Evaluating Health Literacy Resources for Secondary Hyperparathyroidism in End-Stage Kidney Disease

Parathyroidectomy is recommended for severe secondary hyperparathyroidism (SHPT) due to end-stage kidney disease (ESKD), but surgery is underutilized. High quality and accessible online health information, recommended to be at a 6th-grade reading level, is vital to improve patient health literacy. This study evaluated available online resources for SHPT from ESKD based on information quality and readability.

Three search engines were queried using the terms "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?" Websites were categorized by source and origin. Two independent reviewers determined information quality using JAMA (0-4) and DISCERN (1-5) frameworks, and scores were averaged. Cohen's kappa evaluated inter-rater reliability. Readability was determined using the Flesch Kincaid Reading Ease, Flesch Kincaid Grade Level, and Simple Measure of Gobbledygook tools. Median readability scores were calculated, and corresponding grade level determined. Websites with reading difficulties >6th grade level were calculated.

Thirty one (86.1%) websites originated from the U.S., with most from hospital-associated (63.9%) and foundation/advocacy sources (30.6%). The mean JAMA and DISCERN scores for all websites were 1.3 ± 1.4 and 2.6 ± 0.7, respectively. Readability scores ranged from grade level 5-college level, and most websites scored above the recommended 6th grade level.

Patient-oriented websites tailoring SHPT from ESKD are at a reading level higher than recommended, and the quality of information is low. Efforts must be made to improve the accessibility and quality of information for all patients.