Communicating the results of risk-based breast cancer screening through visualizations of risk: a participatory design approach.

BACKGROUND: Risk-based breast cancer (BC) screening raises new questions regarding information provision and risk communication. This study aimed to: 1) investigate women's beliefs and knowledge (i.e., mental models) regarding BC risk and (risk-based) BC screening in view of implications for information development; 2) develop novel informational materials to communicate the screening result in risk-based BC screening, including risk visualizations of both quantitative and qualitative information, from a Human-Centered Design perspective. METHODS: Phase 1: Interviews were conducted (n = 15, 40-50 years, 5 lower health literate) on women's beliefs about BC risk and (risk-based) BC screening. Phase 2: In three participatory design sessions, women (n = 4-6 across sessions, 40-50 years, 2-3 lower health literate) made assignments and created and evaluated visualizations of risk information central to the screening result. Prototypes were evaluated in two additional sessions (n = 2, 54-62 years, 0-1 lower health literate). Phase 3: Experts (n = 5) and women (n = 9, 40-74 years) evaluated the resulting materials. Two other experts were consulted throughout the development process to ensure that the content of the information materials was accurate. Interviews were transcribed literally and analysed using qualitative thematic analysis, focusing on implications for information development. Notes, assignments and materials from the participatory design sessions were summarized and main themes were identified. RESULTS: Women in both interviews and design sessions were positive about risk-based BC screening, especially because personal risk factors would be taken into account. However, they emphasized that the rationale of risk-based screening and classification into a risk category should be clearly stated and visualized, especially for higher- and lower-risk categories (which may cause anxiety or feelings of unfairness due to a lower screening frequency). Women wanted to know their personal risk, preferably visualized in an icon array, and wanted advice on risk reduction and breast self-examination. However, most risk factors were considered modifiable by women, and the risk factor breast density was not known, implying that information should emphasize that BC risk depends on multiple factors, including breast density. CONCLUSIONS: The information materials, including risk visualizations of both quantitative and qualitative information, developed from a Human-Centered Design perspective and a mental model approach, were positively evaluated by the target group.

A content-quality and optimization analysis of YouTube as a source of patient information for bipolar disorder.

Background: The goal of this study was to identify and evaluate the use of Arabic YouTube videos on BD as a resource for patient education. Methods: A cross-sectional evaluation of YouTube videos as a source of information for patients with BD in Arabic was performed. The study was observational and, because it did not involve human subjects, it followed the STROBE guidelines whenever possible. The quality of the videos was assessed using the validated DISCERN instrument. The search strategy involved entering the term "bipolar disorder" in the YouTube search bar, and only YouTube videos in Arabic were included. Results: A total of 58 videos were included in this study after removing duplicates and videos unrelated to BD (Figure 1). The most common source of videos was others (38%), followed by physician (33%), educational (26%), and hospital (3%). Resources covering symptoms and prognosis were mostly in the "others" category (41%). The resources or videos that covered treatment options were mainly created by physicians (41%). However, resources or videos that included a personal story mainly belonged to the "others" category (67%). Conclusion: Visual health-related instructional resources still have a significant shortage. This study highlights the poor quality of videos about serious illnesses like BD. Evaluation and promotion of the creation of visual health-related educational resources should be the primary goal of future study.

Securing direct stakeholder feedback to inform clinical research in serious mental illness: Results of a patient and family perspectives survey.

Mental illness research routinely includes unfamiliar or potentially frightening procedures like lumbar puncture (LP), contributing to low enrollment and retention. Previous studies related to LP acceptance have focused on older individuals, and little information on participant preferences for educational materials is available. We developed an online survey assessing existing knowledge, comfort and concerns, and preferences for educational materials in the context of our clinical study on schizophrenia spectrum conditions (SSCs). We found that participants were generally knowledgeable and interested in engaging with clinical SSC research. Frequency of engagement with research publications differed significantly by participant groups and age. Comfort levels were consistently highest for study procedures other than LP, though surprisingly the average number of informational needs per procedure was not significantly different for LP compared to other procedures. Preferences for format and source of educational materials varied across participant groups and age. Our results suggest that younger individuals with an SSC diagnosis are likely to have limited exposure to information, and proactively providing accessible and accurate educational materials may improve positive perceptions of LP. Providing content in a range of formats and sources will ensure that participants and their support networks have access to their preferred resources.

