09.23 Evaluating Health Literacy Resources for Secondary Hyperparathyroidism Due to End-Stage Renal Disease

D. Tabla Cendra1, K. HoSang1, T. P. Gao1, L. E. Kuo1  1Temple University, Surgery, Philadelpha, PA, USA

Introduction:  Parathyroidectomy is recommended for treating secondary hyperparathyroidism (SHPT) due to end-stage renal disease (ESRD), but patients are under-referred for surgery. Accurate online health information is vital to improve patient health literacy ultimately enhancing outcomes. Health information has been suggested to be provided at the 6th-grade level for accessibility purposes. Although numerous clinical practice guidelines have been established for the surgical management of SHPT due to ESRD, the quality and readability of the information found online are uncertain. This study evaluated the available online resources for SHPT due to ESRD based on information quality and readability to elucidate potential areas of improvement.  

Methods:  Google searches using the terms and questions “parathyroidectomy for secondary hyperparathyroidism,” “parathyroidectomy kidney/renal failure,” “parathyroidectomy dialysis patients,” “should I have surgery for hyperparathyroidism due to kidney failure?” and “do I need surgery for hyperparathyroidism due to kidney failure if I do not have symptoms?” were conducted in July 2023. A total of 119 websites were queried. Exclusion criteria included physician-oriented publications (research articles published in medical journals) and sites requiring subscriptions to be accessed. Sites were categorized according to their source (foundation-advocacy, academic, hospital-affiliated, commercial, other) and origin (US, foreign). Two independent reviewers determined information quality using JAMA criteria (scale 0-4). Scores from both reviewers were averaged. Inter-rater reliability was evaluated using Cohen’s kappa. Readability for each website was determined using the Flesch Kincaid Reading Ease (FKRE), Flesch Kincaid Grade Level (FKGL), and Simple Measure of Gobbledygook (SMOG) frameworks. The median score in each framework was calculated and the corresponding difficulty or grade level determined.

Results: After exclusion of 86 websites, a total of 36 sites were studied. Most sites (31, 86.1%) originated from a US information source, and were predominantly from hospital-associated and foundation/advocacy sources (63.9% and 30.6%, respectively). The mean JAMA score of all websites analyzed was 1.319 ± 1.395 (standard deviation). The degree of inter?rater reliability was substantial (p<.001). The median IQR for each readability framework and the corresponding difficulty/grade level are shown in Table 1.  

Conclusion: Available online resources dedicated to educating patients on SHPT are outnumbered by physician-aimed websites. Patient-oriented websites are commonly at a reading grade or difficulty level higher than recommended. The information quality of these websites is low. Efforts must be made to improve the accessibility and quality of information for all patient populations.