Identifying priority areas to support primary care engagement in breast cancer survivorship care: A Delphi study.

INTRODUCTION: Existing approaches in cancer survivorship care delivery have proven to be insufficient to engage primary care. This study aimed to identify stakeholder-informed priorities to improve primary care engagement in breast cancer survivorship care. METHODS: Experts in U.S. cancer survivorship care delivery were invited to participate in a 4-round online Delphi panel to identify and evaluate priorities for defining and fostering primary care's engagement in breast cancer survivorship. Panelists were asked to identify and then assess (ratings of 1-9) the importance and feasibility of priority items to support primary care engagement in survivorship. Panelists were asked to review the group results and reevaluate the importance and feasibility of each item, aiming to reach consensus. RESULTS: Respondent panelists (n = 23, response rate 57.5%) identified 31 priority items to support survivorship care. Panelists consistently rated three items most important (scored 9) but with uncertain feasibility (scored 5-6). These items emphasized the need to foster connections and improve communication between primary care and oncology. Panelists reached consensus on four items evaluated as important and feasible: (1) educating patients on survivorship, (2) enabling screening reminders and monitoring alerts in the electronic medical record, (3) identifying patient resources for clinicians to recommend, and (4) distributing accessible reference guides of common breast cancer drugs. CONCLUSION: Role clarity and communication between oncology and primary care were rated as most important; however, uncertainty about feasibility remains. These findings indicate that cross-disciplinary capacity building to address feasibility issues may be needed to make the most important priority items actionable in primary care.

Virtual facilitation best practices and research priorities: a scoping review.

BACKGROUND: Facilitation is an implementation strategy that supports the uptake of evidence-based practices. Recently, use of virtual facilitation (VF), or the application of facilitation using primarily video-based conferencing technologies, has become more common, especially since the COVID-19 pandemic. Thorough assessment of the literature on VF, however, is lacking. This scoping review aimed to identify and describe conceptual definitions of VF, evaluate the consistency of terminology, and recommend "best" practices for its use as an implementation strategy. METHODS: We conducted a scoping review to identify literature on VF following the PRISMA-ScR guidance. A search of PubMed, Embase, Web of Science, and CINAHL databases was conducted in June 2022 for English language articles published from January 2012 through May 2022 and repeated in May 2023 for articles published from January 2012 through April 2023. Identified articles, including studies and conference abstracts describing VF, were uploaded into Covidence and screened independently by two reviewers. Data extraction was done by two reviewers in Microsoft Excel; additionally, studies were evaluated based on the Proctor et al. (2013) reporting guidelines for specifying details of implementation strategies. RESULTS: The search strategy identified 19 articles. After abstract and full-text screening, eight studies described by 10 articles/abstracts were included in analysis. Best practices summarized across studies included (1) stakeholder engagement, (2) understanding the recipient's organization, (3) facilitator training, (4) piloting, (5) evaluating facilitation, (6) use of group facilitation to encourage learning, and (7) integrating novel tools for virtual interaction. Three papers reported all or nearly all components of the Proctor et al. reporting guidelines; justification for use of VF was the most frequently omitted. CONCLUSIONS: This scoping review evaluated available literature on use of VF as a primary implementation strategy and identified significant variability on how VF is reported, including inconsistent terminology, lack of details about how and why it was conducted, and limited adherence to published reporting guidelines. These inconsistencies impact generalizability of these methods by preventing replicability and full understanding of this emerging methodology. More work is needed to develop and evaluate best practices for effective VF to promote uptake of evidence-based interventions. TRIAL REGISTRATION: N/A.

Adapting and implementing breast cancer follow-up in primary care: protocol for a mixed methods hybrid type 1 effectiveness-implementation cluster randomized study.

