Shellie D. Ellis

Patient acceptability of genotypic testing for hemochromatosis in primary care

Purpose: Genetic screening can enable timely detection and treatment of hereditary hemochromatosis (HH). Little is known about patient acceptability of DNA testing as compared to conventional phenotypic testing.Methods: Within the HEIRS Study, a large primary-care screening study of HH and iron overload, we randomly assigned participants to receive brief information on either HH genotypic or phenotypic testing, and assessed the willingness to accept this test. The study was designed to recruit an equal number of African Americans and Caucasians.Results: A total of 2500 participants were recruited from waiting rooms of primary care practices; 2165 participants who self-identified as African Americans and Caucasians were included in the analyses. Overall, 56% had accepted a genotypic test versus 58% for a phenotypic test. Adjusting for Field Center (FC), age, gender, race, educational attainment, global health rating, and knowledge of the test, the odds ratio of accepting a genotypic versus phenotypic test was 0.85 (95% CI: 0.71, 1.02; P = 0.078). Characteristics associated with test acceptance were age 45–64 years, female gender, Caucasian race, self-rated health less than “very good”, and knowledge of the test. Test acceptance was associated with interest in knowing more about health (81%) and in helping family members (71%). Refusal reasons included a need to talk with a doctor (44%), concern about privacy (32%), and dislike of blood drawing (29%).Conclusion: In this diverse sample of primary care patients, stated acceptance of genotypic testing for HH mutations was similar to phenotypic testing for blood iron. Patient education regarding the nature of test, importance of disease detection, and privacy protection appear to be essential for achieving high rates of screening participation.

Receipt of National Comprehensive Cancer Network guideline-concordant prostate cancer care among African American and Caucasian American men in North Carolina.

African Americans have a higher incidence of prostate cancer and experience poorer outcomes compared with Caucasian Americans. Racial differences in care are well documented; however, few studies have characterized patients based on their prostate cancer risk category, which is required to differentiate appropriate from inappropriate guideline application.

Guidelines for the use of survivorship care plans: a systematic quality appraisal using the AGREE II instrument

BackgroundSurvivorship care plans (SCPs) are written treatment summaries and follow-up care plans that are intended to facilitate communication and coordination of care among survivors, cancer care providers, and primary care providers. A growing number of guidelines for the use of SCPs exist, yet SCP use in the United States remains limited. Limited use of SCPs may be due to poor quality of these guidelines. The purpose of the study was to evaluate the quality of guidelines for SCP use, tools that are intended to promote evidence-based medicine.MethodsWe conducted a comprehensive search of the literature using MEDLINE/PubMed, EMBASE (Excerpta Medica Database), and CINAHL (Cumulative Index to Nursing and Allied Health Literature) published through April 2014, in addition to grey literature sources and bibliographic and expert reviews. Guideline quality was assessed using the AGREE II instrument (Appraisal of Guidelines for Research and Evaluation, 2nd edition), a tool developed by an international group of scientists to advance the quality of clinical practice guidelines. To promote consistency with extant studies using the AGREE II instrument and to clearly and unambiguously identify potentially useful guidelines for SCP use, we also summarized AGREE II scores by strongly recommending, recommending, or not recommending the guidelines that we evaluated.ResultsOf 128 documents screened, we included 16 guidelines for evaluation. We did not strongly recommend any of the 16 guidelines that we evaluated; we recommended 5 and we did not recommend 11. Overall, guidelines scored highest on clarity of presentation (i.e., guideline language, structure, and format): Guidelines were generally unambiguous in their recommendations that SCPs should be used. Guidelines scored lowest on applicability (i.e., barriers and facilitators to implementation, implementation strategies, and resource implications of applying the guideline): Few guidelines discussed facilitators and barriers to guideline application; advice and tools for implementing guidelines were vague; and none explicitly discussed resource implications of implementing the guidelines.ConclusionsGuidelines often advocated survivorship care plan use without justification or suggestions for implementation. Improved guideline quality may promote survivorship care plan use.

A practice-centered intervention to increase screening for domestic violence in primary care practices

BackgroundInterventions to change practice patterns among health care professionals have had mixed success. We tested the effectiveness of a practice centered intervention to increase screening for domestic violence in primary care practices.MethodsA multifaceted intervention was conducted among primary care practice in North Carolina. All practices designated two individuals to serve as domestic violence resources persons, underwent initial training on screening for domestic violence, and participated in 3 lunch and learn sessions. Within this framework, practices selected the screening instrument, patient educational material, and content best suited for their environment. Effectiveness was evaluated using a pre/post cross-sectional telephone survey of a random selection of female patients from each practice.ResultsSeventeen practices were recruited and fifteen completed the study. Baseline screening for domestic violence was 16% with a range of 2% to 49%. An absolute increase in screening of 10% was achieved (range of increase 0 to 22%). After controlling for clustering by practice and other patient characteristics, female patients were 79% more likely to have been screened after the intervention (OR 1.79, 95% CI 1.43–2.23).ConclusionAn intervention that allowed practices to tailor certain aspects to fit their needs increased screening for domestic violence. Further studies testing this technique using other outcomes are needed.

