Rebecca L. Sudore

Redefining the “Planning” in Advance Care Planning: Preparing for End-of-Life Decision Making

The traditional objective of advance care planning has been to have patients make treatment decisions in advance so that clinicians can attempt to provide care consistent with their goals. The authors contend that the objective for advance care planning ought to be the preparation of patients and surrogates to participate with clinicians in making the best possible in-the-moment medical decisions. They provide practical steps for clinicians to help patients and surrogate decision makers achieve this objective in the outpatient setting. Preparation for in-the-moment decision making shifts the focus from having patients make premature decisions based on incomplete information to preparing them and their surrogates for the types of decisions and conflicts they may encounter when they do have to make in-the-moment decisions. Advance directives, although important, are just one piece of information to be used at the time of decision making.

Limited literacy and mortality in the elderly: the health, aging, and body composition study.

BACKGROUND: While limited literacy is common and its prevalence increases with age, no prospective study has assessed whether limited literacy is associated with mortality in older adults.OBJECTIVE: To assess the association of limited literacy with mortality.DESIGN AND SETTING: Five-year prospective study from 1999 to 2004 of community-dwelling elders from Memphis, TN, and Pittsburgh, PA, who were from the Health, Aging, and Body Composition study. Subjects’ literacy was assessed with the Rapid Estimate of Adult Literacy in Medicine. Scores were categorzied into limited (0 to 8th grade reading level) or adequate literacy (≥9th grade reading level).PARTICIPANTS: Two thousand five hundred and twelve black and white elders without baseline functional difficulties or dementia.MEASUREMENTS: Time to death.RESULTS: Participants’ mean age was 75.6 years, 48% were male, 38% were black, and 24% had limited literacy; the median follow-up time was 4.2 years. Compared with those with adequate literacy, those with limited literacy had a higher risk of death (19.7% vs 10.6%) with a hazard ratio (HR) of 2.03 (95% confidence intervals [CI], 1.62 to 2.55). After adjusting for demographics and socioeconomic status, co-morbid conditions, self-rated health status, health-related behaviors, health care access measures, and psychosocial status, limited literacy remained independently associated with mortality (HR 1.75; 95% CI, 1.27 to 2.41).CONCLUSIONS: Limited literacy is independently associated with a nearly 2-fold increase in mortality in the elderly. Given the growth of the aging population and the prevalence of chronic diseases, the mechanisms by which limited literacy is associated with mortality in the elderly warrant further investigation.

Limited Literacy in Older People and Disparities in Health and Healthcare Access

OBJECTIVES: To determine the relationship between health literacy, demographics, and access to health care.

Interventions to improve patient comprehension in informed consent for medical and surgical procedures: a systematic review

Background. Patient understanding in clinical informed consent is often poor. Little is known about the effectiveness of interventions to improve comprehension or the extent to which such interventions address different elements of understanding in informed consent. Purpose. To systematically review communication interventions to improve patient comprehension in informed consent for medical and surgical procedures. Data Sources. A systematic literature search of English-language articles in MEDLINE (1949–2008) and EMBASE (1974–2008) was performed. In addition, a published bibliography of empirical research on informed consent and the reference lists of all eligible studies were reviewed. Study Selection. Randomized controlled trials and controlled trials with nonrandom allocation were included if they compared comprehension in informed consent for a medical or surgical procedure. Only studies that used a quantitative, objective measure of understanding were included. All studies addressed informed consent for a needed or recommended procedure in actual patients. Data Extraction. Reviewers independently extracted data using a standardized form. All results were compared, and disagreements were resolved by consensus. Data Synthesis. Forty-four studies were eligible. Intervention categories included written information, audiovisual/multimedia, extended discussions, and test/feedback techniques. The majority of studies assessed patient understanding of procedural risks; other elements included benefits, alternatives, and general knowledge about the procedure. Only 6 of 44 studies assessed all 4 elements of understanding. Interventions were generally effective in improving patient comprehension, especially regarding risks and general knowledge. Limitations. Many studies failed to include adequate description of the study population, and outcome measures varied widely. Conclusions. A wide range of communication interventions improve comprehension in clinical informed consent. Decisions to enhance informed consent should consider the importance of different elements of understanding, beyond procedural risks, as well as feasibility and acceptability of the intervention to clinicians and patients. Conceptual clarity regarding the key elements of informed consent knowledge will help to focus improvements and standardize evaluations.

