The Availability and Readability of Multilingual Online Patient Materials for Legg-Calve-Perthes Disease

Abstract

Background

Patients newly diagnosed with Legg-Calve-Perthes disease (LCPD) often use the internet to learn about their disease. The American Medical Association (AMA) and the National Institutes of Health (NIH) recommend writing patient education resources at sixth- to eigth-grade reading levels. The purpose of this study was to determine the availability of online patient education resources for LCPD, assess the availability of translation to other languages, and analyze the readability of English-language resources.

Methods

A cross-sectional analysis was conducted to determine the availability and readability of online, written patient education materials for LCPD. The top 50 pediatric orthopaedic hospitals, as reported by the U.S. News and World Report, major professional societies (the American Academy of Orthopaedic Surgeons [AAOS], the American Academy of Pediatrics [AAP], and the Pediatric Orthopaedic Society of North America [POSNA]), and international societies (POSNA “Alliance Societies”) were included. The number of translations to other languages was determined among the institutions with English resources. Three different readability measures were used on resources written in English. Statistical analysis was performed using descriptive, univariate, and correlation analyses.

Results

Seventy-four percent (37/50) of hospitals, 67% (2/3) of U.S.-based professional societies, and 16% (5/31) of international societies provided LCPD education resources. Of the hospitals and societies that provided English resources, 36% (14/39) provided translation to other languages. The most common language available was Spanish. Resources written in English had an average Flesch Reading Ease score of 60.5, Fry Graph grade level of 9.6, and Simple Measure of Gobbledygook (SMOG) grade level of 11.4. There was no significant relationship between hospital rank and availability (P > .05) or reading level (P > .05) of resources and no significant relationship between a state's percentage of Spanish speakers and availability of Spanish translations (P > .05).

Conclusions

Most selected hospitals and U.S.-based professional societies provided information about LCPD; however, many did not provide translation to other languages. There is a discrepancy between the reading level of the resources queried and national reading level recommendations. There is a need for translated LCPD resources from hospitals and societies domestically and abroad to provide adequate patient education, particularly for individuals with lower reading levels or non-English speakers.

Key Concepts

• (1)Online patient educational materials across United States hospitals and major pediatric orthopaedic societies for Legg-Calve-Perthes disease (LCPD) were written above the recommended English reading levels.
• (2)There is a limited availability of patient educational material written in non-English languages despite a large percentage of non-English speakers in the United States.
• (3)While Spanish is the most common non-English language spoken in the United States, there was no increase in the availability of educational materials written in Spanish in states with a population >20% Spanish speakers.

Level of Evidence

III

Introduction

The US Census Bureau estimates that 21.7% of individuals over the age of 5 speak a language other than English, with Spanish being the most common language spoken. Of the 21.7% of individuals, 25.1 million self-identify as speaking English not “very well” [1]. Unfortunately, one of the most significant health disparities in United States health care is the language barrier for patients whose native language is not English. As non–English speaking populations continue to grow, the language discordance between non–English speaking patients and the predominantly English-based healthcare system will likely grow as well [2]. Notably, past research has demonstrated a correlation between language barriers, such as limited English proficiency (LEP), and increased likelihood of poor health outcomes [3]. Health literacy is 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” [4]. Studies show that individuals with low health literacy have worse health outcomes, including higher hospitalization rates, worsening disease development, and even have higher mortality rates [5]. Health literacy does not start or end at a hospital as patients research information about a given disease or condition before and after meeting with a physician. A study on the readability of peer-reviewed patient education materials found that most resources were written above the recommended sixth- through eighth-grade level set by the American Medical Association (AMA) and the National Institutes of Health (NIH) [6]. These findings have been replicated in other specialties and across languages, including Spanish [7].

Patient education can be a feasible avenue to approach language discordance by offering easy-to-understand material to LEP individuals. Research suggests that limited English speakers have lower a likelihood of speaking up and questioning decisions from the clinician and presumably need additional educational resources [8]. Additionally, within pediatric orthopaedics, parental health literacy has been an obstacle for families when attempting to understand and navigate treatment [[9], [10], [11], [12]]. A study looking at pediatric patients with spina bifida found patients with a higher health literacy reported higher health-related quality of life [13]. Furthermore, language concordance has been shown to decrease misunderstanding in medical situations and increase understanding of adverse effects while also helping build trust and strengthen communication [10,11]. Patient education could help improve patient concordance as these materials are created in various media covering several aspects of a condition; however, they are focused on improving patient engagement through education. A greater patient engagement goes beyond improving outcomes to enhancing patient confidence and overall experience [14]. A previous study within pediatric orthopaedic identified that when printed educational materials were not given to patients, patients were more likely to turn to the Internet, thus highlighting the importance of providing accessible educational material online [15]. Often times, patients turn to the more easily accessible websites for information, such as YouTube, Wikipedia, and other social media platforms that have been found to have low credibility scores and inaccurate information [16]. Creating more educational materials and improving existing material in educational websites like hospitals and national societies could help reduce misinformation.