Does Health Care Provider Screening for Domestic Violence Vary by Race and Income

Domestic violence (DV) affects approximately 25% of women in the United States with approximately 5.3 million incidents each year. DV advocates and national medical associations encourage health care providers (HCPs) to screen patients. To determine DV screening rates by race and income, patient race/ethnicity, income, and receipt of and receptiveness toward screening were measured. Patient preference for screening did not vary by race and varied little by income, but experience with screening did. Practices serving predominantly African American and lower income patients screened at higher rates. These findings seem driven by practice factors rather than differential treatment of individuals. Future research should focus on why certain types of practices screen more than others.

Potential determinants of health-care professionals' use of survivorship care plans: a qualitative study using the theoretical domains framework.

BackgroundSurvivorship care plans are intended to improve coordination of care for the nearly 14 million cancer survivors in the United States. Evidence suggests that survivorship care plans (SCPs) have positive outcomes for survivors, health-care professionals, and cancer programs, and several high-profile organizations now recommend SCP use. Nevertheless, SCP use remains limited among health-care professionals in United States cancer programs. Knowledge of barriers to SCP use is limited in part because extant studies have used anecdotal evidence to identify determinants. This study uses the theoretical domains framework to identify relevant constructs that are potential determinants of SCP use among United States health-care professionals.MethodsWe conducted semi-structured interviews to assess the relevance of 12 theoretical domains in predicting SCP use among 13 health-care professionals in 7 cancer programs throughout the United States with diverse characteristics. Relevant theoretical domains were identified through thematic coding of interview transcripts, identification of specific beliefs within coded text units, and mapping of specific beliefs onto theoretical constructs.ResultsWe found the following theoretical domains (based on specific beliefs) to be potential determinants of SCP use: health-care professionals’ beliefs about the consequences of SCP use (benefit to survivors, health-care professionals, and the system as a whole); motivation and goals regarding SCP use (advocating SCP use; extent to which using SCPs competed for health-care professionals’ time); environmental context and resources (whether SCPs were delivered at a dedicated visit and whether a system, information technology, and funding facilitated SCP use); and social influences (whether using SCPs is an organizational priority, influential people support SCP use, and people who could assist with SCP use buy into using SCPs). Specific beliefs mapped onto the following psychological constructs: outcome expectancies, intrinsic motivation, goal priority, resources, leadership, and team working.ConclusionsPrevious studies have explored a limited range of determinants of SCP use. Our findings suggest a more comprehensive list of potential determinants that could be leveraged to promote SCP use. These results are particularly timely as cancer programs face impending SCP use requirements. Future work should develop instruments to measure the potential determinants and assess their relative influence on SCP use.

Effect of state-mandated insurance coverage on accrual to community cancer clinical trials

Thirty-five U.S. states and territories have implemented policies requiring insurers to cover patient care costs in the context of cancer clinical trials; however, evidence of the effectiveness of these policies is limited. This study assesses the impact of state insurance mandates on clinical trial accrual among community-based practices participating in the NCI Community Clinical Oncology Program (CCOP), which enrolls approximately one-third of all NCI cancer trial participants. We analyzed CCOP clinical trial enrollment over 17 years in 37 states, 14 of which implemented coverage policies, using fixed effects least squares regression to estimate the effect of state policies on trial accrual among community providers, controlling for state and CCOP differences in capacity to recruit. Of 91 CCOPs active during this time, 28 were directly affected by coverage mandates. Average recruitment per CCOP between 1991 and 2007 was 95.1 participants per year (SD=55.8). CCOPs in states with a mandate recruited similar numbers of participants compared to states without a mandate. In multivariable analysis, treatment trial accrual among CCOPs in states that had implemented a coverage mandate, was not statistically different than accrual among CCOPs in states that did not implement a coverage mandate (β=2.95, p=0.681). State mandates did not appear to confer a benefit in terms of CCOP clinical trial accrual. State policies vary in strength, which may have diluted their effect on accrual. Nonetheless, policy mandates alone may not have a meaningful impact on participation in clinical trials in these states.

