Improving health literacy: use of an informational brochure improves parents' understanding of their child's fluoroscopic examination.

Pe d i a t r i c I m a g i n g • O r i g i n a l R e s e a r c h Gebhard et al. Improving Health Literacy

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Pediatric Imaging Original Research

Improving Health Literacy: Use of an Informational Brochure Improves Parents’ Understanding of Their Child’s Fluoroscopic Examination Robyn D. Gebhard1 Marilyn J. Goske2 Shelia R. Salisbury 3 A. Catherine Leopard2 Dianne M. Hater 2 Gebhard RD, Goske MJ, Salisbury SR, Leopard AC, Hater DM

Keywords: children, communication, fluoroscopy, patient education, radiation protection DOI:10.2214/AJR.14.12573 Received January 21, 2014; accepted after revision April 20, 2014. Based on a presentation at the Society for Pediatric Radiology 2012 annual meeting, San Francisco, CA. 1 University of Cincinnati College of Medicine, Cincinnati, OH. 2 Department of Radiology, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Ave, Cincinnati, OH 45229-3030. Address correspondence to M. J. Goske ([email protected]). 3 Division of Biostatistics and Epidemiology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH.

WEB This is a web exclusive article. AJR 2015; 204:W95–W103 0361–803X/15/2041–W95 © American Roentgen Ray Society

OBJECTIVE. The purpose of this study was to determine parents’ knowledge about pediatric fluoroscopic procedures and potential risk from ionizing radiation before and after being given an informational brochure. SUBJECTS AND METHODS. We reviewed responses from 120 randomly selected participants who were parents or guardians of pediatric patients undergoing diagnostic fluoroscopic examinations. A questionnaire assessed participants’ knowledge of the procedure, radiation exposure, and whether their child had a prior examination before and after receiving an informational brochure. In a feedback survey, participants rated the brochure. A repeated measures mixed model was used to evaluate the effect of the brochure on the participants’ knowledge. RESULTS. Participant demographics were women (79%), English speaking (99%), white (90%), and education higher than 12th grade (76%). The median age of patients undergoing the fluoroscopic examination was 4 years. Participant knowledge increased (p < 0.0001) between pre- and postbrochure (least-squares means) for those without a previous examination from 38.3 to 63.4 (total test score) and from 46.3 to 61.8 for those with a prior examination. The proportion of correct answers was higher (p < 0.0001) postbrochure compared with prebrochure in areas of examination name (99% vs 93%), procedure details (97% vs 87%); use of radiation (100% vs 68%), and radiation dose comparison (79% vs 25%). Overall, 99% (119/120) rated the brochure “good” or “great” (p < 0.0001). CONCLUSION. An informational brochure given to participants before their child’s fluoroscopic procedure improved their knowledge of the examination and radiation exposure. No participants refused their child’s examination.

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oor health literacy is a significant problem in the United States, with profound health implications. In 2004, the Institute of Medicine (IOM) issued a pivotal report on medical literacy in the United States. In it, health literacy was defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” [1]. The American Medical Association (AMA) Council of Scientific Affairs more specifically defined functional health literacy as “the ability to read and comprehend prescription bottles, appointment slips, and the other essential health-related materials required to successfully function as a patient” [2]. The IOM report indicated that approximately 90 million Americans have a poor understanding of written text [1, 3]; even those with strong literacy skills may have difficul-

ty understanding health information [1]. Although more than 20% of adults read at the lowest reading level (5th grade or lower) [3], most health care materials are written at approximately the 10th grade level [4]. This difference may lead to misinformation and potentially complicate an already stressful patient-care situation. Medical literacy is further challenged because 20% of Americans speak a language other than English at home [5]. There is little published health literacy research in radiology, and most published reports relate to CT [6, 7]. In a study of parents of pediatric patients undergoing CT by Larson et al. [6], 100 parents were asked to fill out a questionnaire before and after reading a brochure about CT and radiation exposure. Before reading the handout, only 68% of parents knew that CT uses radiation. After reading the handout, this number increased to 100%, showing that parental knowledge about CT increased with the use of a simple

