The association between quality of life, intensity of counseling and health literacy amongst patients with nephrolithiasis

The association between quality of life, intensity of counseling and health literacy amongst patients with nephrolithiasis | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article The association between quality of life, intensity of counseling and health literacy amongst patients with nephrolithiasis Wilson Sui, Lavanya Gupta, Sultan Al Azzawi, Maria C. Velasquez, and 3 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6254693/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Objectives The American Urological Association (AUA) provides guidance on primary prevention for nephrolithiasis; however, patient compliance is often poor. The role of healthy literacy in the primary prevention of nephrolithiasis is not well understood. The goal of this study was to investigate kidney stone formers’ perceptions and understanding of primary prevention for recurrent nephrolithiasis. Methods A cross-sectional web-based survey was administered to a random sample of adult volunteers. Disease specific information was queried for stone formers and all participants were asked a series of questions based on the AUA Metabolic Stone Management Guidelines (2016) regarding primary prevention. Receipt of dietary counseling was categorized by comprehensiveness. Patient quality of life was assessed using the Wisconsin Stone Quality of Life questionnaire (WisQOL). Multivariable linear regression was used to identify predictors of stone-specific health literacy. Results Of the 2,482 participants, 429 (17%) reported prior stone history. Overall accuracy rates ranged from 10–98%. Stone patients with comprehensive counseling had the highest scores, driven by significantly better knowledge on oxalate-specific questions (p < 0.001). Receipt of comprehensive counseling was also associated with lower WisQOL scores across most domains (p < 0.001). Multivariable linear regression showed both increased quality of life (p = 0.017) and receipt of comprehensive counseling (p = 0.032) were independent predictors of increased primary prevention-specific health literacy. Conclusions Overall, correct response rates were poor, especially surrounding dietary oxalates. However, kidney stone formers who received more comprehensive counseling demonstrated both improved stone specific quality of life and health literacy. nephrolithiasis dietary prevention measures oxalate stone prevention patient education Figures Figure 1 Figure 2 Figure 3 Introduction Nearly 1 in 11 people in the United States will develop nephrolithiasis and up to half will then develop a recurrent stone within 5 years. 1 , 2 The economic burden of the disease also continues to grow with stone treatment related expenses increasing 50% from 1994 to 2000. 3 Prevention of subsequent stone events therefore has both clinical and financial implications. As the typical western diet – high in salt, animal protein and sweetened beverages – is associated with nephrolithiasis, primary prevention is based on dietary modifications. 4 – 6 Guideline recommendations include increasing fluid intake, maintaining a balanced calcium diet, minimizing dietary intake of animal protein and sodium and regulating oxalate intake. 7 – 9 Despite evidence that stone dietary prevention recommendations can be clinically efficacious, recurrent stone disease remains difficult to manage even with close follow up and motivated patients. 10 , 11 Barriers to primary prevention include provider-related factors such time constraints to counseling or failure to recommend appropriate treatment and patient-related factors such as difficulty with adherence or lack of access to healthy foods. 12 Health literacy – the capacity for patients to seek, understand and act on health information – is especially critical in management of chronic diseases where daily, consistent, long-lasting changes are necessary. 13 Primary prevention of nephrolithiasis can involve multiple simultaneous changes to daily dietary habits which may be difficult for patients to understand and retain. In a study of community fair participants, fewer than half identified the influence 13 dietary items could have on stone risk. 14 Amongst a cohort of stone formers, almost three-fourths did not know or did not believe dietary factors can influence stone formation. 15 In this context, this study sought to evaluate kidney stone patients’ understanding of dietary stone prevention strategies using a large, national survey collaborative. Secondary objectives included assessing the association between stone-specific quality of life measures and understanding of dietary prevention strategies. Materials and Methods Recruitment and study materials Between February and September 2023, an anonymous survey was created in REDCap™ and then distributed via ResearchMatch™, a secure, national, online medical survey collaborative. Participants were incentivized with a chance to be 1 of 10 participants randomly selected to receive $ 50. Of the 17,221 possible participants contacted, 2,792 responded for a 16.2% response rate (Fig. 1 ). Institutional review board approval was obtained (IRB #23-38991) at the University of California, San Francisco. A total of 65 questions were included (supplementary materials). Assessments of patient demographic characteristics and past medical history were obtained from all participants. A screening question to confirm kidney stone history was included and these participants received additional questions regarding their stone-specific history including family history, prior surgeries, receipt of prior metabolic workup and receipt of dietary counseling. Nephrolithiasis-specific counseling was categorized by comprehensiveness – none (receipt of neither dietary counseling or a metabolic workup), partial (receipt of either dietary counseling or a metabolic workup) or comprehensive (receipt of both dietary counseling and a metabolic workup). The Wisconsin Stone Quality of Life (WisQOL) instrument was also used to measure disease-specific quality of life. 16 To evaluate participant understanding of dietary recommendations, participants were asked to classify various foods and beverages and their influence on stone growth. This questionnaire was adapted from a prior cohort study 14 and is based on AUA medical management of stones guidelines. 