Online patient resources for deceased donor and live donor kidney recipients: a comparative analysis of readability

Online patient resources for deceased donor and live donor kidney recipients: a comparative... Background: The Internet has extensive resources for kidney transplantation recipients. Half of the population reads below a seventh-grade level. Previous studies showed that living donor recipients have higher health literacy rates compared with deceased donor recipients. There has been no study comparing the readability of online living donor recipient materials versus deceased donor recipient materials. Methods: Analysis was performed using eight readability scales on the top 10 websites for live donor and deceased donor kidney transplantation. Analysis was performed through the Readability Studio Software. USA reading grade level was determined for each site. Results: Overall, the mean reading level for the living donor materials was 12.54 (range 9.2–17) and for the deceased donor materials, 12.87 (range 8.7–17, P¼ 0.73), corresponding to a university level. None of the sites met the seventh-grade level recommended by the National Institute of Health. Conclusions: The readability of online materials remains too high for the corresponding health literacy rates among patients requiring kidney transplantation. Specifically, the lower health literacy rates among deceased donor recipients does not mirror the readability of online materials provided at a university level. This may affect decision-making, contributing to a smaller proportion of patients of a lower socioeconomic status and those with poor English language skills pursuing live donor organs. Key words: donor, health literacy, Internet, kidney, readability, transplant Introduction looked online for health information within the past year. Of There are an estimated 286 942 362 people in USA who are regu- these online health seekers, 77% of people started their search lar Internet users, accounting for 88% of the total population [1]. at a search engine such as Google, Bing or Yahoo [2]. With such According to the Pew Research Center, 72% of Internet users a high proportion of patients utilizing online resources to guide Received: July 24, 2017. Editorial decision: October 2, 2017 V C The Author 2017. Published by Oxford University Press on behalf of ERA-EDTA. This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/ licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com Downloaded from https://academic.oup.com/ckj/article-abstract/11/4/559/4657174 by Ed 'DeepDyve' Gillespie user on 07 August 2018 560 | E.P. Zhou et al. health care decision-making, it is important to analyze whether information and location were all disabled prior to each search or not Internet materials are providing comprehensible material in order to eliminate bias in the search results. The top 10 for patients. results from each search were each separately pasted into a Multiple readability formulas were developed in the 1940s as Microsoft Word Document in a plain text format (Microsoft a way to analyze the difficulty of adult reading material. Corp., Redmond, WA, USA) and edited in order to exclude imag- Pioneers within the field such as Rudolph Flesch and Edgar Dale ing, links and diagrams. Exclusion criteria included sponsored devised formulas that helped quantify the reading difficulty of a links, non-English websites, pages with <30 sentences, non- particular document. Further progress was made in the 1970s functional websites, duplicates, scientific journal articles and with Peter Kincaid’s Flesch–Kincaid formula, which allowed the websites containing irrelevant material to the original search. army to assess the difficulty of technical manuals [3]. Readability analysis was performed through the Readability The Institute of Education Sciences measured adult literacy Studio Professional Edition Software (Oleander Software, Ltd, in measuring prose, document and quantitative skills in over Vandalia, OH, USA). The 10 most commonly used readability 19 000 subjects. In this study, only 15% of the sample scored at scales were used in this analysis, with each of them providing a the highest level in all three categories (equivalent to a univer- unique set of variables in approximating USA reading grade sity undergraduate level), with the average reading level meas- level (Table 1). The Coleman–Liau Index utilizes the number of ured as between seventh and eighth grade [4]. As such, the characters and sentences per 100 words in deriving its grade National Institute of Health recommends patient education level formula. The Flesch–Kincad Grade Level utilizes the total materials to be written at approximately a seventh grade level number or words, sentences and syllables within a given text to [5]. determine its readability. The result corresponds to an approxi- Previous studies in the pediatric literature have determined mate US grade level. The Flesch Reading Ease also incorporates that online materials designed for adults in general pediatric the total number or words, sentences and syllables within a patient education were written at inappropriately advanced lev- given text to determine its readability. However, the scale is els, which hindered parental comprehension about their child- scored from 0 to 100 with 0–30 representing the reading level of ren’s conditions. The authors concluded that clinical a college graduate, the highest level of difficulty, and each sub- understanding between the physician and parent could be opti- sequent increasing score representing a lower level of difficulty. mized with online reading material that was better tailored in The