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Gebhard et al. handout. The purpose of our study was to determine parents’ knowledge about pediatric fluoroscopic procedures and potential risk from ionizing radiation before and after being given an informational brochure. In addition, we sought feedback from participants regarding the brochure to further improve its content and design. Subjects and Methods Participants An education exemption was obtained from the institutional review board; this prospective study was HIPAA compliant. Participants were parents or guardians of children or developmentally challenged adults who were outpatients undergoing routine fluoroscopic examinations at a large academic children’s hospital. These examinations included video swallow study, voiding cystourethrography (VCUG), upper gastrointestinal (UGI) study, UGI small-bowel follow-through (SBFT) study, and contrast enema. The brochures are available as open source documents on the Image Gently website (www.imagegently.org) at the following link: imagegently.dnnstaging.com/Procedures/Fluoroscopy.aspx. Each weekday, three patients were randomly selected (plan procedure

in SAS, version 9.3) and approached to participate in the study on the basis of a computer-generated randomization scheme predetermined by the statistician. A study administrator (child life specialist or family advocate) asked the participant (not patients) to complete a prebrochure questionnaire, read an educational brochure, and complete a postbrochure questionnaire. Finally, a feedback survey was administered to assess participants’ satisfaction with the brochure and to provide information to the authors to improve its design and content. No questionnaire or survey was given to the participant until the previous form was returned to the administrator. This process was repeated until 120 completed survey packets were obtained.

Informational Brochure An interdisciplinary team composed of a pediatric radiologist, professional educator, child life expert, family advocate, statistician, and an artist developed four informational brochures about the five common fluoroscopic examinations. After a definition of fluoroscopy, each handout described the individual procedure and examination name, risks involved, what the doctors may learn, what to expect after the examination, and information on radiation exposure (Fig. 1). Photographs of the

equipment, anatomic diagrams, and a table comparing radiation from the procedure with other radiation sources were also included in the brochures. Brochures were in part based on brochures developed by the Alliance for Radiation Safety in Pediatric Imaging (www.imagegently.org). Finally, additional sources of information on radiologic procedures were listed. The brochure readability, as determined by the Flesch-Kincaid method using Microsoft Word word-processing software, was grade level 5.1, 4.9, 5.0, and 5.2 for the video swallow study, VCUG, UGI, UGI SBFT, and contrast enema brochures, respectively.

Questionnaire and Feedback Survey The pre- and postbrochure questionnaires contained 11 questions (eight multiple choice and three yes or no) regarding the content of the brochure, such as participant knowledge of the procedure, radiation exposure, and availability of information regarding the procedure (Appendix 1). In addition, the prebrochure questionnaire asked four demographic questions (sex, native language, education, and ethnicity or race) but was otherwise identical to the postbrochure questionnaire. The feedback survey was the hospital’s standard education material feedback form (Appen-

Fig. 1—Photograph shows brochure used in this study.

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Improving Health Literacy dix 2). Participants were asked to rate the brochure on a scale of 0–3 on the basis of readability, ease of key point identification, images, medical terminology explanation, and overall impression. Participants were also asked if they would recommend this brochure and why and whether they had any suggestions for improvement of the educational material.

Scoring The knowledge questions of the pre- and postbrochure questionnaires were scored and compared. Participants were given 10 points for each of the seven knowledge questions they answered correctly, for a possible total score of 70. Question number 2 had the potential for multiple answers regarding what the doctor was looking for with the examination and requested that participants “circle all answers that apply.” A score of 3.33 was given for each of the three correct answers, with a 10 awarded if all three were circled. If a question was answered incorrectly or left unanswered, a score of 0 was given for that question.