7 All questions were yes/no. The primary outcome was to identify predictors of improved understanding of metabolic stone management. In order to understand baseline stone prevention health literacy knowledge in the community, non-stone formers were included in the initial survey. Each correct question was given one point with twelve being the maximum score. Patients who did not fill out the complete survey were removed from the analysis (Fig. 1 ). Secondary outcomes included WisQOL scores for stone formers. Statistical analysis Participants were categorized into non-stone formers and stone formers. Stone formers were then further categorized by comprehensiveness of stone-specific counseling (receipt of neither, either or both a metabolic workup and dietary counseling). Descriptive statistics were performed to compare demographic and disease-specific characteristics between the aforementioned categories. For continuous variables, students’ T-tests were performed and for categorical variables, chi-square analysis was applied. Multivariable linear regression was performed to identify predictors of higher dietary stone prevention questionnaire scores amongst stone formers. The model included age, gender, race, education level, insurance status, history of diabetes, obesity, family history of kidney stones, recurrent stone formation, prior stone surgery, receipt of metabolic workup or dietary counseling and WisQOL scores. All statistics were performed using SPSS v27. Results Overall, 2,053 non-stone formers and 429 stone formers responded to the survey (Fig. 1 ). Of the stone formers, 41% (177) reported no prior counseling, 37% (157) reported partial counseling and 21% (91) reported comprehensive counseling (Table 1). Amongst stone formers, participants who received comprehensive counseling were younger, more likely to be male and non-white, were more educated, more likely to be employed and have private insurance (all p < 0.05). These patients were also more likely to have a family history of stones, be a recurrent stone former and have undergone prior stone surgeries (p < 0.001). Non-stone formers had the lowest accuracy (Fig. 2 A), and amongst stone formers, those who received comprehensive counseling performed the best. The differences were driven by the subset of oxalate-related questions (p < 0.001) as there were no differences in mean scores on fluid-related questions (p = 0.251) or on the other remaining questions (p = 0.617). On assessment of individual questions, accuracy rates ranged from 10–98% (Fig. 2 B). Over 60% answered questions regarding the role of water, salt, lemonade, red meat and clear soda correctly. However, in comparison, on the remaining seven questions accuracy ranged widely from 10–54%. Significant differences were identified on questions regarding calcium, chocolate, nuts, spinach and beets, with increasing comprehensiveness of counseling associated with better accuracy. Stone formers who received neither counseling nor workup had the lowest mean standard WisQOL scores compared to those who received either or both (Fig. 3 ). The same trend was observed in the social impact, emotional impact and disease impact domains while there were no differences in the impact on vitality measure. On multivariable linear regression (supplementary table 1), predictors of improved understanding of dietary stone recommendations included younger age (β -0.015, 95% CI -0.03 to -0.001), history of recurrent stones (β 0.548, 95% CI 0.052 to 1.044), having received both counseling or metabolic workup (β 0.559, 95% CI 0.049 to 1.07) and lower WisQOL scores (β -0.01, 95% CI ± -0.018 to -0.002). Discussion Our study has three principal findings. One, while both stone formers and non-stone formers had similar understanding of the role that fluid, red meat and salt have on recurrent stone disease, stone formers demonstrated significantly better understanding of the role of dietary oxalate. Two, amongst stone formers, receipt of both dietary counseling and a metabolic workup was associated with the best understanding of dietary prevention strategies. Third, disease-specific quality of life was highest in those participants who received the most counseling. While stone formers demonstrated better understanding of dietary prevention strategies compared to non-stone formers, accuracy rates were poor overall. Amongst all participants, > 60% answered questions surrounding the role of water, salt, lemonade, red meat and clear soda correctly. On the remaining seven questions, however, accuracy ranged widely from 10–54%. Stone formers who received both counseling and underwent a metabolic workup, performed significantly better than non-stone formers and stone formers who received either forms of counseling or none on questions surrounding oxalate-containing foods. Given the specialized knowledge this represents, this suggests that dietary counseling is retained and is efficacious. However, it is notable that at least half of patients – including those who have received a metabolic workup and counseling – did not recall this information. These response rates were similar to those reported in a study of 753 participants recruited from a county fair, 35% of whom had a history of prior stone disease. Participants (regardless of prior stone history) identified the role of water and salt in stone formation most accurately. The role of oxalate-containing foods, however, was the most challenging, with less than 50% accuracy rates across all items. These findings suggest that oxalate-specific education could be a high yield target for future patient education interventions. Both stone-specific quality of life and intensity of counseling were predictors of improved disease-specific health literacy. In our multivariable model, both WisQOL score and receipt of both a workup and counseling were associated with increased stone-specific health literacy (Table 2). This may be reflective of a stone clinic effect though we did not directly assess for this in our survey. To our knowledge, this is the first report of this association amongst stone patients though this is not surprising as health literacy has been shown to be positively correlated with quality of life amongst cancer patients 17 and other chronic diseases. 18 , 19 In addition, low health literacy has been associated with poor health outcomes and up to half of patients are at risk of limited health literacy. 20 , 21 Health literacy regarding stone disease may be limited as in a cross-sectional study of 1,018 urologic patients, almost 75% did not believe or did not know diet influenced stone disease risk. 15 Comprehensive counseling and workup can improve patient understanding of their disease and encouragingly, over 70% of participants reported they would be ready to make dietary modifications to decrease their risk of stone formation. 15 Long-term adherence, patient access to healthy foods other social determinants of health though remain difficult barriers to overcome. 