BACKGROUND: Advances in detection and treatment for breast cancer have led to an increase in the number of individuals managing significant late and long-term treatment effects. Primary care has a role in caring for patients with a history of cancer, yet there is little guidance on how to effectively implement survivorship care evidence into primary care delivery. METHODS: This protocol describes a multi-phase, mixed methods, stakeholder-driven research process that prioritizes actionable, evidence-based primary care improvements to enhance breast cancer survivorship care by integrating implementation and primary care transformation frameworks: the Exploration, Preparation, Implementation, and Sustainment (EPIS) framework and the Practice Change Model (PCM). Informed by depth interviews and a four round Delphi panel with diverse stakeholders from primary care and oncology, we will implement and evaluate an iterative clinical intervention in a hybrid type 1 effectiveness-implementation cluster randomized design in twenty-six primary care practices. Multi-component implementation strategies will include facilitation, audit and feedback, and learning collaboratives. Ongoing data collection and analysis will be performed to optimize adoption of the intervention. The primary clinical outcome to test effectiveness is comprehensive breast cancer follow-up care. Implementation will be assessed using mixed methods to explore how organizational and contextual variables affect adoption, implementation, and early sustainability for provision of follow-up care, symptom, and risk management activities at six- and 12-months post implementation. DISCUSSION: Study findings are poised to inform development of scalable, high impact intervention processes to enhance long-term follow-up care for patients with a history of breast cancer in primary care. If successful, next steps would include working with a national primary care practice-based research network to implement a national dissemination study. Actionable activities and processes identified could also be applied to development of organizational and care delivery interventions for follow-up care for other cancer sites. TRIAL REGISTRATION: Registered with ClinicalTrials.gov on June 2, 2022: NCT05400941.

Strategies to Bridge Equitable Implementation of Telehealth.

During the COVID-19 pandemic, the rapid scaling of telehealth limited the extent to which proactive planning for equitable implementation was possible. The deployment of telehealth will persist in the postpandemic era, given patient preferences, advances in technologies, growing acceptance of telehealth, and the potential to overcome barriers to serve populations with limited access to high-quality in-person care. However, aspects and unintended consequences of telehealth may leave some groups underserved or unserved, and corrective implementation plans that address equitable access will be needed. The purposes of this paper are to (1) describe equitable implementation in telehealth and (2) integrate an equity lens into actionable equitable implementation.

Understanding the Impact of Medicaid-Serving Primary Care Team Functioning and Clinical Context on Cancer Care Treatment Quality: Implications for Addressing Structural Inequities.

PURPOSE: Primary care factors related to Medicaid enrollees' receipt of guideline concordant cancer treatment is understudied; however, team structure and processes likely affect care disparities. We explore Medicaid-serving primary care teams functioning within multiteam systems to understand performance variations in quality of breast and colorectal cancer care. METHODS: We conducted a comparative case study, using critical case sampling of primary care clinics in New Jersey, to provide maximum variation on clinic-level care performance rates (Medicaid enrollees' receipt of guideline-concordant treatment). Site evaluations, conducted from 2019 to 2020, included observation (2-3 days) and interviews. Using a multistep analytic process, we explored contextual factors within primary care that may contribute to cancer care performance variations. RESULTS: We identified performance variations stemming from adaptations of multiteam system inputs and processes on the basis of contextual factors (ie, business model, clinic culture). Team 1 (average performer), part of a multisite safety-net clinic system, mainly teamed outside their organization, relying on designated roles, protocol-based care, and quality improvement informed by within-team metrics. Team 2 (high performer), part of a for-profit health system, remained mission-driven to improve urban health, teamed exclusively with internal teams through electronically enabled information exchange and health system-wide quality improvement efforts. Team 3 (low performer), a physician-owned private practice with minimal teaming, accepted Medicaid enrollees to diversify their payer mix and relied on referral-based care with limited consideration of social barriers. CONCLUSION: Primary care team structures and processes variations may (in part) explain performance variations. Future research aiming to improve care quality for Medicaid populations should consider primary care teams' capacity and context in relation to composite teams to support care quality improvements in subsequent prospective trials.

Disease and debt: Findings from the 2019 Panel Study of Income Dynamics in the United States.

