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BACKGROUND: This study was designed to develop and validate a brief adolescent health literacy assessment tool (Rapid Estimate of Adolescent Literacy in Medicine Short Form [REALM-TeenS]). METHODS: We combined datasets from 2 existing research studies that used the REALM-Teen (n = 665) and conducted an item response theory analysis. The correlation between scores on the original 66-item REALM-Teen and the proposed REALM-TeenS was calculated, along with the decision consistency across forms with respect to grade level assignment of each adolescent and coefficient α. The proposed REALM-TeenS was validated with original REALM-Teen data from a third independent study (n = 174). RESULTS: Items with the largest discriminations across the scale, from low to high health literacy, were selected for inclusion in REALM-TeenS. From those, a set of 10 items was selected that maintained a reasonable level of SE across ability estimates and correlated highly (r = 0.92) with the original REALM-Teen scores. The coefficient α for the 10-item REALM-TeenS was .82. There was no evidence of model misfit (root mean square error of approximation < 0.001). In the validation sample, REALM-TeenS scores correlated highly with scores on the original REALM-Teen (r = 0.92), and the decision consistency across both forms was 80%. In pilot testing, administration took ∼20 seconds. CONCLUSIONS: The REALM-TeenS offers researchers and clinicians a brief validated screening tool that can be used to assess adolescent health literacy in a variety of settings. Scoring guidelines ensure that reading level assessment is appropriate by age and grade.

The relationship between literacy and health outcomes are well documented in adult medicine, yet specific causal pathways are not entirely clear. Despite an incomplete understanding of the problem, numerous interventions have already been implemented with variable success. Many of those who proposed earlier strategies assumed the problem to originate from reading difficulties only. Given the timely need for more effective interventions, it is of increasing importance to reconsider the meaning of health literacy to advance our conceptual understanding of the problem and how best to respond. One potentially effective approach might involve recognizing the known associations between a larger set of cognitive and psychosocial abilities with functional literacy skills. Here we review the current health literacy definition and literature and draw on relevant research from the fields of education, cognitive science, and psychology. In this framework, a research agenda is proposed that considers an individual's "health-learning capacity," which refers to the broad constellation of cognitive and psychosocial skills from which patients or family members must draw to effectively promote, protect, and manage their own or a child's health. This new, related concept will lead, ideally, to more effective ways of thinking about health literacy interventions, including the design of health-education materials, instructional strategies, and the delivery of health care services to support patients and families across the life span.

OBJECTIVES. The purpose of this study was to identify what stakeholders considered best practices for parent-provider communication regarding newborn hearing screening and diagnosis. We used consensus data to develop educational materials for parents. METHODS. We conducted 29 focus groups and 23 individual interviews between October 2003 and May 2004. Participants included (1) English- and Spanish-speaking parents of infants RESULTS. Communication to parents about hospital-based newborn hearing screening was limited. Most parents first learned about the screening in the hospital, but all stakeholders thought a more opportune time for education was before the birth. For parents of infants who did not pass the newborn hearing screening, stakeholders recommended direct communication about the urgency of diagnostic testing. They also indicated that primary care providers needed current information regarding hearing screening, diagnostic testing, and early intervention. All stakeholders thought that a brief brochure for parents to take home would be helpful for hospital-based screening and, if necessary, subsequent diagnostic testing. Primary care providers requested basic, to-the-point information. CONCLUSIONS. The most opportune time to begin discussion of newborn hearing screening is before the birth. Providers need up-to-date information on current standards of hearing screening, diagnosis, and intervention. User-friendly patient education materials, such as those we developed, could assist providers in educating parents.

OBJECTIVE. The purpose of this study was to measure the readability and user-friendliness (clarity, complexity, organization, appearance, and cultural appropriateness of materials) of parent education brochures on newborn screening.METHODS. We studied English-language versions of the brochures that state newborn screening programs prepare and distribute. We obtained brochures from 48 states and Puerto Rico. We evaluated each brochure for readability with the Flesch reading ease formula. User-friendliness of the brochures was assessed with an instrument we created that contained 22 specific criteria grouped into 5 categories, ie, layout, illustrations, message, manageable information, and cultural appropriateness.RESULTS. Most current newborn screening brochures should be revised to make them more readable and user-friendly for parents. Ninety-two percent of brochures were written at a reading level that is higher than the average reading level of US adults (eighth-grade level). In most brochures, the essential information for parents was buried. Although all brochures were brief and focused on the newborn screening tests being performed, 81% needed improvement in getting to the point quickly and making it easy for parents to identify what they needed to know or to do. None of the brochures scored high in all 22 criteria on the user-friendliness checklist.CONCLUSIONS. Parent education materials about newborn screening should be revised to be easier to read and more user-friendly, by lowering the reading difficulty to eighth-grade level and focusing on issues such as layout, illustrations, message, information, and cultural appropriateness. It is important that state newborn screening programs and organizations work with parents to develop and to evaluate materials to ensure that they are user-friendly.

