Improving cancer care for underserved populations in an academic and community practice setting: protocol for a community health worker pilot navigation programme.

INTRODUCTION: Delaying cancer treatment following diagnosis impacts health outcomes, including increasing patient distress and odds of mortality. Interventions to promote timely healthcare engagement may decrease patient-reported stress and improve quality of life. Community health workers (CHWs) represent an enabling resource for reducing delays in attending initial oncology treatment visits. As part of an ongoing programme evaluation coordinated by the Merck Foundation, we will implement a pilot navigation programme comprising CHW-conducted needs assessments for supporting patients and their caregivers. We aim to investigate (1) the programme's influence on patients' healthcare utilisation within the period between their first diagnosis and initial treatment visit and (2) the logistic feasibility and acceptability of programme implementation. METHODS AND ANALYSIS: We will employ a hybrid implementation design to introduce the CHW navigation programme at the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center. CHW team members will use a consecutive sampling approach. Participants will complete the Problem-Checklist, Chronic Illness Distress Scale and the Satisfaction with Life Domains instruments. CHWs will provide tailored guidance by sharing information available on the Johns Hopkins Electronic Resource databases. The investigators will evaluate patients' time to initial oncology treatment and healthcare utilisation by reviewing electronic medical records at 3 and 6 months postintervention. Bivariate analyses will be completed to evaluate the relationships between receiving the programme and all outcome measures. ETHICS AND DISSEMINATION: This study's protocol was approved by the Johns Hopkins School of Medicine's institutional review board (IRB00160610). Informed consent will be obtained by phone by the CHW navigator. Dissemination planning is ongoing through regular meetings between members of the investigator team and public members of two community advisory groups. Study plans include collaborating with other experts from the Johns Hopkins Institute for Clinical and Translational Research and the Johns Hopkins Center for Health Equity for ideating dissemination strategies.

Colorectal cancer survivorship care plans: Variations in documentation and posttreatment surveillance recommendations.

BACKGROUND: Survivorship care plans (SCP) should outline pertinent information about cancer treatment and follow-up. METHODS: We descriptively analyzed the content of 74 colorectal cancer SCPs completed as part of a randomized, controlled trial of SCPs at an academic and community cancer center. Surveillance recommendations were compared with American Cancer Society, American Society of Clinical Oncology and National Comprehensive Cancer Network guidelines. RESULTS: SCP information provided in >80% of the plans included participant age, cancer diagnosis, details, and side-effects of treatment (surgery, chemotherapy, radiation) and health promotion recommendations. SCP content documented less frequently included predisposing conditions, genetic counseling/testing information and staging. Posttreatment surveillance recommendations were documented in >90% SCPs. For stage 2-3 cancer, rates of guideline concordant recommendations were 100% for colonoscopy surveillance (Year 1 only), 87% for imaging surveillance, 65% for carcinoembryonic antigen surveillance, and 33% for follow-up visits. Excluding colonoscopy, >15 unique recommendations were listed for each modality across stages and sites, with more variation at the academic site. CONCLUSIONS: SCPs consistently recorded information about cancer diagnosis and treatment but omitted critical information about cancer-specific details denoting risk. Surveillance recommendations varied considerably between cancer centers. Future work to improve the consistency of surveillance recommendations documented in SCPs may be needed.

What are survivorship care plans failing to tell men after prostate cancer treatment?

BACKGROUND: Survivorship care plans contain important information for patients and primary care physicians regarding appropriate care for cancer survivors after treatment. We describe the completeness of prostate cancer survivorship care plans and evaluate the concordance of follow-up recommendations with guidelines. METHODS: We analyzed 119 prostate cancer survivorship care plans from one academic and one community cancer center, abstracting demographics, cancer/treatment details, and follow-up recommendations. Follow-up recommendations were compared with the American Cancer Society (ACS), American Society of Clinical Oncology (ASCO), and National Comprehensive Cancer Network (NCCN) guidelines. RESULTS: Content in >90% of plans included cancer TNM stage; prostate-specific antigen (PSA) at diagnosis; radiation treatment details (98% of men received radiation); and PSA monitoring recommendations. Potential treatment-specific side effects were listed for 82% of men who had surgery, 86% who received androgen deprivation therapy (ADT), and 97% who underwent radiation. The presence of posttreatment symptoms was noted in 71% of plans. Regarding surveillance follow-up, all guidelines recommend an annual digital rectal exam (DRE). No plans specified DRE. However, all 71 plans at the community site recommended at least annual follow-up visits with urology, radiation oncology, and primary care. Only 2/48 plans at the academic site specified follow-up visits. All guidelines recommend PSA testing every 6-12 months for 5 years, then annually. For the first 5 years, 90% of plans were guideline-concordant, 8% suggested oversurveillance, and 2% were incomplete. In men receiving ADT, ACS and ASCO recommend bone density imaging and NCCN recommends testosterone levels. Of 77 men on ADT, 1% were recommended bone density imaging and 16% testosterone level testing. CONCLUSIONS: While care plan content is more complete for demographic and treatment summary information, both sites had gaps in reporting posttreatment symptoms and ADT-related testing recommendations. These findings highlight the need to improve the quality of information in care plans, which are important in communicating appropriate follow-up recommendations to patients and primary care physicians.

Breast cancer survivorship care plans: what are they covering and how well do they align with national guidelines?

