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Lorraine S Wallace,1 Randell K Wexler,1 Leon McDougle,1 W Frederick Miser,1 J David Haddox2,3 1Department of Family Medicine, the Ohio State University, Columbus, OH, USA; 2Health Policy, Purdue Pharma L.P., Stamford, CT, USA; 3Department of Public Health and Community Medicine, Tufts University School of Medicine, Boston, MA, USA Background: Although psychometrically sound pain assessment tools are available, there is a paucity of research that comprehensively defines chronic pain from the perspective of patients. The purpose of this study was to examine the utility of a combination of qualitative methods (Photovoice, one-on-one interviews, and focus groups) in examining the daily experiences of primary care patients living with chronic pain. Methods: A sample of English-speaking primary care patients aged 30 years or older, who had been prescribed an opioid for long-term, noncancer pain management, participated in the study. Each patient took photographs that best reflected both his/her experiences with chronic pain and what he/she would like his/her life to be without chronic pain. Results: Patients submitted an average of 20.2±3.1 photographs (range =8–27 photographs). Analysis of one-on-one interviews illuminated five dominant themes: daily need for multiple medications, including opioids; difficulties climbing a flight of stairs; struggling to get out of bed in the morning; extreme challenges with participating in day-to-day life activities; and experiencing feelings of hopelessness and helplessness on a regular basis. Seven themes emerged from the focus groups: undesired effects/burdens of medications, loss of/striving for independence, effect on social interactions/relationships, pain effect on activities of daily living, constant search for convenience/a better situation, interactions with physicians, and frustration/depression with pain. Conclusion: The qualitative methods employed in this study provide deep insight into perceptions and experiences of patients living with chronic pain that is vital for informing future clinical interventions. Keywords: opioid, Photovoice, qualitative research

Lorraine S Wallace,1 Randell K Wexler,1 W Frederick Miser,1 Leon McDougle,1 J David Haddox2,3 1The Ohio State University, Department of Family Medicine, Columbus, OH, 2Purdue Pharma LP, One Stanford Forum, Stanford, CT, 3Tufts University School of Medicine, Department of Public Health and Community Medicine, Boston, MA, USA Background: Although there are screening tools to aid clinicians in assessing the risk of opioid misuse, an instrument to assess opioid-related knowledge is not currently available. The purpose of this study was to develop a content-valid, understandable, readable, and reliable Patient Opioid Education Measure (POEM). Methods: Using concept mapping, clinicians caring for patients with chronic pain participated in brainstorming, sorting, and rating need-to-know information for patients prescribed opioids. Concept mapping analyses identified seven clusters addressing knowledge and expectations associated with opioid use, including medicolegal issues, prescribing policies, safe use and handling, expected outcomes, side effects, pharmacology, and warnings. Results: The 49-item POEM was verbally administered to 83 patients (average age 51.3 ± 9.8 years, 77.1% female, 47.1% African American) taking opioids for chronic nonmalignant pain. Patients averaged in total 63.9% ± 14.3% (range 23%–91%) correct responses on the POEM. The POEM demonstrated substantial test-retest reliability (interclass correlation coefficient 0.87). The POEM had a mean readability Lexile (L) score of 805.9 ± 257.3 L (equivalent to approximately a US fifth grade reading level), with individual items ranging from 280 L to 1370 L. Conclusion: The POEM shows promise for rapidly identifying patients' opioid-related knowledge gaps and expectations. Correcting misunderstandings and gaps could result in safer use of opioids in a clinical care setting. Keywords: opioid, knowledge, pain, questionnaire

Objective: To estimate whether the Medicaid-Title XIX Sterilization Consent Form (SCF) format--"standard" compared with "low-literacy"--is associated with women's understanding of tubal sterilization.Methods: This study was a randomized trial that took place in an obstetrics and gynecology residency clinic in the southeastern United States. Women, aged 21 to 45 years, were randomly allocated to receive a copy of either the standard or the low-literacy Medicaid-Title XIX SCF. A research assistant assessed women's sociodemographic characteristics, health-literacy skills, and understanding of sterilization using items from the Postpartum Tubal Sterilization Knowledge questionnaire. Women were also queried regarding their preferences for either version of the Medicaid-Title XIX SCF.Results: We included 201 women in the study. Compared with women in the standard group (n=99), women in the low-literacy group (n=102) with no additional counseling better understood the length of time required between signing the form and undergoing sterilization (23.6% difference between groups, P<.01), the time interval until the form expired (33.7% difference between groups, P<.01), permanence of sterilization (15.7% difference between groups, P=.01), and that nonpermanent contraceptive options as effective as sterilization are available (8.2% difference between groups, P=.02). When given the choice to select either Medicaid-Title XIX SCF, 189 (94%) preferred the low-literacy version.Conclusion: Our results support replacing the standard Medicaid-Title XIX SCF with the low-literacy version to foster increased understanding of sterilization. [ABSTRACT FROM AUTHOR]

BACKGROUND: To examine influence of language preference-English versus Spanish-on Hispanics' perceptions of their healthcare providers' communication behaviors. METHODS: Using the 2005 Medical Expenditure Panel Survey (MEPS), we observed non-institutionalized Hispanics (n = 5197; US population estimate = 27,070,906), aged >or=18 years, reporting visiting a healthcare provider within the past 12 months. RESULTS: When compared to Spanish responders (reference group), English responders were more likely to report that their healthcare provider 'always' listened to them carefully (adjusted odds ratio (OR) = 1.39, 95% confidence interval (CI) 1.09-1.78), 'always' explained things so that they understood (adjusted OR 1.37, 95% CI 1.08-1.73), 'always' spent enough time with them (adjusted OR = 1.62, 95% CI 1.24-2.11),'always' asked them to help make decisions (adjusted OR 1.37, 95% CI 1.03-1.82), and 'always' showed respect for treatment decisions (adjusted OR = 1.66, 95% CI 1.27-2.19). DISCUSSION: Healthcare providers should consider the complex needs of Hispanic patients whose language of choice is not English. [ABSTRACT FROM AUTHOR]