Background. Medical information pamphlets often are written using language that requires a reading level higher than parents of many pediatric patients have achieved. Anecdotal reports suggest that many parents may not readily understand the federally mandated Public Health Service vaccine information pamphlets prepared by the Centers for Disease Control and Prevention (CDC) in 1991. The level at which the pamphlets need to be written for low-reading-level parents is undetermined, as is whether parents reading at higher levels will accept low-reading-level materials. Methods. To determine whether a simple pamphlet prepared at a low reading level using qualitative and adult education techniques would be preferable to the available CDC polio vaccine information pamphlet, we conducted an integrated qualitative-quantitative study. We compared the parent reading time and comprehension of a simplified pamphlet (Louisiana State University, LSU) comprising 4 pages, 322 words, 7 instructional graphics, and a text requiring a 6th grade reading ability with the equivalent 1991 CDC vaccine information pamphlet comprising 16 pages, 18,117 words, no graphics, and a text requiring a 10th grade reading level. We measured the reading ability of 522 parents of pediatric patients from northwest Louisiana seen at public clinics (81%) and in a private office (19%). Of the entire group, 39% were white, 60% African-American, and 1% Hispanic; the mean age was 29 years; the mean highest grade completed was 12th grade 3 months; and the reading level was less than 9th grade in 47% of parents and less than 7th grade in 20%. After parents were given one of the pamphlets to read, their reading time, comprehension, and attitude toward the pamphlet were measured. Results. Mean comprehension was 15% lower for CDC than for LSU (56% vs 72% correct; P < .001) and reading time was three times longer for CDC than for LSU (13 minutes 47 seconds vs 4 minutes 20 seconds; P < .0001). These trends were significant for parents reading at all but the lowest levels. Mean comprehension and reading time did not differ among parents reading at the third grade level or less. However, mean comprehension was greater and reading time lower for LSU among parents at all reading abilities greater than the third grade. Parents in the private practice setting took the longest time to read the CDC (20 minutes 59 seconds vs 5 minutes 46 seconds, LSU), yet their comprehension on the LSU was significantly higher than on the CDC (94% vs 71%; P < .0001). Two focus groups of high-income parents were unanimous in preferring the LSU. Conclusions. A short, simply written pamphlet with instructional graphics was preferred by high- and low-income parents seen in private and public clinics. The sixth grade reading level appears to be too high for many parents in public clinics; new materials aimed at third to fourth grade levels may be required. The new 1994 CDC immunization materials, written at the eighth grade level, may still be inappropriately high. The American medical community should adopt available techniques for the development of more effective patient-parent education materials.

OBJECTIVES:To pilot-test a visual aid developed to help counsel pregnant women.METHODS:After agreeing to participate, pregnant women at >28 weeks of gestation were assigned randomly to counseling with or without a visual aid. The visual aid contained pictures, graphics, and short messages about delivery room resuscitation, chances of survival, anticipated neonatal course, and long-term neurodevelopmental disabilities. A neonatal fellow performed counseling with a standardized script for an anticipated delivery at 23 weeks of gestation. In precounseling and postcounseling sessions, women were given a structured interview to assess their knowledge of chances of survival and disability and attitudes toward resuscitation.RESULTS:Of the 89 women who participated, 76% were black and 59% read below a 9th-grade level. Compared with the no–visual aid group, women in the visual aid group recalled more disabilities and predicted longer neonatal stays (P = .01). For both groups, mothers' perceptions of the chances of survival were lower after counseling; the decrease was greater in the visual aid group (P = .03). The majority of women in each group opted for resuscitation, which was not affected by counseling. In multivariate analyses, use of the visual aid was a significant independent factor in explaining before/after differences in survival chances and recall of a long NICU stay and number of disabilities; higher literacy levels also were significant for recalling the number of disabilities.CONCLUSIONS:Use of a visual aid improved mothers' knowledge and showed promise as a decision aid for counseling at the threshold of viability.

The relationship between literacy and health outcomes are well documented in adult medicine, yet specific causal pathways are not entirely clear. Despite an incomplete understanding of the problem, numerous interventions have already been implemented with variable success. Many of those who proposed earlier strategies assumed the problem to originate from reading difficulties only. Given the timely need for more effective interventions, it is of increasing importance to reconsider the meaning of health literacy to advance our conceptual understanding of the problem and how best to respond. One potentially effective approach might involve recognizing the known associations between a larger set of cognitive and psychosocial abilities with functional literacy skills. Here we review the current health literacy definition and literature and draw on relevant research from the fields of education, cognitive science, and psychology. In this framework, a research agenda is proposed that considers an individual's "health-learning capacity," which refers to the broad constellation of cognitive and psychosocial skills from which patients or family members must draw to effectively promote, protect, and manage their own or a child's health. This new, related concept will lead, ideally, to more effective ways of thinking about health literacy interventions, including the design of health-education materials, instructional strategies, and the delivery of health care services to support patients and families across the life span.