12 This study has several important limitations to consider. First, while our study participants were drawn from a large, nationwide, diverse population, it was still skewed towards white adults with at least a college education, limiting its generalizability. Patients with more education are less likely to present with severe stone disease, 22 therefore, our cohort may be skewed more towards individuals with less advanced stone disease for whom a metabolic workup was not indicated. However, all patients with stone disease should receive at least stone dietary counseling and yet 42% of our respondents did not recall receiving either counseling or a workup. Second, our questionnaire was not validated so there is a risk of measurement bias in our sample. In addition, as a survey-based study, there is a chance of recall bias or response error. However, our survey is based on one used in a community cohort 14 and yielded similar accuracy rates among similar domains. Third, the recommendations tested were not as applicable to non-calcium-based stones (ie. uric acid or struvite), however, calcium-based stones are by far the most common amongst stone formers. 23 Fourth, while we found the largest differences in accurary amongst oxalate-related questions, many standard stone patients would not be expected to have received this targeted counseling as oxalate is not a component of all stones and hyperoxaluria requires a 24-hour urine test to identify. Finally, our questionnaire may be over-simplified especially with only a binary outcome where there are many nuances to stone dietary management. However, research suggests that a good-bad dichotomy may be the most effective for dietary counseling. 24 Nonetheless, this study is the largest reported in the literature with over 2,400 respondents sampled from across the nation and incorporated assessment of disease-specific quality of life using a validated survey. 16 The overall low accuracy rate for both non-stone formers and stone formers on oxalate-specific questions in particular suggests this may be a high yield target for future intervention. While adherence rates to dietary therapy are commonly reported below 50%, 25,26 strategies for improving patient adherence have included incorporating Registered Dietitian Nutritionists into practice 27 and group appointments for stone patients. 28 The rise of smart or digital health technology 29 , 30 may improve patient adherence with smart containers to monitor fluid intake, wearable technology with sensor capability or applications to send automated electronic reminders. Ultimately, enabling stone patients to better understand their own disease should lead to improved participation in and adherence to primary prevention thereby leading to decreased recurrent stone events and improve quality of life. Conclusions Overall understanding of primary prevention strategies is especially poor surrounding dietary oxalates. Kidney stone formers who received more comprehensive counseling demonstrated not only improved health literacy but also better stone specific quality of life. Future interventions centered around understanding sources of dietary oxalate could have the highest impact on primary prevention. Abbreviations AUA American Urologic Association EAU European Association of Urology WisQOL Wisconsin Stone Quality of Life questionnaire Declarations Ethical approval: not required Conflict of interest: the authors have no conflicts to disclose Funding: n/a Author Contribution Conceptualization: WS, LG, SA, TC, MLSMethodology/Analysis: WS, HK, MCV, MLSWriting – Original draft: WS, LG, MCV, MLSWriting – review and editing: WS, LG, HK, TC, MLSSupervision: TC, MLS Data Availability Data is provided within the manuscript or supplementary information files. Please contact Dr. Wilson Sui ( [email protected] ) to discuss data access requests. References Scales CD, Smith AC, Hanley JM, Saigal CS. Prevalence of Kidney Stones in the United States. European Urology . 2012;62(1):160-165. doi:10.1016/j.eururo.2012.03.052 Rule AD, Lieske JC, Li X, Melton III LJ, Krambeck AE, Bergstralh EJ. The ROKS nomogram for predicting a second symptomatic stone episode. 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Nutbeam D. The evolving concept of health literacy. Social science & medicine . 2008;67(12):2072-2078. Marsh BM, Sathianathen N, Tejpaul R, Albersheim-Carter J, Bearrick E, Borofsky MS. Public Perceptions on the Influence of Diet and Kidney Stone Formation. J Endourol . May 2019;33(5):423-429. doi:10.1089/end.2019.0010 Fakhoury MQ, Gordon B, Shorter B, et al. Perceptions of dietary factors promoting and preventing nephrolithiasis: a cross-sectional survey. World J Urol . Aug 2019;37(8):1723-1731. doi:10.1007/s00345-018-2562-6 Penniston KL, Nakada SY. Development of an instrument to assess the health related quality of life of kidney stone formers. The Journal of urology . 2013;189(3):921-930. Halverson JL, Martinez-Donate AP, Palta M, et al. Health literacy and health-related quality of life among a population-based sample of cancer patients. Journal of health communication . 2015;20(11):1320-1329. Sayah FA, Qiu W, Johnson JA. Health literacy and health-related quality of life in adults with type 2 diabetes: a longitudinal study. Quality of Life Research . 2016;25:1487-1494. Wolf MS, Davis TC, Osborn CY, Skripkauskas S, Bennett CL, Makoul G. Literacy, self-efficacy, and HIV medication adherence. Patient education and counseling . 2007;65(2):253-260. DeWalt DA, Pignone MP. Reading is fundamental: the relationship between literacy and health. Archives of internal medicine . 2005;165(17):1943-1944. Adams RJ, Appleton SL, Hill CL, Dodd M, Findlay C, Wilson DH. Risks associated with low functional health literacy in an Australian population. Medical Journal of Australia . 2009;191(10):530-534. Bayne DB, Usawachintachit M, Armas-Phan M, et al. Influence of Socioeconomic Factors on Stone Burden at Presentation to Tertiary Referral Center: Data From the Registry for Stones of the Kidney and Ureter. Urology . Sep 2019;131:57-63. doi:10.1016/j.urology.2019.05.009 Herring LC. Observations on the analysis of ten thousand urinary calculi. J Urol . Oct 1962;88:545-62. doi:10.1016/S0022-5347(17)64842-0 Oakes ME. Stereotypical thinking about foods and perceived capacity to promote weight gain. Appetite . Jun 2005;44(3):317-24. doi:10.1016/j.appet.2005.03.010 Khambati A, Matulewicz RS, Perry KT, Nadler RB. Factors associated with compliance to increased fluid intake and urine volume following dietary counseling in first-time kidney stone patients. Journal of endourology . 2017;31(6):605-610. van Drongelen J, Kiemeney LA, Debruyne FM, de la Rosette JJ. Impact of urometabolic evaluation on prevention of urolithiasis: a retrospective study. Urology . 1998;52(3):384-391. Jhagroo RA, Nakada SY, Penniston KL. Shared medical appointments for patients with kidney stones new to medical management decrease appointment wait time and increase patient knowledge. The Journal of urology . 