Statistical Analysis Primary analyses—The primary statistical analyses were performed to determine whether the educational intervention improved health literacy and the participant’s satisfaction with the educational brochure. The two primary outcomes of interest were a change in total test score and participant satisfaction. All analyses were performed using SAS, version 9.3 statistical software with two-sided tests

and a family-wise significance level of 0.05. The test-specific significance level was 0.025 for each of the two primary outcomes of interest. A binary variable called “group” was generated to categorize subjects as to whether their child had ever undergone a fluoroscopic examination. Participant demographics were compared between the two groups using chi-square, Fisher exact test, or the binomial test for categoric data. Test scores—For each survey (pre- and postbrochure), a total test score was generated by summing the scores for each answer. To account for correlation between repeated measures on the same subject, multivariable analysis was performed using repeated measures in the mixed procedure with the Kenward-Roger correction. The model included group and time as fixed effects and subject as a random effect. Time was a dummy variable representing the prebrochure (time = 1) and postbrochure (time = 2) surveys. The interaction between group and time was used to examine differences in test scores over time for each group. A significance level of 0.006 was used for each of the four comparisons of interest. Leastsquare means and 95% CIs are reported. Participant satisfaction—A binary variable was used to indicate whether the participant was satisfied with the brochure, and the proportions were compared using the binomial test. Secondary analyses—For each survey question, the binomial test was used to compare the proportion of subjects with the correct answer between those with and without previous fluoroscop-

ic examinations and between the pre- and postbrochure surveys.

Results Demographics One hundred twenty-eight parents or guardians were approached; 121 agreed to participate in the study. Of those, 120 completed the questionnaires and survey. Table 1 denotes the participant demographics. Seventy-nine percent (95/120) of participants were women and 99% (119/120) reported English as the native language. Participant ethnicity was white (90%, 108/120), with 76% (91/120) achieving an education level higher than 12th grade. The median age of children whose parents or guardians participated in the study was 4 years (range, 0.03–30 years). There was no significant age difference between the children of participants and nonparticipants (median, 12 years; range, 0.4–28.0 years). VCUG was the most common procedure performed (46%, 55/120), followed by video swallow study (21%, 25/120), contrast enema (16%, 20/120), UGI (13%, 15/120), and UGI SBFT (4%, 5/120). For 53% (63/120) of participants, this was the first time their child had undergone a fluoroscopic examination. There were no significant differences in participant sex, language, race, or education between subjects with and without a previous examination (Table 1).

TABLE 1: Demographics of Parents or Guardians by Previous Radiology Examination Has Child Undergone This Radiology Examination Before?

Total (n = 120)

Yes (n = 56)a

No (n = 63)

Boys

95/120 (79)

43/95 (45)

51/95 (54)

Girls

24/120 (20)

13/24 (54)

11/24 (46)

108/120 (90)

53/108 (49)

54/108 (50)

Sexb

0.6111

Raceb White

0.2239

African American

7/120 (6)

1/7 (14)

6/7 (86)

Other

3/120 (3)

1/3 (33)

2/3 (67)

119/120 (99)

56/119 (47)

62/119 (52)

English languageb

p

Education (highest grade completed)b

0.2689 0.7637

0–5

1/120 (1)

1/1 (100)

0/1 (0)

6–8

2/120 (2)

1/2 (50)

1/2 (50)

9–10

1/120 (1)

1/1 (100)

0/1 (0)

11–12

24/120 (20)

12/24 (50)

12/24 (50)

More than 12th grade

91/120 (76)

41/91 (45)

49/91 (54)

Note—Except for p, data are number/total with percentage in parentheses. aData as to whether child had a previous radiology examination missing for one participant. bDemographic data missing for one patient.