BACKGROUND: National governments across the globe have set goals to improve healthcare delivery. Understanding patient-provider communication is essential for the development of policies that measure how well a healthcare system delivers care. OBJECTIVES: This study was designed to determine which, if any, demographic factors were independently associated with how US patients perceive various aspects of communication with their healthcare providers. DESIGN AND METHODS: The study was a secondary, cross-sectional analysis of nationally representative data from the 2002 Medical Expenditure Panel Survey (MEPS). Among US adults with a healthcare visit in the past year (n = approximately 16,700), we assessed the association between several covariate demographic and socioeconomic factors and four dependent measures of patient perceptions of communication with their healthcare providers. RESULTS: Across all four measures of communication, older patients were more likely to report positively. Having health insurance and a usual source of care were consistent predictors of positive perceptions of communication. Hispanic patients also reported better perceptions of communication across all four measures. The most economically disadvantaged patients were less likely to report that providers always explained things so that they understood. Male patients were more likely to report that providers always spent enough time with them. CONCLUSIONS: This study suggests that patient perceptions of communication in healthcare settings vary widely by demographics and other individual patient characteristics. In this paper, we discuss the relevance of these communication disparities to design policies to improve healthcare systems, both at the individual practice level and the national level. [ABSTRACT FROM AUTHOR]

We examined the association of place of residence--urban versus non-urban--with patients' perceptions regarding communication and interactions with healthcare providers. Respondents' perceptions of their healthcare providers' communication skills were assessed by responses to six items from the 2002 Medical Expenditure Panel Survey, a nationally representative survey of the civilian, non-institutionalized US population. After controlling for several covariates, respondents in urban areas reported poorer communication by their healthcare providers than non-urban respondents. Differences in perceived quality of communication could contribute to reduce use of preventive healthcare and indicates a need to improve healthcare provider-patient communication in the urban setting. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To examine readability and formatting characteristics of consumer medication information (CMI) accompanying prescription medication samples. METHODS: We collected the most commonly used prescription medication samples (n=100) from four out-patient clinics at a large teaching hospital in the Southeastern US. Seventeen percent of samples were not pills/tablets and of such diverse nature (e.g., injections, drops, and creams) that there were not enough in any category to draw conclusions. Therefore, our analyses were limited to 83pill/tablet samples, belonging to 11 drug classes (e.g., cardiovascular, and psychiatric). We noted if CMI was present, and if so we assessed it for how instructions were presented, reading level, text size, format/layout, and comprehensibility. RESULTS: No CMI was present in 39 (46.9%) samples. In 19 (22.9%), CMI was contained in a package insert and in 25 (30.2%) it was printed on the medication package. Average reading difficulty of CMI was at the 10th grade level (range=6-15) using the Fry formula, and text point size was small (mean 9.9+/-2.2 on package inserts and 9.4+/-2.6 when printed on packages). CONCLUSIONS: Almost half of samples did not include any type of CMI. For those that had CMI, it was often written at a reading difficulty level higher than the average reading skills of American adults, and the format of most CMI was not optimal for comprehensibility. It is likely that many patients do not understand the instructions accompanying medication samples they receive from clinicians. PRACTICE IMPLICATIONS: Clinicians should be cognizant of the shortcomings of CMI accompanying medication samples and thereby, distribute them to patients with caution. Manufacturers too should consider revising CMI to comply with low-literacy guidelines. [ABSTRACT FROM AUTHOR]

Background: The purpose of this study was to assess readability and related characteristics of English-language Quick Reference Guides (QRGs) accompanying home blood glucose monitors (HBGMs), including reading grade level, dimensions, text point size, illustrations, and layout features. Methods: Using the 2006 Diabetes Forecast Resource Guide, we identified HBGMs currently available in the United States. Reading grade level was calculated using Flesch Reading Ease (FRE). Text point size was determined by measuring the distance from the ascent line to the descent line with a C-Thru((R)) (Bloomfield, CT) Ruler. Total number of illustrations per QRG was tallied. Illustration dimensions were measured to the nearest millimeter. We also assessed layout features-derived from the Suitability of Materials Assessment and User-Friendliness Tool-including, font style type, use of white space, sentence structure, language style, limited math skill, focus on 'Need to Know,' and appropriateness of illustrations. Results: FRE scores ranged from 5(th) to approximately 13(th) grade, while text point size averaged 9.9 +/- 1.6 (range, 8-12). QRGs averaged 15.8.2 +/- 6.0 (range, 6-25) clear and realistic illustrations, most slightly larger than a quarter. Most QRGs avoided use of specialty fonts (85.7%) and limited information to 'Need to Know' (92.9%). All instructions required little math skill; however, ample white space was used in five (35.7%) QRGs. Conclusions: HBGM manufacturers should increase the size of QRG fold-outs, thereby allowing for larger text size and illustrations, and increasing the amount of white space. Making these relatively small formatting changes would ensure that all patients with diabetes, particularly those with visual impairments, are able to follow HBGM instructions. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To evaluate knowledge of Pap smear screening and colposcopy among Appalachian women. MATERIALS AND METHODS: English-speaking women (18 years or older) referred for colposcopy after abnormal Pap testing at a teaching hospital in the southeastern United States were studied. Structured interviews were conducted to assess demographic characteristics, health literacy skills using the Rapid Estimate of Adult Literacy in Medicine, understanding of the Pap smear and colposcopy, state anxiety, and cervical intraepithelial neoplasia distress. RESULTS: The mean age of women was 29.6 +/- 10.94, 93.2% white, 50.2% high school graduates or had an equivalency diploma, and 55.3% current cigarette use. Approximately one fifth (n = 22) of women had limited health literacy skills. Overall, womens' understanding of the Pap test, meaning of abnormal Pap test results, identification of risk factors contributing to abnormal Pap test results, and understanding of colposcopy was limited. Health literacy skills was the lone characteristic to significantly predict overall understanding of the Pap smear and colposcopy (unstandardized beta coefficient [SE] = 0.68 [0.02], p < .05). CONCLUSIONS: These findings demonstrate that Pap smear and colposcopy knowledge is associated with health literacy skills. Health care providers should be aware that many women lack sufficient knowledge of the Pap smear and colposcopy and tailor counseling during the clinical encounter accordingly. [ABSTRACT FROM AUTHOR]