Medical debt has grown dramatically over the past few decades. While cancer and diabetes are known to be associated with medical debt, little is known about the impact of other medical conditions and health behaviors on medical debt. We analyzed cross-sectional data on 9174 households - spanning lower-income, middle-income, and higher-income based on the Census poverty threshold - participating in the 2019 wave of the nationally representative United States Panel Study of Income Dynamics (PSID). The outcomes were presence of any medical debt and presence of medical debt≥ $2000. Respondents reported on medical conditions (diabetes, cancer, heart disease, chronic lung disease, asthma, arthritis, anxiety disorders, mood disorders) and on health behaviors (smoking, heavy drinking). Medical debt was observed in lower-income households with heart disease (OR = 2.64, p-value = 0.006) and anxiety disorders (OR = 2.16, p-value = 0.02); middle-income households with chronic lung disease (OR = 1.73, p-value = 0.03) and mood disorders (OR = 1.53, p-value = 0.04); and higher-income households with a current smoker (OR = 2.99, p-value<0.001). Additionally, medical debt ≥$2000 was observed in lower-income households with asthma (OR = 2.16, p-value = 0.009) and a current smoker (OR = 1.62, p-value = 0.04); middle income households with hypertension (OR = 1.65, p-value = 0.05). These novel findings suggest that the harms of medical debt extend beyond cancer, diabetes and beyond lower-income households. There is an urgent need for policy and health services interventions to address medical debt in a wider range of disease contexts than heretofore envisioned. Intervention development would benefit from novel conceptual frameworks on the causal relationships between health behaviors, health conditions, and medical debt that center social-ecological influences on all three of these domains.

Colorectal Cancer Survivors' Receptivity toward Genomic Testing and Targeted Use of Non-Steroidal Anti-Inflammatory Drugs to Prevent Cancer Recurrence.

Genomic testing and targeted use of non-steroidal anti-inflammatory drugs (NSAIDs) may mitigate cancer recurrence risks. This study examines colorectal cancer (CRC) survivors' interest and receptivity to these strategies. Patients diagnosed with stage I-III CRC in 2004-2012 were recruited through the New Mexico Cancer Registry to complete a cancer survivorship experiences survey. We assessed interest in genomic testing, daily aspirin (ASA) and NSAID use, and receptivity to future daily ASA/NSAIDs. Descriptive statistics and multivariable logistic regression models estimated factors associated with genomic testing interest. Receptivity to future ASA/NSAIDs use was estimated for non-users of ASA/NSAIDs. Among CRC survivors (n = 273), 83% endorsed interest in genomic testing, 25% were ASA users and 47% ASA/NSAIDs users. In our final model, genomic testing interest was associated with being uncoupled [OR = 4.11; 95% CI = 1.49-11.35], low income [OR = 0.35, 95% CI: 0.14-0.88], smoking history [OR = 0.35, 95% CI: 0.14-0.90], low [OR: 0.33, 95% CI: 0.07-1.43] and moderate [OR: 0.26, 95% CI: 0.11-0.61] health literacy, and personal CRC risk worry [OR: 2.86, 95% CI: 1.63-5.02, p = 0.0002]. In our final model, ASA use was associated with age [OR: 1.05, 95% CI: 1.01-1.10] and cardiovascular disease history [OR: 2.42, 95% CI: 1.23-4.73, p = 0.010]. Among non-users ASA/NSAIDs, 83% reported receptivity to ASA/NSAIDs to reduce cancer risks, and no significant correlates were identified. The majority of survivors' expressed genomic testing interest and endorsed receptivity toward ASA/NSAIDs use for cancer risk management. Further research to optimize ASA/NSAIDs use guided by genomic testing is warranted.

User-Centered Development and Patient Acceptability Testing of a Health-Coaching Intervention to Enhance Cancer Survivorship Follow-up in Primary Care.

We describe an iterative three-phase approach used to develop a cancer survivorship health-coaching intervention to guide self-management and follow-up care for post-treatment breast, colorectal, and prostate cancer survivors. Informed by theory (e.g., Cognitive-Social Health Information Processing Model (C-SHIP)), relevant literature, and clinical guidelines, we engaged in a user-centered design process. In phase I, we conducted depth interviews with survivors of breast (n = 34), prostate (n = 4), and colorectal (n = 6) cancers to develop a health coaching prototype. In phase II, we utilized user-testing interviews (n = 9) to test and refine the health coaching prototype. For both phases, we used a template analysis independently coding each interview. In phase I, majority (n = 34, 81%) of survivors were positive about the utility of health coaching. Among these survivors (n = 34), the top areas of identified need were emotional support (44%), general health information (35.3%), changes in diet and exercise (29.3%), accountability and motivation (23.5%), and information about treatment effects (17.7%). The prototype was developed and user-tested and refined in phase III to address the following concerns: (1) the amount of time for calls, (2) density of reading materials, (3) clarity about health coaches' role, (4) customization. Collectively, this resulted in the development of the Extended Cancer Educational for Long-Term Cancer Survivors health-coaching (EXCELSHC) program, which represents the first cancer survivorship follow-up program to support follow-up care designed-for-dissemination in primary care settings. EXCELSHC is being tested in a clinical efficacy trial. Future research will focus on program refinement and testing for effectiveness in primary care.