Assessment of available online educational resources for patients with atrial fibrillation.

Background: A diagnosis of atrial fibrillation (AF) often leads patients to search online for information, which can expose them to information of varied quality. Objective: We conducted a qualitative systematic review of websites that contain useful information regarding AF. Methods: The following terms were searched on 3 search engines (Google/Yahoo/Bing): (Atrial fibrillation for patients), (What is atrial fibrillation), (Atrial fibrillation patient information), (Atrial fibrillation educational resources). Inclusion criteria included websites with comprehensive AF information and information about treatment options. The Patient Education Materials Assessment Tool for Printable Materials (PEMAT-P) and PEMAT for Audiovisual Materials assessed understandability and actionability (score range 0-100). Those with a mean PEMAT-P score of >70, meaning acceptable understandability and actionability, underwent DISCERN score assessment of information content quality and reliability (score range 16-80). Results: The search yielded 720 websites that underwent full review. After exclusions, 49 underwent full scoring. The mean overall PEMAT-P score was 69.3 ± 17.2. The mean PEMAT-AV score was 63.4 ± 13.6. Of the websites that scored >70% on the PEMAT-P, 23 (46%) underwent DISCERN scoring. The mean DISCERN score was 54.7 ± 4.6. Conclusions: There is a wide variation in the understandably, actionability, and quality of websites, many not providing patient-level materials. Knowledge of quality websites could provide an important adjunct for improving patients understanding of AF.

Development and Validation of Nutrition and Food Safety Educational Material for Fish Processors in Nigeria.

INTRODUCTION: fish can be an affordable and accessible animal-source food in many Low- and Middle-Income Countries (LMIC). BACKGROUND: Traditional fish processing methods pose a risk of exposing fish to various contaminants that may reduce their nutritional benefit. In addition, a lack of literacy may increase women fish processors' vulnerability to malnutrition and foodborne diseases. OBJECTIVE: The overall aim of the project was to educate women and youth fish processors in Delta State, Nigeria about the benefit of fish in the human diet and to develop low literacy tools to help them better market their products. The objective of this study was to describe the development and validation of a low-literacy flipbook designed to teach women fish processors about nutrition and food safety. METHOD: developing and validating instructional material requires understanding the population, high-quality and relevant graphics, and the involvement of relevant experts to conduct the content validation using the Content Validity Index (CVI) and the index value translated with the Modified Kappa Index (k). RESULT: The Item-level Content Validity Index (I-CVI) value of all domains evaluated at the initial stage was 0.83 and the Scale-level Content Validity Index (S-CVI) was 0.90. At the final stage, the material was validated with CVI 0.983 by four experts and satisfied the expected minimum CVI value for this study (CVI ≥ 0.83, p-value = 0.05). The overall evaluation of the newly developed and validated flipbook was "excellent". CONCLUSIONS: the developed material was found to be appropriate for training fish processors in Nigeria in nutrition and food safety and could be modified for a population of fish processors in other LMICs.

Enhancing Public Health Communication Regarding Vaccine Trials: Design and Development of the Pan-European VACCELERATE Toolkit.

