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.     

‘Very difficult for an ordinary guy’: Factors influencing the quality of treatment decision-making amongst men diagnosed with localised and locally advanced prostate cancer: Findings from a UK-wide mixed methods study

Objectives

To explore experiences of treatment decision-making (TDM) amongst men diagnosed with stage 1–3 prostate cancer.

Analyzing paths from online health information seeking to colorectal cancer screening using health literacy skills frame and cognitive mediation model

Objective

To test the hypothesized paths for Online Health Information Seeking (OHIS) behaviors in developing health literacy, leading to colorectal cancer (CRC) screening among Korean Americans (KAs) using Health Literacy Skills Frameworks (HLSF) and Cognitive Mediation Model (CMM).

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).     

Longitudinal regret and information satisfaction after deciding on treatment for localized prostate cancer with or without a decision aid. Results at one-year follow-up in the PCPCC trial

Objective

To investigate the effect of including an online decision aid (DA) during prostate cancer treatment counseling on decisional regret and information satisfaction in a one-year follow-up.

Development and pilot-testing of a colorectal cancer screening decision aid for individuals with varying health literacy levels

ObjectiveMaking an informed decision about colorectal cancer screening requires health literacy. Our aim was to develop and pilot-test a computer-based decision aid to support informed decision making about whether or not to participate in colorectal cancer screening for individuals with varying health literacy levels in the Netherlands.MethodsFirst, we designed and adapted the decision aid prototype among 25 individuals with low (n = 15) and adequate (n = 10) health literacy. Second, we used a before/after study to assess changes in knowledge, attitude, intention, decisional conflict, deliberation, anxiety and risk perception in an online survey among 81 individuals eligible for colorectal cancer screening with low (n = 35) and adequate (n = 46) health literacy.ResultsThe decision aid was acceptable, comprehensible, reduced decisional conflict, increased deliberation and improved knowledge about colorectal cancer screening, but not about colorectal cancer, among individuals with adequate and low health literacy. Usability was slightly higher for participants with adequate health literacy compared to those with low health literacy.ConclusionThe decision aid is promising in supporting informed decision making about colorectal cancer screening, also among individuals with lower health literacy.Practice implicationsFurther refinement of interactive features, such as videos, animations and the values clarification exercise, is needed to increase the usability of the decision aid.     

The relationship between health literacy and perceived shared decision making in patients with breast cancer

Objectives

We explored the relationship between patient-perceived shared decision making (SDM) and three domains of health literacy (HL) in patients with breast cancer.

Education level, not health literacy, associated with information needs for patients with cancer

Objective

Cancer patients receiving adjuvant therapy encounter increasingly complex situations and decisions with each new procedure and therapy. To make informed decisions about care, they need to be able to access, process, and understand information. Individuals with limited health literacy may not be able to obtain or understand important information about their cancer and treatment. The rate of low health literacy has been shown to be higher among African Americans than among non-Hispanic Whites. This study examined the associations between race, health literacy, and self-reported needs for information about disease, diagnostic tests, treatments, physical care, and psychosocial resources.

Methods

Measures assessing information needs were administered to 138 newly diagnosed cancer patients. Demographics were assessed by survey and health literacy was assessed with two commonly used measures: the Rapid Estimate Adult Literacy in Medicine (REALM) and the Short Test of Health Literacy in Adults (STOFHLA).

Results

Study findings indicate that educational attainment, rather than health literacy, is a significant predictor of information needs.

Conclusion

Overcoming barriers to information needs may be less dependent on literacy considerations and more dependent on issues that divide across levels of educational attainment.

Practice implications

Oncologists and hospital staff should be attentive to the fact that many patients require additional assistance to meet their information needs.     

Validation of health literacy domains for informed decision making about colorectal cancer screening using classical test theory and item response theory

ObjectiveTo construct and validate a computer-based and performance-based instrument to assess health literacy skills for informed decision making in colorectal cancer screening among screening invitees.MethodsAn instrument was constructed based on a conceptual framework of health literacy skills in colorectal cancer screening and findings from an expert survey. The instrument was field-tested among individuals with low health literacy (n = 28). Its validity and reliability was assessed using classical test theory and item response theory approaches in an online panel of colorectal cancer screening invitees (n = 696).ResultsConfirmatory factor analysis confirmed four separate factors: Comprehension, Application, Numeracy and Communication. A fifth domain (Appraisal) demonstrated poor reliability and validity and was omitted in further analyses. Internal consistency (Cronbach’s alpha > 0.6 for the four scales) was acceptable and test-retest reliability was moderate. The four factors were measurement invariant for age, sex and educational level.ConclusionThe computer-based measures were acceptable for self-administration. The constructed multidimensional health literacy instrument showed acceptable measurement properties.Practice implicationsOur findings imply that the computer-based instrument can be used for the development of interventions to support informed decision making about colorectal cancer screening among individuals with varying health literacy levels. Further research is needed for optimizing performance-based measurement of the Appraisal and Communication domains.     