OBJECTIVE. The magnitude and consequences of low literacy in adolescent health and health care are unknown. The purpose of this study was to validate the Rapid Estimate of Adolescent Literacy in Medicine (REALM-Teen), a word-recognition test in English that can be used as a brief literacy-screening tool in health care settings. PATIENTS AND METHODS. A total of 1533 adolescents aged 10 to 19 years attending 1 of 5 middle schools, 3 high schools, 1 pediatric clinic, or 2 summer programs in Louisiana and North Carolina participated in face-to-face interviews. Demographic information was solicited, and participants were administered a battery of reading tests, including the REALM-Teen, Wide Range Achievement Test–Revised (WRAT-3), and Slosson Oral Reading Test–Revised (SORT-R). Internal consistency for the REALM-Teen was determined using Cronbach’s α, and criterion validity was established through correlations with both the WRAT-R and SORT-R. Using reading below grade level (according to SORT-R scores) as an outcome, instrument accuracy and corresponding cutoff scores were calculated by plotting receiver operating characteristic curves and stratum-specific likelihood ratios. RESULTS. Participants were 50% black and 53% female; 34% were enrolled in middle school and 66% in high school. The average time required to administer the REALM-Teen was 3 minutes. Internal consistency was excellent, as was test-retest reliability. The REALM-Teen is strongly correlated with both the WRAT-R and SORT-R. Five reading level categories were identified: 3rd grade and below, 4th to 5th grade, 6th to 7th grade, 8th to 9th grade, and 10th grade and above. Forty-six percent of participants were reading below grade level according to the SORT-R and 28% had repeated at least 1 grade. CONCLUSION. The REALM-Teen is a brief, reliable instrument for assessing adolescent literacy skills and reading below grade level.

OBJECTIVES. The aims of this study were to determine parent and provider knowledge and awareness of newborn screening; to gather opinions from parents, providers, and newborn screening professionals about the content and timing of newborn screening education; and to use consensus data to formulate recommendations and to develop educational materials for parents and providers.METHODS. We conducted 22 focus groups and 3 individual interviews between October 2003 and May 2004, with English- and Spanish-speaking parents of infants RESULTS. Parents and providers had limited knowledge and awareness about newborn screening practices. Parents wanted brief to-the-point information on newborn screening and its benefits, including the possible need for retesting and the importance of returning promptly for retesting if initial results are abnormal. Parents wanted the information orally from the primary care provider. Parents, providers, and newborn screening professionals all thought that an accompanying concise, easy-to-read brochure with contact information would be helpful. All focus group participants thought that parents should receive this information before the birth of the infant, preferably in the third trimester of pregnancy. Providers wanted a brief checklist of information and resources to prepare them to educate parents effectively.CONCLUSIONS. We recommend prenatal and primary care providers be more involved in educating parents about newborn screening. Professional societies and state health officials should work together to encourage parent and provider education. User-friendly patient and provider education materials, such as those we developed, could form the basis for this educational approach.

Communication about childhood vaccine risks and benefits has been legally required in pediatric health care for over a decade. However, little is known about the actual practice of vaccine risk/benefit communication.Objectives. This study was conducted to identify current practices of childhood vaccine risk/benefit communication in private physician office settings nationally. Specifically, we wanted to determine what written materials were given, by whom, and when; what information providers thought parents wanted/needed to know, the content of nurse and doctor discussion with parents, and the time spent on discussion. We also wanted to quantify barriers to vaccine risk/benefit discussion and to prioritize materials and dissemination methods preferred as solutions to these barriers.Methods. We conducted 32 focus groups in 6 cities, and then administered a 27-question cross-sectional mailed survey from March to September 1998, to a random national sample of physicians and their office nurses who immunize children in private practices. Eligible survey respondents were active fellows of the American Academy of Pediatrics or American Academy of Family Physicians in private practice who immunized children and a nurse from each physician's office. After 3 mailings, the response rate was 71%.Results. Sixty-nine percent of pediatricians and 72% of family physicians self-reported their offices gave parents the Centers for Disease Control and Prevention Vaccine Information Statement, while 62% and 58%, respectively, gave it with every dose. In ∼70% of immunization visits, physicians and nurses reported initiating discussion of the following: common side effects, when to call the clinic and the immunization schedule. However, physicians reported rarely initiating discussion regarding contraindications (Stratified analysis indicated nurses played a vital role in immunization delivery and risk/benefit communication. To improve vaccine risk/benefit communication, 80% of all providers recommended a preimmunization booklet for parents and approximately one half recommended a screening sheet for contraindications and poster for immunization reference. The learning method most highly endorsed by all providers was practical materials (80%). Other desirable learning methods varied significantly by provider type.Conclusions. There was a mismatch between the legal mandate for Vaccine Information Statement distribution and the actual practice in private office settings. The majority of providers reported discussing some aspect of vaccine communication but 40% indicated that they did not mention risks. Legal and professional guidelines for appropriate content and delivery of vaccine communication need to be clarified and to be made easily accessible for busy private practitioners. Efforts to improve risk/benefit communication in private practice should take into consideration the limited time available in an office well-infant visit and should be aimed at both the nurse and physician.