Content and readability of patient educational materials about neuromodulation for childhood movement disorders

Area of Science:

• Neuromodulation
• Pediatric Neurotherapeutics
• Medical Education

Background:

• Online patient educational materials (PEMs) are vital for informing patients about complex neurosurgical procedures.
• Deep brain stimulation (DBS) and intrathecal baclofen (ITB) are advanced treatments for pediatric neurological conditions.
• Assessing the quality and accessibility of current PEMs is essential for patient understanding and informed consent.

Purpose of the Study:

• To evaluate the content comprehensiveness and readability of online PEMs for pediatric DBS and ITB.
• To identify gaps in information provided to patients undergoing these neuromodulation therapies.

Main Methods:

• Content analysis of 109 PEMs from leading children's hospitals and device manufacturers.
• Evaluation of content using a predefined framework.
• Readability assessment using the Simple Measure of Gobbledygook (SMOG) index.

Main Results:

• Most PEMs (71%) originated in the US; ITB materials were more likely to include pediatric-specific information (73%) than DBS (22%).
• Benefits were frequently detailed (DBS 92%, ITB 89%), while risks were less consistently covered (DBS 49%, ITB 78%).
• Readability scores indicated a median grade level of 13.2 for DBS and 11.8 for ITB, suggesting challenges for general patient comprehension.

Conclusions:

• Existing PEMs for pediatric DBS and ITB often lack crucial details and exhibit suboptimal readability.
• There is a significant need for more holistic, accessible content that provides a balanced view of risks and benefits.
• Improving the quality of neuromodulation PEMs is critical for enhancing patient education and shared decision-making.