Internal resources among informal caregivers: trajectories and associations with well-being.

PURPOSE: The experiences, skills, and internal resources that informal caregivers bring into their role may play a critical part in their mental health and well-being. This study examined how caregiver internal resources changed over a 10 year period, and how this was related to caregivers' well-being. METHODS: Data are from the Midlife in the United States (MIDUS) study, a national sample of adults, at two time points: 1995-1996 (T1) and 2004-2006 (T2). We identified subjects who reported being a caregiver at T2 and starting care after T1 (mean age = 56; 65% female). We examined internal resources: sense of control (personal mastery); primary and secondary control strategies (persistence in goal striving, positive reappraisal, and lowering expectations); and social support seeking, and psychological and subjective well-being. We evaluated how internal resources changed over time, and how these trajectories were associated with well-being at T2 using multivariable linear regressions. RESULTS: Most caregivers had stable levels of internal resources (between 4 and 13% showed an increase or decrease). Caregivers with increasing or high-stable levels of personal mastery had significantly better well-being scores on 6 out of 8 subscales compared with low-stable levels [effect sizes (ES) between 0.39 and 0.79]. Increasing persistence was associated with better personal growth and environmental mastery (ES = 0.96 and 0.91), and increasing and high-stable positive reappraisals were associated with better affect (ES = 0.63 and 0.48) compared with low-stable levels. Lowering aspirations and support seeking were not associated with well-being outcomes. CONCLUSIONS: Practices or interventions that support or improve internal resources could potentially improve caregiver well-being.

Primary care for cancer survivors: a review of national institutes of health-funded grants 2017-2022.

PURPOSE: To describe the characteristics of National Institutes of Health (NIH) grants on primary care cancer research in cancer survivorship funded over the past 5 years. METHODS: Research project grants (RPG) funded during Fiscal Year (FY) 2017 to 2022 focused on cancer survivorship were identified using a text mining algorithm of words from the NIH Research, Condition, and Disease Categorization (RCDC) thesaurus with survivorship-relevant terms. Grants were then reviewed and double-coded to identify those that were carried out in a primary care setting, targeted primary care providers, or had primary care providers in the study team. RESULTS: A total of 24 grants were identified; 23 were funded by the National Cancer Institute and one was funded by the National Institute on Minority Health and Health Disparities. The majority were funded under the R01 mechanism (70.8%) and led by established investigators. Most were interventional design (91.7%), including both survivors and providers (79.2%), and focused care coordination or healthcare utilization (91.7%). CONCLUSIONS: Grants focused on primary care cancer survivorship are uncommon in the NIH portfolio. IMPLICATIONS FOR SURVIVORS: For the over 18 million cancer survivors in the USA, being cared for in a primary care setting is common. Yet, NIH-funded research on primary care cancer survivorship is sparse.

Advancing health equity in cancer survivorship research: National institutes of health 2017-2022 portfolio review.

BACKGROUND: Communities and researchers have called for a paradigm shift from describing health disparities to a health equity research agenda that addresses structural drivers. Therefore, we examined whether the cancer survivorship research portfolio has made this shift. METHODS: We identified grants focused on populations experiencing health disparities from the National Institutes of Health (NIH) Cancer Survivorship Research Portfolio (N = 724), Fiscal Years 2017-2022. Grant characteristics were abstracted, drivers of health disparities were mapped onto the levels and domains of influence, and opportunities for future research were identified. RESULTS: A total of 147 survivorship grants focused on health disparities were identified, of which 73.5% of grants focused on survivors from racial and ethnic minoritized groups, 25.9% living in rural areas, 24.5% socioeconomically disadvantaged, and 2.7% sexual and gender minority groups. Study designs were 51.0% observational. 82.3% of grants measured or intervened on at least one individual-level of influence, compared to higher levels of influence (32.7% interpersonal, 41.5% institutional/community, and 12.2% societal). Behavioral and healthcare system domains of influence were commonly represented, especially at the individual level (47.6% and 36.1%, respectively). Less frequently represented was the physical/built environment (12.2%). CONCLUSIONS: NIH-funded cancer survivorship research on health disparities is still focused on individual-level of influence. However, the proportion of grants examining structural and social drivers as well as the mechanisms that drive disparities in healthcare and health outcomes among cancer survivors have increased over time. Gaps in funded research on specific populations, cancer types, and focus areas of survivorship science were identified and warrant priority.