Substance use disorder approaches in US primary care clinics with national reputations as workforce innovators.

BACKGROUND: Over the last decade, primary care clinics in the United States have responded both to national policies encouraging clinics to support substance use disorders (SUD) service expansion and to regulations aiming to curb the opioid epidemic. OBJECTIVE: To characterize approaches to SUD service expansion in primary care clinics with national reputations as workforce innovators. METHODS: Comparative case studies were conducted to characterize different approaches among 12 primary care clinics purposively and iteratively recruited from a national registry of workforce innovators. Observational field notes and qualitative interviews from site visits were coded and analysed to identify and characterize clinic attributes. RESULTS: Codes describing clinic SUD expansion approaches emerged from our analysis. Clinics were characterized as: avoidant (n = 3), contemplative (n = 5) and responsive (n = 4). Avoidant clinics were resistant to planning SUD service expansion; had no or few on-site behavioural health staff; and lacked on-site medication treatment (previously termed medication-assisted therapy) waivered providers. Contemplative clinics were planning or had partially implemented SUD services; members expressed uncertainties about expansion; had co-located behavioural healthcare providers, but no on-site medication treatment waivered and prescribing providers. Responsive clinics had fully implemented SUD; members used non-judgmental language about SUD services; had both co-located SUD behavioural health staff trained in SUD service provision and waivered medication treatment physicians and/or a coordinated referral pathway. CONCLUSIONS: Efforts to support SUD service expansion should tailor implementation supports based on specific clinic training and capacity building needs. Future work should inform the adaption of evidence-based practices that are responsive to resource constraints to optimize SUD treatment access.

Primary care clinics in the US have been encouraged to expand addiction services to increase treatment access and respond to the opioid epidemic. This study uses structured observations and depth interviews to assess and compare how primary care clinics with innovative workforces have responded to the growing need for substance use disorder treatment. Each of the clinics studied represents a 'case.' We systematically compared cases to understand how and if addiction services were expanded. Twelve clinic 'cases' were coded and characterized based on a continuum of receptivity ranging from avoidant (i.e., resistant), contemplative (i.e., organization members plan to implement change) and responsive (i.e. expansions implemented). Our analysis characterized three clinics as avoidant to expanding addiction services reporting no plans to respond to calls to expand addiction services. Five clinics were characterized as contemplative, meaning they recognized the need but still had reservations and concerns about the expansion. Four clinics were characterized as responsive to addiction service expansion and had several organizational-wide strategies to assess, intervene and treat patients with addictions. Despite national and state-based policies to entice clinics to expand addiction services there was a diversity of approaches observed in clinics. Avoidant and contemplative clinics may need implementation support to build capacity for this type of delivery expansion.

Cancer prevention, risk reduction, and control: opportunities for the next decade of health care delivery research.

In this commentary, we discuss opportunities to optimize cancer care delivery in the next decade building from evidence and advancements in the conceptualization and implementation of multi-level translational behavioral interventions. We summarize critical issues and discoveries describing new directions for translational behavioral research in the coming decade based on the promise of the accelerated application of this evidence within learning health systems. To illustrate these advances, we discuss cancer prevention, risk reduction (particularly precision prevention and early detection), and cancer treatment and survivorship (particularly risk- and need-stratified comprehensive care) and propose opportunities to equitably improve outcomes while addressing clinician shortages and cross-system coordination. We also discuss the impacts of COVID-19 and potential advances of scientific knowledge in the context of existing evidence, the need for adaptation, and potential areas of innovation to meet the needs of converging crises (e.g., fragmented care, workforce shortages, ongoing pandemic) in cancer health care delivery. Finally, we discuss new areas for exploration by applying key lessons gleaned from implementation efforts guided by advances in behavioral health.

Correlates of Information Seeking Behaviors and Experiences Among Adult Cancer Survivors in the USA.