BACKGROUND: The pan-European VACCELERATE network aims to implement the first transnational harmonized and sustainable vaccine trial Volunteer Registry, being a single entry point for potential volunteers of large-scale vaccine trials across Europe. This work exhibits a set of harmonized vaccine trial-related educational and promotional tools for the general public, designed and disseminated by the pan-European VACCELERATE network. OBJECTIVE: This study primarily aimed to design and develop a standard toolkit to increase positive attitudes and access to trustworthy information for better access and increased recruitment to vaccine trials for the public. More specifically, the produced tools are focused on inclusiveness and equity, and are targeting different population groups, including underserved ones, as potential volunteers for the VACCELERATE Volunteer Registry (older individuals, migrants, children, and adolescents). The promotional and educational material is aligned with the main objectives of the Volunteer Registry to increase public literacy and awareness regarding vaccine-related clinical research or trials and trial participation, including informed consent and legal issues, side effects, and frequently asked questions regarding vaccine trial design. METHODS: Tools were developed per the aims and principles of the VACCELERATE project, focusing on trial inclusiveness and equity, and are adjusted to local country-wise requirements to improve public health communication. The produced tools are selected based on the cognitive theory, inclusiveness, and equity of differently aged and underrepresented groups, and standardized material from several official trustworthy sources (eg, COVID-19 Vaccines Global Access; the European Centre for Disease Prevention and Control; the European Patients' Academy on Therapeutic Innovation; Gavi, the Vaccine Alliance; and the World Health Organization). A team of multidisciplinary specialists (infectious diseases, vaccine research, medicine, and education) edited and reviewed the subtitles and scripts of the educational videos, extended brochures, interactive cards, and puzzles. Graphic designers selected the color palette, audio settings, and dubbing for the video story-tales and implemented QR codes. RESULTS: This study presents the first set of harmonized promotional and educational materials and tools (ie, educational cards, educational and promotional videos, extended brochures, flyers, posters, and puzzles) for vaccine clinical research (eg, COVID-19 vaccines). These tools inform the public about possible benefits and disadvantages of trial participation and build confidence among participants about the safety and efficacy of COVID-19 vaccines and the health care system. This material has been translated into several languages and is intended to be freely and easily accessible to facilitate dissemination among VACCELERATE network participant countries and the European and global scientific, industrial, and public community. CONCLUSIONS: The produced material could help fill knowledge gaps of health care personnel, providing the appropriate future patient education for vaccine trials, and tackling vaccine hesitancy and parents' concerns for potential participation of children in vaccine trials.

Readability of online patient educational materials for common orthopaedic paediatric conditions within Australasia.

BACKGROUND: The role of patient educational materials for paediatric patients is increasing. A reading grade level of eighth-grade (USA) or year nine (Australia and New Zealand) is recommended as acceptable. The aim of this paper was to assess the reading grade levels of paediatric online patient educational materials, within Australasia. METHODS: The online Google® search engine was used with a variety of keyword combinations, filtered to the location of Australia and New Zealand. Suitable websites were explored for webpages related to slipped upper femoral epiphysis, septic arthritis, osteomyelitis, talipes equinovarus and developmental dysplasia of the hip. Readability was assessed using the online readability software WEB FX®. RESULTS: Seventy-six patient educational webpages were analysed: 66 from Australia and 10 from New Zealand. Only eight of the 76 webpages (10.5%) had reading grade levels below the recommended eighth-grade (US)/year nine (AUS/NZ) level. Webpages from private healthcare providers and pages related to septic arthritis had the significantly highest reading grades. CONCLUSIONS: Australasian families have limited online patient educational materials available to them, which are mostly set at reading grade levels above recommended standards. Healthcare providers should be incentivized to improve the readability of their patient educational materials to reduce health disparities and improve health literacy moving forward.

Educational Strategies to Promote Adherence to Treatment in Patients with Cardiovascular Disease.

INTRODUCTION: Educational material is a key strategy for primary health care promotion. PURPOSE: To design and validate educational material adapted to the population and aimed to increase knowledge about adherence to the treatment of arterial hypertension and diabetes mellitus. METHODOLOGY: Methodological study for the design of educational material for people with diabetes mellitus and high blood pressure. For the design, content validity tests were carried out, with the participation of six experts in health education and six patients with chronic diseases. Validation was performed pursuant to the attraction, understanding, engagement, and acceptance criteria. RESULTS: The validation confirmed that all items and criteria were above the minimal expected range. CONCLUSION: The design and validation of educational material provide elements that improve the education of patients about their pathologies and their adherence to treatment.

Social networks as education strategies for indigenous patients with rheumatoid arthritis during COVID-19 pandemic. Are they useful?

INTRODUCTION: The use of online education strategies has been introduced as a tool to support health care in patients with rheumatic disease. However, it is important to consider the patient's sociocultural environment. OBJECTIVE: To design and assessment of bilingual audiovisual material acceptability, by means of two social networks, for patients with rheumatoid arthritis (RA) in the qom community in Argentina. METHODS: A qualitative study was performed in two stages: (1) audiovisual material design, development, and validation implementing a collaborative action research method. (2) Publishing of the material on two social networks at two different times. The selected topic was the coronavirus disease 2019 impact on patients with RA. A qualitative and quantitative data analysis was performed. RESULTS: Forty subjects participated into the initial validation stage with a 70% acceptance rate. First, 28 subjects (70%) participated on Facebook and 25 (62.5%) joined the WhatsApp group. Then, the same number of subjects participated on Facebook, while only 45% of subjects participated on WhatsApp. Most of them participated using short phrases such as "I like it." The 60% of the participants played the videos. However, less than 10% shared them. Videos in Spanish were the once most shared. Participation dramatically fell during the second time, and 40% of the WhatsApp subjects never participated. CONCLUSION: The strategies developed for this indigenous community were of no utility, probably because of socio-cultural, economic, and digital barriers. They should be designed and implemented identifying the target group and its environment. Key Points • Online education strategies should be designed with cultural sensitivity. • Technological barriers make digital inequality visible in vulnerable groups. • Educational interventions should have a collaborative design and they should be created together with the communities. • The COVID-19 pandemic has deepened inequalities in the health care and follow-up of patients with rheumatic diseases, especially between most socially and economically disadvantaged groups.