Legg-Calve-Perthes disease (LCPD) is an idiopathic osteonecrosis or idiopathic avascular necrosis of the capital femoral epiphysis of the femoral head. LCPD affects 1 in 1200 children between the ages of 3 and 15 years [17]. Management of LCPD can often be complex and can vary between nonoperative symptom management or corrective surgery based on risk factors, age of onset, and alternative treatments [18]. It can be challenging to explain the pathophysiology and natural history of this condition, and patients and families with LCPD need considerable health education to ensure compliance. Previous studies investigating other pediatric orthopaedic conditions, such as developmental dysplasia of the hip (DHH) and adolescent idiopathic scoliosis (AIS), and slipped capital femoral epiphysis (SCFE), have found a discrepancy in both the availability of patient information and readability in both English and Spanish languages [[19], [20], [21]]. LCPD's etiology remains unclear, and management of the disease can vary based on progression, making it a difficult disease for patients and their families to understand [22]. Additionally, while the highest incidence of LCPD is found in individuals of European descent, it does affect individuals of other ethnicities and other languages whom existing resources may not be targeting. Furthermore, there is no known review on the availability and readability of LCPD. The purpose of this study was to determine the availability and readability of online educational resources in languages other than English offered by the top pediatric orthopaedic hospitals as well as major domestic and international professional societies. We hypothesized that a minority of hospitals and professional societies would offer non–English language resources and that the majority of them would be of higher-than-established readability standards.

Materials and methods

We conducted a cross-sectional analysis to determine the availability and readability of online, written patient education materials provided by top-ranked hospitals, major United States–based professional societies, and international professional societies. Specifically, we used the 2023 U.S. News and World Report to guide our search for the top 50 hospitals ranked for pediatric orthopaedics. We also included three U.S.-based professional societies: the American Academy of Orthopaedic Surgeons (AAOS/OrthoInfo), the Pediatric Orthopaedic Society of North America (POSNA/OrthoKids), and the American Academy of Pediatrics (AAP/Healthy Children). To determine the availability of resources internationally, we included all “Alliance Societies” listed on the POSNA website.

Search strategy

We searched top hospital and professional society websites for patient education materials for LCPD in English. We used an exhaustive search strategy across all hospitals and societies. We first used the search terms “Legg-Calve-Perthes-Disease,” “Perthes,” and/or “LCPD.” If the search yielded no results, the website was searched for an encyclopedia of terms or definitions. As a final search strategy, we used an internet search engine to search for the previously listed search terms and the hospital's or society's name. Available patient education resources met the criteria if they were online, publicly available, affiliated with the specific hospital or professional society, and provided a written definition of LCPD. To determine the availability of translation options, hospital and society websites with LCPD materials available in English were searched for options for translation to any other language. All international society websites were searched for LCPD materials in their native language. We searched all hospital- and U.S.-based professional society websites in September 2023. International professional society websites were searched in December 2023.

Readability measurements

All available English-language patient education materials for LCPD were graded using three separate readability measures. Written information from the hospital and professional society websites was copied into BBEdit (Bare Bone Software, Bedford, MA) to remove all formatting and images. The bare text file was then entered into Readability Studios (Oleander Software Ltd.) to be graded by three separate measures of readability: Flesch Reading Ease, Fry Graph, and Simple Measure of Gobbledygook (SMOG). Flesch Reading Ease grades reading ease on a scale of 0 to 100, with 0 being unreadable and all scores greater than 80 being generally considered easy to read. The Flesch Reading Ease formula is based on syllables per word and the words per sentence [23]. The Fry Graph formula is based on the average number of sentences and syllables per 100 words. The intersection between the average number of sentences and syllables on the graph calculates the reading-grade level. Of note, one hospital was excluded from the Fry Graph analysis for an incalculably high syllable count [24]. The SMOG reading grade level is calculated based on the number of words with three or more syllables [25].

Statistical analysis

Descriptive statistics were used to summarize the data. Regression analysis was used to determine the relationship between hospital rank and availability of LCPD patient education materials and hospital rank and readability of English patient education materials. Chi-squared analysis was used to determine the relationship between states with greater than 20% primary Spanish speakers and Spanish resource availability. Rates of Spanish language speakers were determined by US census data and specifically questions related to language spoken at home [1]. Regression analysis was used to determine the relationship between the percentage of primary Spanish speakers in a state and the availability of Spanish resources. States with only one ranked hospital were excluded from this analysis. All statistical analyses were conducted using Microsoft Excel 2023 (Microsoft Corp., Redmond, WA).