Survivorship science at the National Institutes of Health 2017-2021.

PURPOSE: To describe the characteristics of National Institutes of Health (NIH) cancer survivorship grants funded over the past 5 years and identify gap areas for future efforts and initiatives. METHODS: Research project grants (RPG) funded during Fiscal Year (FY) 2017 to 2021 focused on cancer survivorship were identified using a text mining algorithm of words from the NIH Research, Condition, and Disease Categorization (RCDC) thesaurus with survivorship-relevant terms. The title, abstract, specific aims, and public health relevance section of each grant were reviewed for eligibility. Grants meeting the eligibility criteria were double coded to extract study characteristics (e.g., grant mechanism, study design, study population). RESULTS: A total of 586 grants were funded by 14 NIH Institutes from FY2017 to FY2021, and the number of newly funded grants increased each FY, from 68 in 2017 to 105 in 2021. Approximately 60% of all grants included an intervention study, and interventions most often focused on psychosocial or supportive care (32.0%). The most common primary focus of the grants was late- and long-term effects of cancer treatment (46.6%), and least often financial hardship. CONCLUSIONS: The results of this portfolio analysis indicate overall growth in the number and breadth of grants over the last five years, although notable gaps persist. IMPLICATIONS FOR CANCER SURVIVORS: This review of current NIH grants suggests a need for expanded research to understand and address survivor needs to ensure that the over 18 million cancer survivors in the United States have optimal quality of life and health outcomes.

Survivorship for Individuals Living With Advanced and Metastatic Cancers: National Cancer Institute Meeting Report.

An important and often overlooked subpopulation of cancer survivors is individuals who are diagnosed with or progress to advanced or metastatic cancer. Living longer with advanced or metastatic cancer often comes with a cost of burdensome physical and psychosocial symptoms and complex care needs; however, research is limited on this population. Thus, in May 2021, the National Cancer Institute convened subject matter experts, researchers, clinicians, survivors, and advocates for a 2-day virtual meeting. The purpose of this report is to provide a summary of the evidence gaps identified by subject matter experts and attendees and key opportunities identified by the National Cancer Institute in 5 research areas: epidemiology and surveillance, symptom management, psychosocial research, health-care delivery, and health behaviors. Identified gaps and opportunities include the need to develop new strategies to estimate the number of individuals living with advanced and metastatic cancers; understand and address emerging symptom trajectories; improve prognostic understanding and communication between providers, patients, and caregivers; develop and test models of comprehensive survivorship care tailored to these populations; and assess patient and provider preferences for health behavior discussions throughout the survivorship trajectory. To best address the needs of individuals living with advanced and metastatic cancer and to deliver comprehensive evidence-based quality care, research is urgently needed to fill evidence gaps, and it is essential to incorporate the survivor perspective. Developing such an evidence base is critical to inform policy and practice.

Current state of funded National Institutes of Health grants focused on individuals living with advanced and metastatic cancers: a portfolio analysis.

PURPOSE: The National Cancer Institute has supported cancer survivorship science for many years, yet few funded studies have examined the needs of individuals living with cancer that is advanced or has metastasized. This report analyzes currently active National Institutes of Health (NIH) grants focused on survivorship for patients living with advanced or metastatic cancers to identify emerging research topics in this population and gaps in current science. METHODS: A search of all NIH research grants that received funding in Fiscal Year 2020 focused on this population was conducted, excluding grants with a primary focus on end-of-life care, tumor progression or staging and grants for which the only outcome was survival. RESULTS: A total of 25 active grants met the inclusion criteria. Most were funded using the R01 grant mechanism and included a range of cancer types and topics such as palliative/supportive care, psychosocial support, health services, and symptom sequelae. CONCLUSIONS: Although currently funded grants focus on several important topics, gaps in the portfolio remain. There is a need to enhance the grant portfolio of research studies focused on the longitudinal examination of unmet needs, models of care delivery, impact of innovative therapies, and the impact of financial hardship for individuals living with advanced or metastatic cancer. IMPLICATIONS FOR CANCER SURVIVORS: This review of current NIH studies suggests a need for expanded research on individuals living with advanced or metastatic cancer. Moving forward, enhancing research focused on key gap areas will be critical to improve care and outcomes for this growing population.