Functional health literacy mediates the relationship between socio-economic status,perceptions and lifestyle behaviors related to cancer risk in an Australian population

Objective

To determine if functional health literacy (FHL) mediates the relationship between socio-economic status, and perception of the risk of lifestyle behaviors for cancer.

Methods

Cross-sectional, random population survey, 2824 people aged ≥15 years, September–October 2008, included newest vital sign measure of FHL.

Results

Less than adequate FHL occurred in 45.1%. People who perceived behavioral factors (smoking, diet, obesity, alcohol, physical activity) to be not important, or did not know if they were important cancer risks, were more likely to have inadequate FHL. In a logistic regression model adjusted for age, gender, education, income, occupation, country of birth and area of residence, inadequate FHL was associated with 2–3 (OR = 1.9; 95% CI: 1.2–3.0) and 4 or more self-reported lifestyle risk factors (OR = 2.8; 95% CI: 1.6–5.0). In a structural equation model of the relationship of socio-economic status, perceptions of risk and behaviors there was significant mediation effect of FHL on the path from SES to health perceptions, estimated 29.4% of the total effect.

Conclusion

A specific focus on the literacy demands made on individuals from health promotion and materials with a view to improving health communication is indicated.

Practice implications

Health literacy is important for health promotion.     

Health literacy and self-efficacy for participating in colorectal cancer screening: The role of information processing

Objective

This study aimed to document the association between health literacy and willingness and ability to seek information about the new colorectal cancer (CRC) screening program in the UK.¹ We also assessed self-efficacy for screening to determine the impact of health literacy on perceived confidence to take part in screening.

Methods

Ninety-six participants aged 50–69 years completed the British version of the Test of Functional Health Literacy in Adults (TOFHLA) (UK-TOFHLA) and used an interactive information menu to select information on why and how to participate in CRC screening. We derived a measure of reading effort by calculating the average amount of time spent reading individual information links. Each participant also completed a measure of comprehension, and self-efficacy for participating in screening.

Results

A multivariate analysis supported the hypothesis that lower health literacy would be associated with less information-seeking (b = .079, 95% confidence interval, .001–.157) greater effort in reading (b = −.965, 95% CI, −1.457 to −.473) and less self-efficacy for CRC screening (b = .61, 95% CI, .009–.131).

Conclusion

Lower health literacy had a direct impact on information-seeking. It was also independently associated with perceived confidence to participate in screening.

Practice implications

Reliance on printed communication when inviting low literate adults for screening can be problematic. The independent association between health literacy and self-efficacy further adds to the challenge of developing accessible and effective health promotion materials in this area.     

Accessibility of standardized information of a national colorectal cancer screening program for low health literate screening invitees: A mixed method study

ObjectiveTo explore the accessibility of standardized printed information materials of the national Dutch colorectal cancer screening program among low health literate screening invitees and to assess the effect of the information on their knowledge about colorectal cancer and the screening program.MethodsLinguistic tools were used to analyze the text and design characteristics. The accessibility, comprehensibility and relevance of the information materials were explored in interviews and in observations (n = 25). The effect of the information on knowledge was assessed in an online survey (n = 127).ResultsThe materials employed a simple text and design. However, respondents expressed problems with the amount of information, and the difference between screening and diagnostic follow-up. Knowledge significantly increased in 10 out of 16 items after reading the information but remained low for colorectal cancer risk, sensitivity of testing, and the voluntariness of colorectal cancer screening.ConclusionDespite intelligible linguistic and design characteristics, screening invitees with low health literacy had problems in accessing, comprehending and applying standard information materials on colorectal cancer screening, and lacked essential knowledge for informed decision-making about participation.Practice implicationsTo enable equal access to informed decision-making, information strategies need to be adjusted to the skills of low health literate screening invitees.     

Development and preliminary evaluation of a bowel cancer screening decision aid for adults with lower literacy

Objective

Several countries have recently implemented national bowel cancer screening programs. To ensure equal access to screening, information is needed to suit adults ranging in literacy level. Decision aids are effective in providing balanced information and have been applied in screening. However, few have been designed for populations with lower education and literacy. This article describes the development and preliminary evaluation of a bowel cancer screening decision aid for this group.