Results

Availability

Of the top hospitals for pediatric orthopaedics ranked by the U.S. World and News Report in 2023, 74% (37/50) provided English patient education materials for LCPD (Table 1). Among the hospitals with English resources, 35% (13/37) provided patient education materials in other languages. All hospitals with an option for translation to other languages included Spanish, while four hospitals had the additional option for French, Arabic, and Chinese languages. Some websites provided a translation function which provided options for translation for up to 27 languages. Of the three U.S.-based major professional societies, two (66%) provided English-language resources, while only one (33%) had the option for translation to Spanish. Of the international societies included, only 16% (5/31) had patient education materials for LCPD in their respective language.

Table 1.

Language availability of Legg-Calve-Perthes disease resources.

	English	Spanish	Other∗
Top 50 hospitals	37 (74%)	13 (26%)	4 (8%)
U.S. professional societies	2 (66%)	1 (33%)	0 (0%)
International professional societies	0 (0%)	1 (3%)	4 (13%)

^∗French, Arabic, Chinese, German, Italian, Portuguese.

Readability

Readability was calculated for all English-language materials using three different formulas, Flesch Reading Ease, Fry Graph, and SMOG. Patient education materials that were shared across multiple institutions were only included once in the analysis, and hospital and professional society data were combined for analysis. The average Flesch Reading ease score was 60.5, with only one hospital meeting the “easy-to-read” threshold of 80. The average Fry Graph grade level was 9.56, and two hospitals met the AMA's grade-level recommendation of sixth grade. SMOG average grade level was 11.4, with no hospitals or societies at or below the eigth-grade reading level. On average, all English-language resources were above the AMA- and NIH-recommended guidelines for written patient education materials using all three measures of readability (Table 2).

Table 2.

Readability of Legg-Calves-Perthes disease patient education materials.

	Flesch-Kincaid Reading Ease	Fry Graph grade level	SMOG grade level
Average	60.5 (47-80)	9.56 (6-13)	11.39 (8.8-13.8)
Median	59	10	11.3
Standard deviation	8.81	1.98	1.45

SMOG, Simple Measure of Gobbledygook.

Correlation analysis

Regression analysis determined that there was no significant relationship between hospital rank and the availability of LCPD patient education materials (R² = 0.037, P > .05) or readability (Flesch Reading Ease: R² = 0.039, P > .05; Fry Graph: R² = 0.025, P > .05; SMOG: R² = 0.028, P > .05).

The 37 hospitals that provided English-language resources for LCPD were stratified by state population of greater or less than 20% primary Spanish speakers. There were 14 hospitals in states with greater than 20% primary Spanish speakers, and 43% (6/14) provided LCPD patient education materials translated to Spanish. At the 23 hospitals in states with less than 20% primary Spanish speakers, only 30% (7/23) provided translation to Spanish (Table 3). Chi-squared analysis determined no significant relationship exists between states with greater than 20% primary Spanish speakers and increased availability of Spanish-language resources (P > .05). Regression analysis also determined no significant relationship between the percentage of primary Spanish speakers in each state and the availability of Spanish translation (R² = 0.017, P > .05).

Table 3.

Availability of Spanish-language resources in states with greater and less than 20% primary Spanish speakers.

Hospitals	Yes	No	Total
>20%	43% (6/14)	57% (8/14)	14
<20%	30% (7/23)	70% (16/23)	23
Total	35% (13/37)	61% (24/37)	37

Discussion

Educating patients and families about their condition is essential in making medical decisions and optimizing outcomes. Thus, education relating to complex conditions such as LCPD must be readily available and readable to patients and families. Previous studies focusing on other orthopaedic information, such as Adolescent idiopathic scoliosis (AIS) and developmental dysplasia of the hip (DDH), have demonstrated varying availability of articles written in English and an even scarcer availability in Spanish [19,20], yet less is known in other non-English languages outside of Spanish. Our study shows that while most hospitals offer written, online materials in English, only a third offer resources in different languages. Additionally, all educational resources on LCPD are likely challenging reads and are written at levels above the suggested grade level.