2013;190(5):1778-1784. Beto JA, Ramirez WE, Bansal VK. Medical nutrition therapy in adults with chronic kidney disease: integrating evidence and consensus into practice for the generalist registered dietitian nutritionist. Journal of the Academy of Nutrition and Dietetics . 2014;114(7):1077-1087. Wright HC, Alshara L, DiGennaro H, et al. The impact of smart technology on adherence rates and fluid management in the prevention of kidney stones. Urolithiasis . Feb 2022;50(1):29-36. doi:10.1007/s00240-021-01270-6 Streeper NM, Dubnansky A, Sanders AB, Lehman K, Thomaz E, Conroy DE. Improving Fluid Intake Behavior Among Patients With Kidney Stones: Understanding Patients' Experiences and Acceptability of Digital Health Technology. Urology . Nov 2019;133:57-66. doi:10.1016/j.urology.2019.05.056 Table 1 Table 1 is available in the Supplementary Files section. Additional Declarations No competing interests reported. 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Velasquez","email":"","orcid":"","institution":"University of California San Francisco","correspondingAuthor":false,"prefix":"","firstName":"Maria","middleName":"C.","lastName":"Velasquez","suffix":""},{"id":442253035,"identity":"5ae54374-3293-46cc-9346-4bef383c24e5","order_by":4,"name":"Heiko Yang","email":"","orcid":"","institution":"University of California San Francisco","correspondingAuthor":false,"prefix":"","firstName":"Heiko","middleName":"","lastName":"Yang","suffix":""},{"id":442253036,"identity":"9d67bbe1-ecc6-44ed-8925-e3ee6b735f10","order_by":5,"name":"Thomas Chi","email":"","orcid":"","institution":"University of California San Francisco","correspondingAuthor":false,"prefix":"","firstName":"Thomas","middleName":"","lastName":"Chi","suffix":""},{"id":442253037,"identity":"75f65080-ceee-49b0-967d-8496601a6eeb","order_by":6,"name":"Marshall L Stoller","email":"","orcid":"","institution":"University of California San Francisco","correspondingAuthor":false,"prefix":"","firstName":"Marshall","middleName":"L","lastName":"Stoller","suffix":""}],"badges":[],"createdAt":"2025-03-18 15:38:13","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-6254693/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6254693/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":80711136,"identity":"d05a24f7-2b6b-4b5e-ba3b-f9602939d143","added_by":"auto","created_at":"2025-04-16 09:05:41","extension":"jpg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":52532,"visible":true,"origin":"","legend":"\u003cp\u003eCohort selection.\u003c/p\u003e","description":"","filename":"1.jpg","url":"https://assets-eu.researchsquare.com/files/rs-6254693/v1/5d83e0dad3d23cf8a05de44b.jpg"},{"id":80709971,"identity":"538e8c61-c7a6-45b5-a976-73bf41818fb7","added_by":"auto","created_at":"2025-04-16 08:57:41","extension":"jpg","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":83003,"visible":true,"origin":"","legend":"\u003cp\u003eComparison of (A) overall and subset scores and individual question performance (B) between non-stone formers and stone formers stratified by comprehensiveness of stone-specific counseling. Analysis of variance used to calculate individual p-values and * denotes statistically significant difference on chi-square analysis.\u003c/p\u003e","description":"","filename":"2.jpg","url":"https://assets-eu.researchsquare.com/files/rs-6254693/v1/8e15cf815455af8d17393085.jpg"},{"id":80709967,"identity":"f78a6e4e-4268-40d0-afc3-816a162032b3","added_by":"auto","created_at":"2025-04-16 08:57:41","extension":"jpg","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":40894,"visible":true,"origin":"","legend":"\u003cp\u003eMean WisQoL scores of stone formers stratified by comprehensiveness of stone-specific counseling.\u003c/p\u003e","description":"","filename":"3.jpg","url":"https://assets-eu.researchsquare.com/files/rs-6254693/v1/59dd1dc996fc30f267c6eb63.jpg"},{"id":81029533,"identity":"c9c96c4c-91b3-4c74-9fad-b7056fcfeebf","added_by":"auto","created_at":"2025-04-21 11:08:51","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":606956,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6254693/v1/0bccb662-c288-4cad-b340-e0a783412941.pdf"},{"id":80712186,"identity":"4a1537fa-7554-4954-81ed-f2950f338933","added_by":"auto","created_at":"2025-04-16 09:13:41","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":17333,"visible":true,"origin":"","legend":"","description":"","filename":"Supplementarytable1.docx","url":"https://assets-eu.researchsquare.com/files/rs-6254693/v1/149718317614cb537f63e554.docx"},{"id":80711144,"identity":"87f2f6f3-14e8-44b5-8f0e-ca560c5cf6a3","added_by":"auto","created_at":"2025-04-16 09:05:41","extension":"docx","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":21351,"visible":true,"origin":"","legend":"","description":"","filename":"Table1.docx","url":"https://assets-eu.researchsquare.com/files/rs-6254693/v1/078fe35ad200b9ad6dfe8395.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"The association between quality of life, intensity of counseling and health literacy amongst patients with nephrolithiasis","fulltext":[{"header":"Introduction","content":"\u003cp\u003eNearly 1 in 11 people in the United States will develop nephrolithiasis and up to half will then develop a recurrent stone within 5 years.\u003csup\u003e\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e,\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e\u003c/sup\u003e The economic burden of the disease also continues to grow with stone treatment related expenses increasing 50% from 1994 to 2000.\u003csup\u003e\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e\u003c/sup\u003e Prevention of subsequent stone events therefore has both clinical and financial implications. As the typical western diet \u0026ndash; high in salt, animal protein and sweetened beverages \u0026ndash; is associated with nephrolithiasis, primary prevention is based on dietary modifications.\u003csup\u003e\u003cspan additionalcitationids=\"CR5\" citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u003c/sup\u003e Guideline recommendations include increasing fluid intake, maintaining a balanced calcium diet, minimizing dietary intake of animal protein and sodium and regulating oxalate intake.\u003csup\u003e\u003cspan additionalcitationids=\"CR8\" citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eDespite evidence that stone dietary prevention recommendations can be clinically efficacious, recurrent stone disease remains difficult to manage even with close follow up and motivated patients.\u003csup\u003e\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e,\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u003c/sup\u003e Barriers to primary prevention include provider-related factors such time constraints to counseling or failure to recommend appropriate treatment and patient-related factors such as difficulty with adherence or lack of access to healthy foods.