Tisha M. Felder

Beyond Reading Level: A Systematic Review of the Suitability of Cancer Education Print and Web-based Materials

Consideration of categories related to reading comprehension—beyond reading level—is imperative to reach low literacy populations effectively. “Suitability” has been proposed as a term to encompass six categories of such factors: content, literacy demand graphics, layout/typography, learning stimulation, and cultural appropriateness. Our purpose was to describe instruments used to evaluate categories of suitability in cancer education materials in published reports and their findings. We searched databases and reference lists for evaluations of print and Web-based cancer education materials to identify and describe measures of these categories. Studies had to evaluate reading level and at least one category of suitability. Eleven studies met our criteria. Seven studies reported inter-rater reliability. Cultural appropriateness was most often assessed; four instruments assessed only surface aspects of cultural appropriateness. Only two of seven instruments used, the suitability assessment of materials (SAM) and the comprehensibility assessment of materials (SAM + CAM), were described as having any evidence of validity. Studies using Simplified Measure of Goobledygook (SMOG) and Fry reported higher average reading level scores than those using Flesh-Kincaid. Most materials failed criteria for reading level and cultural appropriateness. We recommend more emphasis on the categories of suitability for those developing cancer education materials and more study of these categories and reliability and validity testing of instruments.

Reducing Cancer Disparities Through Innovative Partnerships: A Collaboration of the South Carolina Cancer Prevention and Control Research Network and Federally Qualified Health Centers

The South Carolina Cancer Prevention and Control Research Network, in partnership with the South Carolina Primary Health Care Association, and Federally Qualified Health Centers (FQHCs), aims to promote evidence-based cancer interventions in community-based primary care settings. Partnership activities include (1) examining FQHCs’ readiness and capacity for conducting research, (2) developing a cancer-focused data sharing network, and (3) integrating a farmers’ market within an FQHC. These activities identify unique opportunities for public health and primary care collaborations.

Fulfilling Ethical Responsibility: Moving Beyond the Minimal Standards of Protecting Human Subjects from Research Harm.

Problem: Rules for protecting human subjects, in place federally since 1974, have focused primarily on guarding against placing research subjects at social, physical, or psychological risk or violating their privacy and confidentiality. Nevertheless, high-risk communities are routinely subjected to “sins of omission,” which limit access to potentially significant research opportunities and result in the absence of studies that could confer high degree of community beneficence.Purpose of Article: To describe “sins of omission” and provide examples from the Community Networks Program Centers (CNPC) to illustrate how community-based participatory research (CBPR) can prevent them.Key Points: CBPR is an effective antidote to sins of omission. Activities undertaken by the CNPCs illustrate how adherence to CBPR principles can improve research access and outcomes.Conclusions: By working with community members as partners, we expand the concept of beneficence to include “community beneficence,” thus reducing the probability of “sins of omission.”

Can Patients Afford to Be Adherent to Expensive Oral Cancer Drugs?: Unintended Consequences of Pharmaceutical Development

The increased availability of oral cancer agents in oncology care is promoting a gradual shift from cancer therapy exclusively being administered in the health care setting to patients with cancer being able to self-administer therapy in their own home. Simultaneously, the costs associated with cancer therapy, particularly oral therapies, continue to increase.1 Average copays for insured cancer patients are approximately 20% of the cost of the prescribed therapy, costing them more than

Mentoring and Training of Cancer-Related Health Disparities Researchers Committed to Community-Based Participatory Research.

