Addressing Health Literacy in Patient Decision Aids: An Update from the International Patient Decision Aid Standards

Background There is increasing recognition of the importance of addressing health literacy in patient decision aid (PtDA) development. Purpose An updated review as part of IPDAS 2.0 examined the extent to which PtDAs are designed to meet the needs of people with low health literacy/socially-disadvantaged populations. Data Sources Reference lists of Cochrane reviews of randomized controlled trials (RCTs) of PtDAs (2014, 2017, and upcoming 2021 versions). Study Selection RCTs that assessed the impact of PtDAs on low health literacy or other socially-disadvantaged groups (i.e., ≥50% participants from socially-disadvantaged groups and/or subgroup analysis in socially-disadvantaged group/s). Data Extraction Two researchers independently extracted data into a standardized form including PtDA development and evaluation details. We searched online repositories and emailed authors to access PtDAs to verify grade reading level, understandability, and actionability. Data Synthesis Twenty-five of 213 RCTs met the inclusion criteria, illustrating that only 12% of studies addressed the needs of low health literacy or other socially-disadvantaged groups. Grade reading level was calculated in 8 of 25 studies (33%), which is recommended in previous IPDAS guidelines. We accessed and independently assessed 11 PtDAs. None were written at sixth-grade level or below. Ten PtDAs met the recommended threshold for understandability, but only 5 met the recommended threshold for actionability. We also conducted a post hoc subgroup meta-analysis and found that knowledge improvements after receiving a PtDA were greater in studies that reported using strategies to reduce cognitive demand in PtDA development compared with studies that did not (χ2 = 14.11, P = 0.0002, I2 = 92.9%). Limitations We were unable to access 13 of 24 PtDAs. Conclusions. Greater attention to health literacy and socially-disadvantaged populations is needed in the field of PtDAs to ensure equity in decision support.

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Health literacy in pregnant women facing prenatal screening may explain their intention to use a patient decision aid: a short report

BMC Research Notes ◽

10.1186/s13104-016-2141-0 ◽

2016 ◽

Vol 9 (1) ◽

Cited By ~ 11

Author(s):

Agathe Delanoë ◽

Johanie Lépine ◽

Maria Esther Leiva Portocarrero ◽

Hubert Robitaille ◽

Stéphane Turcotte ◽

...

Keyword(s):

Health Literacy ◽

Pregnant Women ◽

Decision Aid ◽

Prenatal Screening ◽

Intention To Use ◽

Short Report ◽

Patient Decision Aid ◽

Patient Decision

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Prospective evaluation of a new patient decision aid to enhance prostate cancer screening decision-making.

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.7_suppl.87 ◽

2019 ◽

Vol 37 (7_suppl) ◽

pp. 87-87

Author(s):

Michael Austin Brooks ◽

Anita Misra-Hebert ◽

Alexander Zajichek ◽

Sigrid V. Carlsson ◽

Jonas Hugosson ◽

...

Keyword(s):