Gebhard et al. Knowledge Questions: Scores The overall results of the questionnaire regarding knowledge of the fluoroscopic procedure and use of radiation are displayed in Table 2. The total postbrochure scores were higher than the total prebrochure scores for patients who had undergone a previous examination and for those who had never undergone an examination (p < 0.0001 for both) (Table 3). The least-squares means and 95% CIs for the total prebrochure scores were 46.3 and 43.3–49.3 for those with a previous examination and 38.3 and 35.3–41.3 for those without a previous examination. The least-squares means and 95% CIs for the total postbrochure scores were 61.8 and 59.7–63.8 for those with a previous examination and 63.3 and 61.8–64.8 for those without a previous examination. The prebrochure scores were higher for those with a previous examination than those without a previous examination (p = 0.0003). However, there was no difference in the postbrochure scores between those with and without a previous examination (p = 0.2129). The proportion of participants who knew the name of their child’s scheduled examination increased from 93% (111/120) before the brochure to 99% (119/120) after the brochure (p < 0.0001). Before the brochure, only 68% (82/120) of participants knew that the fluoroscopic examination involved radiation compared with 100% (120/120) afterward (p < 0.0001). The proportion of participants who considered themselves informed about the fluoroscopy examination increased significantly after reading the brochure (81%, 95/118 vs 99%, 116/117 (p < 0.0001), and the proportion of participants who desired more information decreased significantly (59%, 71/120 vs 23%, 27/120 (p < 0.0001). Participants identified their sources of information as the referring physician (62%, 74/120); previous knowledge (34%, 41/120); the Internet (10%, 12/120); the scheduling center (9%, 11/120); friends, family, or other parents (7%, 8/120); a prior informational brochure (4%, 5/120); and child life specialists (4%, 5/120). A few (5%, 6/119) reported that they had found or received no information. Feedback on Brochure: Survey Results Overall, 99% (119/120) of participants rated the brochure 2 or higher on a 3-point scale, with 92% (110/120) rating the brochure 3 (p < 0.0001). Written feedback was uniformly excellent. Comments included that the brochure was “very informative and

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TABLE 2: Number of Participants With Correct Answers to Questions About Fluoroscopic Procedures Before and After Reading Educational Brochure (n = 120) Question Topic

Prebrochure

Postbrochure

111/120 (93)

119/120 (99)a

No correct answers

19/120 (16)

6/120 (5)

One correct answer

73/120 (61)

42/120 (35)

Two correct answers

16/120 (13)

33/120 (28)

Three correct answers

12/120 (10)

39/120 (33)

Procedure details

104/120 (87)

116/120 (97)a

Length of examination

66/120 (55)

113/120 (94)a

Use of radiation (yes/no)

82/120 (68)

120/120 (100)a

Comparison of radiation dose with time in sun

30/120 (25)

95/120 (79)a

When examination results will be available

64/120 (53)

114/120 (95)a

Subjects with any previous fluoroscopic examinations

56/120 (47)

Name of examination What doctor will learnb

Note—Except for p, data are number/total with percentage in parentheses. ap < 0.0001 for differences between pre- vs postbrochure in proportion of participants with correct answer. bp < 0.0001 for difference between pre- vs postbrochure score.

TABLE 3: Least-Squares Mean and 95% CI of Total Test Score (Possible Score of 70) for Participants Whose Child Did or Did Not Undergo Previous Fluoroscopic Examination Parameter

Prebrochure

Postbrochure

Subjects without any previous fluoroscopic examination (n = 63/120, 53%)a

38.3 (35.3–41.3)b

63.3 (61.8–64.8)c

Subjects with a previous fluoroscopic examination (n = 56/120, 47%)

46.3 (43.3–49.3)

61.8 (59.7–63.8)c

Note—Data are mean with 95% CI in parentheses. aOne participant did not answer the question about a previous test. bp < 0.0003 for differences between subjects with vs without a previous fluoroscopic examination. cp < 0.0001 for differences between pre- vs postbrochure.

easy to read and explain to others what is going on during the examination,” “this information would be great to send before appointments or have available from referring physicians,” and “I want to thank you for giving me this survey and brochure because I really didn’t know anything about this examination before I came.” Only three participants said that they would not recommend the brochure to others. Reasons given were that “it seemed to focus on the extreme fears people have and not the positive. If I had any reservations before I would have more after” and “they don’t need it.” Specific suggestions for improving the brochures included providing more details on the procedure, such as how the catheter would be inserted for the VCUG; whether pain medication or restraints would be used; and the suggestion that the brochure be provided to the referring doctors’ office. All suggested content was inserted, and the authors worked with depart-

ment management to distribute the brochure to referring physicians. Discussion Nearly all of the participants (93%, 111/120) in our study correctly identified the procedure their child was about to undergo before they read the educational brochure. This number is significantly greater than previous radiology studies, which found that only 40–50% of patients presenting for outpatient imaging studies knew what type of examination they were scheduled to undergo [8, 9]. The reason for this high level of examination name recognition is likely that nearly half (47%, 56/120) of patients in our study had previously undergone the same procedure. In addition, the participants in our study had a particularly high level of education, with 76% (91/120) having more than a 12th grade education, despite the fact that nationwide most Americans read at the