Understanding information seeking behaviors and experiences is essential for designing educational and supportive interventions to promote survivor's self-management post treatment. This study examined health and cancer information seeking, use of internet to find cancer information, and information seeking experiences among breast, colorectal, and prostate cancer survivors. Nationally representative data collected in 2017-2018 from 2 cycles of the Health Information National Trends Survey (HINTS 5, cycles 1 and 2 were merged with combined replicate weights using the jackknife replication method (n = 373). Regression analysis for three information seeking behaviors (i.e., health information, cancer information, and internet for cancer information) were modeled, including sociodemographic and clinical factors as predictors. In addition, separate regression analysis predicted three experiences of information seeking (effort, quality, and hard to understand) with sociodemographic and clinical factors. A majority of survivors (84.7%) sought health information. Factors significantly associated with seeking health information were gender (p = 0.024), education (p = 0.0021), and income (p = 0.018). Only 38% of survivors used the internet to seek cancer-related information. The only factor significantly associated with using the internet to seek cancer-related information was time since diagnosis (p = 0.0002). The factor significantly associated with difficulty understanding information was annual household income (p = 0.026). This study fills an important gap by identifying sociodemographic and cancer-related factors associated with information seeking behaviors and experiences. These findings highlight a need to tailor information for low socioeconomic status survivors to account for the lack of skills, resources, and motivation to seek information about health and cancer related topics independently.

Development and usability testing of the e-EXCELS tool to guide cancer survivorship follow-up care.

OBJECTIVE: The aim of this study is to describe a user-centered (e.g., cancer survivors and clinicians) development process of an eHealth tool designed to facilitate self-management of cancer survivorship follow-up care. METHODS: Guided by Cognitive-Social Health Information Processing (C-SHIP) model and informed by core self-management skills, we engaged in a user-centered design process. In phase I, we conducted in-depth interviews with survivors of breast (n = 33), prostate (n = 4), and colorectal (n = 6) cancers, and (n = 9) primary care providers to develop content and design of the web tool. Phase II utilized iterative user testing interviews (n = 9) to test the web-based tool prototype. Data from both phases were independently coded using a template/content analytic approach. RESULTS: The top 5 functions identified in phase I for the web-based platform included: (a) educational materials to learn and prepare for health encounters (80%); (b) questions for health providers (74%); (c) ability to track contact information of providers (67%); (d) provide general information (64%); and, (e) support information (62%). Users of the prototype reported patient burden, tool fatigue, introduction timing of the tool, relevance, and security/privacy as concerns in phase II. CONCLUSIONS: This study demonstrates the value of using a theoretically informed and user-centered design process to develop relevant and patient-centered eHealth resources to support cancer survivorship. A larger study is needed to establish the efficacy of this eHealth tool as an intervention to improve adherence to follow-up care guidelines.

Rationale and design of extended cancer education for longer term survivors (EXCELS): a randomized control trial of 'high touch' vs. 'high tech' cancer survivorship self-management tools in primary care.

BACKGROUND: Breast, colorectal, and prostate cancer survivors are at increased risk for late and long-term effects post-treatment. The post-treatment phase of care is often poorly coordinated and survivors navigate follow-up care with minimal information or guidance from their healthcare team. This manuscript describes the Extended Cancer Education for Longer-term Survivors (EXCELS) in Primary Care protocol. EXCELS is a randomized controlled trial to test the efficacy of patient-level self-management educational strategies on adherence to preventative health service use and cancer survivorship follow-up guidelines. METHODS: The EXCELS trial compares four conditions: (1) EXCELS-website (e.g., a mobile-optimized technology platform); (2) EXCELS-health coaching; (3) EXCELS-website and health coaching; and (4) a print booklet. Approximately 480 breast, colorectal, and prostate survivors will be recruited through the New Jersey Primary Care Research Network (NJPCRN) and New Jersey State Cancer Registry (NJSCR). Eligible survivors (diagnosed stages 1-3) must have completed active treatment, access to a phone and a computer, smartphone or tablet with internet access, and be able to speak and read English. Patient assessments occur at baseline, 6, 12, and 18 months. The primary outcomes are increased engagement in preventive health services and monitoring for cancer recurrence and treatment-related late effects. DISCUSSION: The EXCELS trial is the first to test cancer survivorship educational self-management interventions for cancer survivors in a primary care context. Findings from this trial will inform successful implementation and engagement strategies for longer-term, post-treatment cancer survivors managed in primary care settings. TRIAL REGISTRATION: Registered August 1, 2017 at ClinicalTrials.gov , trial # NCT03233555.