FORCAST scale calculates the readability of a document accordance to the particular patient’s education and health lit- from the number of monosyllabic words. The Fry graph utilizes eracy level [6]. three randomly selected 100 word passages and analyzes the Historically, there has been a socioeconomic divide between number of sentences and syllables in determining a document’s living donor recipients and deceased donor recipients. Living readability. The Gunning Fog Index utilizes average sentence donor recipients as a group are more likely to be white, have a length and the proportion of complex words (three or more syl- higher education level and to have private insurance. Patients lables) to regular words in determining readability from a scale with low socioeconomic status or of African American descent of 6–17, with 17 being the highest level of readability. The New are less likely to receive a living donor kidney transplant [7]. Dale–Chall Readability formula utilizes sentence length and Studies have shown that living donor recipients have statisti- number of familiar words in calculating readability. Familiar cally significant higher health literacy rates compared with words were 3000 common words that have been deemed to be deceased donor recipients [8]. Dageforde et al. administered a comprehensible to most fourth-grade students. The New Fog short literacy survey to 105 living donors, 103 living donor recip- Count test calculates readability through sentence length and ients and 152 deceased donor recipients. In all, 52% of living the number of words containing three or more syllables. The donor recipients achieved a score that qualified as having a Raygor Readability Estimate calculates readability through plot- ‘high health literacy’ compared with 40% of deceased donor ting the average number of sentences and letters per 100 words recipients. Of the living donor recipients, 9% received a low along with the number of 6þ characters per 100 words. The health literacy rating as opposed to 14% of the deceased donor intersection of these two variables on a graph determines recipients. The level of educational attainment between living grade-level readability. The SMOG readability formula utilizes donor recipients and deceased donor recipients was similar the number of sentences as well as the number of polysyllables with both groups having a mean of 13 years of education with (words with three or more syllables) to determine the readabil- a standard deviation of 3 years. After controlling for age, race, ity of a certain passage. sex, education and race by education interaction effect, deceased donor recipients were more likely to have low or Results moderate health literacy compared with living donor recipi- ents (P ¼ 0.02) [8]. However, there has been no study to date Overall, the mean reading level for the living donor materials comparing the readability of online living donor recipient was 12.54 (range 9.2–17) (Figure 1). For the deceased donor mate- materials versus the readability of deceased donor recipient rials, the mean reading level was 12.87 (range 8.7–17) (Figure 2). material. A two-sample t-test showed no statistical difference between the readability between the terms (P ¼ 0.73). Of the 20 websites that were analyzed, 14 (70%) were affiliated with academic med- Materials and methods ical centers. All living donor recipient sites results were aca- Using the largest Internet search engine, Google (Google Inc., demic university-based sites. Out of the 10 websites for Mountain View, CA, USA), two separate searches were con- deceased donor recipients, 4 were affiliated with academic ducted. Within the first search, the terms ‘Living Donor Kidney medical centers, 4 were third-party websites and 2 were govern- Transplant’ and ‘Recipient’ were queried into the search engine. ment affiliated websites. One site from the living donor recipi- The terms ‘Deceased Kidney Donor Transplant’ and ‘Recipient’ ent search was excluded, as it was a duplicate site. Five sites were queried into the search engine for the second search. All from the deceased donor recipient search met exclusion criteria websites were accessed on 8 October 2016. Cookies, user as published material in scientific journals. Downloaded from https://academic.oup.com/ckj/article-abstract/11/4/559/4657174 by Ed 'DeepDyve' Gillespie user on 07 August 2018 Deceased and live donor readability analysis | 561 Table 1. Readability formulas Scale Variables Formulas Coleman–Liau Index Average number of letters per 100 words (L) and G¼ [(5.88*C)/W] [(29.5*S)/W]  15.8 average number of sentences per 100 words (S) Flesch–Kincad Grade Level Average number of syllables per word (SY) and aver- G¼ [11.8*(B/W)]þ [0.39*(W/S)]  15.59 age number of words per sentence (W) Flesch Reading Ease Average number of syllables (B), average number of I ¼ ROUND {206.835 [84.6*(B/W)] [1.015*(W/S)]} words per sentence (W), average number of sen- tences (S) FORCAST Number of single-syllable words in a 150-word sam- G¼ 20 (M/10) ple (SS) Fry Graph Average number of sentences and syllables per 100 Extract a 100-word passage from the selection words Count the number of sentences in each passage Count the number of syllables in each passage Find the point on the chart Gunning Fog Test Number of sentences (S), number of words (W), G¼ 0.4*{W/Sþ [(C/W)*100]} number of words with three or more syllables (C) New Dale–Chall Average number of words per sentence (AW) and (0.1579  %U)¼ (0.0496  AW) percent unfamiliar words (%U) New Fog Count Number of complex words (C), number of easy words G¼ {{[Eþ (3*C)]/S}  3}/2 (E), number of sentences (S) Raygor Readability Estimate Average number