Use of a Modified Informed Consent Process among Vulnerable Patients: A Descriptive Study

BACKGROUND: Little is known about patient characteristics associated with comprehension of consent information, and whether modifications to the consent process can promote understanding.OBJECTIVE: To describe a modified research consent process, and determine whether literacy and demographic characteristics are associated with understanding consent information.DESIGN: Descriptive study of a modified consent process: consent form (written at a sixth-grade level) read to participants, combined with 7 comprehension questions and targeted education, repeated until comprehension achieved (teach-to-goal).PARTICIPANTS: Two hundred and four ethnically diverse subjects, aged ≥50, consenting for a trial to improve the forms used for advance directives.MEASUREMENTS: Number of passes through the consent process required to achieve complete comprehension. Literacy assessed in English and Spanish with the Short Form Test of Functional Health Literacy in Adults (scores 0 to 36).RESULTS: Participants had a mean age of 61 years and 40% had limited literacy (s-TOHFLA<23). Only 28% of subjects answered all comprehension questions correctly on the first pass. After adjustment, lower literacy (P=.04) and being black (P=.03) were associated with requiring more passes through the consent process. Not speaking English as a primary language was associated with requiring more passes through the consent process in bivariate analyses (P<.01), but not in multivariable analyses (P>.05). After the second pass, most subjects (80%) answered all questions correctly. With a teach-to-goal strategy, 98% of participants who engaged in the consent process achieved complete comprehension.CONCLUSIONS: Lower literacy and minority status are important determinants of understanding consent information. Using a modified consent process, little additional education was required to achieve complete comprehension, regardless of literacy or language barriers.

A Clinical Framework for Improving the Advance Care Planning Process: Start with Patients’ Self-identified Barriers

OBJECTIVES: To explore barriers to multiple advance care planning (ACP) steps and identify common barrier themes that impede older adults from engaging in the process as a whole.

Advance Care Planning and the Quality of End‐of‐Life Care in Older Adults

To determine whether advance care planning influences quality of end‐of‐life care.

Unraveling the relationship between literacy, language proficiency, and patient–physician communication ☆ ☆☆

OBJECTIVE To examine whether the effect of health literacy (HL) on patient-physician communication varies with patient-physician language concordance and communication type. METHODS 771 outpatients rated three types of patient-physician communication: receptive communication (physician to patient); proactive communication (patient to physician); and interactive, bidirectional communication. We assessed HL and language categories including: English-speakers, Spanish-speakers with Spanish-speaking physicians (Spanish-concordant), and Spanish-speakers without Spanish-speaking physicians (Spanish-discordant). RESULTS Overall, the mean age of participants was 56 years, 58% were women, 53% were English-speakers, 23% Spanish-concordant, 24% Spanish-discordant, and 51% had limited HL. Thirty percent reported poor receptive, 28% poor proactive, and 56% poor interactive communication. In multivariable analyses, limited HL was associated with poor receptive and proactive communication. Spanish-concordance and discordance was associated with poor interactive communication. In stratified analyses, among English-speakers, limited HL was associated with poor receptive and proactive, but not interactive communication. Among Spanish-concordant participants, limited HL was associated with poor proactive and interactive, but not receptive communication. Spanish-discordant participants reported the worst communication for all types, independent of HL. CONCLUSION Limited health literacy impedes patient-physician communication, but its effects vary with language concordance and communication type. For language discordant dyads, language barriers may supersede limited HL in impeding interactive communication. PRACTICE IMPLICATIONS Patient-physician communication interventions for diverse populations need to consider HL, language concordance, and communication type.