Improving Health Literacy 8th grade level and 20% read at or below the 5th grade level [1, 3]. Low health literacy is particularly prevalent among elderly, minority, and poor persons and those with less than a high school education [10, 11]; however, in our study, most participants were white (90%, 108/120), with English as their native language (99%, 119/120). The results of the questionnaires show that both groups of participants, those whose child came for the examination for the first time and those whose child had undergone the examination previously, were able to learn a significant amount of information from the brochure (p < 0.0001). The scores of the participants whose children had not previously undergone the fluoroscopic examination increased from a least-squares mean of 38.3–63.3 of 70 total points. Participants whose child had undergone the procedure previously started with a higher baseline level of knowledge (least-squares mean score, 46.3). However, they did not have a significantly higher final score on the knowledge questionnaire than participants whose child had not undergone the examination previously (63.3 vs 61.8, p = 0.2129). The need for improved health literacy is important because approximately 80 million U.S. adults have been shown to have limited health literacy [12]. Low health literacy in adults has been associated with increased hospitalizations and emergency department visits, poorer ability to interpret medication labels, and increased mortality in elderly patients [12]. Research on parental literacy and its impact on child health outcomes is more limited [11]; however, parents with lower levels of literacy had poor health knowledge and exhibited behaviors that were less advantageous for their children’s health compared with parents with higher literacy levels [13]. Fifty percent of parents “have difficulty reading and understanding patient education materials and many struggle” to understand medical advice that is critical to the care of their child [14]. Because children are dependent on parents and caregivers for health care, low adult literacy has the potential for detrimental implications for children [15], including the association between lower levels of parental literacy and poor child glycemic control [16], poor oral health [15], and lower asthma care measures [17]. A recent study of parental knowledge of radiation exposure in medical imaging conducted through the emergency department found that 60% of caregivers did not associate any

long-term negative effects with ionizing radiation used for medical imaging [18]. Providing educational materials that are easy to read before the imaging examination may be a step toward involving patients and parents in their health care and empowering them to ask questions to ensure their understanding of their child’s imaging examination and the implications the results may have on the child’s health care. Before reading the brochure, only 68% (82/120) of participants were aware that the fluoroscopic examinations involved radiation. This number is similar to a CT study by Larson et al. [6], in which 66% of patients believed that CT uses radiation before reading the educational materials provided in the study. Although the risks of imaging-related radiation exposure are difficult to quantify at radiation doses used in diagnostic fluoroscopy, physicians have an obligation to act cautiously and inform patients that there may be an increased although low risk of cancer related to ionizing radiation [19]. Education about radiation exposure can be accomplished in a way that informs, but not scare. When put in context with comparisons to everyday life, the potential risk of radiation can be quantified in a way that most parents can understand. In the study by Larson et al. [6], when parents were informed of the radiation risks through educational materials, no parent refused the examination. Similarly, 32% (38/120) of participants in our study learned that the imaging examination involved radiation by reading our brochure; however, none of them refused the examination. Providing health information in a way that patients of varied educational and health literacy backgrounds can comprehend is important so that all patients can participate in informed decision making [20, 21]. Although investigators in adult medicine and pediatrics have begun to evaluate interventions to improve health literacy [22–30], there has been little reported in the radiology literature. Lee et al. [7] evaluated the level of knowledge of patients, radiologists, and clinicians who refer patients for radiologic examinations regarding the use of ionizing radiation. Those authors found that patients were not given information about the risks, benefits, and radiation dose for CT, and that patients, emergency department physicians ordering CT, and radiologists alike were “unable to provide accurate estimates of CT dose” [7]. Our study showed that a simple educational brochure significantly in-