Survivorship Science at the NIH: Lessons Learned From Grants Funded in Fiscal Year 2016.

Federal investment in survivorship science has grown markedly since the National Cancer Institute's creation of the Office of Cancer Survivorship in 1996. To describe the nature of this research, provide a benchmark, and map new directions for the future, a portfolio analysis of National Institutes of Health-wide survivorship grants was undertaken for fiscal year 2016. Applying survivorship-relevant terms, a search was conducted using the National Institutes of Health Information for Management, Planning, Analysis and Coordination grants database. Grants identified were reviewed for inclusion and categorized by grant mechanism used, funding agency, and principal investigator characteristics. Trained pairs of coders classified each grant by focus and design (observational vs interventional), population studied, and outcomes examined. A total of 215 survivorship grants were identified; 7 were excluded for lack of fit and 2 for nonresearch focus. Forty-one (19.7%) representing training grants (n = 38) or conference grants (n = 3) were not coded. Of the remaining 165 grants, most (88.5%) were funded by the National Cancer Institute; used the large, investigator-initiated (R01) mechanism (66.7%); focused on adult survivors alone (84.2%), often breast cancer survivors (47.3%); were observational in nature (57.3%); and addressed a broad array of topics, including psychosocial and physiologic outcomes, health behaviors, patterns of care, and economic/employment outcomes. Grants were led by investigators from diverse backgrounds, 28.4% of whom were early in their career. Present funding patterns, many stable since 2006, point to the need to expand research to include different cancer sites, greater ethnoculturally diverse samples, and older (>65 years) as well as longer-term (>5 years) survivors and address effects of newer therapies.

Research on Skin Cancer-Related Behaviors and Outcomes in the NIH Grant Portfolio, 2000-2014: Skin Cancer Intervention Across the Cancer Control Continuum (SCI-3C).

Importance: The Surgeon General's Call to Action to Prevent Skin Cancer broadly identified research gaps, but specific objectives are needed to further behavioral intervention research. Objective: To review National Institute of Health (NIH) grants targeting skin cancer-related behaviors and relevant outcomes. Design, Setting, and Participants: A portfolio analysis of the title, abstract, specific aims, and research plans of identified grant applications from 2000 to 2014 targeting skin cancer-related behaviors or testing behavioral intervention effects on cancer-relevant outcomes along the cancer continuum. Main Outcomes and Measures: Funding trends were compared along the cancer control continuum, with respect to investigator demographics and use of theory, technology, policy, and changes to environmental surroundings (built environment). Results: A total of 112 submitted applications met inclusion criteria; of these, 40 (35.7%) were funded, and 31 of the 40 were interventions. Comparing the 40 funded grants with the 72 unfunded grants, the overall success rates did not differ significantly between male (33.3%) and female (37.3%) investigators, nor did the frequency of R01 awards (36.7% and 28.1%, respectively). Among intervention awards, most (24 of 31) addressed prevention. Fewer awards targeted detection alone or in conjunction with prevention (3) or cancer survivorship (4), and no grant addressed emotional sequelae or adherence behavior related to diagnosis or treatment. Fewer than half of funded grants aimed for clinically related targets (eg, sunburn reduction). Use of theory and technology occurred in more than 75% of grants. However, the full capability of proposed technology was infrequently used, and rarely did constructs of the proposed behavior change theory clearly and comprehensively drive the intervention approach. Policy or environmental manipulation was present in all dissemination grants but was rarely used elsewhere, and 19.4% included policy implementation and 25.8% proposed changes in built environment. Conclusions and Relevance: Grant success rate in skin cancer-related behavioral science compares favorably to the overall NIH grant success rate (approximately 18%), and the success rate of male and female investigators was not statistically different. However, gaps exist in behavioral research addressing all points of the skin cancer control continuum, measuring interventions that hit clinically related targets, and leveraging technology, theory, and environmental manipulation to optimize intervention approach.

NCI Funding Trends and Priorities in Physical Activity and Energy Balance Research Among Cancer Survivors.