Integrating primary care providers in the care of cancer survivors: gaps in evidence and future opportunities.

Since the release of the Institute of Medicine report: From cancer patient to cancer survivor: lost in transition, in 2005, there has been a national call in the USA to provide coordinated, comprehensive care for cancer survivors, with an emphasis on the role of primary care. Several models of care have been described, which focus on primary care providers (PCPs) as receiving cancer survivors who are transferred after successful treatment, and who are given specific types of information from oncology-based care (eg, survivorship care plans), and not as active members of the cancer survivorship team. In this Series paper, we assessed survivorship models that have been described in the literature, with a specific focus on strategies that aim to integrate PCPs into the care of cancer survivors across different settings. We offer insights differentiating PCPs' level of expertise in cancer survivorship and how such expertise could be used. We provide recommendations for education, clinical practice, research, and policy initiatives that might advance the integration of PCPs in the care of cancer survivors in diverse clinical settings.

Follow-up Care Education and Information: Identifying Cancer Survivors in Need of More Guidance.

Cancer survivors engage in cancer screenings and protective health behaviors at suboptimal rates despite their increased risk for future illness. Survivorship care plans and other educational strategies to prepare cancer survivors to adopt engaged roles in managing long-term follow-up care and health risks are needed. In a sample of cancer survivors, we identified patient characteristics and psychosocial predictors associated with increased follow-up care informational needs. Cross-sectional surveys were administered to early-stage breast and prostate survivors (N = 278; 68 % breast) at least 2 years post treatment from four community hospital programs in New Jersey between May 2012 and July 2013. Patient demographics, medical history, psychosocial characteristics (i.e., worries about the future, fear of disease recurrence, and patient activation), and perceptions of oncology and primary care were assessed. African-American survivors (AOR = 2.69, 95 % confidence interval [CI] 1.27-5.68) and survivors with higher comorbidity (AOR =1.16, CI 1.01-1.33) were more likely to want additional information to guide follow-up care. Adjusting for race and comorbidities, survivors who wanted more information to guide their follow-up care reported greater worries about the future (p < 0.05) and fears about disease recurrence (p < 0.05) compared to those who did not want additional information. Results emphasize the need to develop cancer survivorship educational strategies that are both responsive to the needs of specific populations (e.g., African-American survivors and patients with multiple comorbidities) and the psychosocial profiles that motivate requests for more extensive follow-up guidance.

Achieving optimal delivery of follow-up care for prostate cancer survivors: improving patient outcomes.

BACKGROUND: Prostate cancer is the most commonly diagnosed cancer in men in the US, and the second most prevalent cancer in men worldwide. High incidence and survival rates for prostate cancer have resulted in a large and growing population of long-term prostate cancer survivors. Long-term follow-up guidelines have only recently been developed to inform approaches to this phase of care for the prostate cancer population. METHODS: A PubMed search of English literature through August 2014 was performed. Articles were retrieved and reviewed to confirm their relevance. Patient-reported measures that were used in studies of long-term prostate cancer survivors (ie, at least 2 years posttreatment) were reviewed and included in the review. RESULTS: A total of 343 abstracts were initially identified from the database search. After abstract review, 105 full-text articles were reviewed of which seven met inclusion criteria. An additional 22 articles were identified from the references of the included articles, and 29 were retained. From the 29 articles, 68 patient-reported outcome measures were identified. The majority (75%) were multi-item scales that had been previously validated in existing literature. We identified four main areas of assessment: 1) physical health; 2) quality of life - general, physical, and psychosocial; 3) health promotion - physical activity, diet, and tobacco cessation; and 4) care quality outcomes. CONCLUSION: There are a number of well-validated measures that assess patient-reported outcomes that document key aspects of long-term follow-up with respect to patient symptoms and quality of life. However, there are fewer patient-reported outcomes related to health promotion and care quality within the prevention, surveillance, and care coordination components of cancer survivorship. Future research should focus on development of additional patient-centered and patient-related outcomes that enlarge the assessment portfolio.