25,000 per year to adhere to some oral cancer treatment regimens.1 With this type of financial burden, it is no surprise that people with cancer are nearly 3 times more likely to file for bankruptcy than people without cancer.2 Such costs prevent cancer patients from being adherent to their prescribed regimen3 or require them to seek alternative ways to pay for their cancer care. For example, a number of veterans are transferring their medical care from non–Veteran Affairs to Veteran Affairs providers after receiving a single prescription for expensive oral agents.4 As prices increase for oral cancer drugs, supply chain integrity, specifically the risk of counterfeit cancer drugs, and related patient safety may also be of concern. In the United States, documented use of counterfeit drugs by patients with cancer has been associated with adverse events and treatment failure.5 At the policy level, there is strong evidence showing that reducing out-of-pocket costs positively affects medication adherence,6 and this may be particularly relevant for cancer treatment. At the time of this writing, advocates are pushing for the passage of the Cancer Drug Coverage Parity Act of 2013, which will ensure that patients diagnosed with cancer will pay comparable costs for oral and intravenous cancer therapies.7 This Act may be particularly important for cancer survivors insured by Medicare—the nations largest payer for cancer care—who report foregoing their prescription medications as a result of cost.8 However, what this piece of legislation is unable to do is reduce the price tags pharmaceutical companies attach to many of their oral cancer medications. Thus, in tandem with the implementation of the Patient Accountability and Affordable Care Act, these federal mandates may improve access to cancer care but not necessarily guarantee that cancer care will be more affordable.9 As we wait in hopeful expectation for passage of the federal Parity Act, what do patients with cancer do in the meantime if they cannot afford their medications? They either do not take their medications as prescribed, or they do not take them at all. Zullig et al10 found that nearly half of surveyed cancer patients were nonadherent to their prescribed medications as a result of cost. These patients were more likely to borrow money or use credit, and even forego basic needs, to get their medication. Most of these patients also had prescription drug coverage and health insurance—reminding us again about the compounding issues of access and affordability. Although oncologists are aware and overwhelmingly concerned about their patients being able to afford their cancer treatment, most clinicians are not sure what they can do about it.11 A key contribution that Zullig et al make to the oncology community is their suggestion to screen patients for (1) financial barriers to purchasing their prescribed medications and (2) medication adherence behaviors.10 Conducting a financial screening would enable clinicians to know if their patients are experiencing or anticipate difficultly in paying out-of-pocket costs for their prescribed medications. Screening for medication adherence behaviors would inform clinicians, in combination with their patients financial profile, of other nonfinancial reasons why their patients may or may not be taking their medications as prescribed. To assess patient financial barriers, a systematic review of self-report instruments measuring barriers to medication adherence reported five different instruments to assess financial burden for medications, which range from one simple question to subscales including multiple items.12 To assess medication nonadherence behaviors, Marcum, Sevick, and Handler (2013) suggest that clinicians use previously validated screening instruments to diagnose six broad medication nonadherence patient profiles (eg, patient has conflicting normative beliefs about medication, patient perceives lack of therapeutic effectiveness) and address nonadherence with the appropriate educational or behavioral interventions.13 Given the variety of financial and medication adherence screening instruments, clinicians have the opportunity to choose the tools that best fit their clinical environments. In the event that “financial toxicity”10 is diagnosed during the financial and medication adherence screening processes, clinicians can consider assisting their patients with enrolling into patient assistance programs (Table 1). These charity programs, generally provided voluntarily through pharmaceutical and nonprofit organizations, provide support in the form of free or discounted medications and/or financial support for eligible patients. There are also supplemental cancer insurance policies that can help patients pay treatment-associated out-of-pocket costs and other related expenses.14 Our work has shown that patient assistance programs can improve health outcomes for patients with certain chronic conditions15 and provide commonly prescribed orally administered cancer and supportive care medications.16 Eligibility for patient assistance programs is often based on health insurance coverage and income criteria specific to each program, as well as the type and cost of the cancer drug. Clinicians should be aware that given the high cost of cancer therapies, patients who have prescription drug coverage, such as through Medicare Part D, and household incomes over

African American Women’s Recollected Experiences of Adherence to Breast Cancer Treatment