creased participants’ health literacy with regard to their child’s fluoroscopic procedure as well as estimates of radiation dose associated with the procedure. The majority of participants (62%, 74/120) in this study stated that they received their information about the fluoroscopic examination from their referring physician. Because so few of them understood what the physician was looking for in the examination, it seems that referring physicians either do not have adequate information about the imaging studies themselves or they are not sufficiently sharing that information with the patients and parents or guardians. As noted in the study by Lee et al. [7], referring physicians were largely uninformed about radiation dose and a possible increased cancer risk associated with a diagnostic CT examination. This highlights the importance of making procedural and radiation information more widely available to both patients and referring physicians. After reading the educational brochure, 23% (27/120) of participants still wanted more information. It has been previously shown that patients vary widely in the amount of information that they want regarding their health procedures [9, 31]. Therefore, it may be beneficial to develop other sources of information for those who desire it. Interactive audiovisual aids can improve knowledge and assist with decision making [11, 21, 32]. Providing audiovisual aids or other alternative sources of information, such as face-to-face interactions, may be useful for some patients and their parents or guardians [9]. Recent published commentaries have described the need for radiologists to focus on informed decision making in which education of patients rather than legal documentation as in informed consent is the goal [33, 34]. Informed decision making conveys the issues involved in medical procedures and may provide the information in several different formats to address the needs of individuals of various educational backgrounds [33]. This patient-centered approach emphasizes the need for patients to be informed so that they can be as autonomous as possible in decisions about procedures [33]. This study was limited by selection bias; we encountered a relatively homogeneous population. With 90% (108/120) of the study population white and 76% (91/120) having more than a 12th grade education, our results were likely skewed toward patients with higher baseline health literacy. In addition,



Gebhard et al. we only tested knowledge before and immediately after reading the brochure. Although other investigators have examined recall at a later date [35], we thought that long-term retention was not as important for these typically infrequent procedures. In conclusion, we found that a simple brochure about fluoroscopic procedures significantly improved participants’ knowledge about the examination name, how it is performed, the examination length, and how soon results would be available. It also significantly increased awareness of the relative radiation exposure during the imaging examination. Participants were overwhelmingly pleased with the design of the brochure and the information it provided. As partners with our patients and their families in health care and with a renewed emphasis on patient centered care, now may be the time for providers of imaging services to reliably distribute a simple brochure before all pediatric fluoroscopic imaging procedures. Acknowledgment We thank Jan L. Warren for the artwork used in the fluoroscopy brochures. References 1. Institute of Medicine. Health literacy: a prescription to end confusion. Washington, DC: National Academies Press, 2004 2. [No authors listed]. Health literacy: report of the Council on Scientific Affairs Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association. JAMA 1999; 281:552–557 3. Kirsch IS, Jungeblut A, Jenkins L, Kolstad A. Adult literacy in America. Washington, DC: United States Department of Education, 2002 4. Safeer RS, Keenan J. Health literacy: the gap between physicians and patients. Am Fam Physician 2005; 72:463–468 5. U.S. Census Bureau website. Statistics: 2010. quickfacts.census.gov/qfd/states/00000.html. Accessed September 11, 2014 6. Larson DB, Rader SB, Forman HP, Fenton LZ. Informing parents about CT radiation exposure in children: it’s OK to tell them. AJR 2007; 189:271–275 7. Lee CI, Haims AH, Monico EP, Brink JA, Forman HP. Diagnostic CT scans: assessment of patient, physician, and radiologist awareness of radiation dose and possible risks. Radiology 2004; 231:393–398