Development and validation of an educational information web page for family members with relatives in the Intensive Care Unit (ICU).

AIM: This paper describes the development and validation of an educational information web page designed for family members who have relatives in the Intensive Care Unit (ICU). BACKGROUND: Family members with relatives in the ICU always encounter a stressful experience. Hence, healthcare providers play a crucial in educating and alleviating the psychological distress experienced by family members with relatives in the ICU. DESIGN AND METHODS: This study was a methodology research design. The educational information material was conducted in three stages: 1. Bibliographic survey; 2. Design and development of educational material; and 3. Validation of those materials by experts in the subject and representatives of the target audience and evaluation. The validation was performed by nine experts and 30 representatives of the target audience. A minimum value of 0.78 was recommended for Content Validation Index while a standard usability score value of 0.68 indicates good app usability. RESULT: The educational information material achieved acceptable CVI values (0.83) and the usability score of the web material was higher than 0.68. Meanwhile, the experts proposed changes to the educational information, which were accepted and updated for the final edition of the content. CONCLUSION: The educational information material was validated in terms of content and relevance and should be used by nurses to fulfil the needed information. Based on the knowledge given, healthcare providers can support, provide comfort, assurance and proximity to family members or relatives in the ICU. Future studies with this application are necessary to assess educational information effectiveness to reduce the psychological distress experienced by family members in the ICU.

Racial/ethnic health disparities in dermatology in the United States, part 1: Overview of contributing factors and management strategies.

Racial or ethnic disparities are prevalent in the field of dermatology. Part 1 of this continuing medical education series aims to elucidate contributors to racial and ethnic disparities within dermatology and highlight potential actionable steps to combat these disparities. We review access to care, workforce diversity, cultural competency, implicit bias, dermatologic education material, patient education, and clinical research. Part 2 of the continuing medical education series will address disease-specific inequities that influence the clinical practice of dermatology.

Assessing the knowledge, attitudes and barriers regarding health promotion of breast cancer among community pharmacists.

Aim: This study aimed to identify the perspective knowledge, attitudes, and barriers of community pharmacists in promoting breast cancer health. Methods: An internet-based self-administrated questionnaire was distributed using social media groups to the community pharmacists in Jordan. Results: A 76.7% of the pharmacists had insufficient knowledge score of breast cancer and 92.7% had positive attitude. Access to breast cancer educational materials was the major barrier to pharmacists. A significant association was found between pharmacists' knowledge and breast cancer educational materials being given to patients (p < 0.001). Conclusion: Despite the low breast cancer knowledge score and stated barriers that could prevent actualizing community pharmacists' role, they had positive attitude toward educating patients about breast cancer health.

The aim of this study was to evaluate pharmacists' knowledge, attitudes, and barriers about breast cancer health promotion among community pharmacists. An internet-based self-administrated questionnaire was distributed using social media groups to the community pharmacists in Jordan. A 76.7% of the pharmacists had poor knowledge score of breast cancer and 92.7% had positive attitude. The major barrier to pharmacists was access to breast cancer educational materials. A strong association was found between pharmacists' knowledge and breast cancer educational materials being given to patients. Also, community pharmacists had positive attitude toward educating patients about breast cancer health.

Qualitative validation of audiovisual educational material for use on rheumatoid arthritis patients.