of sentences and long (six or more Extract a 100-word passage from the selection characters) words per 100 words Count the number of sentences Count the number of words that are six or more letters Find the point on the chart SMOG Average number of words with three or more sylla- G¼ 1.0430*C þ 3.1291 bles (C) and average number of sentences (S) Fig. 1. Readability levels measured by eight scales for living donor materials. For living donors, the overall Coleman–Liau readability score For deceased donors, the overall Coleman–Liau readability was 12.7 (range 10.8–16), Flesch–Kincaid was 11.5 (range 9.2– score was 12.5 (range 10.4–14.6), Flesch–Kincaid was 12.6 (range 14.6), Flesch Reading Ease was 44 (range 24–60) (Supplementary 8.7–17.6), Flesch Reading Ease was 45 (range 31–58) data, Figure S3A), FORCAST was 11.9 (range 10.9–12.8), Fry was (Supplementary data, Figure S3B), FORCAST was 11.6 (range 15 (range 11–17) (Supplementary data, Figure S4A), Gunning Fog 10.9–12.3), Fry was 14 (range 10–17) (Supplementary data, Figure was 11.8 (range 9.4–14.1), New Dale–Chall was 11.6 (range 9.5– S4B), Gunning Fog was 12.4 (range 9.9–15.2), New Dale–Chall 14), Raygor Estimate was 14 (range 10–17) (Supplementary data, was 12.3 (range 9.5–14), Raygor Estimate was 14 (range 10–17) Figure S5A) and SMOG was 12.7 (range 10.8–15.2). (Supplementary data, Figure S5B) and SMOG was 13.3 (range Downloaded from https://academic.oup.com/ckj/article-abstract/11/4/559/4657174 by Ed 'DeepDyve' Gillespie user on 07 August 2018 562 | E.P. Zhou et al. Fig. 2. Readability levels measured by eight scales for deceased donor materials. 10.8–16.3). Using the Flesch–Kincaid scale, the mean readability academic center sites may have a higher readability than third- scores of university-based, government and third-party sites party or government sites. Future studies should be considered were compared. The mean readability score of university-based in evaluating the readability between academic and nonaca- sites was 12.45, compared with 10.45 with government sites and demic sites. 11.35 with third party sites. These means were not statistically As discussed previously, deceased donor recipients are more significant different as determined by one-way analysis of var- likely to be of a lower socioeconomic status, of a minority group iance (ANOVA) [F(2,7) ¼ 1.76, P ¼ 0.24)]. and are more likely to have an overall lower health literacy rate compared with patients who receive living donor recipients [7]. Given the high readability level of the patient education mate- Discussion rial, those with lower health literacy may not receive adequate education regarding the benefits and risks associated with liv- The findings of our study revealed an overall readability of 12.54 for living donor recipient materials found online. The overall ing donor kidney transplants. The mismatch between patient literacy and the material readability may lead patients to search readability for deceased donor recipient online materials was 12.87, with no statistical difference between the two cohorts for other mediums such as forums or popular non-scientific pages that are more appropriate in readability, but less medi- (P ¼ 0.73). Both living donor recipient and deceased donor recip- ient materials were written at an average difficulty that corre- cally accurate. This discrepancy may have an impact on a patient’s decision in ultimately not pursuing live donor kidney sponded to a university readability level. Out of the 20 articles analyzed for readability, none of the articles met the seventh- transplantation. There were several limitations to our study. While we uti- grade level that the National Institute of Health recommends for patient education material. The majority of these articles lized 10 different scales, the readability scales commonly used word, syllable and sentence length in order to calculate read- were from academic medical centers, which may have further contributed to the high readability of the materials. When com- ability. With the exception of the New Dale–Chall scale, which incorporated a list of 3000 words deemed to be familiar to most paring university-based, government and third-party sites in the deceased donor recipient group, there was not a statistically fourth graders, the other scales failed to incorporate word famil- iarity along with word length in determining readability. Thus significant difference in the readability levels between categories. familiar words such as ‘transplantation’ that had long word lengths but wide familiarity may have artificially increased the Overall, the readability of online materials for both living donor recipients and deceased donor recipients remain far too readability of a particular document. In addition, website format was not taken into consideration in our study. For example, a high for the corresponding health literacy rates among patients with chronic kidney disease requiring transplantation. There website that exclusively used paragraph form in its content description may have been less readable than a website that was a discrepancy noted in the distribution of site types between living and deceased donor material queries. All 10 incorporated a frequently asked questions format supple- mented with graphs and figures. Future studies or alternative search results from the living donor search query were affiliated with academic medical centers. Out of the 10 websites for readability scales catered specifically to scientific writing should be explored. deceased donor recipients, only 4 were affiliated with academic medical centers. Despite the higher concentration of academic- According to the National