\u003csup\u003e\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u003c/sup\u003e Health literacy \u0026ndash; the capacity for patients to seek, understand and act on health information \u0026ndash; is especially critical in management of chronic diseases where daily, consistent, long-lasting changes are necessary.\u003csup\u003e\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e\u003c/sup\u003e Primary prevention of nephrolithiasis can involve multiple simultaneous changes to daily dietary habits which may be difficult for patients to understand and retain. In a study of community fair participants, fewer than half identified the influence 13 dietary items could have on stone risk.\u003csup\u003e\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e\u003c/sup\u003e Amongst a cohort of stone formers, almost three-fourths did not know or did not believe dietary factors can influence stone formation.\u003csup\u003e\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eIn this context, this study sought to evaluate kidney stone patients\u0026rsquo; understanding of dietary stone prevention strategies using a large, national survey collaborative. Secondary objectives included assessing the association between stone-specific quality of life measures and understanding of dietary prevention strategies.\u003c/p\u003e"},{"header":"Materials and Methods","content":"\u003cp\u003eRecruitment and study materials\u003c/p\u003e \u003cp\u003eBetween February and September 2023, an anonymous survey was created in REDCap\u0026trade; and then distributed via ResearchMatch\u0026trade;, a secure, national, online medical survey collaborative. Participants were incentivized with a chance to be 1 of 10 participants randomly selected to receive \u003cspan\u003e$\u003c/span\u003e50. Of the 17,221 possible participants contacted, 2,792 responded for a 16.2% response rate (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). Institutional review board approval was obtained (IRB #23-38991) at the University of California, San Francisco.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eA total of 65 questions were included (supplementary materials). Assessments of patient demographic characteristics and past medical history were obtained from all participants. A screening question to confirm kidney stone history was included and these participants received additional questions regarding their stone-specific history including family history, prior surgeries, receipt of prior metabolic workup and receipt of dietary counseling. Nephrolithiasis-specific counseling was categorized by comprehensiveness \u0026ndash; none (receipt of neither dietary counseling or a metabolic workup), partial (receipt of either dietary counseling or a metabolic workup) or comprehensive (receipt of both dietary counseling and a metabolic workup). The Wisconsin Stone Quality of Life (WisQOL) instrument was also used to measure disease-specific quality of life.\u003csup\u003e\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e\u003c/sup\u003e To evaluate participant understanding of dietary recommendations, participants were asked to classify various foods and beverages and their influence on stone growth. This questionnaire was adapted from a prior cohort study\u003csup\u003e\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e\u003c/sup\u003e and is based on AUA medical management of stones guidelines.\u003csup\u003e\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u003c/sup\u003e All questions were yes/no.\u003c/p\u003e \u003cp\u003eThe primary outcome was to identify predictors of improved understanding of metabolic stone management. In order to understand baseline stone prevention health literacy knowledge in the community, non-stone formers were included in the initial survey. Each correct question was given one point with twelve being the maximum score. Patients who did not fill out the complete survey were removed from the analysis (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). Secondary outcomes included WisQOL scores for stone formers.\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStatistical analysis\u003c/h2\u003e \u003cp\u003eParticipants were categorized into non-stone formers and stone formers. Stone formers were then further categorized by comprehensiveness of stone-specific counseling (receipt of neither, either or both a metabolic workup and dietary counseling). Descriptive statistics were performed to compare demographic and disease-specific characteristics between the aforementioned categories. For continuous variables, students\u0026rsquo; T-tests were performed and for categorical variables, chi-square analysis was applied. Multivariable linear regression was performed to identify predictors of higher dietary stone prevention questionnaire scores amongst stone formers. The model included age, gender, race, education level, insurance status, history of diabetes, obesity, family history of kidney stones, recurrent stone formation, prior stone surgery, receipt of metabolic workup or dietary counseling and WisQOL scores. All statistics were performed using SPSS v27.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eOverall, 2,053 non-stone formers and 429 stone formers responded to the survey (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). Of the stone formers, 41% (177) reported no prior counseling, 37% (157) reported partial counseling and 21% (91) reported comprehensive counseling (Table\u0026nbsp;1). Amongst stone formers, participants who received comprehensive counseling were younger, more likely to be male and non-white, were more educated, more likely to be employed and have private insurance (all p\u0026thinsp;\u0026lt;\u0026thinsp;0.05). These patients were also more likely to have a family history of stones, be a recurrent stone former and have undergone prior stone surgeries (p\u0026thinsp;\u0026lt;\u0026thinsp;0.001).\u003c/p\u003e \u003cp\u003eNon-stone formers had the lowest accuracy (Fig.\u0026nbsp;\u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e2\u003c/span\u003eA), and amongst stone formers, those who received comprehensive counseling performed the best. The differences were driven by the subset of oxalate-related questions (p\u0026thinsp;\u0026lt;\u0026thinsp;0.001) as there were no differences in mean scores on fluid-related questions (p\u0026thinsp;=\u0026thinsp;0.251) or on the other remaining questions (p\u0026thinsp;=\u0026thinsp;0.617). On assessment of individual questions, accuracy rates ranged from 10\u0026ndash;98% (Fig.