Implementing a palm pilot intervention for primary care providers: Lessons learned

The Personal Digital Assistance for Guideline Adherence (GLAD Heart) study was designed to test a strategy to improve quality of care through increased adherence to ATPIII cholesterol guidelines. This paper describes the overall study design including the multi-faceted intervention and outcome measures. Sixty-one primary care practices in NC were recruited and randomized to either a personal digital assistant-based cholesterol management intervention or an intervention similar in intensity and frequency of contact but focused on a hypertension clinical practice guideline. Installation and implementation of the technology intervention was challenging. Over the course of the study, there were 74 technical issues requiring assistance for the palm pilot from 23 participating practices. The GLAD Heart project was completed successfully with some impact on cholesterol management. Technology has the potential to improve the quality of care provided in the healthcare setting. However, potentially expensive interventions such as that conducted in GLAD Heart should undergo rigorous testing to assure their efficacy before widespread adoption.

Gonadotropin-releasing hormone agonist overuse: Urologists' response to reimbursement and characteristics associated with persistent overuse

Background:Medicare reimbursement cuts have been associated with declining gonadotropin-releasing hormone (GnRH) agonist overuse in localized prostate cancer. Medical school affiliation and foreign training have been associated with persistent overuse. However, physician-level prescribing changes and the practice type of persistent overusers have not been examined. We sought to describe physician-level changes in GnRH agonist overuse and test the association of time in practice and solo practice type with GnRH agonist overuse.Methods:We matched American Medical Association physician data for 2138 urologists to Surveillance, Epidemiology and End Result-Medicare data for 12 943 men diagnosed with early-stage and lower-grade adenocarcinoma of the prostate between 2000 and 2007. We conducted a population-based, retrospective study using multilevel modeling to control for patient and provider characteristics.Results:Three distinct patterns of GnRH agonist overuse were observed. Urologists’ time in practice was not associated with GnRH agonist overuse (odds ratio (OR) 0.89; 95% confidence interval (CI): 0.75–1.05). However, solo practice type (OR 1.65; 95% CI: 1.34–2.02), medical school affiliation (OR 0.65; 95% CI: 0.55–0.77) and patient race were. Compared with non-Hispanic whites, non-Hispanic blacks (OR 1.76; 95% CI: 1.37–2.27), Hispanics (OR 1.41; 95% CI: 1.12–1.79) and men of ‘other’ race (OR 1.44; 95% CI: 1.04–1.99) had greater odds of receiving unnecessary GnRH agonists.Conclusions:GnRH agonist overuse remains high among some urologists who may be professionally isolated and difficult to reach. These urologists treat more vulnerable populations, which may contribute to health disparities in prostate cancer treatment quality. Nonetheless, these findings provide guidance to develop interventions to address overuse in prostate cancer.

Crafting Appealing Text Messages to Encourage Colorectal Cancer Screening Test Completion: A Qualitative Study

Background mHealth interventions that incorporate text messages have great potential to increase receipt of preventive health services such as colorectal cancer screening. However, little is known about older adult perspectives regarding the receipt of text messages from their health care providers. Objective To assess whether older adults would value and access text messages from their physician’s practice regarding colorectal cancer screening. Methods We conducted four focus groups with 26 adults, aged 50 to 75 years, who had either recently completed or were overdue for colorectal cancer screening. A trained moderator followed a semistructured interview guide covering participant knowledge and attitudes regarding colorectal cancer screening, potential barriers to colorectal cancer screening, attitudes about receiving electronic communications from a doctor’s office, and reactions to sample text messages. Results Participant responses to three primary research questions were examined: (1) facilitators and barriers to colorectal cancer screening, (2) attitudes toward receiving text messages from providers, and (3) characteristics of appealing text messages. Two themes related to facilitators of colorectal cancer screening were perceived benefits/need and family experiences and encouragement. Themes related to barriers included unpleasantness, discomfort, knowledge gaps, fear of complications, and system factors. Four themes emerged regarding receipt of text messages from health care providers: (1) comfort and familiarity with technology, (2) privacy concerns/potential for errors, (3) impact on patient-provider relationship, and (4) perceived helpfulness. Many participants expressed initial reluctance to receiving text messages but responded favorably when shown sample messages. Participants preferred messages that contained content that was important to them and were positive and reassuring, personalized, and friendly to novice texters (eg, avoided the use of texting shorthand phrases and complicated replies); they did not want messages that contain bad news or test results. They wanted the ability to choose alternative options such as email or phone calls. Conclusions Older adults are receptive to receiving cancer screening text messages from health care providers. Sharing sample messages with patients may increase acceptance of this tool in the clinic setting. Supportive tailored text messaging reminders could enhance uptake of colorectal cancer screening by enhancing patient self-efficacy and providing cues to action to complete colonoscopy or fecal occult blood testing.