Medication compliance is critical to achieve therapeutic efficacy in patients with rheumatoid arthritis; however, among other factors, low patient-health literacy plays a negative role. Therefore, the development and validation of audiovisual educational material with the participation of health specialists and patients could lead to an improved level of compliance with treatment, while favoring its acceptance. To design and validate audiovisual educational material generated by a multidisciplinary and participative group of patients and health specialists. This study was carried out using a sequential methodology, including qualitative and quantitative techniques: (1) a non-participative observational study with patients and a non-systematic literature search were performed to identify conceptual topics. (2) Pilot videos were qualitatively assessed by patients and health specialists (focus groups and expert committees). (3) Improved versions of seven videos were quantitatively evaluated by patients and specialists following qualitative criteria of attraction, understanding, involvement, acceptance and induction of action. 74 patients with RA, 10 rheumatologists, 4 pharmacists and 2 medical anthropologists participated in the different phases of validation. A total of seven videos lasting 3 min each were generated, incorporating the most relevant suggestions by patients and healthcare professionals. The final version of the videos led to a mean compliance of 96.04 ± 5.2%, according to a representative group of patients and a mean 89.6 ± 9.4%, according to health professionals. With the participation of both patients and health specialists, seven audiovisual educational video recordings were developed and validated, reaching high levels of compliance in accordance with international criteria.

CCR5 and Biological Complexity: The Need for Data Integration and Educational Materials to Address Genetic/Biological Reductionism at the Interface of Ethical, Legal, and Social Implications.

In the age of genomics, public understanding of complex scientific knowledge is critical. To combat reductionistic views, it is necessary to generate and organize educational material and data that keep pace with advances in genomics. The view that CCR5 is solely the receptor for HIV gave rise to demand to remove the gene in patients to create host HIV resistance, underestimating the broader roles and complex genetic inheritance of CCR5. A program aimed at providing research projects to undergraduates, known as CODE, has been expanded to build educational material for genes such as CCR5 in a rapid approach, exposing students and trainees to large bioinformatics databases and previous experiments for broader data to challenge commitment to biological reductionism. Our students organize expression databases, query environmental responses, assess genetic factors, generate protein models/dynamics, and profile evolutionary insights into a protein such as CCR5. The knowledgebase generated in the initiative opens the door for public educational information and tools (molecular videos, 3D printed models, and handouts), classroom materials, and strategy for future genetic ideas that can be distributed in formal, semiformal, and informal educational environments. This work highlights that many factors are missing from the reductionist view of CCR5, including the role of missense variants or expression of CCR5 with neurological phenotypes and the role of CCR5 and the delta32 variant in complex critical care patients with sepsis. When connected to genomic stories in the news, these tools offer critically needed Ethical, Legal, and Social Implication (ELSI) education to combat biological reductionism.

Readability of Online Patient Educational Materials for Coronary Artery Calcium Scans and Implications for Health Disparities.

Background Coronary artery calcium (CAC) scans can help reclassify risk and guide patient-clinician shared treatment decisions for cardiovascular disease prevention. Patients increasingly access online patient educational materials (OPEMs) to guide medical decision-making. The American Medical Association (AMA) recommends that OPEMs should be written below a 6th-grade reading level. This study estimated the readability of commonly accessed OPEMs on CAC scans. Methods and Results The terms "coronary artery calcium scan," "heart scan," and "CAC score" were queried using an online search engine to identify the top 50 commonly accessed websites based on order of search results on December 17, 2019. Grade-level readability was calculated using generalized estimating equations, with observations nested within readability metrics from each website. Results were compared with AMA-recommended readability parameters. Overall grade-level readability among all search terms was 10.9 (95% CI, 9.3-12.5). Average grade-level readability of OPEMs for the search terms "coronary artery calcium scan," "heart scan," and "CAC score," was 10.7 (95% CI, 9.0-12.5), 10.5 (95% CI, 8.9-12.1), and 11.9 (95% CI, 10.3-13.5), respectively. Professional society and news/media/blog websites had the highest average reading grade level of 12.6, while health system websites had the lowest average reading grade level of 10.0. Less than half of the unique websites (45.3%) included explanatory images or videos. Conclusions Current OPEMs on CAC scans are written at a higher reading level than recommended for the general public. This may lead to patient misunderstanding, which could exacerbate disparities in cardiovascular health among groups with lower health literacy.

Linking process indicators and clinical/safety outcomes to assess the effectiveness of abatacept (ORENCIA) patient alert cards in patients with rheumatoid arthritis.