Kidney Foundation in 2014, 17 107 kidney transplants took place in USA. Of these, 11 570 were affiliated sites among living donor sites, there was no signifi- cant difference in readability between the two groups (12.54 deceased donor transplants, while 5537 were living donor trans- plants [9]. It has been well-established that living-donor allog- among living donor material versus 12.87 among deceased donor material). This may be contrary to the popular belief that rafts are superior to deceased-donor allografts. For living-donor Downloaded from https://academic.oup.com/ckj/article-abstract/11/4/559/4657174 by Ed 'DeepDyve' Gillespie user on 07 August 2018 Deceased and live donor readability analysis | 563 recipients, the 5-year post-transplantation rate has been quoted Supplementary data at 91%. For deceased, non-extended-criteria donor recipients, Supplementary data are available online at http://ckj.oxford the 5-year survival rate is 84%. For patients that receive a journals.org. deceased, extended-criteria donor transplantation, the 5-year survival rate is 70% [10, 11]. As of January 2016, 100 791 people in USA were awaiting a kidney transplant. The median wait Conflict of interest statement time for a transplant is 3.6 years, but is highly dependent on region and blood type. In 2014, 4761 died while on the kidney None declared. transplant list, while another 3668 people became too sick to receive a transplant [9]. References Dageforde et al. proposed a multifactorial model of living donor recruitment. Key components such as cognitive function, 1. Internet Users by Country (2016). http://www.internetlive health literacy, age, race and education played a role in success- stats.com/internet-users-by-country/ (15 October 2016, date fully improving one’s chances of obtaining a living donor. One of last accessed) the crucial aspects from the recipient’s perspective is the ability 2. Health Fact Sheet. http://www.pewinternet.org/fact-sheets/ to communicate effectively to a potential donor the risks, bene- health-fact-sheet/ (15 October 2016, date last accessed) fits and basic principles of live donor transplantation [8]. The cur- 3. McClure, G. Readability formulas: useful or useless. (an rent readability of available online material for deceased donor interview with J. Peter Kincaid). IEEE Trans Prof Commun 1987; recipients may not match the overall health literacy rate of this 30: 12–15 group. Thus, the unmatched readability may hinder full patient 4. Kirsch IS, Jungeblut A, Jenkins Let al. Adult Literacy in America. comprehension of the benefits of a potential living donor recipi- Washington, DC: National Center for Education Statistics, ent within the group of patients who are on the waiting list for a 2002 deceased donor. If patients are provided appropriate reading 5. How to Write Easy to Read Health Materials. http://www.nlm.nih. materials that are simple, concise and match corresponding gov/medlineplus/etr.html (15 October 2016, date last accessed) health literacy rates, perhaps there would be an increase in 6. D’Alessandro DM, Kingsley P, Johnson-West J. The readabil- patients who actively seek a live donor. The transplant team is a ity of pediatric patient education materials on the world nuclear entity composed of a multitude of professionals ranging wide web. Arch Pediatr Adolesc Med 2001; 155: 807–812 across different fields such as physicians, social workers and 7. Gore JL, Danovitch GM, Litwin M. Disparities in the utiliza- transplant coordinators. Through a united effort, different indi- tion of live donor renal transplantation. Adv Chron Kidney Dis viduals on the transplant team can individualize patient educa- 2010; 20: 311 tion and understanding of the transplant process to an 8. Dageforde LA, Petersen AW, Feurer ID et al. Health literacy of appropriate level that matches the patient’s health literacy. This living kidney donors and kidney transplant recipients. individualized approach will help bridge the gap that exists in the Transplantation 2014; 98: 88–93 readability of the online materials available for potential kidney 9. Organ Procurement and Transplantation Network. https://optn. recipients. With the development of multiple readability scales, transplant.hrsa.gov/ (15 October 2016, date last accessed) transplant centers should pre-screen the readability of online 10. McCullough KP, Keith DS, Meyer K et al. Kidney and pancreas patient information prior to publication in order to tailor the transplantation in the United States, 1998-2007: access for material to an appropriate level. Modifications of current online patients with diabetes and end-stage renal disease. Am J literature and altering readability levels could have profound Transplant 2009; 9: 894–906 effects on overall patient comprehension of differences in out- 11. Port FK, Dykstra DM, Merion RM et al. Trends and results for comes between deceased and live donor organs, thus increasing organ donation and transplantation in the United States the current living to deceased donor ratio. 2004. Am J Transplant 2005; 5: 843–849 Downloaded from https://academic.oup.com/ckj/article-abstract/11/4/559/4657174 by Ed 'DeepDyve' Gillespie user on 07 August 2018 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Clinical Kidney Journal Oxford University Press

Online patient resources for deceased donor and live donor kidney recipients: a comparative analysis of readability

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European Renal Association - European Dialysis and Transplant Association
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© The Author 2017. Published by Oxford University Press on behalf of ERA-EDTA.