\u0026nbsp;\u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e2\u003c/span\u003eB). Over 60% answered questions regarding the role of water, salt, lemonade, red meat and clear soda correctly. However, in comparison, on the remaining seven questions accuracy ranged widely from 10\u0026ndash;54%. Significant differences were identified on questions regarding calcium, chocolate, nuts, spinach and beets, with increasing comprehensiveness of counseling associated with better accuracy.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eStone formers who received neither counseling nor workup had the lowest mean standard WisQOL scores compared to those who received either or both (Fig.\u0026nbsp;\u003cspan refid=\"Fig3\" class=\"InternalRef\"\u003e3\u003c/span\u003e). The same trend was observed in the social impact, emotional impact and disease impact domains while there were no differences in the impact on vitality measure.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eOn multivariable linear regression (supplementary table 1), predictors of improved understanding of dietary stone recommendations included younger age (β -0.015, 95% CI -0.03 to -0.001), history of recurrent stones (β 0.548, 95% CI 0.052 to 1.044), having received both counseling or metabolic workup (β 0.559, 95% CI 0.049 to 1.07) and lower WisQOL scores (β -0.01, 95% CI \u0026plusmn; -0.018 to -0.002).\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eOur study has three principal findings. One, while both stone formers and non-stone formers had similar understanding of the role that fluid, red meat and salt have on recurrent stone disease, stone formers demonstrated significantly better understanding of the role of dietary oxalate. Two, amongst stone formers, receipt of both dietary counseling and a metabolic workup was associated with the best understanding of dietary prevention strategies. Third, disease-specific quality of life was highest in those participants who received the most counseling.\u003c/p\u003e \u003cp\u003eWhile stone formers demonstrated better understanding of dietary prevention strategies compared to non-stone formers, accuracy rates were poor overall. Amongst all participants, \u0026gt;\u0026thinsp;60% answered questions surrounding the role of water, salt, lemonade, red meat and clear soda correctly. On the remaining seven questions, however, accuracy ranged widely from 10\u0026ndash;54%. Stone formers who received both counseling and underwent a metabolic workup, performed significantly better than non-stone formers and stone formers who received either forms of counseling or none on questions surrounding oxalate-containing foods. Given the specialized knowledge this represents, this suggests that dietary counseling is retained and is efficacious. However, it is notable that at least half of patients \u0026ndash; including those who have received a metabolic workup and counseling \u0026ndash; did not recall this information. These response rates were similar to those reported in a study of 753 participants recruited from a county fair, 35% of whom had a history of prior stone disease. Participants (regardless of prior stone history) identified the role of water and salt in stone formation most accurately. The role of oxalate-containing foods, however, was the most challenging, with less than 50% accuracy rates across all items. These findings suggest that oxalate-specific education could be a high yield target for future patient education interventions.\u003c/p\u003e \u003cp\u003eBoth stone-specific quality of life and intensity of counseling were predictors of improved disease-specific health literacy. In our multivariable model, both WisQOL score and receipt of both a workup and counseling were associated with increased stone-specific health literacy (Table\u0026nbsp;2). This may be reflective of a stone clinic effect though we did not directly assess for this in our survey. To our knowledge, this is the first report of this association amongst stone patients though this is not surprising as health literacy has been shown to be positively correlated with quality of life amongst cancer patients\u003csup\u003e\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e\u003c/sup\u003e and other chronic diseases.\u003csup\u003e\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e,\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u003c/sup\u003e In addition, low health literacy has been associated with poor health outcomes and up to half of patients are at risk of limited health literacy.\u003csup\u003e\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e,\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e\u003c/sup\u003e Health literacy regarding stone disease may be limited as in a cross-sectional study of 1,018 urologic patients, almost 75% did not believe or did not know diet influenced stone disease risk.\u003csup\u003e\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u003c/sup\u003e Comprehensive counseling and workup can improve patient understanding of their disease and encouragingly, over 70% of participants reported they would be ready to make dietary modifications to decrease their risk of stone formation.\u003csup\u003e\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u003c/sup\u003e Long-term adherence, patient access to healthy foods other social determinants of health though remain difficult barriers to overcome.\u003csup\u003e\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eThis study has several important limitations to consider. First, while our study participants were drawn from a large, nationwide, diverse population, it was still skewed towards white adults with at least a college education, limiting its generalizability. Patients with more education are less likely to present with severe stone disease,\u003csup\u003e\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e\u003c/sup\u003e therefore, our cohort may be skewed more towards individuals with less advanced stone disease for whom a metabolic workup was not indicated. However, all patients with stone disease should receive at least stone dietary counseling and yet 42% of our respondents did not recall receiving either counseling or a workup. Second, our questionnaire was not validated so there is a risk of measurement bias in our sample. In addition, as a survey-based study, there is a chance of recall bias or response error. However, our survey is based on one used in a community cohort \u003csup\u003e\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e\u003c/sup\u003e and yielded similar accuracy rates among similar domains. Third, the recommendations tested were not as applicable to non-calcium-based stones (ie. uric acid or struvite), however, calcium-based stones are by far the most common amongst stone formers.