Prostate Cancer ◽

Decision Making ◽

Health Literacy ◽

Decision Aid ◽

Decisional Conflict ◽

Patient Decision Aid ◽

Psa Screening ◽

Psa Testing ◽

Patient Decision ◽

The Impact

87 Background: We previously developed screening nomograms to predict 15-year risk of all-cause mortality, prostate cancer diagnosis, and prostate cancer mortality, and incorporated them into a graphical patient decision aid (PtDA). Our objective was to prospectively recruit primary care patients interested in shared-decision making regarding prostate specific antigen (PSA) screening and assess the impact of individualized counseling using our new PtDA. Methods: 50 patients from one internal medicine practice were enrolled in a single-arm sequential trial design, with face-to-face clinician counseling and questionnaires. Eligibility criteria included men age 50-69 years old and life expectancy > 10 years. Patients were excluded for a personal history of prostate cancer or PSA screening within the prior year. Participants completed baseline questionnaires regarding prior PSA testing, demographic information, health literacy, and the Control Preferences Scale (CPS). They then received standardized counseling (based on large trial and epidemiologic data) regarding PSA screening, followed by individualized counseling using our new PtDA. Participants then made a screening decision, and completed a post decision questionnaire including a Decisional Conflict Scale. Results: The median age was 60 (IQR 54; 65). 41 (82%) had a prior PSA test, while 9 (18%) had not. 42 (84%) of participants received some education beyond high school, 41 (82%) demonstrated high health literacy, and 45 (90%) desired to have an active role in decision-making based on the CPS. After undergoing counseling, 34 (68%) participants chose to undergo initial or repeat PSA screening, 8 (16%) chose against future screening, and 8 (16%) remained uncertain. 45 (90%) participants found individualized counseling using the PtDA more useful than standardized counseling. Finally, patients reported reduced decisional conflict compared to historical controls (P < 0.001). Conclusions: Our process of standardized counseling followed by individualized counseling using our new PtDA was effective in reducing decisional conflict. The majority of participants found the PtDA more useful for decision making than standardized counseling. Clinical trial information: NCT03387527.

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Abstract 12789: Development of the Tool to EMPOwer Surrogate Decision Makers of Comatose Survivors of Cardiac Arrest

Circulation ◽

10.1161/circ.144.suppl_2.12789 ◽

2021 ◽

Vol 144 (Suppl_2) ◽

Author(s):

Sarah M Perman ◽

Bonnie J Siry-Bove ◽

Benjamin Abella ◽

Stacie L Daugherty ◽

Edward Havranek ◽

...

Keyword(s):

Decision Making ◽

Cardiac Arrest ◽

Decision Aid ◽

Reading Level ◽

Decision Makers ◽

Structured Interviews ◽

Patient Decision ◽

Surrogate Decision Makers ◽

Surrogate Decision ◽

Grade Reading Level

Introduction: Surrogate decision makers (SDMs) for comatose survivors of cardiac arrest are often charged with making time-sensitive complex decisions with regard to life-sustaining therapies in a sudden critical illness. We describe the development of a decision aid for SDMs of comatose survivors of cardiac arrest. Methods: Applying recommendations from the International Patient Decision Aid Standards, we developed this decision aid iteratively with the purpose to educate families on post-arrest care and evidence based decision-making. We obtained feedback from stakeholders, including surrogate decision makers, patients, caregivers, nurses and physicians, in focus groups and semi-structured interviews. Results: Informed by interviews with SDMs and the AHA Guidelines, we designed a prototype of the decision aid. Each iteration resulted in a refined version of the aid (Figure). Step 1 included feedback from the Shared Decision-Making Core at the Adult and Child Consortium on Outcomes Research and Delivery Science (ACCORDS). Step 2 incorporated feedback from the ACCORDS Community Engagement Stakeholder group. Step 3 consisted of 10 semi-structured interviews with informal caregivers and patient pairs within the Advanced Heart Failure or Seniors clinics. The document was then reviewed by a team of expert cardiac arrest stakeholders. The aid includes key definitions, a timeline of post-arrest care, factors that support decisions to discontinue or pursue life sustaining therapies, commonly asked questions and an illustration of a patient undergoing post-arrest treatment. The decision aid, entitled T ool to EMPO wer (TEMPO) Surrogate Decision Makers, is written at a 7 th grade reading level. Conclusions: Through a robust iterative process, we designed a decision aid for SDMs of comatose survivors of cardiac arrest. The aid is intended to support the decision to pursue or forego further life-sustaining therapy and to be informative about post-arrest care.

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Health care and social media: What patients really understand

F1000Research ◽

10.12688/f1000research.10637.1 ◽

2017 ◽

Vol 6 ◽

pp. 118 ◽

Cited By ~ 6

Author(s):

Kyle Hoedebecke ◽

Lindsey Beaman ◽

Joy Mugambi ◽

Sanam Shah ◽

Marwa Mohasseb ◽

...

