Maria L. Jibaja-Weiss

Preferences for colorectal cancer screening among racially/ethnically diverse primary care patients.

Background:Incorporating patients’ preferences into colorectal cancer (CRC) screening recommendations has been identified as a potential mechanism for increasing adherence. This study used conjoint analysis to describe variation in CRC screening preferences among racially/ethnically diverse primary care patients. Methods:We recruited patients ages 50–80 of a large practice-based research network stratified by white, African American, or Hispanic race/ethnicity to complete a preference assessment instrument. Participants were asked to rate 8 hypothetical CRC screening test scenarios comprised of different combinations of 5 attributes and 6 scenarios designed to depict guideline-recommended CRC screening tests (eg, fecal occult blood test, flexible sigmoidoscopy, colonoscopy, and double contrast barium enema) including new technology (eg, virtual colonoscopy, fecal immunochemical test). Responses were used to calculate the overall importance of test attributes, the relative importance of attribute levels, and to identify factors associated with preferences. Results:Two hundred twelve primary care patients were recruited to the study (74 white, 60 African American, 78 Hispanic). Of the guideline-recommended tests, 37% preferred COL, 31% FOBT, 15% BE, and 9% SIG. Ratings of new technology tests were significantly (P < 0.05) higher than ratings of guideline-recommended tests. The order of the importance of attributes was: what the test involved (37%), accuracy (19%), frequency (17%), discomfort (15%), and preparation (13%). Part-worth utilities for 1 attribute showed that collecting a stool sample was most preferable and endoscopy without sedation least preferable. Multivariate regression found that race/ethnicity and specific test attributes were independently associated (P < 0.05) with test preferences. Conclusions:Primary care patients have distinct preferences for CRC screening tests that can be linked to test attributes. Racial/ethnic variations in test preferences persist when controlling for attributes. Tailoring screening recommendations to patients’ preferences may increase screening adherence.

Entertainment Education for Prostate Cancer Screening: A Randomized Trial among Primary Care Patients with Low Health Literacy

OBJECTIVE To evaluate an entertainment-based patient decision aid for prostate cancer screening among patients with low or high health literacy. METHODS Male primary care patients from two clinical sites, one characterized as serving patients with low health literacy (n=149) and the second as serving patients with high health literacy (n=301), were randomized to receive an entertainment-based decision aid for prostate cancer screening or an audiobooklet-control aid with the same learner content but without the entertainment features. Postintervention and 2-week follow-up assessments were conducted. RESULTS Patients at the low-literacy site were more engaged with the entertainment-based aid than patients at the high-literacy site. Overall, knowledge improved for all patients. Among patients at the low-literacy site, the entertainment-based aid was associated with lower decisional conflict and greater self-advocacy (i.e., mastering and obtaining information about screening) when compared to patients given the audiobooklet. No differences between the aids were observed for patients at the high-literacy site. CONCLUSION Entertainment education may be an effective strategy for promoting informed decision making about prostate cancer screening among patients with lower health literacy. PRACTICE IMPLICATIONS As barriers to implementing computer-based patient decision support programs decrease, alternative models for delivering these programs should be explored.

Entertainment education for breast cancer surgery decisions: a randomized trial among patients with low health literacy.

OBJECTIVE To evaluate an entertainment-based patient decision aid for early stage breast cancer surgery in low health literacy patients. METHODS Newly diagnosed female patients with early stage breast cancer from two public hospitals were randomized to receive an entertainment-based decision aid for breast cancer treatment along with usual care (intervention arm) or to receive usual care only (control arm). Pre-decision (baseline), pre-surgery, and 1-year follow-up assessments were conducted. RESULTS Patients assigned to the intervention arm of the study were more likely than the controls to choose mastectomy rather than breast-conserving surgery; however, they appeared better informed and clearer about their surgical options than women assigned to the control group. No differences in satisfaction with the surgical decision or the decision-making process were observed between the patients who viewed the intervention and those assigned to the control group. CONCLUSIONS Entertainment education may be a desirable strategy for informing lower health literate women about breast cancer surgery options. PRACTICE IMPLICATIONS Incorporating patient decision aids, particularly computer-based decision aids, into standard clinical practice remains a challenge; however, patients may be directed to view programs at home or at public locations (e.g., libraries, community centers).

Do personal stories make patient decision aids more effective? A critical review of theory and evidence.

BackgroundPatient decision aids support people to make informed decisions between healthcare options. Personal stories provide illustrative examples of others’ experiences and are seen as a useful way to communicate information about health and illness. Evidence indicates that providing information within personal stories affects the judgments and values people have, and the choices they make, differentially from facts presented in non-narrative prose. It is unclear if including narrative communications within patient decision aids enhances their effectiveness to support people to make informed decisions.MethodsA survey of primary empirical research employing a systematic review method investigated the effect of patient decision aids with or without a personal story on people’s healthcare judgements and decisions. Searches were carried out between 2005-2012 of electronic databases (Medline, PsycINFO), and reference lists of identified articles, review articles, and key authors. A narrative analysis described and synthesised findings.ResultsOf 734 citations identified, 11 were included describing 13 studies. All studies found participants’ judgments and/or decisions differed depending on whether or not their decision aid included a patient story. Knowledge was equally facilitated when the decision aids with and without stories had similar information content. Story-enhanced aids may help people recall information over time and/or their motivation to engage with health information. Personal stories affected both “system 1” (e.g., less counterfactual reasoning, more emotional reactions and perceptions) and “system 2” (e.g., more perceived deliberative decision making, more stable evaluations over time) decision-making strategies. Findings exploring associations with narrative communications, decision quality measures, and different levels of literacy and numeracy were mixed. The pattern of findings was similar for both experimental and real-world studies.ConclusionsThere is insufficient evidence that adding personal stories to decision aids increases their effectiveness to support people’s informed decision making. More rigorous research is required to elicit evidence about the type of personal story that a) encourages people to make more reasoned decisions, b) discourages people from making choices based on another’s values, and c) motivates people equally to engage with healthcare resources.