8. Chesson RA, McKenzie GA, Mathers SA. What do patients know about ultrasound, CT and MRI? Clin Radiol 2002; 57:477–482 9. Mathers SA, Chesson RA, McKenzie GA. The information needs of people attending for computed tomography (CT): what are they and how can they be met? Patient Educ Couns 2009; 77:272–278 10. Kutner M, Greenberg E, Jin Y, Paulsen C. The health literacy of america’s adults: results from the 2003 National Assessment of Adult Literacy (NCES 2006-483). Washington, DC: National Center for Education Statistics, U.S. Department of Education, 2006 11. Yin HS, Forbis SG, Dreyer BP. Health literacy and pediatric health. Curr Probl Pediatr Adolesc Health Care 2007; 37:258–286 12. Berkman ND, Sheridan SL, Donahue KE, Halpern DJ, Crotty K. Low health literacy and health outcomes: an updated systematic review. Ann Intern Med 2011; 155:97–107 13. DeWalt DA, Hink A. Health literacy and child health outcomes: a systematic review of the literature. Pediatrics 2009; 124(suppl 3):S265–S274 14. Cheng TL, Dreyer BP, Jenkins RR. Introduction: child health disparities and health literacy. Pediatrics 2009; 124(suppl 3):S161–S162 15. Miller E, Lee JY, DeWalt DA, Vann WF Jr. Impact of caregiver literacy on children’s oral health outcomes. Pediatrics 2010; 126:107–114 16. Ross LA, Frier BM, Kelnar CJ, Deary IJ. Child and parental mental ability and glycaemic control in children with type 1 diabetes. Diabet Med 2001; 18:364–369 17. DeWalt DA, Dilling MH, Rosenthal MS, Pignone MP. Low parental literacy is associated with worse asthma care measures in children. Ambul Pediatr 2007; 7:25–31 18. Hartwig HD, Clingenpeel J, Perkins AM, Rose W, Abdullah-Anyiwo J. Parental knowledge of radiation exposure in medical imaging used in the pediatric emergency department. Pediatr Emerg Care 2013; 29:705–709 19. Brenner DJ, Hall EJ. Computed tomography: an increasing source of radiation exposure. N Engl J Med 2007; 357:2277–2284 20. Goske MJ, Bulas D. Improving health literacy: informed decision-making rather than informed consent for CT scans in children. Pediatr Radiol 2009; 39:901–903 21. Kim SP, Knight SJ, Tomori C, et al. Health literacy and shared decision making for prostate cancer patients with low socioeconomic status. Cancer Invest 2001; 19:684–691 22. Pignone MP, DeWalt DA. Health literacy and

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APPENDIX I: Parent Medical Literacy in Fluoroscopy Survey 1. What test is your child having done today? a. Video swallow study (VSS) b. Voiding cystourethrogram (VCUG) c. Upper gastrointestinal d. Upper gastrointestinal with small-bowel follow-through e. Contrast enema f. Unsure 2. What are you or your doctor going to learn from this test? (Please circle all that apply) a. We will learn the cause of my child’s medical problem. b. The test will show body parts and how they are working. c. The test will tell my doctor when the problem will go away. d. The test will tell my doctor how to fix my child’s medical problem. e. I am not sure what this test will tell my doctor. 3. What do you think will happen during this test? a. A soft slender tube will be placed in the bladder and contrast will be given through it. Once the contrast fills the bladder, the child will be asked to urinate. During this time x-ray pictures will be taken of the bladder and kidneys. b. A soft tube will be placed in the rectum and contrast will be given through it to fill the large intestine (colon). During this time x-ray pictures will be taken of the large intestine. c. The child will drink/eat food mixed with contrast while x-rays are taken of the mouth and throat. d. The child will drink contrast while x-ray pictures are taken of the stomach and/or small intestine. e. Unsure 4. Has your child had this test before? (Please circle all that apply) a. Yes, here at Cincinnati Children’s Hospital Medical Center b. Yes, at a different hospital c. No, this is the first time 5. How long do you think your child will be in the examination? a. 10–15 minutes b. 30–45 minutes c. 1 hour d. Up to 3 hours 6. Where did you get information about this test? (Please circle all that apply) a. Internet b. Referring physician / pediatrician c. Friends / family / other parents d. Previous knowledge e. Information brochure f. Child life specialist g. Scheduling center h. Other i. No information was found / given 7. Do you feel informed about the test? a. Yes b. No 8. Do you want more information about the test? a. Yes b. No 9. When will your doctor get the results of this test? a. 1 day b. 2–3 days c. 1 week d. 1 month (Appendix I continues on next page)


Gebhard et al.