The purpose of this study was to explore American student perceptions of caring for Korean patients during a 2 week exchange program. Perceptions of Korea/Koreans focused on five areas: respect, hospitality and gift giving, ability to speak English, hierarchal relationships, and being protective. Their perceptions of personal change focused in four areas: valuing personal cultural experiences, increasing cultural awareness and compassion, seeing people from other ethnic groups as individuals and developing interest in oriental medicine. Four areas of importance identified when caring for Korean patients included showing respect, importance of family, food, and care for post-partum mothers. Differences were experienced between an individualistic, low-context society (United States) and a collectivistic, high context society (Korea) where the influence of Confucianism is pervasive. [ABSTRACT FROM AUTHOR]

ObjectiveRisk of falling increases as people age, and decreased leg strength and poor balance have been implicated as contributors. Our aims were to: 1) assess the efficacy of a fall-prevention exercise program on balance and leg strength in women aged 65 to 89 years and 2) conduct a 1-year follow-up to determine the effect of exercise on fall rates.MethodsForty women were classified by falling history and fear of falling and assigned to exercise and control groups using stratified randomization. We used the Berg Balance Scale, Get-up and Go, Functional Reach, and Wall-Sit Tests to evaluate changes in balance and leg strength before and after a supervised 15-week exercise program (3 1-hr sessions/week). We conducted 1-year follow-up telephone interviews and compared the number of falls reported by exercise and control groups. The study used a 2 x 2 (exercise/control by pretest/post-test) factorial design with the testing times being a repeated factor, so we used analysis of variance (ANOVA) to evaluate differences between the 2 groups across testing times. Power analysis computed a priori with STPLAN software (Version 4.2) showed that a sample size of 40 was necessary to determine statistical differences in balance and leg strength.ResultsExercise subjects showed significant improvement on 5 of 14 items (5.2%, p

OBJECTIVE: To investigate the risk factors for osteoporosis among a sample of middle-aged women. METHODS: Adipose tissue and bone mineral density levels at the left femur, lumbar spine, and total body were assessed using dual-energy x-ray absorptiometry (DXA). Subjects (n=342) were surveyed regarding a variety of osteoporosis-related risk factors. Forward stepwise multiple regression procedures were utilized. RESULTS: Menstrual status, hormone replacement therapy, adipose tissue, and dairy product intake were retained in the regression models. CONCLUSIONS: Osteoporosis prevention programs need to emphasize the importance of hormonal status and body composition in addition to obtaining adequate calcium intake. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To evaluate the accountability of osteoporosis information available in selected mass-circulating women's magazines (n=8) and a sample of newspapers (n=2). METHODS: Osteoporosis articles (n=132) were assessed for sources of information used, incidence/prevalence statistics, risks factors, and prevention measures. RESULTS: Expert sources were highlighted in the majority of articles, whereas incidence/ prevalence statistics were described in less than half of the articles. Risk factors and prevention measures were outlined in most articles; however, much of the information presented was ambiguous and incomplete. CONCLUSIONS: It appears that the reporting of osteoporosis in women's magazines and newspapers is not entirely balanced; thus, future coverage should provide greater detail when reporting risks and preventive measures. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To examine personal characteristics and expanded health belief model (EHBM) constructs associated with the practice of osteoporosis-protective behaviors among a random sample of nontraditional college women. METHODS: A valid and reliable written mail questionnaire assessing osteoporosis knowledge, EHBM constructs, weight-bearing exercise (EX), and dietary calcium intake (CA) was completed by 273 women. RESULTS: A high proportion of women did not meet current guidelines for EX (50.7%) or CA (67.8%). Exercise self-efficacy and barriers to exercise were the best predictors of overall EX and CA behaviors. CONCLUSION: The EHBM was useful in predicting EX and CA. [ABSTRACT FROM AUTHOR]

Rhabdomyolysis, which may account for 25% of all cases of acute renal failure, results from injury to skeletal muscle causing the release of myoglobin into the urine. This case study presents history and physical findings, nursing diagnoses, interventions, and research findings related to the disorder and its treatment. [ABSTRACT FROM AUTHOR]

An increase in pulmonary artery pressure can help you recognize the onset of pulmonary hypertension, while prostacyclin, supplemental oxygen, and a range of supportive measures can help control it. [ABSTRACT FROM AUTHOR]

Objective: To examine readability characteristics of step-by-step directions presented in 'How to Use' sections of over-the-counter (OTC) nicotine replacement therapy (NRT) products. Methods: Step-by-step directions of all (n=6) currently available OTC NRTs were assessed on reading grade level, text point size, dimensions, and illustrations. Results: The mean readability was at grade level 10.5±0.8, whereas the aver- age text point size was 9.2± 1.3. Two OTC NRT products provided illustrations to supplement step- by-step directions. Conclusion: As currently presented, the readability characteristics of 'How to Use' sections of OTC NRTs do not facilitate consumer understanding. [ABSTRACT FROM AUTHOR]