Caregiver symptom burden: the risk of caring for an underserved patient with advanced cancer.

The growing diversity of the population of the United States and the high burden of cancer‐related symptoms reflect the need for caregiver research within underserved groups. In this longitudinal study, the authors assessed changes in symptom severity in caregivers and underserved minority patients diagnosed with advanced solid tumors who were being treated at public hospitals.

Tailored messages for breast and cervical cancer screening of low-income and minority women using medical records data

Barriers to screening and early detection often result in cancers in low-income and minority women diagnosed at stages too advanced for optimal treatment. This randomized controlled trial examined whether a personalized form (PF) letter containing generic cancer information and a personalized tailored (PT) letter containing minimally tailored individualized risk factor information based on medical records data affected breast and cervical cancer screening among 1574 urban low-income and minority women. The personalized form-letter group was significantly more likely to schedule a screening appointment and to have undergone a Pap test and mammography within 1 year after the intervention than were the tailored letter and control groups (P<0.001 for all comparisons). Personalized tailored letters that contain individualized cancer risk factor information may decrease the likelihood of receiving cancer screening among medically underserved low-income and minority women, but personalized form letters that contain generic cancer information may improve these rates in this disadvantaged population.

Adherence to diabetes self-care behaviors in English- and Spanish-speaking Hispanic men

We conducted a qualitative study to elicit attitudes, attributions, and self-efficacy related to diabetes self-care in both English- and Spanish-speaking Hispanic men. Transcripts from six focus groups (three in English and three in Spanish) were reviewed by the authors to extract principal and secondary themes. Participants could describe their medication and lifestyle regimens and were aware of whether they were adherent or nonadherent to physician recommendations. Lack of skills on how to incorporate diet and regular physical activity into daily living, lack of will power, and reluctance to change culturally rooted behaviors emerged as significant barriers to diabetes self-management. Medication adherence is for some men the principal diabetes self-care behavior. Nonadherence appeared to fit two profiles: 1) intentional, and 2) nonintentional. In both instances low self-efficacy emerged as a significant influence on attainment and maintenance of diabetes self-care goals. Participants also expressed a strong sense of fatalism regarding the course of their disease, and seemed to have little motivation to attempt long-term dietary control. Educational and counseling messages should stress that a diagnosis of diabetes is not a death sentence, and full functional capacity can be maintained with good control.

Utilizing Computerized Entertainment Education in the Development of Decision Aids for Lower Literate and Naïve Computer Users

Decision aids have been developed by using various delivery methods, including interactive computer programs. Such programs, however, still rely heavily on written information, health and digital literacy, and reading ease. We describe an approach to overcome these potential barriers for low-literate, underserved populations by making design considerations for poor readers and naïve computer users and by using concepts from entertainment education to engage the user and to contextualize the content for the user. The system design goals are to make the program both didactic and entertaining and the navigation and graphical user interface as simple as possible. One entertainment education strategy, the soap opera, is linked seamlessly to interactive learning modules to enhance the content of the soap opera episodes. The edutainment decision aid model (EDAM) guides developers through the design process. Although designing patient decision aids that are educational, entertaining, and targeted toward poor readers and those with limited computer skills is a complex task, it is a promising strategy for aiding this population. Entertainment education may be a highly effective approach to promoting informed decision making for patients with low health literacy.

Preliminary testing of a just-in-time, user-defined values clarification exercise to aid lower literate women in making informed breast cancer treatment decisions

Objective  To report on the initial testing of a values clarification exercise utilizing a jewellery box within a computerized patient decision aid (CPtDA) designed to assist women in making a surgical breast cancer treatment decision.

Social factors and barriers to self-care adherence in Hispanic men and women with diabetes

OBJECTIVE To explore quantitatively the extent to which social support, social norms and barriers are associated with self-efficacy and self-care adherence in Hispanic patients with diabetes and the extent to which these differ for men and women. METHODS Baseline survey data were collected from 248 low-SES, Hispanic men and women who were participants in a randomized controlled trial of a culturally targeted intervention for diabetes management. Students t, Pearson correlations and multiple regression were used to analyze the data. RESULTS Compared to men, women were less likely to receive support, faced more barriers, reported less self-efficacy and had lower levels of self-care adherence. Perceived support was consistently correlated with better self-efficacy in women but not men, even though men reported higher levels of support. CONCLUSION The lack of adequate support seems to be a fundamental barrier for Hispanic women with diabetes. PRACTICE IMPLICATIONS Health care providers should be sensitive to sociocultural influences in Hispanic groups that may facilitate mens self-care adherence, but could potentially hamper womens efforts. Interventions designed for Hispanics should augment womens support needs and address culture and social factors that may differentially impact the ability of men and women to manage their diabetes.