatment, surveillance plans, and health promotion. However, implementing SCPs is challenging. As such, we sought to identify strategies for successfully implementing SCPs.

Methods: We measured SCP implementation using performance data from cancer programs participating in the American Society of Clinical Oncology Quality Oncology Practice Initiative, an oncologist-led quality assessment and improvement program. We used semistructured interviews with cancer program employees (eg, physicians) to identify strategies for successfully implementing SCPs by comparing approaches in cancer programs that, according to Quality Oncology Practice Initiative performance indicators, developed and delivered SCPs to a relatively small proportion of eligible survivors and their follow-up care providers (ie, low performers; n = 6 participants in five programs) with approaches among programs with better performance (ie, moderate performers; n = 15 participants in nine programs).

Results: Ten of 14 cancer programs developed SCPs for ≥ 50% of eligible survivors; two of 14 delivered SCPs to any survivors; and eight of 14 delivered SCPs to ≥ 25% of follow-up care providers. We found that moderate performers proactively addressed SCP requirements, leveraged requirements to improve survivorship care, set internal targets, automated implementation, had active leaders and champions, and tasked appropriate employees with SCP implementation.

Conclusion: SCP implementation remains challenging. We identified strategies for successfully implementing SCPs. Future research should examine how cancer programs have achieved these strategies; findings could contribute to an understanding of the changes needed to implement comprehensive survivorship care.
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http://dx.doi.org/10.1200/JOP.17.00054DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6804914PMC
August 2018
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