From DemenTia to DemenCia: Way More Than a Single Letter

Hispanic or Latino/a/x/e (H/L) individuals are at 1.5x risk for Alzheimer’s Disease and Related Dementias (ADRD) compared to non-H/L White individuals. Although H/L individuals make up roughly 18% of the U.S. population, they are vastly underrepresented in ADRD research. For example, less than 9% of individuals in the National Alzheimer's Coordinating Center (NACC) data set are H/L. Collaborative efforts like the ECHAR Network are working to increase the representation of H/L individuals in ADRD research across the U.S. A non-exhaustive list of barriers to H/L participation include limited health literacy, perspectives on aging, and preferences for family-centered care that aligns with H/L cultural values (e.g., familismo). For example, H/L individuals are less likely to have a medical conceptualization of the Spanish translation for dementia. The cognate “demencia” is more likely to be conflated with alternative meanings like insanity, which may create barriers when developing community-facing recruitment and study materials.

Health literacy and associated factors among undergraduates: A university-based cross-sectional study in Nepal

Health literacy is one of the most critical aspects of health promotion. Limited health literacy is also accounted for adverse health outcomes and a huge financial burden on society. However, a gap exists in the level of health literacy, especially among undergraduates. This study aimed to assess the levels of health literacy and its socio-demographic determinants among undergraduate students of Tribhuvan University, Nepal. A web-based cross-sectional survey was conducted among 469 undergraduate students from five institutes of Tribhuvan University, Nepal. The 16-item short version of the European Health Literacy Survey Questionnaire (HLS-EU-Q16) was used to measure students’ health literacy levels. Associated factors were examined using Chi-square tests followed by multivariate logistic regression analyses at the level of significance of 0.05. Nearly 61% of students were found to have limited health literacy (24.5% had “inadequate” and 36.3% had “problematic” health literacy). Female students (aOR = 1.6, 95% CI: 1.1–2.5), students from non-health related majors (aOR = 1.9, 95% CI: 1.2–3.0), students with unsatisfactory health status (aOR = 2.8, 95% CI: 1.7–4.5), students with poor financial status (aOR = 2.9, 95% CI: 1.2–6.8) and students with low self-esteem (aOR = 2.5, 95% CI: 1.5–4.1) were significantly more likely to have limited health literacy. The majority of the undergraduates were found to have limited health literacy. Gender, sector of study, self-rated health status, self-rated financial status, and self-esteem were significantly associated with limited health literacy. This study indicates university students should not be assumed to be health-literate and interventions to improve students’ health literacy especially for those whose majors are not health-related should be implemented. Further studies using a longer version of the health literacy survey questionnaire and qualitative methods to explore more on determinants of health literacy are recommended.

Assessment of Oral Chemotherapy Nonadherence in Chronic Myeloid Leukemia Patients Using Brief Measures in Community Cancer Clinics: A Pilot Study

The purpose of this pilot study was to assess Chronic Myeloid Leukemia (CML) patients’ adherence to, beliefs about, and barriers to oral anticancer agents (OAC) using brief self-report measures in community-based cancer clinics. Patients completed a structured interview including a health literacy assessment, a Brief Medication Questionnaire, two single-item self-report adherence questions, and the Medications Adherence Reasons Scale. Of the 86 participants, 88.4% were white; 55.8% male; mean age, 58.7 years; and 22.1% had limited health literacy. Nonadherence (missing at least one dose in the last week) was reported by 18.6% of participants and associated (p < 0.003) with less-than-excellent perceived ability to take CML medications (16.3%). Black participants reported more difficulty taking CML medications than white participants (28.6% vs. 8.3%, p = 0.053). Among all participants, 43.0% reported their CML medicine was ineffective and 24.4% that taking CML pills was somewhat to very hard. The most common reasons for missing a dose were simply missed it (24.4%) and side effects (18.6%). Most patients perceived their ability to take CML medication was good to excellent, yet nearly one in five reported missing at least one dose in the last week. Brief, no-cost self-report assessments to screen CML patients’ OAC adherence, barriers, and beliefs could facilitate counseling in busy community cancer clinics.

A Study on the Reliability and Validity of the Korean Health Literacy Instrument for Late School-Aged Children

This study aimed to develop and validate the Korean Health Literacy Instrument, which measures Korean late school-aged children’s understanding capacity. The construct’s concepts were drawn from the literature review and interviews with school nurses and teachers. A survey was then conducted in 552 fifth and sixth graders in nine elementary schools, from 1 to 9 May 2014. The KR-20 coefficient for reliability, difficulty index, discrimination index, item-total correlation, and known group technique for validity were performed. An exploratory factor analysis was performed to test the construct validity of the instrument and its unidimensionality. The results reveal that a two-factor structure was appropriate for the Korean school-age health literacy tool (root mean square error of approximation = 0.06, Comparative Fit Index = 0.96, and Tucker–Lewis Index = 0.95). From the remaining 16 items, the internal consistency reliability coefficient of this instrument was 0.85, and the criterion-related validity was 0.62 (p < 0.001). The Korean health literacy instrument for late school-aged children was suitable for screening individuals who have limited health literacy. Based on the findings of this study, future studies must continue to conduct empirical investigations on the Korean health literacy instrument for late school-aged children