Method

We conducted face-to-face interviews with adults of varying literacy ability, to develop the decision aid (Stage 1). We applied principles of plain language, created visual illustrations to support key textual messages, and used colour coding to direct the reader through the booklet. We then explored its acceptability and comprehension among consumers with higher and lower education (Stage 2). Participants were recruited from a community sample with lower education and a university alumni network.

Results

A total of 75 participants were interviewed, 43 with lower educational attainment and 32 with university education. The decision aid was positively reviewed by both education groups. Results highlighted the need to clarify the purpose of the decision aid and the availability of choice in the context of screening, especially to those with lower education.

Conclusion

The 2 stage iterative development process identified important factors to consider in the development of decision tools for this target group, and is recommended.

Practice implications

Our findings have implications for how to support people with lower education and literacy make informed screening decisions.     

The value of second-opinion pathology diagnoses on prostate biopsies from patients referred for management of prostate cancer

Gleason score (GS) (sum of primary plus secondary grades) is used to predict patients' clinical outcome and to customize treatment strategies for prostate cancer (PC). However, due in part to pathologist misreading, there is significant discrepancy of GS between needle-core biopsies (NCB) and radical prostatectomy specimens. We assessed the requirement for re-evaluating NCB diagnosed by outside pathologists in patients referred to our institution for management of PC. In 100 patients, we reviewed both their original "outside" and second-opinion ("in-house") diagnoses of the same NCB specimens, and compared them with the diagnoses of the whole-mount radical prostatectomy (WMRP) specimens (gold standard for analysis). We found that both outside and in-house biopsy GS vary significantly from the WMRP diagnoses, with GS undergrading substantially predominating above overgrading. Statistical analysis demonstrated that the main diagnostic discrepancy was in the differentiation between primary and secondary Gleason grades (mainly 3 and 4) and that outside NCB GS was significantly less accurate with respect to the WMRP specimens than the in-house NCB GS. In addition, in a different cohort of 65 NCB cases, we found that in 5 out of 11 patients, outside pathologists failed to report the presence of extraprostatic extension, an important feature for diagnosis of a higher pathology stage (pT3a). Since histopathological evaluation is a critical factor for appropriate treatment selection, we recommend that a re-evaluation by in-house urologic pathologists should be performed in all outside NCB specimens before patients are admitted for treatment in any given institution.     

Access to health information,health literacy and health-related quality of life among women living with breast cancer: Depression and anxiety as mediators

ObjectiveThis study examined the direct and indirect influences of health literacy and access to health information on the quality of life among 205 women living with breast cancer in Ghana.MethodsA cross-sectional survey design was employed. The interviewer-administered instrument included the health literacy scale, questions on access and satisfaction with healthcare information, depression and anxiety scale, and the Functional Assessment of Cancer Therapy-Breast Cancer.ResultsAccess to health information and health literacy had significant indirect effects on quality of life through depression and anxiety. Whereas health literacy had direct influence on quality of life after controlling for other factors, access to information had no direct influence on quality of life.ConclusionHealth literacy and access to health information improve quality of life in women living with breast cancer by reducing the levels of depression and anxiety. Depression and anxiety serve as possible mechanisms for the positive impacts of access to health information and health literacy on improved quality of life among breast cancer patients.Practice implicationsHealth care providers need to ensure that the information needs of patients are met in oncology practice to reduce their negative emotional states which would lead to improved health and wellbeing.     

Fostering informed decisions: A randomized controlled trial assessing the impact of a decision aid among men registered to undergo mass screening for prostate cancer

Objective

Screening asymptomatic men for prostate cancer is controversial and informed decision making is recommended. Within two prostate cancer screening programs, we evaluated the impact of a print-based decision aid (DA) on decision-making outcomes.

Methods

Men (N = 543) were 54.9 (SD = 8.1) years old and 61% were African-American. The 2(booklet type: DA vs. usual care (UC)) × 2(delivery mode: Home vs. Clinic) randomized controlled trial assessed decisional and screening outcomes at baseline, 2-months, and 13-months.

Results

Intention-to-treat linear regression analyses using generalized estimating equations revealed that DA participants reported improved knowledge relative to UC (B = .41, p < .05). For decisional conflict, per-protocol analyses revealed a group by time interaction (B = −.69, p < .05), indicating that DA participants were less likely to report decisional conflict at 2-months compared to UC participants (OR = .49, 95% CI: .26–.91, p < .05).

Conclusion

This is the first randomized trial to evaluate a DA in the context of free mass screening, a challenging setting in which to make an informed decision. The DA was highly utilized by participants, improved knowledge and reduced decisional conflict.

Practice implications

These results are valuable in understanding ways to improve the decisions of men who seek screening and can be easily implemented within many settings.