OBJECTIVE: The objective of this study was to develop a content valid, understandable, readable, and reliable Chronic Obstructive Pulmonary Disease knowledge Questionnaire (COPD-Q). METHODS: Twenty-one questions were generated as potential items to include in the COPD-Q. Twenty-two content experts provided both qualitative and quantitative assessments of two COPD-Q drafts. Ten patient volunteers completed a field test to assess clarity of individual COPD-Q items. An additional 24 patient volunteers completed a pilot test to determine internal consistency and test-retest reliability of the COPD-Q. The Flesch Reading Ease (FRE) was used to assess reading grade level of the COPD-Q. RESULTS: Thirteen items were rated as 'essential' (content validity ratio= p <0.05) by content experts and composed the final COPD-Q. Internal consistency, using Cronbach's alpha, was 0.72. Test-retest reliability, using intraclass correlation coefficient, was 0.90. The FRE score of the COPD-Q was 74.7 (equivalent to a 5th grade reading level). CONCLUSION: The COPD-Q is a valid, readable and reliable knowledge assessment instrument for assessing COPD knowledge in patients who may have low health literacy skills. PRACTICE IMPLICATIONS: Health care providers can use the COPD-Q to tailor counseling efforts according to individual patient needs, and to assess the effectiveness of their educational interventions. [ABSTRACT FROM AUTHOR]

Objective:  This study aimed to (1) determine the effect of neighborhood-level socioeconomic status (SES), which considers the social and physical environment where a person lives, on parental engagement in the Neonatal Intensive Care Unit (NICU) and (2) compare the relationships between parental engagement and individual versus neighborhood-level measures of SES., Study Design:  In this cohort study, parents ( n  = 45) of premature neonates ≤34 weeks' gestation were assessed at 2 and 6 weeks after birth from December 2017 to October 2019. Neighborhood-level SES was determined using census data per the Association of Maternal and Child Health Programs' methodology, and parents self-reported their education level as an individual-level measure of SES. Data on frequency of engagement in NICU activities, including telephone updates, visitation, providing expressed breastmilk, and participating in kangaroo care, were collected from the electronic medical record. Parent psychosocial factors were assessed using validated surveys. Statistical analysis was performed using Fisher's exact test, t -test, and logistic regression., Results:  In multivariate regression analysis, disadvantaged neighborhood-level SES was associated with decreased odds of kangaroo care (OR = 0.16, 95% CI: [0.03-0.89]) and visitation (OR = 0.14, 95% CI: [0.02-0.87]), while lower individual-level SES was not significantly associated with kangaroo care, visiting, calling, or pumping ( p  > 0.05)., Conclusion:  Parental engagement was more consistently and significantly associated with neighborhood-level SES than with individual-level SES. Therefore, neighborhood-level SES measures may be more explanatory than individual-level SES measures. Further studies and targeted interventions are needed to address disparities in the frequency of kangaroo care and visitation according to SES., Key Points: · Parents from disadvantaged neighborhoods are less likely to do kangaroo care and visit the NICU.. · Parent engagement was more significantly associated with neighborhood than with parent education.. · Neighborhood-level SES measures may be more explanatory than individual-level SES measures.. · Interventions are needed to address SES-related disparities in NICU kangaroo care and visitation.., Competing Interests: O.O. is currently employed as a Physician-Scientist by Merck & Co (September 2023–present).The other authors of this study declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Thieme. All rights reserved.)

Background: The purposes of this study were to (1) longitudinally examine US college and university COVID-19 dashboard content and (2) explore county-level population health and COVID-19 community indicators where colleges with large undergraduate enrollments were located., Methods: We identified 10 colleges with the largest undergraduate enrollments. Next, we located all public and private two- and four-year nonprofit colleges ( n  = 58) in each respective county. We assessed active COVID-19 dashboards using established criteria from We Rate COVID Dashboards in March 2021 and February 2022., Results: In 2021 and 2022, two-thirds ( n  = 38/58) of colleges had an active COVID-19 dashboard. While most COVID-19 dashboards were easy to read, they were less likely to include updated daily infection rates and testing frequency details., Conclusion: Overall quality, content, and features of COVID-19 dashboards varied greatly across colleges. Future COVID-19 dashboard designs should focus on providing evidence-based information with the goal of promoting and supporting informed decision making.

Background: Caregivers often have difficulty administering pediatric medications which frequently results in increased dosing error risk., Objective: We examined health literacy characteristics of pediatric over-the-counter (OTC) oral suspension acetaminophen and ibuprofen instructional materials and dosing instruments., Methods: We conducted a descriptive analysis of dosing instructions, measuring syringe characteristics, and internet-based resources among a sample of OTC pediatric oral suspension acetaminophen and ibuprofen products ( n  = 14)., Results: All products included Drug Facts Panels, employed consistent abbreviation use, and stated measuring dosage with syringe provided. However, oral syringe dosing increment markings did not match box or bottle dosing charts. Most products had supplemental English-language internet-based content resources available., Conclusions: While OTC pediatric oral suspension acetaminophen and ibuprofen products labeling included key drug fact elements, there were inconsistencies between medication dosing chart labeling guidelines and oral syringe dosing increments/markings. It is vital that oral dosing syringes are clearly marked to match product dosing chart labeling s as a means of potentially reducing caregiver dosing errors., Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2023 The Authors.)