APPENDIX I: Parent Medical Literacy in Fluoroscopy Survey (continued) 10. Does the test your child is having use radiation? a. Yes b. No 11. If the test uses radiation, how much time in the sun would equal the radiation used in this test? a. 0 days in the sun b. 1 day to 2 years in the sun c. 3–5 years in the sun d. 6–10 years in the sun 12. What is your gender? a. Male b. Female 13. What is your native language? a. English b. Spanish c. French d. German e. Other 14. What is the highest grade level that you completed? a. 0–5 b. 6–8 c. 9–10 d. 11–12 e. More than 12th grade 15. What is your ethnicity/race? a. American Indian or Alaska Native b. Asian c. Black or African American d. Hispanic e. Native Hawaiian or other Pacific Island f. Other g. White or Caucasian h. Unknown i. Prefer to not answer this question

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Improving Health Literacy APPENDIX 2: Patient/Family Education Materials Feedback Survey


Participant # Patient/Family Education Materials Feedback Survey Please take a few minutes to review this new patient/family education material: I am a:  Parent  Family member of patient  Other (describe) Please read this material and rate it using the following scale: 1 means “poor” 2 means “OK” 3 means “great” Select 0 if the item does not apply to this material. Does Not Apply

Poor

OK

Great

1. The material is easy to read and understand.

0

1

2

3

2. I can easily pick out the key points.

0

1

2

3

3. The pictures, drawings are easy to understand.

0

1

2

3

4. Medical terms are explained.

0

1

2

3

5. Overall, what did you think of this brochure?

0

1

2

3

6. Would you recommend this material to your family or friends?  Yes  No If no, why not?___________________________________________________________________________________________________ 7. Do you have any other comments or suggestions?________________________________________________________________________ ________________________________________________________________________________________________________________ ________________________________________________________________________________________________________________ Thank you for your help. Form adapted from the University of Washington Medical Center, Patient and Family Education Services, Easy Writer 4.0 worksheet.


Understanding health literacy.

Health Literacy Among Parents of Newborn Infants.

Parents' Oral Health Literacy and its Impact on their Children's Dental Health Status.

Parents as Teachers Health Literacy Demonstration project: integrating an empowerment model of health literacy promotion into home-based parent education.

Improving evidence-based practices through health literacy.

Social Network Analysis of Elders' Health Literacy and their Use of Online Health Information.

Predictors of Health Literacy and Numeracy Concordance Among Adolescents With Special Health Care Needs and Their Parents.

Cell phone-based health education messaging improves health literacy.

Informational needs of child and adolescent cancer patients and their parents.

Improving Malawian teachers' mental health knowledge and attitudes: an integrated school mental health literacy approach.

Communication Is Part of the Cure: Improving Health Literacy.

Evaluation of health literacy tools for correct prescription understanding.

An examination of autism spectrum traits in adolescents with anorexia nervosa and their parents.

Understanding and Improving Cardiovascular Health: An Update on the American Heart Association's Concept of Cardiovascular Health.

Improving evidence-based practices through health literacy--reply.

An exploration of women offenders' health literacy.

The use of illustrations and narrative text style to improve readability of a health education brochure.

Understanding and using fluoroscopic dose display information.

Insights in Public Health: Community Involvement in Developing a Human Papillomavirus (HPV) Vaccine Brochure Made for Parents in Hawai'i.

The Nuances of Health Literacy, Nutrition Literacy, and Food Literacy.

[Perception of parents about second hand smoke on the health of their children: an ethnographic study].

Eating disorders "mental health literacy": an introduction.

Health literacy in adolescents: an integrative review.

[How do citizens in Germany assess their own Health Literacy?].