60,000 per year may still be eligible for certain medications through patient assistance programs. Table 1. Examples of Programs That Can Assist Patients With Paying for Oral Cancer Medications Even though patient assistance programs can be helpful, the process for applying to these programs has been characterized as challenging.17 For example, many patient assistance programs require patients to complete a unique application form for each individual program, often including patient proof of income (eg, tax returns, W-2), and health care provider signature. Furthermore, patients may be required to reapply each time they need assistance, ranging from every 30 days to once per year. As a result of these complexities, health care providers are generally needed to assist patients with applications. Given the time constraints placed on clinicians within the health care system, they may consider designating other health professionals, such as nurses, pharmacists, social workers, or even cancer survivor volunteers, to assist patients with patient assistance program enrollment. Patient navigators could also play an integral part in enrolling patients into patient assistance programs. There is growing evidence regarding the efficacy of patient navigation in improving cancer screening; however, there is room for further investigation of the role of navigators in improving diagnostic follow-up and adherence to cancer treatment.18 Accrediting bodies, such as the American College of Surgeons Commission on Cancer and National Accreditation Programs for Breast Centers, require accredited cancer programs and health care facilities to provide patient navigation services. Assisting patients with cancer with patient assistance program enrollment could be a strategic approach for cancer programs and health care systems to comply with these accreditation mandates. As both clinicians and policymakers work hard to help patients with cancer overcome financial barriers to prescribed therapies, the most successful outcome may lie in balancing the underlying tension between cancer drug pricing policies and social and economic policies that contribute to differences in the distribution of social determinants of health (eg, income, employment, education). To resolve this tension will require the political will of high-level players who often have fundamentally opposing priorities and interests. While this tension remains, cancer will, unfortunately, affect the lives of the “haves” and the “have nots.” For this reason, we must take action within our professional and community spheres of influence to advocate for policies and programs aimed at eliminating financial distress as a reason for treatment nonadherence. Patients with cancer cannot afford for us not to.

Evaluation of a Computer-Based Decision Aid for Promoting Informed Prostate Cancer Screening Decisions Among African American Men: iDecide

Background and Objective: The National Cancer Institute’s (NCI) Community Networks Program Centers (CNPCs) provide community-based participatory research (CBPR)-oriented mentoring and training to prepare early-stage/midcareer investigators and student trainees (trainees) in disparities reduction. This paper describes the academic, mentoring, training, and work–life balance experiences of CNPC-affiliated trainees.Methods: We used a collaborative and iterative process to develop a 57-item, web-based questionnaire completed by trainees from the 23 CNPCs between August 2012 and February 2013. Their CNPC mentors completed a 47-item questionnaire. Descriptive statistics were calculated.Results: The final analytic sample included 189 of 269 individuals (70%) identified as active participants in CNPC research or training/mentoring. Mentors (n = 45) were mostly non-Hispanic White (77.8%) and 48.9% were male. Mentors published a median of 6 (interquartile range [IQR], 3–12) first-authored and 15 (IQR, 6–25) senior authored manuscripts, and secured 15 (IQR, 11–29) grants from the National Institutes of Health (NIH) and other sources in the previous 5 years. Most trainees (n = 144) were female (79.2%), 43.7% were underrepresented racial/ethnic minorities, and 36.8% were first-generation college graduates. Over the previous 5 years, trainees reported a median of 4 (IQR, 1–6) publications as first author and 4 (IQR, 2–8) as co-author; 27.1% reported having one or more NIH R01s. Trainees reported satisfaction with their CNPC mentor (79.1%) and confidence in demonstrating most CBPR competencies.Conclusion: The CNPC training program consists of a scientifically productive pool of mentors and trainees. Trainees reported rates of scholarly productivity comparable to other national training programs and provided insights into relationships with mentors, academic pressures, and professional–personal life balance.