Keyword(s):

Health Care ◽

Social Media ◽

Health Literacy ◽

Grade Level ◽

Reading Level ◽

Lower Grade ◽

Grade Levels ◽

Low Health Literacy ◽

Patient Health ◽

Grade Reading Level

Background: Low health literacy is associated with decreased patient compliance and worse outcomes - with clinicians increasingly relying on printed materials to lower such risks. Yet, many of these documents exceed recommended comprehension levels. Furthermore, patients look increasingly to social media (SoMe) to answer healthcare questions. The character limits built into Twitter encourage users to publish small quantities of text, which are more accessible to patients with low health literacy. The present authors hypothesize that SoMe posts are written at lower grade levels than traditional medical sources, improving patient health literacy. Methods: The data sample consisted of the first 100 original tweets from three trending medical hashtags, leading to a total of 300 tweets. The Flesch-Kincaid Readability Formula (FKRF) was used to derive grade level of the tweets. Data was analyzed via descriptive and inferential statistics. Results: The readability scores for the data sample had a mean grade level of 9.45. A notable 47.6% of tweets were above ninth grade reading level. An independent-sample t-test comparing FKRF mean scores of different hashtags found differences between the means of the following: #hearthealth versus #diabetes (t = 3.15, p = 0.002); #hearthealth versus #migraine (t = 0.09, p = 0.9); and #diabetes versus #migraine (t = 3.4, p = 0.001). Conclusions: Tweets from this data sample were written at a mean grade level of 9.45, signifying a level between the ninth and tenth grades. This is higher than desired, yet still better than traditional sources, which have been previously analyzed. Ultimately, those responsible for health care SoMe posts must continue to improve efforts to reach the recommended reading level (between the sixth and eighth grade), so as to ensure optimal comprehension of patients.

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Enhancing Specific Health Literacy with a Digital Evidence-Based Patient Decision Aid for Hypertension: A Randomized Controlled Trial

Patient Preference and Adherence ◽

10.2147/ppa.s311470 ◽

2021 ◽

Vol Volume 15 ◽

pp. 1269-1279

Author(s):

Kai Wehkamp ◽

Felicia Beatrice Kiefer ◽

Friedemann Geiger ◽

Fueloep Scheibler ◽

Jens Ulrich Rueffer ◽

...

Keyword(s):

Randomized Controlled Trial ◽

Health Literacy ◽

Decision Aid ◽

Controlled Trial ◽

Digital Evidence ◽

Evidence Based ◽

Patient Decision Aid ◽

Randomized Controlled ◽

Patient Decision ◽

Specific Health

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The Use of a Patient Decision Aid in the Choice of Surgery for Herniated Disc

Case Medical Research ◽

10.31525/ct1-nct03884387 ◽

2019 ◽

Author(s):

Keyword(s):

Decision Aid ◽

Herniated Disc ◽

Patient Decision Aid ◽

Patient Decision

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A Systematic Review and Meta-Analysis of Patient Decision Aids for Socially Disadvantaged Populations: Update from the International Patient Decision Aid Standards (IDPAS)

Medical Decision Making ◽

10.1177/0272989x211020317 ◽

2021 ◽

pp. 0272989X2110203

Author(s):

Renata W. Yen ◽

Jenna Smith ◽

Jaclyn Engel ◽

Danielle Marie Muscat ◽

Sian K. Smith ◽

...

Keyword(s):