PURPOSE: Survivorship care plans (SCPs) provide key information about cancer treatment history and follow-up recommendations. We describe the completeness of breast cancer SCPs and evaluate guideline concordance of follow-up recommendations. METHODS: We analyzed 149 breast cancer SCPs from two sites, abstracting demographics, cancer/treatment details, surveillance plans, and health promotion advice. SCP recommendations and provided information were compared to American Cancer Society/American Society of Clinical Oncology and National Comprehensive Cancer Network guidelines. RESULTS: SCP information provided in > 90% of the plans included patient age; relevant providers; cancer stage; treatment details; and physical exam, mammogram, and health promotion recommendations. SCP components completed less frequently included post-treatment symptoms/side effects (67%). All SCPs at the community site were uniform but had the potential for oversurveillance if visits occurred every 3 months in years 1-2 or every 6 months in years 3-5 with multiple cancer providers. The academic site recommended three predominant patterns of follow-up: (1) primary care provider every 6-12 months; (2) cancer team every 3-6 months (year 1), every 6-12 months (years 4-5); and (3) alternating oncology providers every 3-6 months (years 1-2) then every 6 months. Compared to guidelines, these patterns recommend under- and oversurveillance at various times. Mammography recommendations showed guideline concordance (annual) for 84%, oversurveillance for 10%, and were incomplete for 6%. SCPs of only 12/79 (15%) women on aromatase inhibitors recommended guideline-concordant bone density testing. CONCLUSIONS: SCP content is more complete for demographic and treatment summary information but has follow-up recommendation gaps. Efforts to improve follow-up recommendations are needed.

"We're Just Not Prepared for Eating Over Our Whole Life": A Mixed Methods Approach to Understanding Dietary Behaviors Among Longer Term Cancer Survivors.

BACKGROUND: In many countries, there are growing numbers of persons living with a prior diagnosis of cancer, due to the aging population and more successful strategies for treatment. There is also growing evidence of the importance of healthful diet and weight management for survivorship, yet many long-term cancer survivors are not successfully following recommendations. METHODS: We explored this issue in a mixed methods study with 53 adult survivors of 3 cancers (breast, prostate, and non-Hodgkin's lymphoma), living in Maryland. Participants provided three 24-hour dietary recalls, and results were used to classify respondents on 2 metrics of healthful eating (the Healthy Eating Index 2010, and a 9-item index based on current dietary recommendations). Recalls were also used to guide in-depth qualitative discussions with participants regarding self-assessment of dietary behaviors, healthful eating, and diet's importance in cancer prevention and survivorship. RESULTS: Survivors following a more healthful diet were more likely to be female, have greater socioeconomic resources, more years since diagnosis, normal weight, and no smoking history. Qualitative discussions revealed a more nuanced understanding of dietary strategies among healthful eaters, as well as the importance of household members in dietary decision making. DISCUSSION: Most survivors had received little nutrition counseling as part of their cancer care, highlighting the importance of holistic, household-oriented nutrition education for maintaining health among long-term cancer survivors.

Clinical care providers' perspectives on body size and weight management among long-term cancer survivors.

OBJECTIVE: To examine clinical care providers' perspectives on cancer survivors' body size and weight management. STUDY DESIGN: In-depth, semi-structured, qualitative interviews. METHODS: Interviews were conducted with 33 providers (eg. oncologists, surgeons, primary care providers, nurses, dietitians) across academic and community clinical settings. They were transcribed, coded, and analyzed thematically using constant comparative analysis. RESULTS: Providers conceptualized weight in relation to acute treatment, cancer outcomes, or overall health/comorbidities. These patterns were reflected in their reported framing of weight discussions, although providers indicated that they counsel patients on weight to varying extents. Perspectives differed based on professional roles and patient populations. Providers reported that survivors are motivated to lose weight, particularly due to comorbidity concerns, but face numerous barriers to doing so. CONCLUSION: Providers described survivor-level and capacity-level factors influencing survivors' weight management. Differences by provider type highlighted the role of provider knowledge, attitudes, and beliefs in clinical encounters. Opportunities for research and intervention include developing and disseminating evidence-based clinical resources for weight management among cancer survivors, addressing capacity barriers, and exploring communication strategies at interpersonal and population levels.

Comparing care for breast cancer survivors to non-cancer controls: a five-year longitudinal study.

BACKGROUND: Deficiencies in care for cancer survivors may result from unclear roles for primary care providers (PCPs) and oncology specialists in follow-up. OBJECTIVES: To compare cancer survivors' care to non-cancer controls. DESIGN: Retrospective, longitudinal, controlled study starting 366 days post-diagnosis. SUBJECTS: Stage 1-3 breast cancer survivors age 65+ diagnosed in 1998 (n = 1961) and matched non-cancer controls (n = 1961). MEASUREMENTS: Using the SEER-Medicare database, we examined the number of visits to PCPs, oncology specialists, and other physicians; receipt of influenza vaccination, cholesterol screening, colorectal cancer screening, bone densitometry, and mammography; and whether care receipt was associated with physician mix visited. RESULTS: Survivors were consistently less likely to receive influenza vaccination, cholesterol screening, colorectal cancer screening, and bone densitometry but more likely to receive mammograms than controls (all p < 0.05). Over time, colorectal cancer screening and mammography decreased and influenza vaccination increased for both groups (all p < 0.0001). Trends over time in care receipt were similar for survivors and controls. In Year 1, survivors had more visits to PCPs but fewer visits to other physicians than controls (both p < 0.05). Over time, survivors' visits to PCPs and other physicians increased and to oncology specialists decreased (all p < 0.0001). Controls' visits to PCPs increased (p < 0.0001) faster than survivors' (p = 0.003). Controls' visits to other physicians increased (p < 0.0001) at a rate similar to survivors. Survivors who visited both a PCP and oncology specialist were most likely to receive each service. CONCLUSIONS: Better coordination between PCPs and oncology specialists may improve care for older breast cancer survivors.