\u003csup\u003e\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e\u003c/sup\u003e Fourth, while we found the largest differences in accurary amongst oxalate-related questions, many standard stone patients would not be expected to have received this targeted counseling as oxalate is not a component of all stones and hyperoxaluria requires a 24-hour urine test to identify. Finally, our questionnaire may be over-simplified especially with only a binary outcome where there are many nuances to stone dietary management. However, research suggests that a good-bad dichotomy may be the most effective for dietary counseling.\u003csup\u003e\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eNonetheless, this study is the largest reported in the literature with over 2,400 respondents sampled from across the nation and incorporated assessment of disease-specific quality of life using a validated survey.\u003csup\u003e\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e\u003c/sup\u003e The overall low accuracy rate for both non-stone formers and stone formers on oxalate-specific questions in particular suggests this may be a high yield target for future intervention. While adherence rates to dietary therapy are commonly reported below 50%,\u003csup\u003e25,26\u003c/sup\u003e strategies for improving patient adherence have included incorporating Registered Dietitian Nutritionists into practice\u003csup\u003e\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e\u003c/sup\u003e and group appointments for stone patients.\u003csup\u003e\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e\u003c/sup\u003e The rise of smart or digital health technology\u003csup\u003e\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e,\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e\u003c/sup\u003e may improve patient adherence with smart containers to monitor fluid intake, wearable technology with sensor capability or applications to send automated electronic reminders. Ultimately, enabling stone patients to better understand their own disease should lead to improved participation in and adherence to primary prevention thereby leading to decreased recurrent stone events and improve quality of life.\u003c/p\u003e"},{"header":"Conclusions","content":"\u003cp\u003eOverall understanding of primary prevention strategies is especially poor surrounding dietary oxalates. Kidney stone formers who received more comprehensive counseling demonstrated not only improved health literacy but also better stone specific quality of life. Future interventions centered around understanding sources of dietary oxalate could have the highest impact on primary prevention.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eAUA\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eAmerican Urologic Association\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eEAU\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eEuropean Association of Urology\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eWisQOL\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eWisconsin Stone Quality of Life questionnaire\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e \u003ch2\u003eEthical approval:\u003c/h2\u003e \u003cp\u003enot required\u003c/p\u003e \u003c/p\u003e\u003cp\u003e \u003ch2\u003eConflict of interest:\u003c/h2\u003e \u003cp\u003ethe authors have no conflicts to disclose\u003c/p\u003e \u003c/p\u003e\u003ch2\u003eFunding:\u003c/h2\u003e \u003cp\u003en/a\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eConceptualization: WS, LG, SA, TC, MLSMethodology/Analysis: WS, HK, MCV, MLSWriting \u0026ndash; Original draft: WS, LG, MCV, MLSWriting \u0026ndash; review and editing: WS, LG, HK, TC, MLSSupervision: TC, MLS\u003c/p\u003e\u003ch2\u003eData Availability\u003c/h2\u003e\u003cp\u003eData is provided within the manuscript or supplementary information files. Please contact Dr. Wilson Sui ([email protected]) to discuss data access requests.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eScales CD, Smith AC, Hanley JM, Saigal CS. Prevalence of Kidney Stones in the United States. \u003cem\u003eEuropean Urology\u003c/em\u003e. 2012;62(1):160-165. doi:10.1016/j.eururo.2012.03.052\u003c/li\u003e\n\u003cli\u003eRule AD, Lieske JC, Li X, Melton III LJ, Krambeck AE, Bergstralh EJ. The ROKS nomogram for predicting a second symptomatic stone episode. \u003cem\u003eJournal of the American Society of Nephrology\u003c/em\u003e. 2014;25(12):2878-2886.\u003c/li\u003e\n\u003cli\u003ePearle MS, Calhoun EA, Curhan GC, Urologic Diseases of America P. Urologic diseases in America project: urolithiasis. \u003cem\u003eJ Urol\u003c/em\u003e. Mar 2005;173(3):848-57. doi:10.1097/01.ju.0000152082.14384.d7\u003c/li\u003e\n\u003cli\u003eFink HA, Akornor JW, Garimella PS, et al. Diet, fluid, or supplements for secondary prevention of nephrolithiasis: a systematic review and meta-analysis of randomized trials. \u003cem\u003eEuropean urology\u003c/em\u003e. 2009;56(1):72-80.\u003c/li\u003e\n\u003cli\u003eHan H, Segal AM, Seifter JL, Dwyer JT. Nutritional management of kidney stones (nephrolithiasis). \u003cem\u003eClinical nutrition research\u003c/em\u003e. 2015;4(3):137-152.\u003c/li\u003e\n\u003cli\u003eSorensen MD, Kahn AJ, Reiner AP, et al. Impact of nutritional factors on incident kidney stone formation: a report from the WHI OS. \u003cem\u003eJ Urol\u003c/em\u003e. May 2012;187(5):1645-9. doi:10.1016/j.juro.2011.12.077\u003c/li\u003e\n\u003cli\u003ePearle MS, Goldfarb DS, Assimos DG, et al. Medical management of kidney stones: AUA guideline. \u003cem\u003eJ Urol\u003c/em\u003e. Aug 2014;192(2):316-24. doi:10.1016/j.juro.2014.05.006\u003c/li\u003e\n\u003cli\u003eSkolarikos A, Straub M, Knoll T, et al. 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Social determinants of kidney stone disease: the impact of race, income and access on urolithiasis treatment and outcomes. \u003cem\u003eUrology\u003c/em\u003e. 2022;163:190-195.\u003c/li\u003e\n\u003cli\u003eNutbeam D. The evolving concept of health literacy. \u003cem\u003eSocial science \u0026amp; medicine\u003c/em\u003e. 2008;67(12):2072-2078.\u003c/li\u003e\n\u003cli\u003eMarsh BM, Sathianathen N, Tejpaul R, Albersheim-Carter J, Bearrick E, Borofsky MS. Public Perceptions on the Influence of Diet and Kidney Stone Formation. \u003cem\u003eJ Endourol\u003c/em\u003e. May 2019;33(5):423-429. doi:10.1089/end.2019.0010\u003c/li\u003e\n\u003cli\u003eFakhoury MQ, Gordon B, Shorter B, et al. Perceptions of dietary factors promoting and preventing nephrolithiasis: a cross-sectional survey. \u003cem\u003eWorld J Urol\u003c/em\u003e. Aug 2019;37(8):1723-1731. doi:10.1007/s00345-018-2562-6\u003c/li\u003e\n\u003cli\u003ePenniston KL, Nakada SY. Development of an instrument to assess the health related quality of life of kidney stone formers. \u003cem\u003eThe Journal of urology\u003c/em\u003e. 2013;189(3):921-930.\u003c/li\u003e\n\u003cli\u003eHalverson JL, Martinez-Donate AP, Palta M, et al. Health literacy and health-related quality of life among a population-based sample of cancer patients. \u003cem\u003eJournal of health communication\u003c/em\u003e. 2015;20(11):1320-1329.