Background: The United States Food & Drug Administration's emergency authorized use, in December 2020, of over-the-counter (OTC) rapid antigen COVID-19 tests was a pandemic control milestone., Objective: To assess health literacy-related characteristics of OTC rapid antigen COVID-19 test materials., Methods: Between September-December 2021, we identified eleven (n = 11) OTC rapid antigen COVID-19 tests available for purchase in the US. We assessed readability (Flesch Reading Ease and Fernández-Huerta), formatting and layout features of English- and Spanish-language step-by-step OTC rapid antigen COVID-19 test package insert instructions. Video-based step-by-step OTC rapid antigen COVID-19 test instructions were evaluated for understandability and actionability (Patient Education Materials Assessment Tool for Audiovisual Materials [PEMAT-A/V]), overall quality (Global Quality Scale [GQS]) and cultural diversity and inclusiveness. Descriptive analyses were performed using IBM® Statistical Package for the Social Sciences., Results: Nine (81.8%) OTC rapid antigen COVID-19 tests included English-language (≈8th-9th reading grade level) step-by-step instructions, while 4 included Spanish-language (≈10th-12th reading grade level) instructions. On average, instructions were printed on a tabloid sized piece of paper, with text size ranging from 4 to 12 point and including nearly 20 illustrations. English-language step-by-step OTC rapid antigen COVID-19 test video-based instructions (n = 6) ranged from 1:04 to 5:41 min with PEMAT-A/V scores ranging from 80% to 100%. As indicated by GQS scores, English-language videos were of high quality (5 videos scored 5/5; 1 video scored 4/5). One COVID-19 test product manufacturing website included Spanish-language video-based instructions (time = 4:59 min; PEMAT-A/V = 100%; GQS = 5)., Conclusions: OTC COVID-19 test step-by-step instructions-both package inserts and video-based-included features shown to foster patient understanding and facilitate proper use. Moving forward, greater attention needs to be placed on expanding both Spanish-language and video-based OTC COVID-19 test material availability to improve accessibility across diverse populations., Competing Interests: Declaration of competing interest Authors declare no known conflicts of interest., (Copyright © 2022. Published by Elsevier Inc.)

The nutrition management guideline for very-long chain acyl-CoA dehydrogenase deficiency (VLCAD) is the fourth in a series of web-based guidelines focusing on the diet treatment for inherited metabolic disorders and follows previous publication of guidelines for maple syrup urine disease (2014), phenylketonuria (2016) and propionic acidemia (2019). The purpose of this guideline is to establish harmonization in the treatment and monitoring of individuals with VLCAD of all ages in order to improve clinical outcomes. Six research questions were identified to support guideline development on: nutrition recommendations for the healthy individual, illness management, supplementation, monitoring, physical activity and management during pregnancy. This report describes the methodology used in its development including review, critical appraisal and abstraction of peer-reviewed studies and unpublished practice literature; expert input through two Delphi surveys and a nominal group process; and external review from metabolic physicians and dietitians. It includes the summary statements of the nutrition management recommendations for each research question, followed by a standardized rating based on the strength of the evidence. Online, open access of the full published guideline allows utilization by health care providers, researchers and collaborators who advise, advocate and care for individuals with VLCAD and their families and can be accessed from the Genetic Metabolic Dietitians International (https://GMDI.org) and Southeast Regional Genetics Network (https://southeastgenetics.org/ngp) websites., Competing Interests: Declaration of Competing Interest The authors do not report any conflicts of interest related to management of LC-FOADs., (Copyright © 2020 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Thought leaders from family medicine and practice-based research networks (PBRNs) have put forth definitions and goals recommending future directions for PBRNs. Evidence demonstrating that PBRNs are acting in accordance with these trends supports future investment in PBRN infrastructure, funding, and training of clinician researchers. Our objective was to explore the alignment of PBRN research efforts with thought leader recommendations., Methods: The 2017 Council of Academic Family Medicine Educational Research Alliance surveyed PBRN directors via emails to 126 respondents. This survey included 6 general background questions about PBRN characteristics. An additional 25 questions focused on current and future research directions, including the training of health care professionals about PBRN research., Results: The survey response rate was 56/126 (44%). Physician faculty receive continuing medical education credit for PBRN training (reported by 12/56 of PBRN directors). PBRN provided continuing medical education for study participation (24/56), reviewing study results (7/56), attending a study results presentation (24/56), and attending study planning meetings (13/56). Practice-based research education of medical students and residents was reported at 11/56 and 14/56, respectively. Current PBRN research efforts were most frequent in the areas of community engagement, practice transformation, and quality improvement projects., Conclusion: PBRNs currently thrive on conducting research predominantly in quality improvement and practice transformation. However, the study findings suggest that moving forward, PBRNs should participate more in training the future generations of primary care researchers and to address health policy needs., Competing Interests: Conflict of interest: none declared., (© Copyright 2018 by the American Board of Family Medicine.)

Background: Underserved patient populations experience barriers to accessing and engaging within the complex health care system. Electronic patient portals have been proposed as a potential new way to improve access and engagement. We studied patient portal use for 12 consecutive months (365 days) among a large, nationally distributed, underserved patient population within the OCHIN (originally created as the Oregon Community Health Information Network and renamed OCHIN as other states joined) practice-based research network (PBRN)., Methods: We retrospectively assessed adoption and use of Epic's MyChart patient portal in the first 12 months after MyChart was made available to the OCHIN PBRN. We examined electronic health record data from 36,549 patients aged ≥18 years who were offered a MyChart access code between May 1, 2012, and April 30, 2013, across the OCHIN PBRN in 13 states., Results: Overall, 29% of patients offered an access code logged into their MyChart account. Superusers (minimum of 2 logins per month over a 12-month period) accounted for 6% of users overall. Men, nonwhite patients, Hispanic patients, Spanish-speaking patients, and those with the lowest incomes were significantly less likely to activate. Publicly insured and uninsured patients were also less likely to log in to their MyChart account, but once activated they were more likely than privately insured patients to use MyChart functions., Conclusions: Our findings suggest that, compared with others, certain patient groups may be less interested in using patient portals or may have experienced significant barriers that prevented use. Making portal access available is a first step. Additional studies need to specifically identify health system-, clinic-, and patient-level barriers and facilitators to portal adoption and use., (© Copyright 2016 by the American Board of Family Medicine.)