PURPOSE: Patient alert cards (PACs) for abatacept (ORENCIA) inform patients and healthcare professionals (HCPs) about the risk of infections and allergic reactions. The study evaluates the effectiveness of the PACs in rheumatoid arthritis patients and HCPs, using process indicators (awareness, receipt, utility, knowledge, behaviour) and outcomes. METHODS: Surveys of patients and HCPs in five European countries. A retrospective chart review permitted linking clinical and safety outcomes with survey responses. RESULTS: Data on 190 patients and 79 HCPs (50 physicians and 29 nurses) were analysed. Sixty percent of patients were aware of the PAC, of whom 95% had received it. Knowledge of risk of infection was higher among patients who had received the PAC vs those who had not (64% vs 46%; P = .013). Infections leading to hospitalisation increased with decreasing patient survey global scores: scores of ≥67%, 34%-67% and ≤ 33% were associated with hospitalisation rates of 2.5%, 5.2% and 8.4%, respectively (P = .4). Among HCPs 90% were aware and 68% had accessed the PAC. More nurses than physicians were aware (93% vs 88%), had accessed (78% vs 74%), read (90% vs 59%), distributed (81% vs 66%) and explained the content (94% vs 43%) of the PAC. Knowledge of risk of infection was higher among HCPs who had (91%) vs those who had not (73%) accessed the PAC (P = .053). CONCLUSIONS: PACs were effective in improving knowledge of key safety messages in patients and HCPs. This novel study design bridges the gap of linking process indicators with outcomes in the same patients, thereby strengthening the clinical relevance of patient surveys.

Existencia de materiales educativos sobre epilepsia en Latinoamérica: fase exploratoria / Existence of epilepsy educational materials in Latin America: exploratory phase

La epilepsia, afecta al 2-4% de la población general, siendo más frecuente en países en desarrollo, debido al deficiente entorno, condiciones y calidad de vida de las personas. El tratamiento de las crisis epilépticas es fundamental, pero tan importante como aquello, es el manejo del estigma y la discriminación que en muchos casos lleva aparejado a esta condición. El International Bureau for Epilepsy (IBE), International League Against Epilepsy (ILAE), Organización Panamericana de la Salud (OPS), Organización Mundial de la Salud (OMS) y los diferentes ministerios y organizaciones regionales latinoamericanos y del caribe, han estado trabajando sobre esta problemática. Es así como se hizo el documento de las Estrategias y Plan de acción sobre Epilepsia, en el cual, en uno de sus cuatro ejes programáticos está muy destacado, la educación a todo nivel. El Comité Regional Latinoamericano del IBE (REC-LA), en consonancia con dicho Plan Estratégico, se ha propuesto indagar en una primera fase, sobre el material educativo en epilepsia que existe en Latinoamérica, para posteriormente poder tener acceso y compartirlo. El objetivo es entrenar y educarnos respectivamente ya sea a profesionales de la salud como público en general y poder contribuir a sacar la epilepsia de las sombras, mejorando de esta manera la calidad de vida de las personas con epilepsia y su entorno. Aquí se muestra la primera etapa exploratoria del material educativo existente.

Epilepsy affects 2-4% of the general population, being more common in developing countries, due to the population's poor environment, conditions and quality of life. Treatment of seizures is essential, but just as important is the management of stigma and discrimination. The International Bureau for Epilepsy (IBE), International League Against Epilepsy (ILAE), Pan American Health Organization (PAHO), World Health Organization (WHO) and the various ministries and regional organizations have been working on this problem. This is how the document of the Strategies and Plan of Action on Epilepsy was made, in which one of its four programmatic axes, education at all levels, is very prominent. The Latin American Regional Committee of the IBE (REC-LA), in line with this Strategic Plan, has proposed a first phase to investigate the educational material in epilepsy that exists in Latin America, to be later able to access and share it. The goal is to train and educate both health professionals and the general public, and to help cast light on epilepsy, improving the quality of life of people with epilepsy and their environment. Here is the first exploratory stage of the existing educational material.

Patient-oriented online resources in pediatric surgery: Are we failing the readability test?