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Abstract

Background: The Internet has extensive resources for kidney transplantation recipients. Half of the population reads below a seventh-grade level. Previous studies showed that living donor recipients have higher health literacy rates compared with deceased donor recipients. There has been no study comparing the readability of online living donor recipient materials versus deceased donor recipient materials. Methods: Analysis was performed using eight readability scales on the top 10 websites for live donor and deceased donor kidney transplantation. Analysis was performed through the Readability Studio Software. USA reading grade level was determined for each site. Results: Overall, the mean reading level for the living donor materials was 12.54 (range 9.2–17) and for the deceased donor materials, 12.87 (range 8.7–17, P¼ 0.73), corresponding to a university level. None of the sites met the seventh-grade level recommended by the National Institute of Health. Conclusions: The readability of online materials remains too high for the corresponding health literacy rates among patients requiring kidney transplantation. Specifically, the lower health literacy rates among deceased donor recipients does not mirror the readability of online materials provided at a university level. This may affect decision-making, contributing to a smaller proportion of patients of a lower socioeconomic status and those with poor English language skills pursuing live donor organs. Key words: donor, health literacy, Internet, kidney, readability, transplant Introduction looked online for health information within the past year. Of There are an estimated 286 942 362 people in USA who are regu- these online health seekers, 77% of people started their search lar Internet users, accounting for 88% of the total population [1]. at a search engine such as Google, Bing or Yahoo [2]. With such According to the Pew Research Center, 72% of Internet users a high proportion of patients utilizing online resources to guide Received: July 24, 2017. Editorial decision: October 2, 2017 V C The Author 2017. Published by Oxford University Press on behalf of ERA-EDTA. This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/ licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com Downloaded from https://academic.oup.com/ckj/article-abstract/11/4/559/4657174 by Ed 'DeepDyve' Gillespie user on 07 August 2018 560 | E.P. Zhou et al. health care decision-making, it is important to analyze whether information and location were all disabled prior to each search or not Internet materials are providing comprehensible material in order to eliminate bias in the search results. The top 10 for patients. results from each search were each separately pasted into a Multiple readability formulas were developed in the 1940s as Microsoft Word Document in a plain text format (Microsoft a way to analyze the difficulty of adult reading material. Corp., Redmond, WA, USA) and edited in order to exclude imag- Pioneers within the field such as Rudolph Flesch and Edgar Dale ing, links and diagrams. Exclusion criteria included sponsored devised formulas that helped quantify the reading difficulty of a links, non-English websites, pages with <30 sentences, non- particular document. Further progress was made in the 1970s functional websites, duplicates, scientific journal articles and with Peter Kincaid’s Flesch–Kincaid formula, which allowed the websites containing irrelevant material to the original search. army to assess the difficulty of technical manuals [3]. Readability analysis was performed through the Readability The Institute of Education Sciences measured adult literacy Studio Professional Edition Software (Oleander Software, Ltd, in measuring prose, document and quantitative skills in over Vandalia, OH, USA). The 10 most commonly used readability 19 000 subjects. In this study, only 15% of the sample scored at scales were used in this analysis, with each of them providing a the highest level in all three categories (equivalent to a univer- unique set of variables in approximating USA reading grade sity undergraduate level), with the average reading level meas- level (Table 1). The Coleman–Liau Index utilizes the number of ured as between seventh and eighth grade [4]. As such, the characters and sentences per 100 words in deriving its grade National Institute of Health recommends patient education level formula. The Flesch–Kincad Grade Level utilizes the total materials to be written at approximately a seventh grade level number or words, sentences and syllables within a given text to [5]. determine its readability. The result corresponds to an approxi- Previous studies in the pediatric literature have determined mate US grade level. The Flesch Reading Ease also incorporates that online materials designed for adults in general pediatric the total number or words, sentences and syllables within a patient education were written at inappropriately advanced lev- given text to determine its readability. However, the scale is els, which hindered parental comprehension about their child- scored from 0 to 100 with 0–30 representing the reading level of ren’s conditions. The authors concluded that clinical a college graduate, the highest level of difficulty, and each sub- understanding between the physician and parent could be opti- sequent increasing score representing a lower level of difficulty. mized with online reading material that was better tailored in The FORCAST scale calculates the readability