\u003c/li\u003e\n\u003cli\u003eSayah FA, Qiu W, Johnson JA. Health literacy and health-related quality of life in adults with type 2 diabetes: a longitudinal study. \u003cem\u003eQuality of Life Research\u003c/em\u003e. 2016;25:1487-1494.\u003c/li\u003e\n\u003cli\u003eWolf MS, Davis TC, Osborn CY, Skripkauskas S, Bennett CL, Makoul G. Literacy, self-efficacy, and HIV medication adherence. \u003cem\u003ePatient education and counseling\u003c/em\u003e. 2007;65(2):253-260.\u003c/li\u003e\n\u003cli\u003eDeWalt DA, Pignone MP. Reading is fundamental: the relationship between literacy and health. \u003cem\u003eArchives of internal medicine\u003c/em\u003e. 2005;165(17):1943-1944.\u003c/li\u003e\n\u003cli\u003eAdams RJ, Appleton SL, Hill CL, Dodd M, Findlay C, Wilson DH. Risks associated with low functional health literacy in an Australian population. \u003cem\u003eMedical Journal of Australia\u003c/em\u003e. 2009;191(10):530-534.\u003c/li\u003e\n\u003cli\u003eBayne DB, Usawachintachit M, Armas-Phan M, et al. Influence of Socioeconomic Factors on Stone Burden at Presentation to Tertiary Referral Center: Data From the Registry for Stones of the Kidney and Ureter. \u003cem\u003eUrology\u003c/em\u003e. Sep 2019;131:57-63. doi:10.1016/j.urology.2019.05.009\u003c/li\u003e\n\u003cli\u003eHerring LC. Observations on the analysis of ten thousand urinary calculi. \u003cem\u003eJ Urol\u003c/em\u003e. Oct 1962;88:545-62. doi:10.1016/S0022-5347(17)64842-0\u003c/li\u003e\n\u003cli\u003eOakes ME. Stereotypical thinking about foods and perceived capacity to promote weight gain. \u003cem\u003eAppetite\u003c/em\u003e. Jun 2005;44(3):317-24. doi:10.1016/j.appet.2005.03.010\u003c/li\u003e\n\u003cli\u003eKhambati A, Matulewicz RS, Perry KT, Nadler RB. Factors associated with compliance to increased fluid intake and urine volume following dietary counseling in first-time kidney stone patients. \u003cem\u003eJournal of endourology\u003c/em\u003e. 2017;31(6):605-610.\u003c/li\u003e\n\u003cli\u003evan Drongelen J, Kiemeney LA, Debruyne FM, de la Rosette JJ. Impact of urometabolic evaluation on prevention of urolithiasis: a retrospective study. \u003cem\u003eUrology\u003c/em\u003e. 1998;52(3):384-391.\u003c/li\u003e\n\u003cli\u003eJhagroo RA, Nakada SY, Penniston KL. Shared medical appointments for patients with kidney stones new to medical management decrease appointment wait time and increase patient knowledge. \u003cem\u003eThe Journal of urology\u003c/em\u003e. 2013;190(5):1778-1784.\u003c/li\u003e\n\u003cli\u003eBeto JA, Ramirez WE, Bansal VK. Medical nutrition therapy in adults with chronic kidney disease: integrating evidence and consensus into practice for the generalist registered dietitian nutritionist. \u003cem\u003eJournal of the Academy of Nutrition and Dietetics\u003c/em\u003e. 2014;114(7):1077-1087.\u003c/li\u003e\n\u003cli\u003eWright HC, Alshara L, DiGennaro H, et al. The impact of smart technology on adherence rates and fluid management in the prevention of kidney stones. \u003cem\u003eUrolithiasis\u003c/em\u003e. Feb 2022;50(1):29-36. doi:10.1007/s00240-021-01270-6\u003c/li\u003e\n\u003cli\u003eStreeper NM, Dubnansky A, Sanders AB, Lehman K, Thomaz E, Conroy DE. Improving Fluid Intake Behavior Among Patients With Kidney Stones: Understanding Patients\u0026apos; Experiences and Acceptability of Digital Health Technology. \u003cem\u003eUrology\u003c/em\u003e. Nov 2019;133:57-66. doi:10.1016/j.urology.2019.05.056\u003c/li\u003e\n\u003c/ol\u003e"},{"header":"Table 1","content":"\u003cp\u003eTable 1 is available in the Supplementary Files section.\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"nephrolithiasis, dietary prevention measures, oxalate, stone prevention, patient education","lastPublishedDoi":"10.21203/rs.3.rs-6254693/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6254693/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eObjectives\u003c/h2\u003e \u003cp\u003eThe American Urological Association (AUA) provides guidance on primary prevention for nephrolithiasis; however, patient compliance is often poor. The role of healthy literacy in the primary prevention of nephrolithiasis is not well understood. The goal of this study was to investigate kidney stone formers\u0026rsquo; perceptions and understanding of primary prevention for recurrent nephrolithiasis.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eA cross-sectional web-based survey was administered to a random sample of adult volunteers. Disease specific information was queried for stone formers and all participants were asked a series of questions based on the AUA Metabolic Stone Management Guidelines (2016) regarding primary prevention. Receipt of dietary counseling was categorized by comprehensiveness. Patient quality of life was assessed using the Wisconsin Stone Quality of Life questionnaire (WisQOL). Multivariable linear regression was used to identify predictors of stone-specific health literacy.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eOf the 2,482 participants, 429 (17%) reported prior stone history. Overall accuracy rates ranged from 10\u0026ndash;98%. Stone patients with comprehensive counseling had the highest scores, driven by significantly better knowledge on oxalate-specific questions (p\u0026thinsp;\u0026lt;\u0026thinsp;0.001). Receipt of comprehensive counseling was also associated with lower WisQOL scores across most domains (p\u0026thinsp;\u0026lt;\u0026thinsp;0.001). Multivariable linear regression showed both increased quality of life (p\u0026thinsp;=\u0026thinsp;0.017) and receipt of comprehensive counseling (p\u0026thinsp;=\u0026thinsp;0.032) were independent predictors of increased primary prevention-specific health literacy.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eOverall, correct response rates were poor, especially surrounding dietary oxalates. However, kidney stone formers who received more comprehensive counseling demonstrated both improved stone specific quality of life and health literacy.\u003c/p\u003e","manuscriptTitle":"The association between quality of life, intensity of counseling and health literacy amongst patients with nephrolithiasis","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-04-16 08:57:36","doi":"10.21203/rs.3.rs-6254693/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"964a26b0-ba6b-4251-b88e-8e14cc124eb6","owner":[],"postedDate":"April 16th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-04-21T11:08:42+00:00","versionOfRecord":[],"versionCreatedAt":"2025-04-16 08:57:36","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6254693","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6254693","identity":"rs-6254693","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}