Expectations and reality: perceptions of support among African American breast cancer survivors

Purpose/Objectives: To explore African American women’s recollected experiences of breast cancer treatment. Research Approach: Qualitative description and narrative analysis. Setting: South Carolina Oncology Associates, an outpatient oncology clinic serving rural and urban populations. Participants: 16 African American women with breast cancer previously enrolled in the control arm (n = 93) of a completed randomized, controlled trial. Methodologic Approach: Feminist narrative analysis of in‐depth individual interviews. Findings: The authors identified three themes within the African American breast cancer survivors’ recollected experiences of treatment adherence: Embarking With Trust, Moving on Down the Road, and Being Actively Involved in Decision Making. Interpretation: Although little evidence was presented of shared decision making with providers, patients were committed to completing the prescribed therapies. The narratives highlighted the value of in‐depth examination of patients’ perspectives, particularly among minority and underserved groups. With the exception of voicing personal choice of surgical treatment, the women trusted providers’ recommendations with a resolve to “just do it.” Although trust may enhance treatment adherence, it may also reflect power differentials based on gender, race, education, and culture. Implications for Nursing: Nurses should listen to patients describe their experience with cancer treatment and compare the themes from this study with their patients’ story. This comparison will help nurses support patients through various aspect of diagnosis and treatment.

Abstract 4216: Racial disparities in receipt of adjuvant hormonal therapy among patients diagnosed with breast cancer in South Carolina

Purpose: To evaluate the effects of iDecide on prostate cancer knowledge, informed decision-making self-efficacy, technology use self-efficacy, and intention to engage in informed decision-making among African American men. Design: One-group, pretest/posttest. Setting: Community settings in South Carolina. Participants: African American men, ages 40 years +, without a prior prostate cancer diagnosis (n = 354). Intervention: iDecide, an embodied conversational agent-led, computer-based prostate cancer screening decision aid. Measures: Prostate cancer knowledge, informed decision-making self-efficacy, technology use self-efficacy, and intention to engage in informed decision-making. Analysis: Descriptive statistics, paired t tests, general linear modeling, Spearman correlations. Results: On average, participants experienced significant improvements in their prostate cancer knowledge (P ≤ .001), informed decision-making self-efficacy (P ≤ .001), and technology use self-efficacy (P ≤ .001), postintervention. Additionally, 67% of participants reported an intention to engage in informed decision-making. Conclusion: Given the significant improvements across all measures, this research demonstrates that embodied conversational agent-led decision aids can be used to enhance the capacity for making informed prostate cancer screening decisions among African American men and increase their technology use self-efficacy. One critical limitation of this study is that most men had received prostate cancer screening prior to engaging in our intervention, so the implications of this intervention may be different for men who do not have a history of screening. Additionally, actual engagement in informed decision-making postintervention was not assessed.

Abstract A52: Receipt of adjuvant hormonal therapy among Medicaid enrollees diagnosed with hormone-receptor positive breast cancer, 2004-2007.

ABSTRACT Objective: The experience of an illness such as breast cancer is not a static event. Just as physiological needs change as a patient transitions through diagnosis, treatment, to long-term survivorship, so too will their needs for social support. We applied a transitions theory framework to explore how African American women with breast cancer conceptualized and experienced support along their breast cancer journey. Design: We recruited 16 African American women with breast cancer from a regional cancer center in South Carolina to complete qualitative, semi-structured interviews. We iteratively examined verbatim transcripts using thematic analysis. Results: Three core themes emerged: ‘I guess she was supposed to’: When support meets patient expectations; ‘I wasn’t expecting that and that just made me feel so good’: When reality exceeds expectations; and ‘Don’t try to make an invalid out of me’: When support given wasn’t what was desired. Survivors shared how their family, friends and clergy met their needs for emotional (e.g. prayer, sharing affirmations about God) and instrumental support (e.g. cooking meals, house cleaning). They emphasized how receiving emotional support from their healthcare providers was a pleasant surprise. However, survivors also described unexpected disappointments when family members offered support that was un-needed or un-desired. Conclusions: Applying transitions theory, we found that social support is a process of bidirectional negotiation where African American women with breast cancer perceive support as helpful and acceptable depending on who offers support, what type of support is offered, and when it is offered. Members of their social support network (e.g. family, friends, providers) should periodically assess the survivor’s evolving needs to ensure the social support harmonizes with the needs and expectations of the survivor.