Relative Risk ◽

Health Inequalities ◽

Data Extraction ◽

Decision Aids ◽

Mean Difference ◽

Patient Decision Aids ◽

Disadvantaged Populations ◽

Socially Disadvantaged ◽

Patient Decision ◽

Intervention Trials

Background The effectiveness of patient decision aids (PtDAs) and other shared decision-making (SDM) interventions for socially disadvantaged populations has not been well studied. Purpose To assess whether PtDAs and other SDM interventions improve outcomes or decrease health inequalities among socially disadvantaged populations and determine the critical features of successful interventions. Data Sources MEDLINE, CINAHL, Cochrane, PsycINFO, and Web of Science from inception to October 2019. Cochrane systematic reviews on PtDAs. Study Selection Randomized controlled trials of PtDAs and SDM interventions that included socially disadvantaged populations. Data Extraction Independent double data extraction using a standardized form and the Template for Intervention Description and Replication checklist. Data Synthesis Twenty-five PtDA and 13 other SDM intervention trials met our inclusion criteria. Compared with usual care, PtDAs improved knowledge (mean difference = 13.91, 95% confidence interval [CI] 9.01, 18.82 [I2 = 96%]) and patient-clinician communication (relative risk = 1.62, 95% CI 1.42, 1.84 [I2 = 0%]). PtDAs reduced decisional conflict (mean difference = −9.59; 95% CI −18.94, −0.24 [I2 = 84%]) and the proportion undecided (relative risk = 0.39; 95% CI 0.28, 0.53 [I2 = 75%]). PtDAs did not affect anxiety (standardized mean difference = 0.02, 95% CI −0.22, 0.26 [I2 = 70%]). Only 1 trial looked at clinical outcomes (hemoglobin A1C). Five of the 12 PtDA studies that compared outcomes by disadvantaged standing found that outcomes improved more for socially disadvantaged participants. No evidence indicated which intervention characteristics were most effective. Results were similar for SDM intervention trials. Limitations Sixteen PtDA studies had an overall unclear risk of bias. Heterogeneity was high for most outcomes. Most studies only had short-term follow-up. Conclusions PtDAs led to better outcomes among socially disadvantaged populations but did not reduce health inequalities. We could not determine which intervention features were most effective. [Box: see text]

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Systematic Development of Patient Decision Aids: An Update from the IPDAS Collaboration

Medical Decision Making ◽

10.1177/0272989x211014163 ◽

2021 ◽

pp. 0272989X2110141

Author(s):

Holly O. Witteman ◽

Kristin G. Maki ◽

Gratianne Vaisson ◽

Jeanette Finderup ◽

Krystina B. Lewis ◽

...

Keyword(s):

Decision Aid ◽

Decision Aids ◽

Rapid Development ◽

User Involvement ◽

User Centered Design ◽

Patient Decision Aid ◽

Patient Decision Aids ◽

Patient Decision ◽

Development Processes ◽

Systematic Development

Background The 2013 update of the evidence informing the quality dimensions behind the International Patient Decision Aid Standards (IPDAS) offered a model process for developers of patient decision aids. Objective To summarize and update the evidence used to inform the systematic development of patient decision aids from the IPDAS Collaboration. Methods To provide further details about design and development methods, we summarized findings from a subgroup ( n = 283 patient decision aid projects) in a recent systematic review of user involvement by Vaisson et al. Using a new measure of user-centeredness (UCD-11), we then rated the degree of user-centeredness reported in 66 articles describing patient decision aid development and citing the 2013 IPDAS update on systematic development. We contacted the 66 articles’ authors to request their self-reports of UCD-11 items. Results The 283 development processes varied substantially from minimal iteration cycles to more complex processes, with multiple iterations, needs assessments, and extensive involvement of end users. We summarized minimal, medium, and maximal processes from the data. Authors of 54 of 66 articles (82%) provided self-reported UCD-11 ratings. Self-reported scores were significantly higher than reviewer ratings (reviewers: mean [SD] = 6.45 [3.10]; authors: mean [SD] = 9.62 [1.16], P < 0.001). Conclusions Decision aid developers have embraced principles of user-centered design in the development of patient decision aids while also underreporting aspects of user involvement in publications about their tools. Templates may reduce the need for extensive development, and new approaches for rapid development of aids have been proposed when a more detailed approach is not feasible. We provide empirically derived benchmark processes and a reporting checklist to support developers in more fully describing their development processes. [Box: see text]

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Basing Information on Comprehensive, Critically Appraised, and Up-to-Date Syntheses of the Scientific Evidence: An Update from the International Patient Decision Aid Standards

Medical Decision Making ◽

10.1177/0272989x21996622 ◽

2021 ◽

pp. 0272989X2199662

Author(s):

Tammy C. Hoffmann ◽

Mina Bakhit ◽

Marie-Anne Durand ◽

Lilisbeth Perestelo-Pérez ◽

Catherine Saunders ◽

...