There is considerable evidence that a healthy lifestyle consisting of physical activity, healthy diet, and weight control is associated with reduced risk of morbidity and mortality after cancer. However, these behavioral interventions are not widely adopted in practice or community settings. Integrating heath behavior change interventions into standard survivorship care for the growing number of cancer survivors requires an understanding of the current state of the science and a coordinated scientific agenda for the future with focused attention in several priority areas. To facilitate this goal, this paper presents trends over the past decade of the National Cancer Institute (NCI) research portfolio, fiscal year 2004 to 2014, by funding mechanism, research focus, research design and methodology, primary study exposures and outcomes, and study team expertise and composition. These data inform a prioritized research agenda for the next decade focused on demonstrating value and feasibility and creating desire for health behavior change interventions at multiple levels including the survivor, clinician, and healthcare payer to facilitate the development and implementation of appropriately targeted, adaptive, effective, and sustainable programs for all survivors.

Development of a linguistically and culturally appropriate booklet for Latino cancer survivors: lessons learned.

In response to the need for linguistically and culturally appropriate cancer survivorship materials for Latinos, the Office of Education and Special Initiatives and the Office of Cancer Survivorship at the National Cancer Institute (NCI) set out to test, adapt, and refine a Spanish translation of an English-language booklet for adult cancer survivors titled Facing Forward: Life After Cancer Treatment (Siga adelante: la vida después del tratamiento del cáncer). The authors used a process called "transcreation," which involves translating existing English-language materials into Spanish and then adapting them for Latino audiences. The Spanish version of the booklet was reviewed by nine Spanish-speaking reviewers who were cancer survivors. The multistage transcreation process reinforced the importance of conducting formative research as well as adjusting the methodology to address the needs of changing demographics.

Assessing the value of a Small Grants Program for behavioral research in cancer control.

In 1999, the National Cancer Institute (NCI) issued the first Small Grants Program (SGP) for Behavioral Research in Cancer Control (R03) funding opportunity announcement for investigators new to behavioral cancer prevention and control research. We explored whether the SGP was successful in its goals to encourage new investigators from a variety of disciplines to apply their skills to and promote career development in behavioral cancer prevention and control research. A quasi-experimental design examined applicant characteristics and outcome data by award status. Propensity score matching was used to compare awardees and non-awardees with similar impact scores as a control for application quality. Awardees were more likely than non-awardees to pursue and receive subsequent funding from the NCI and publish their research. Tailored small grant programs create benefit for both promoting and retaining new investigators.

Behavioral research in cancer prevention and control: a look to the future.

Human behavior is central to the etiology and management of cancer outcomes and presents several avenues for targeted and sustained intervention. Psychosocial experiences such as stress and health behaviors including tobacco use, sun exposure, poor diet, and a sedentary lifestyle increase the risk of some cancers yet are often quite resistant to change. Cancer screening and other health services are misunderstood and over-utilized, and vaccination underutilized, in part because of the avalanche of information about cancer prevention. Coordination of cancer care is suboptimal, and only a small fraction of cancer patients enroll in clinical trials essential to the development of new cancer treatments. A growing population of cancer survivors has necessitated a fresh view of cancer as a chronic rather than acute disease. Fortunately, behavioral research can address a wide variety of key processes and outcomes across the cancer control continuum from prevention to end-of-life care. Here we consider effects at the biobehavioral and psychological, social and organizational, and environmental levels. We challenge the research community to address key behavioral targets across all levels of influence, while taking into account the many new methodological tools that can facilitate this important work.

Survivorship resources for post-treatment cancer survivors.

PURPOSE: The purpose of this project was to determine the scope of services and resources available to cancer survivors who have completed active treatment and their families at National Cancer Institute (NCI)-designated comprehensive cancer centers. DESCRIPTION OF STUDY: Patient education program contacts from the 37 NCI-designated comprehensive cancer centers participated in a telephone interview. Program contacts were asked to identify the types of medical and psychosocial services that their respective cancer center offered. RESULTS: Telephone interviews were completed by patient education program contacts from all NCI-designated comprehensive cancer centers for a total response rate of 100%. Services pertaining to lymphedema management were identified in 70% of cancer centers. Other common services identified specifically for post-treatment cancer survivors at cancer centers were professionally led support groups (49% of cancer centers), long-term medical care (38% of cancer centers), school re-entry programs (19% of cancer centers), nutrition counseling (14% of cancer centers), and counseling addressing fertility and sexual concerns (14% of cancer centers). CLINICAL IMPLICATIONS: Results from this project outline the range of services and resources that are provided to post-treatment cancer survivors by NCI-designated comprehensive cancer centers, and can be used to develop standards of care for future cancer control programs.