Developing an Asthma Self-management Intervention Through a Web-Based Design Workshop for People With Limited Health Literacy: User-Centered Design Approach

Background Technology, including mobile apps, has the potential to support self-management of long-term conditions and can be tailored to enhance adoption. We developed an app to support asthma self-management among people with limited health literacy in a web-based workshop (to ensure physical distancing during the COVID-19 pandemic). Objective The aim of this study is to develop and test a prototype asthma self-management mobile app tailored to the needs of people with limited health literacy through a web-based workshop. Methods We recruited participants from a primary care center in Malaysia. We adapted a design sprint methodology to a web-based workshop in five stages over 1 week. Patients with asthma and limited health literacy provided insights into real-life self-management issues in stage 1, which informed mobile app development in stages 2-4. We recruited additional patients to test the prototype in stage 5 using a qualitative research design. Participants gave feedback through a concurrent thinking-aloud process moderated by a researcher. Each interview lasted approximately 1 hour. Screen recordings of app browsing activities were performed. Interviews were audio-recorded and analyzed using a thematic approach to identify utility and usability issues. Results The stakeholder discussion identified four themes: individual, family, friends, and society and system levels. Five patients tested the prototype. Participants described 4 ways in which the app influenced or supported self-management (utility): offering information, providing access to an asthma action plan, motivating control of asthma through support for medication adherence, and supporting behavior change through a reward system. Specific usability issues addressed navigation, comprehension, and layout. Conclusions This study proved that it was possible to adapt the design sprint workshop to a web-based format with the added advantage that it allowed the development and the testing process to be done efficiently through various programs. The resultant app incorporated advice from stakeholders, including sources for information about asthma, medication and appointment reminders, accessible asthma action plans, and sources for social support. The app is now ready to move to feasibility testing.

The Prevalence of Limited Health Literacy and Its Associated Factors among Elderly Patients Attending an Urban Academic Primary Care Clinic in Malaysia

Limited health literacy (HL) is linked to many negative health outcomes, including poor self-management of chronic diseases and medication adherence among patients. There are a lack of data regarding HL in the elderly population in Malaysia. This study aimed to determine the prevalence of limited HL levels and its associated factors among elderly patients in an urban academic primary care clinic in Selangor, Malaysia. A cross-sectional study was conducted among 413 elderly patients (≥60 years old) who attended this academic primary care clinic between January 2020 and January 2021. Sociodemographic data, clinical characteristics, and health literacy scores were collected. Descriptive statistics (median with interquartile ranges (IQR), frequency, and percentages) and multiple logistic regression were utilized. The prevalence of limited HL in our population was 19.1% (95% CI: 15.3, 23). The middle-old (70–79 years) and very-old (≥80 years) age groups were more likely to have limited HL (aOR 4.05; 95% CI: 2.19, 7.52 and aOR 4.36; 95% CI: 1.02, 18.63, respectively). Those with at least secondary school education (aOR 0.06; 95% CI: 0.02, 0.24) and those who found medical information via the internet/television (aOR 0.21; 95% CI: 0.05, 0.93) had lower odds of having limited HL. In conclusion, having limited HL levels was not common among elderly patients in this primary care clinic. Further studies involving rural and larger primary care clinics in Malaysia are required to support these findings.

A review of clinical trials of advance care planning interventions adapted for limited health literacy

Objectives Advance care planning is vital for ensuring individuals receive end-of-life care that is consistent with their care preferences and improves patient quality of life and satisfaction with care; however, only 11% of Americans have discussed advance care planning with a healthcare provider. Individuals with limited health literacy are even less likely to participate in advance care planning due to difficulty comprehending complex health information. The purpose of this review was to identify randomized controlled trials designed to address the effects of limited health literacy on advance care planning, evaluate the quality of these studies, and summarize evaluation data to inform future studies. Methods This systematic review examined randomized controlled trials published from January 1997 to July 2020 using the PubMed, CINAHL, PsycINFO, and Scopus databases. Data were extracted and two reviewers independently evaluated the quality of studies using the Joanna Briggs Institute Critical Appraisal Tool. Results The database search yielded 253 studies and five studies were included in the final review. Studies were conducted in mostly White patients in outpatient clinics in the United States. Researchers wrote text at lower reading levels, added images to materials, and created videos to enhance communication. Health literacy interventions increased participant knowledge, preference for comfort care, engagement, and care documentation; however, several methodological issues were identified, including baseline differences in treatment and control groups, issues with blinding, lack of valid and reliable outcome measures, and inappropriate statistical analyses. Significance of results More high-quality intervention studies that address the effects of limited health literacy on advance care planning in diverse populations and settings are needed. Future intervention studies should use reliable and valid instruments to measure advance care planning outcomes. Clinicians should use materials appropriate for their patients’ health literacy levels to address their advance care planning needs.