More specifically, approximately 70% of hospitals offered written, online resources in English. This rate is lower than the availability of resources on other pediatric orthopaedic conditions such as AIS, DDH, and clubfoot [19,20,26]. This may be attributed to the lower incidence of LCPD as it is a rare disease with an unclear etiology [22]. However, it is a complex condition and difficult for patients, families, and physicians to understand. Similarly, few hospitals offered resources in Spanish or other languages, and there was no correlation between the availability of Spanish-language resources and Spanish-speaking populations in a given state. These results highlight the potential disconnect between state population’s linguistic needs and disparities in access to information. These findings are similar to previous studies on AIS and DDH [19,20]. The lack of multilingual resources across various orthopaedic conditions demonstrates the health literacy inequality faced by non–English speaking families when seeking medical educational resources both at the local or state levels. For organizations wishing to improve their health literacy, it can begin with conducting health literacy assessments of materials used or identifying where materials are needed using generalized or specific toolkits from the Agency of Healthcare research and Quality (AHRQ) [27]. Organizations can then work with verified translators to create materials in non-English languages [24]. Those with existing resources can optimize the digital health resources they have by providing mobile-friendly options; additionally, the Center for Disease Control and Prevention contains numerous resources aimed at improving health literacy through communication guidelines, material assessment tools, and Q&A style tips [28,29].

Regarding the major US professional societies, two of the three societies offered educational resources, and only one provided resources in Spanish. Of the international societies, only five of the 31 provided LCPD information in their respective languages. This could be explained by the incidence rate of LCPD predominately affecting individuals of Caucasian descent as four out of five international societies were from European countries [22]. Nonetheless, the few societies providing resources emphasize the need for domestic and international societies to develop information for this condition. Sharing resources is a way to bridge the knowledge gap, and professional societies can use their collective information to provide resources for more patients.

The readability of English-language resources on LCPD was above the suggested reading level for almost all hospitals and professional societies. One hospital met the criteria for “easy to read” per the Flesch reading ease score, and only two hospitals met the AMA's grade-level recommendation for sixth grade. These findings are consistent with previous studies on pediatric orthopaedic conditions [[19], [20], [21],26]. Patient and family members' educational levels differ, and in the setting of limited availability of resources, it is essential to have readable resources appropriate for all ages. In order to improve readability, educational resources should focus on the number of sentences, syllables, and words [30]. Therefore, possible manners in which to improve readability could include incorporating patients in resource creation and updating of existing resources, opting for nonwritten forms of information in the form of videos/social media, or use of new tools like artificial intelligence (AI)-generating material such as ChatGPT to help simplify the material [31,32].

This study has several limitations. First, we could not assess the readability of resources in languages other than English due to limited, validated metrics. Second, websites for international societies were often difficult to navigate due to language barriers. However, an extensive search was performed on each website to ensure that any pertinent resources were identified and included in the study. Another notable limitation is that the quality of the resources was not evaluated based on individual components such as definition, symptoms, diagnosis, and treatment or on the accuracy of the information. The development of high-quality, readable, translatable, and shareable resources would be ideal for patients and institutions. Lastly, this project is a cross-sectional analysis, reflecting the LCPD landscape at this point in time. The status of patient education will continue to evolve, especially with the evaluation of social media and AI chatbots. The use of AI has been across orthopaedics, showing promise in improving the readability of patient educational materials and generating easier-to-read answers to common “frequently asked questions” [33,34].

In conclusion, English-language educational resources on LCPD are available from several institutions and professional societies; however, very few non-English resources are available to patients and families. Additionally, most English-language resources are not readable by the average reader and are above the recommended levels. Given the growing influx of information available to patients, it is imperative to ensure that information is easy to understand to help formulate informed healthcare decisions. Institutions, healthcare systems, and professional societies have an opportunity to provide high-quality resources for patients collaboratively. Additionally, technology can be leveraged to provide translations into other languages to improve equity and potentially improve understanding and outcomes for all patients with LCPD.

Additional links

• •POSNA:Orthokids Perthes Disease,Orthokids Perthes Spanish
• • JPO: Don't Throw Away the Handout: Efficacy of Patient Education in Pediatric Orthopaedic Trauma
• • Healthcare: The Impact of Limited English Proficiency on Healthcare Access and Outcomes in the U.S.: A Scoping Review

Author contributions

Rafael Verduzco Guillen: Writing – review & editing, Writing – original draft, Resources, Investigation, Formal analysis, Data curation, Conceptualization. Emma Danielle Grellinger: Writing – review & editing, Writing – original draft, Visualization, Methodology, Investigation, Formal analysis, Data curation. Ishaan Swarup: Writing – review & editing, Writing – original draft, Validation, Supervision, Project administration, Methodology, Investigation, Conceptualization.

Funding

No relevant funding sources to disclose.

Consent for publication

The author(s) declare that no patient consent was necessary as no images or identifying information are included in the article.

Declarations of competing interests

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.