Validation of Self-Reported Health Literacy Questions Among Diverse English and Spanish-Speaking Populations

BackgroundLimited health literacy (HL) contributes to poor health outcomes and disparities, and direct measurement is often time-intensive. Self-reported HL questions have not been validated among Spanish-speaking and diverse English-speaking populations.ObjectiveTo evaluate three self-reported questions:1 “How confident are you filling out medical forms?”;2 “How often do you have problems learning about your medical condition because of difficulty understanding written information?”; and3 “How often do you have someone help you read hospital materials?” Answers were based on a 5-point Likert scale.DesignThis was a validation study nested within a trial of diabetes self-management support in the San Francisco Department of Public Health.ParticipantsEnglish and Spanish-speaking adults with type 2 diabetes receiving primary care.MethodsUsing the Test of Functional Health Literacy in Adults (s-TOFHLA) in English and Spanish as the reference, we classified HL as inadequate, marginal, or adequate. We calculated the C-index and test characteristics of the three questions and summative scale compared to the s-TOFHLA and assessed variations in performance by language, race/ethnicity, age, and education.Key ResultsOf 296 participants, 48% were Spanish-speaking; 9% were White, non-Hispanic; 47% had inadequate HL and 12% had marginal HL. Overall, 57% reported being confident with forms “somewhat” or less. The “confident with forms” question performed best for detecting inadequate (C-index = 0.82, (0.77-0.87)) and inadequate plus marginal HL (C index = 0.81, (0.76-0.86); p < 0.01 for differences from other questions), and performed comparably to the summative scale. The “confident with forms” question and scale also performed best across language, race/ethnicity, educational attainment, and age.ConclusionsA single self-reported HL question about confidence with forms and a summative scale of three questions discriminated between Spanish and English speakers with adequate HL and those with inadequate and/or inadequate plus marginal HL. The “confident with forms” question or the summative scale may be useful for estimating HL in clinical research involving Spanish-speaking and English-speaking, chronically-ill, diverse populations.

Correlates of Quality of Life in Older Adults With Diabetes: The Diabetes & Aging Study

OBJECTIVE To evaluate associations between health-related quality of life (HRQL) and geriatric syndromes, diabetes complications, and hypoglycemia in older adults with diabetes. RESEARCH DESIGN AND METHODS A race-stratified random sample of 6,317 adults with type 2 or type 1 diabetes, aged 60 to 75 years, enrolled in Kaiser Permanente Northern California, who completed a survey that included a HRQL instrument based on the Short Form 8-item health survey. Administrative records were used to ascertain diagnoses of geriatric syndromes, diabetes complications, and hypoglycemia. Associations were estimated between HRQL and exposures in exposure-specific and combined exposure models (any syndrome, any complication, or hypoglycemia). Conservatively, differences of ≥3 points were considered the minimally important difference in HRQL scores. RESULTS HRQL was lower with nearly all exposures of interest. The lowest physical HRQL was associated with amputation. In combined exposure models, geriatric syndromes (−5.3 [95% CI −5.8 to −4.8], P < 0.001) and diabetes complications (−3.5 [−4.0 to −2.9], P < 0.001) were associated with lower physical HRQL. The lowest mental HRQL was associated with depression, underweight (BMI <18 kg/m2), amputation, and hypoglycemia. In combined exposure models, only hypoglycemia was associated with lower mental HRQL (−4.0 [−7.0 to −1.1], P = 0.008). CONCLUSIONS Geriatric syndromes and hypoglycemia are associated with lower HRQL to a comparable degree as diabetes complications. Addressing geriatric syndromes and avoiding hypoglycemia should be given as high a priority as preventing diabetes complications in older adults with diabetes.