of a document accordance to the particular patient’s education and health lit- from the number of monosyllabic words. The Fry graph utilizes eracy level [6]. three randomly selected 100 word passages and analyzes the Historically, there has been a socioeconomic divide between number of sentences and syllables in determining a document’s living donor recipients and deceased donor recipients. Living readability. The Gunning Fog Index utilizes average sentence donor recipients as a group are more likely to be white, have a length and the proportion of complex words (three or more syl- higher education level and to have private insurance. Patients lables) to regular words in determining readability from a scale with low socioeconomic status or of African American descent of 6–17, with 17 being the highest level of readability. The New are less likely to receive a living donor kidney transplant [7]. Dale–Chall Readability formula utilizes sentence length and Studies have shown that living donor recipients have statisti- number of familiar words in calculating readability. Familiar cally significant higher health literacy rates compared with words were 3000 common words that have been deemed to be deceased donor recipients [8]. Dageforde et al. administered a comprehensible to most fourth-grade students. The New Fog short literacy survey to 105 living donors, 103 living donor recip- Count test calculates readability through sentence length and ients and 152 deceased donor recipients. In all, 52% of living the number of words containing three or more syllables. The donor recipients achieved a score that qualified as having a Raygor Readability Estimate calculates readability through plot- ‘high health literacy’ compared with 40% of deceased donor ting the average number of sentences and letters per 100 words recipients. Of the living donor recipients, 9% received a low along with the number of 6þ characters per 100 words. The health literacy rating as opposed to 14% of the deceased donor intersection of these two variables on a graph determines recipients. The level of educational attainment between living grade-level readability. The SMOG readability formula utilizes donor recipients and deceased donor recipients was similar the number of sentences as well as the number of polysyllables with both groups having a mean of 13 years of education with (words with three or more syllables) to determine the readabil- a standard deviation of 3 years. After controlling for age, race, ity of a certain passage. sex, education and race by education interaction effect, deceased donor recipients were more likely to have low or Results moderate health literacy compared with living donor recipi- ents (P ¼ 0.02) [8]. However, there has been no study to date Overall, the mean reading level for the living donor materials comparing the readability of online living donor recipient was 12.54 (range 9.2–17) (Figure 1). For the deceased donor mate- materials versus the readability of deceased donor recipient rials, the mean reading level was 12.87 (range 8.7–17) (Figure 2). material. A two-sample t-test showed no statistical difference between the readability between the terms (P ¼ 0.73). Of the 20 websites that were analyzed, 14 (70%) were affiliated with academic med- Materials and methods ical centers. All living donor recipient sites results were aca- Using the largest Internet search engine, Google (Google Inc., demic university-based sites. Out of the 10 websites for Mountain View, CA, USA), two separate searches were con- deceased donor recipients, 4 were affiliated with academic ducted. Within the first search, the terms ‘Living Donor Kidney medical centers, 4 were third-party websites and 2 were govern- Transplant’ and ‘Recipient’ were queried into the search engine. ment affiliated websites. One site from the living donor recipi- The terms ‘Deceased Kidney Donor Transplant’ and ‘Recipient’ ent search was excluded, as it was a duplicate site. Five sites were queried into the search engine for the second search. All from the deceased donor recipient search met exclusion criteria websites were accessed on 8 October 2016. Cookies, user as published material in scientific journals. Downloaded from https://academic.oup.com/ckj/article-abstract/11/4/559/4657174 by Ed 'DeepDyve' Gillespie user on 07 August 2018 Deceased and live donor readability analysis | 561 Table 1. Readability formulas Scale Variables Formulas Coleman–Liau Index Average number of letters per 100 words (L) and G¼ [(5.88*C)/W] [(29.5*S)/W]  15.8 average number of sentences per 100 words (S) Flesch–Kincad Grade Level Average number of syllables per word (SY) and aver- G¼ [11.8*(B/W)]þ [0.39*(W/S)]  15.59 age number of words per sentence (W) Flesch Reading Ease Average number of syllables (B), average number of I ¼ ROUND {206.835 [84.6*(B/W)] [1.015*(W/S)]} words per sentence (W), average number of sen- tences (S) FORCAST Number of single-syllable words in a 150-word sam- G¼ 20 (M/10) ple (SS) Fry Graph Average number of sentences and syllables per 100 Extract a 100-word passage from the selection words Count the number of sentences in each passage Count the number of syllables in each passage Find the point on the chart Gunning Fog Test Number of sentences (S), number of words (W), G¼ 0.4*{W/Sþ [(C/W)*100]} number of words with three or more syllables (C) New Dale–Chall Average number of words per sentence (AW) and (0.1579  %U)¼ (0.0496  AW) percent unfamiliar words (%U) New Fog Count Number of complex words (C), number of easy words G¼ {{[Eþ (3*C)]/S}  