Background: Continuing gender disparities within the medical profession have raised concerns about the extent to which women physicians face an inhospitable work environment. The purpose of this study was to examine the types and frequency of workplace bullying reported by a national sample of family physicians employed in academic settings, as related to gender., Material and Methods: Data for this study were gathered as part of the Council of Academic Family Medicine (CAMF) Educational Research Alliance (CERA) omnibus electronic survey. Respondents completed questions addressing sociodemographic and practice characteristics, general experience with bullying, types of bullying, actions in response to bullying, and outcomes. A total of 1065 academic family physicians (male = 56.8%; female = 43.2%), mostly non-Hispanic white (84.2%) or Asian (5.3%) and between the ages 30 and 60 (58.7%) completed the CERA survey., Results: One in 10 respondents acknowledged bullying someone in the workplace; 30% had been personally bullied in the workplace., Conclusions: Compared to men, female physicians were more likely to report being bullied overall and, specifically, to experience having their opinions ignored, lack of recognition for good work, feeling pressured not to claim rightful benefits, and being given unmanageable workloads. Despite some gender differences in actions taken, outcomes for each kind of action were the same for men and women.

Background: Technology-based patient engagement strategies (such as patient portals) are increasingly available, yet little is known about current use and barriers within practice-based research networks (PBRNs). PBRN directors have unique opportunities to inform the implementation of patient-facing technology and to translate these findings into practice., Methods: PBRN directors were queried regarding technology-based patient engagement strategies as part of the 2015 CAFM Educational Research Alliance (CERA) survey of PBRN directors. A total of 102 PBRN directors were identified via the Agency for Healthcare Research and Quality's registry; 54 of 96 eligible PBRN directors completed the survey, for a response rate of 56%., Results: Use of technology-based patient engagement strategies within PBRNs was limited, with less than half of respondents reporting experience with the most frequently named tools (risk assessments/decision aids). Information technology (IT) support was the top barrier, followed by low rates of portal enrollment. For engaging participant practices, workload and practice leadership were cited as most important, with fewer respondents noting concerns about patient privacy., Discussion: Given limited use of patient-facing technologies, PBRNs have an opportunity to clarify the optimal use of these strategies. Providing IT support and addressing clinician concerns regarding workload may facilitate the inclusion of innovative technologies in PBRNs., (© Copyright 2016 by the American Board of Family Medicine.)

Objectives: This study aimed to assess readability characteristics and layout features, including reading grade level, text point size, dimensions (length and width), diagrams, key directions (warnings, proper hygiene, preparation and use, and storage), and compliance to International Code provisions of English-language instructions affixed to a representative sample of brand-name and generic powdered, infant formula containers currently available for purchase in the US., Methods: During June 2014, comprehensive Internet searches were conducted to identify brand-name powdered infant formulas currently available for purchase in the US (n = 10). The English-language instruction section affixed to each formula container was evaluated for readability characteristics and layout features, including reading grade level, text point size, dimensions (length and width), diagrams, key directions (warnings, proper hygiene, preparation and use, and storage), and compliance to International Code., Results: Overall, containers were similar in circumference (50.8 ± 7.3 cm) and height (14.0 ± 0.0 cm) and held an average of 656.0 ± 12.3 g (range 629-663 g) of powdered infant formula. Both Directions for Preparation and Use and Storage Instructions sections had average reading difficulty scores at the college level. Step-by-Step Preparation Directions and Warnings and Safe Handling sections had reading difficulty between the 8th and 9th grade level. All container labels contained three diagrams depicting step-by-step preparation instructions and a feeding chart. Overall, infant formula containers reviewed in our study adhered to compliance to International Code provisions., Conclusions: As negative health outcomes are associated with inappropriately prepared infant formula feedings, healthcare providers should routinely query infant caregivers regarding their formula preparation and administration practices.

Objective: To examine trends in health insurance type among US children and their parents., Methods: Using the Medical Expenditure Panel Survey (1998-2011), we linked each child (n = 120,521; weighted n ≈ 70 million) with his or her parent or parents and assessed patterns of full-year health insurance type, stratified by income. We examined longitudinal insurance trends using joinpoint regression and further explored these trends with adjusted regression models., Results: When comparing 1998 to 2011, the percentage of low-income families with both child and parent or parents privately insured decreased from 29.2% to 19.1%, with an estimated decline of -0.86 (95% confidence interval, -1.10, -0.63) unadjusted percentage points per year; middle-income families experienced a drop from 74.5% to 66.3%, a yearly unadjusted percentage point decrease of -0.73 (95% confidence interval, -0.98, -0.48). The discordant pattern of publicly insured children with uninsured parents increased from 10.4% to 27.2% among low-income families and from 1.4% to 6.7% among middle-income families. Results from adjusted models were similar to joinpoint regression findings., Conclusions: During the past decade, low- and middle-income US families experienced a decrease in the percentage of child-parent pairs with private health insurance and pairs without insurance. Concurrently, there was a rise in discordant coverage patterns-mainly publicly insured children with uninsured parents., (Copyright © 2016 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Background and Objectives: Despite 21 million US adults having a disability, little is known about the types of disabilities among faculty in family medicine departments, accommodations used, or work limitations., Methods: We surveyed family medicine department chairs electronically about the number, types of disabilities encountered, accommodations and associated costs, and attitudes toward family medicine faculty with disabilities. This 10-item survey was part of the Council of Academic Family Medicine Educational Research Alliance omnibus survey. Data were summarized using descriptive statistics., Results: The survey response rate was 59% (88/148). Types of disabilities were reported for approximately 50 faculty members by 31 department chairs; only seven knew about the disability at hiring. The most common impairments were mobility, hearing, and mental health problems. Accommodations included adjusting schedules, additional time to meet tasks, and assistive technology. No additional costs were reported for accommodations by about one-third of respondents while costs were over $5,000 for approximately one-quarter. Most chairs reported that faculty performance was similar to peers without disabilities (42.2%) or adequate but not at the level of peers (40%); only one reported inadequate job performance. Faculty members with disabilities appeared to be accepted by peers, patients, learners, and staff, and only two faculty left their program because of the disability., Conclusions: Most chairs did not report experience with faculty members with disabilities. The disabilities encountered and accommodations were not unusual, but costs were sometimes high. While about half of chairs reported adequate or superior job performance for their faculty with disabilities, a sizeable minority judged such faculty to have poorer performance than peers despite reporting wide acceptance of faculty with disabilities by patients and colleagues. This study raises concerns about potential underreporting by faculty with disabilities and poorer perceived job performance despite wide acceptance and provision of accommodations, sometimes at high cost.