BACKGROUND: The study aim was to evaluate the readability of patient-oriented resources in pediatric surgery from children's hospitals in the US. METHODS: The websites of 30 children's hospitals were evaluated for information on 10 common pediatric surgical procedures. Hospitals of varying characteristics including bed number, geographic location and ACS Children's Surgery Verification (CSV) were selected for the study. Readability scores were calculated using validated algorithms, and text was assigned an overall grade level. RESULTS: Of 195 patient-oriented resources identified, only three (2%) were written at or below the recommended sixth grade level. Larger hospitals provided patient information at a higher grade level than medium and smaller sized centers (10.7 vs 9.3 vs 9.0 respectively, p < 0.001). Hospital size also correlated with availability of information, with large and medium sized hospitals having information more often. Hospitals with ACS CSV had information available more often, and written at a lower grade level, compared to nonverified centers (78% vs 62%, p = 0.023; 9.0 vs 10.0, p = 0.013). CONCLUSION: Most hospital provided patient-oriented resources in pediatric surgery are written at a grade level well above the national guidelines. Centers with ACS CSV status have improved availability and readability of this material, while larger hospitals have improved availability, but decreased readability. TYPE OF STUDY: Modeling study. LEVEL OF EVIDENCE: III.

Development and Testing of a Decision Aid for Unaffected Women with a BRCA1 or BRCA2 Mutation.

For women who are unaffected carriers of a pathogenic BRCA mutation, cancer risk management requires ongoing education, counseling, and support from an interdisciplinary team of medical specialists, genetic counselors, and nurses specializing in genomics. The purpose of this study was to develop and pilot test an educational, patient-focused decision aid to facilitate shared decision making. A steering committee developed the prototype aid after an extensive review of the literature. The aid was designed at the ninth-grade reading level, to be consistent with internationally accepted clinical guidelines and inclusive of all risk management options and psychosocial issues important to cancer risk management decision making. The aid was tested with 23 participants: eight experts and 15 end users. Eleven survey items were asked related to organization, clarity, usefulness, comprehensiveness, ease of understanding, and relevance to the cancer risk management decision-making process. Mean scores were 3 or higher on Likert scales of 1-4 (high) for each of the 11 items. Two open-ended questions elicited general comments and suggestions for additions, deletions, or revisions to the decision aid. The steering committee made final revisions to the aid based on participant feedback and committee consensus.

Keberkesanan Bahan Pendidikan Bercetak untuk Pengurusan Pemakanan dalam Kalangan Penjaga Pesakit Kanser Kanak-kanak (Effectiveness of Printed Educational Material on Nutrition Management Among Paediatric Oncology Caregives) / Jurnal Sains Kesihatan Malaysia

@#Malnutrition is a common occurrence during cancer treatment among pediatric cancer patients and without proper care, it can bring negative implications. The purpose of this study was to develop a printed educational material titled “Penjagaan Pemakanan untuk Penjaga Kanser Kanak-Kanak” (Nutrition Care for Children with Cancer) to help the caregivers to manage their child in terms of nutrition. The objective of this study was to evaluate caregiver’s knowledge, attitude and practice (KAP) before and after receiving the printed educational material and to evaluate the acceptance of the printed educational material among caregiver. This quantitative study (Quasi-Experiment) was conducted among pediatric oncology caregivers in Institute of Pediatrics Hospital Kuala Lumpur (IPHKL)(n=34) and Universiti Kebangsaan Malaysia Medical Center (UKMMC)(n=34). IPHKL served as the experimental group where the caregivers received the developed booklet meanwhile UKMMC served as the control group where the caregivers received a pamphlet published by Institut Kanser Negara titled “Terapi Diet Pesakit Kanser – Kesan Sampingan Rawatan dan Cara Mengatasinya” (Nutrition Care for Cancer – How to Overcome the Side Effects of the Treatment). Results from this study showed that there was a significant increase (p<0.05) for KAP of the caregivers in both groups with a higher increase was seen in the experimental group. The score for KAP in the experimental group was (70 ± 8%) and after receiving the printed educational material, the score significantly increased to (92 ± 10%) which was higher compared to control group where their score before was (70 ± 11%) and increased to (77 ± 10%). For the evaluation of acceptance, there was a significant difference (p<0.05) for the mean score between experimental group (48.85 ± 4.931) and control (42.29 ± 6.834) with t= 4.538. In conclusion, the printed educational material developed from this study was well accepted and has the potential to effectively increase caregivers’ nutritional knowledge of managing the nutritional aspect of pediatric cancer patients during treatment. This could improve their nutritional status for a better clinical outcome.