3}/2 (E), number of sentences (S) Raygor Readability Estimate Average number of sentences and long (six or more Extract a 100-word passage from the selection characters) words per 100 words Count the number of sentences Count the number of words that are six or more letters Find the point on the chart SMOG Average number of words with three or more sylla- G¼ 1.0430*C þ 3.1291 bles (C) and average number of sentences (S) Fig. 1. Readability levels measured by eight scales for living donor materials. For living donors, the overall Coleman–Liau readability score For deceased donors, the overall Coleman–Liau readability was 12.7 (range 10.8–16), Flesch–Kincaid was 11.5 (range 9.2– score was 12.5 (range 10.4–14.6), Flesch–Kincaid was 12.6 (range 14.6), Flesch Reading Ease was 44 (range 24–60) (Supplementary 8.7–17.6), Flesch Reading Ease was 45 (range 31–58) data, Figure S3A), FORCAST was 11.9 (range 10.9–12.8), Fry was (Supplementary data, Figure S3B), FORCAST was 11.6 (range 15 (range 11–17) (Supplementary data, Figure S4A), Gunning Fog 10.9–12.3), Fry was 14 (range 10–17) (Supplementary data, Figure was 11.8 (range 9.4–14.1), New Dale–Chall was 11.6 (range 9.5– S4B), Gunning Fog was 12.4 (range 9.9–15.2), New Dale–Chall 14), Raygor Estimate was 14 (range 10–17) (Supplementary data, was 12.3 (range 9.5–14), Raygor Estimate was 14 (range 10–17) Figure S5A) and SMOG was 12.7 (range 10.8–15.2). (Supplementary data, Figure S5B) and SMOG was 13.3 (range Downloaded from https://academic.oup.com/ckj/article-abstract/11/4/559/4657174 by Ed 'DeepDyve' Gillespie user on 07 August 2018 562 | E.P. Zhou et al. Fig. 2. Readability levels measured by eight scales for deceased donor materials. 10.8–16.3). Using the Flesch–Kincaid scale, the mean readability academic center sites may have a higher readability than third- scores of university-based, government and third-party sites party or government sites. Future studies should be considered were compared. The mean readability score of university-based in evaluating the readability between academic and nonaca- sites was 12.45, compared with 10.45 with government sites and demic sites. 11.35 with third party sites. These means were not statistically As discussed previously, deceased donor recipients are more significant different as determined by one-way analysis of var- likely to be of a lower socioeconomic status, of a minority group iance (ANOVA) [F(2,7) ¼ 1.76, P ¼ 0.24)]. and are more likely to have an overall lower health literacy rate compared with patients who receive living donor recipients [7]. Given the high readability level of the patient education mate- Discussion rial, those with lower health literacy may not receive adequate education regarding the benefits and risks associated with liv- The findings of our study revealed an overall readability of 12.54 for living donor recipient materials found online. The overall ing donor kidney transplants. The mismatch between patient literacy and the material readability may lead patients to search readability for deceased donor recipient online materials was 12.87, with no statistical difference between the two cohorts for other mediums such as forums or popular non-scientific pages that are more appropriate in readability, but less medi- (P ¼ 0.73). Both living donor recipient and deceased donor recip- ient materials were written at an average difficulty that corre- cally accurate. This discrepancy may have an impact on a patient’s decision in ultimately not pursuing live donor kidney sponded to a university readability level. Out of the 20 articles analyzed for readability, none of the articles met the seventh- transplantation. There were several limitations to our study. While we uti- grade level that the National Institute of Health recommends for patient education material. The majority of these articles lized 10 different scales, the readability scales commonly used word, syllable and sentence length in order to calculate read- were from academic medical centers, which may have further contributed to the high readability of the materials. When com- ability. With the exception of the New Dale–Chall scale, which incorporated a list of 3000 words deemed to be familiar to most paring university-based, government and third-party sites in the deceased donor recipient group, there was not a statistically fourth graders, the other scales failed to incorporate word famil- iarity along with word length in determining readability. Thus significant difference in the readability levels between categories. familiar words such as ‘transplantation’ that had long word lengths but wide familiarity may have artificially increased the Overall, the readability of online materials for both living donor recipients and deceased donor recipients remain far too readability of a particular document. In addition, website format was not taken into consideration in our study. For example, a high for the corresponding health literacy rates among patients with chronic kidney disease requiring transplantation. There website that exclusively used paragraph form in its content description may have been less readable than a website that was a discrepancy noted in the distribution of site types between living and deceased donor material queries. All 10 incorporated a frequently asked questions format supple- mented with graphs and figures. Future studies or alternative search results from the living donor search query were affiliated with academic medical centers. Out of the 10 websites for readability scales catered specifically to