Background: Limited health literacy (HL) and numeracy have been shown to be associated with a wide array of poor health-related outcomes, knowledge, and behaviors. The purpose of this study was to evaluate the clinical utility of brief HL and numeracy screening items in identifying Spanish-speaking adults' HL and numeracy skills., Methods: We studied convenience samples of native Spanish-speaking adults in Columbus, Ohio. A trained research assistant administered sociodemographic items, HL and numeracy screening items, Short Assessment of Health Literacy (SAHL), and Newest Vital Sign (NVS) to participants in Spanish., Results: Participants (n = 151) averaged 36.8 ± 11.0 years of age and 54.7% were female. Average SAHL score was 15.7 ± 2.8 (range = 4 to 18), while the average NVS score was 1.7 ± 1.5 (range = 0 to 6). "How confident are you filling out medical forms by yourself?" performed best in detecting limited NVS scores (AUROC = 0.66; 95% confidence interval [CI] = 0.57-0.75), limited/marginal NVS scores (AUROC = 0.75; 95% CI = 0.65-0.84), and inadequate SAHL scores (AUROC = 0.69; 95% CI = 0.58-0.79)., Conclusion: A single HL screening item is useful for quickly estimating HL and numeracy skills in native Spanish-speaking adults.

The Patient-Centered Outcomes Research Institute has accelerated conversations about the importance of actively engaging stakeholders in all aspects of comparative effectiveness research (CER). Other scientific disciplines have a history of stakeholder engagement, yet few empirical examples exist of how these stakeholders can inform and enrich CER. Here we present a case study which includes the methods used to engage stakeholders, what we learned from them, and how we incorporated their ideas in a CER project. We selected stakeholders from key groups, built relationships with them and collected their feedback through interviews, observation and ongoing meetings during the four research process phases: proposal development, adapting study methods, understanding the context and information technology tool design and refinement.

Background: Oral contraceptives (OCs) are the most widely used contraceptive method among women of reproductive age in the United States (US). Routine download and use of health-related smartphone applications (apps) continues to increase., Objective: The purpose of this study was to evaluate the utility of English-language, smartphone-platform OC reminder apps currently available for download in the US., Methods: During June-July 2013, official Internet-based, mobile app platforms for the two major smartphone operating systems in the US-Android (Google Play Store) and iPhone (iTunes)-were searched. "Birth control," "the pill," and "contraception" were entered into the search-bar of each Smartphone store. Apps were assessed for the following: cost, health care professionals' involvement in app development, reminder mechanisms, and functionality., Results: Of the 39 unique OC reminder apps meeting inclusion criteria, 7 (18%) did not operate as intended when downloaded. Most apps functioned without an Internet connection (97%) and included pop-up notifications (84%)., Conclusions: Certain app features overcome common causes of missing an alarm, and hypothetically, may minimize likelihood of an OC user missing a daily pill. Health care providers should inform users of potential pitfalls and advise them that an OC reminder app should be not be used as a sole reminder method., (Copyright © 2015 Elsevier Inc. All rights reserved.)

To identify predictors of coverage continuity for United States children and assess how they have changed in the first 12 years since implementation of the Children's Health Insurance Program in 1997. Using data from the nationally-representative Medical Expenditure Panel Survey, we used logistic regression to identify predictors of discontinuity in 1998 and 2009 and compared differences between the 2 years. Having parents without continuous coverage was the greatest predictor of a child's coverage gap in both 1998 and 2009. Compared to children with at least one parent continuously covered, children whose parents did not have continuous coverage had a significantly higher relative risk (RR) of a coverage gap [RR 17.96, 95 % confidence interval (CI) 14.48-22.29 in 1998; RR 12.88, 95 % CI 10.41-15.93 in 2009]. In adjusted models, parental continuous coverage was the only significant predictor of discontinuous coverage for children (with one exception in 2009). The magnitude of the pattern was higher for privately-insured children [adjusted relative risk (aRR) 29.17, 95 % CI 20.99-40.53 in 1998; aRR 25.54, 95 % CI 19.41-33.61 in 2009] than publicly-insured children (aRR 5.72, 95 % CI 4.06-8.06 in 1998; aRR 4.53, 95 % CI 3.40-6.04 in 2009). Parental coverage continuity has a major influence on children's coverage continuity; this association remained even after public health insurance expansions for children. The Affordable Care Act will increase coverage for many adults; however, 'churning' on and off programs due to income fluctuations could result in coverage discontinuities for parents. If parental coverage instability persists, these discontinuities may continue to have a negative impact on children's coverage stability as well.

Objective: To examine academic family medicine physicians' current practices, experiences, beliefs, level of concern about negative outcomes, and confidence and comfort when prescribing opioid analgesics for chronic nonmalignant pain management., Design: Electronic cross-sectional survey., Participants: This study was part of the Council of Academic Family Medicine (CAFM) Educational Research Alliance omnibus survey of active academic US family physicians., Main Outcome Measures: Respondents completed survey items addressing their 1) sociodemographic and practice characteristics, 2) current opioid prescribing practices, 3) experiences and beliefs toward prescribing opioid analgesics for chronic nonmalignant pain management, 4) level of concern about negative opioid-related outcomes, and 5) confidence and comfort when prescribing opioid analgesics., Results: The majority of the sample (n=491) were male (57.8 percent) with 84.1 percent identifying themselves as non-Hispanic white. Nearly all respondents (91.0 percent) reported currently prescribing opioids to patients with chronic nonmalignant pain. Most respondents reported being confident (88.4 percent) and comfortable (76.2 percent) in their prescribing for patients with chronic nonmalignant pain. Family physicians who were comfortable in their opioid prescribing skills were more likely to report satisfaction in prescribing opioids to patients with chronic pain (ρ=0.494, p<0.001), while those who were confident in their opioid prescribing skills were more likely to identify pain management as high priority (ρ=-0.287, p<0.001)., Conclusions: Most academic family physicians currently prescribed opioid analgesics to patients with chronic nonmalignant pain. There was a strong inverse relationship between confidence regarding opioid prescription and concern about negative consequences. Similarly, comfort level was tied to increased satisfaction with the overall process of opioid prescription.