Keyword(s):

Decision Aid ◽

Scientific Evidence ◽

Decision Aids ◽

Future Research ◽

Patient Decision Aid ◽

Patient Decision Aids ◽

Research Areas ◽

Patient Decision ◽

Evidence Quality ◽

Emerging Issues

Background Patients and clinicians expect the information in patient decision aids to be based on the best available research evidence. The objectives of this International Patient Decision Aid Standards (IPDAS) review were to 1) check the currency of, and where needed, update evidence for the domain of “basing the information in decision aids on comprehensive, critically appraised, and up-to-date syntheses of the evidence”; 2) analyze the evidence characteristics of decision aids; and 3) propose updates to relevant IPDAS criteria. Methods We searched MEDLINE and PubMed to inform updates of this domain’s definitions, justifications, and components. We also searched 5 sources to identify all publicly available decision aids ( N = 471). Two assessors independently extracted each aid’s evidence characteristics. Results Minor updates to the definitions and theoretical justifications of this IPDAS domain are provided and changes to relevant IPDAS criteria proposed. Nearly all aids (97%) provided a year of creation/update, but most (81%) did not report an explicit update or expiration policy. No scientific references were cited in 33% of aids. Of the 314 that cited at least 1 reference, 39% cited at least 1 guideline, 44% cited at least 1 systematic review, and 23% cited at least 1 randomized trial. In 35%, it was unclear what statement in the aid the citations referred to. Only 14% reported any of the processes used to find and decide on evidence inclusion. Only 14% reported the evidence quality. Many emerging issues and future research areas were identified. Conclusions Although many emerging issues need to be addressed, this IPDAS domain is validated and criteria refined. High-quality patient decision aids should be based on comprehensive and up-to-date syntheses of critically appraised evidence.

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Bladder Cancer Health Literacy: Assessing Readability of Online Patient Education Materials

Bladder Cancer ◽

10.3233/blc-200387 ◽

2020 ◽

pp. 1-8

Author(s):

Lauren E. Powell ◽

Theodore I. Cisu ◽

Adam P. Klausner

Keyword(s):

Bladder Cancer ◽

Health Literacy ◽

Patient Education ◽

Search Engine ◽

Reading Ability ◽

Health Care Expenditure ◽

Reading Level ◽

T Test ◽

Grade Levels ◽

Grade Reading Level

BACKGROUND: Understanding of health-related materials, termed health literacy, affects decision makings and outcomes in the treatment of bladder cancer. The National Institutes of Health recommend writing education materials at a sixth-seventh grade reading level [6]. The goal of this study is to assess readability of bladder cancer materials available online. OBJECTIVE: The goal of this study is to characterize available information about bladder cancer online and evaluate readability. METHODS: Materials on bladder cancer were collected from the American Urological Association’s Urology Care Foundation (AUA-UCF) and compared to top 50 websites by search engine results. Resources were analyzed using four different validated readability assessment scales. The mean and standard deviation of the materials was calculated, and a two-tailed t test for used to assess for significance between the two sets of patient education materials. RESULTS: The average readability of AUA materials was 8.5 (8th–9th grade reading level). For the top 50 websites, average readability was 11.7 (11–12th grade reading level). A two-tailed t test between the AUA and top 50 websites demonstrated statistical significance between the readability of the two sets of resources (P = 0.0001), with the top search engine results being several grade levels higher than the recommended 6–7th grade reading level. CONCLUSIONS: Most health information provided by the AUA on bladder cancer is written at a reading ability that aligns with most US adults, with top websites for search engine results exceeding the average reading level by several grade levels. By focusing on health literacy, urologists may contribute lowering barriers to health literacy, improving health care expenditure and perioperative complications.

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