scientific writing should be explored. deceased donor recipients, only 4 were affiliated with academic medical centers. Despite the higher concentration of academic- According to the National Kidney Foundation in 2014, 17 107 kidney transplants took place in USA. Of these, 11 570 were affiliated sites among living donor sites, there was no signifi- cant difference in readability between the two groups (12.54 deceased donor transplants, while 5537 were living donor trans- plants [9]. It has been well-established that living-donor allog- among living donor material versus 12.87 among deceased donor material). This may be contrary to the popular belief that rafts are superior to deceased-donor allografts. For living-donor Downloaded from https://academic.oup.com/ckj/article-abstract/11/4/559/4657174 by Ed 'DeepDyve' Gillespie user on 07 August 2018 Deceased and live donor readability analysis | 563 recipients, the 5-year post-transplantation rate has been quoted Supplementary data at 91%. For deceased, non-extended-criteria donor recipients, Supplementary data are available online at http://ckj.oxford the 5-year survival rate is 84%. For patients that receive a journals.org. deceased, extended-criteria donor transplantation, the 5-year survival rate is 70% [10, 11]. As of January 2016, 100 791 people in USA were awaiting a kidney transplant. The median wait Conflict of interest statement time for a transplant is 3.6 years, but is highly dependent on region and blood type. In 2014, 4761 died while on the kidney None declared. transplant list, while another 3668 people became too sick to receive a transplant [9]. References Dageforde et al. proposed a multifactorial model of living donor recruitment. Key components such as cognitive function, 1. Internet Users by Country (2016). http://www.internetlive health literacy, age, race and education played a role in success- stats.com/internet-users-by-country/ (15 October 2016, date fully improving one’s chances of obtaining a living donor. One of last accessed) the crucial aspects from the recipient’s perspective is the ability 2. Health Fact Sheet. http://www.pewinternet.org/fact-sheets/ to communicate effectively to a potential donor the risks, bene- health-fact-sheet/ (15 October 2016, date last accessed) fits and basic principles of live donor transplantation [8]. The cur- 3. McClure, G. Readability formulas: useful or useless. (an rent readability of available online material for deceased donor interview with J. Peter Kincaid). IEEE Trans Prof Commun 1987; recipients may not match the overall health literacy rate of this 30: 12–15 group. Thus, the unmatched readability may hinder full patient 4. Kirsch IS, Jungeblut A, Jenkins Let al. Adult Literacy in America. comprehension of the benefits of a potential living donor recipi- Washington, DC: National Center for Education Statistics, ent within the group of patients who are on the waiting list for a 2002 deceased donor. If patients are provided appropriate reading 5. How to Write Easy to Read Health Materials. http://www.nlm.nih. materials that are simple, concise and match corresponding gov/medlineplus/etr.html (15 October 2016, date last accessed) health literacy rates, perhaps there would be an increase in 6. D’Alessandro DM, Kingsley P, Johnson-West J. The readabil- patients who actively seek a live donor. The transplant team is a ity of pediatric patient education materials on the world nuclear entity composed of a multitude of professionals ranging wide web. Arch Pediatr Adolesc Med 2001; 155: 807–812 across different fields such as physicians, social workers and 7. Gore JL, Danovitch GM, Litwin M. Disparities in the utiliza- transplant coordinators. Through a united effort, different indi- tion of live donor renal transplantation. Adv Chron Kidney Dis viduals on the transplant team can individualize patient educa- 2010; 20: 311 tion and understanding of the transplant process to an 8. Dageforde LA, Petersen AW, Feurer ID et al. Health literacy of appropriate level that matches the patient’s health literacy. This living kidney donors and kidney transplant recipients. individualized approach will help bridge the gap that exists in the Transplantation 2014; 98: 88–93 readability of the online materials available for potential kidney 9. Organ Procurement and Transplantation Network. https://optn. recipients. With the development of multiple readability scales, transplant.hrsa.gov/ (15 October 2016, date last accessed) transplant centers should pre-screen the readability of online 10. McCullough KP, Keith DS, Meyer K et al. Kidney and pancreas patient information prior to publication in order to tailor the transplantation in the United States, 1998-2007: access for material to an appropriate level. Modifications of current online patients with diabetes and end-stage renal disease. Am J literature and altering readability levels could have profound Transplant 2009; 9: 894–906 effects on overall patient comprehension of differences in out- 11. Port FK, Dykstra DM, Merion RM et al. Trends and results for comes between deceased and live donor organs, thus increasing organ donation and transplantation in the United States the current living to deceased donor ratio. 2004. Am J Transplant 2005; 5: 843–849 Downloaded from https://academic.oup.com/ckj/article-abstract/11/4/559/4657174 by Ed 'DeepDyve' Gillespie user on 07 August 2018

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Clinical Kidney JournalOxford University Press

Published: Aug 1, 2018

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