In the past decade, political and economic changes in the United States (US) have affected health insurance coverage for children and their parents. Most likely these policies have differentially affected coverage patterns for children (versus parents) and for low-income (versus high-income) families. We aimed to examine--qualitatively and quantitatively--the impact of changing health insurance coverage on US families. Primary data from interviews with Oregon families (2008-2010) were analyzed using an iterative process. Qualitative findings guided quantitative analyses of secondary data from the nationally-representative Medical Expenditure Panel Survey (MEPS) (1998-2009); we used Joinpoint Regression to assess average annual percent changes (AAPC) in health insurance trends, examining child and parent status and type of coverage stratified by income. Interviewees reported that although children gained coverage, parents lost coverage. MEPS analyses confirmed this trend; the percentage of children uninsured all year decreased from 9.6 % in 1998 to 6.1 % in 2009; AAPC = -3.1 % (95 % confidence interval [CI] from -5.1 to -1.0), while the percentage of parents uninsured all year rose from 13.6 % in 1998 to 17.1 % in 2009, AAPC = 2.7 % (95 % CI 1.8-3.7). Low-income families experienced the most significant changes in coverage. Between 1998 and 2009, as US children gained health insurance, their parents lost coverage. Children's health is adversely affected when parents are uninsured. Investigation beyond children's coverage rates is needed to understand how health insurance policies and changing health insurance coverage trends are impacting children's health.

Background and Objectives: Unfortunately, it is not uncommon for the reading demands of patient education materials (PEMs) to exceed the actual literacy abilities of the typical American adult. The purposes of this study were to (1) assess reading demands of English and Spanish language American Academy of Family Physicians (AAFP) PEMs and (2) examine whether reading demands of English language AAFP PEMs varied from 2004 to 2012., Methods: In December 2012, matched English and Spanish language AAFP PEMs, available via http://www.familydoctor.org, were downloaded and printed in their entirety (n=200). Reading demands of PEMs were assessed using the Lexile® analyzer, an Internet-based program that uses a combination of sentence length and word frequency to determine text comprehension difficulty., Results: Lexile scores of English language PEMs averaged 906.0 ± 80.2 (range=700--1,080), while mean Lexile scores of Spanish language PEMs was 874.2 ± 63.9 (range=700--1,060). Overall, reading demands of Spanish language PEMs were significantly lower than PEMs written in English (t=3.1, P<.01). In 2012, 59% of English language PEMs were written ?6th grade reading level, whereas in 2004 only 5% of PEMs were written ?6th grade reading level., Conclusions: The majority of currently available AAFP PEMS, in both English and Spanish, were written ?6th grade reading level. Since 2004, reading demands of AAFP PEMs have decreased substantially with the majority meeting recommended low-literacy guidelines. Future efforts should be used to revise and reformat all English and Spanish language AAFP PEMs to meet the established ?6th grade reading level.

Background: The purpose of this study was to explore average monthly cost of commonly prescribed oral and transvaginal contraceptives, across ZIP code income groups, in Florida., Study Design: In March, 2011, the MyFloridarx.com database was searched to assess monthly prices of seven commonly prescribed contraceptives charged by Florida pharmacies., Results: With the exception of TNRG/EE 35 (χ(2)[4, N=401]=18.72, p=.00), monthly costs of contraceptives did not vary significantly across Florida ZIP code median income quintile groups., Conclusion: Overall, while there was little variability in retail pharmacy prices in Florida for seven commonly prescribed contraceptives, monthly costs of individual contraceptives varied widely., Implications: This report found little variability, across ZIP codes, in retail pharmacy prices in Florida for seven commonly prescribed contraceptives, but the monthly costs of individual contraceptives varied widely. It is paramount that clinicians consider costs when discussing contraceptive options with their patients., (© 2013.)

Objective: A Smartphone app could be useful in aiding patients in self-monitoring and self-managing their chronic pain-related symptoms. The purpose of this study was to systematically review English-language pain-related Smartphone apps available for download in the United States., Design: During July 2012, official Android, BlackBerry, and iPhone Smartphone app platform stores were searched. "Pain" was entered into the search-bar of each Smartphone app store. Of the pain apps meeting inclusion criteria, the following were retrieved: release date, download cost (US dollars [US $], file size, documentation of a healthcare professional's (HCP) involvement in app development, primary purpose of the app (pain education, pain self-management, or a combination of pain education and self-management), targeted pain-related condition(s), and inclusion of features that addressed four common self-monitoring and/or management strategies., Results: Of the 220 apps meeting inclusion criteria, the majority were available through the iPhone (80.0 percent). The cost for downloading each app ranged from US $0.00 to 89.99; however, the majority of apps were ≤US $4.99. There was no evidence of HCP involvement in the development of the majority of apps (65.0 percent). Chronic, nonspecific pain was the focus of half (50.5 percent) of the apps, followed by back and/or neck pain (25.9 percent). The primary purpose of the apps was categorized as follows: pain education (n = 53, 24.1 percent), pain self-management (n = 137, 62.3 percent), and both pain education and self management (n = 30, 13.6 percent)., Conclusion: Overall, most of the pain-related apps included within our review not only lacked evidence of HCP input regarding development but also contained few evidence-based pain management features.