SCOUT-H Information Booklet

Under Pressure Uncovering the cognitive and mental impact of Hydrocephalus

WITH

Mark Luciano, M.D., Ph.D The Berry-Brem Professor in Neurosurgery Director, the Hydrocephalus and Cerebral Fluid Center

&

Matthew Peters, M.D. Associate Professor of Psychiatry & Behavioral Sciences Director, Clinical Services, Psychiatry, JH Bayview Medical Center

SCOUT-H Screening for Cognitive and Psychiatric OUTcomes in Hydrocephalus The goal of the SCOUT-H study is to develop a comprehensive screening protocol with referral pathways for the early identification and treatment of the cognitive and psychiatric symptoms of Hydrocephalus.

PHASE 1: COMPLETE Establishing Prevalence at Hopkins

Examine pre- and post-operative records of Hydrocephalus patients at Hopkins Search for patterns that may indicate neuropsychiatric complications Why?

This data helps determine the frequency and severity of these symptoms and also identifies any gaps in the current screening process

PHASE 2: IN PROGRESS Screening

Neurosurgery & neuropsychiatry create a new screening process based off of Phase 1 findings Screening protocol may include self-report tools, observations from caregivers, and formalized testing Why?

This will help patients understand what, if any, mood or cognitive symptoms they are experiencing as a result of this condition These tests provide a baseline for doctors to refer to in the future

PHASE 3 Treatment

Patients identified in Phase 2 in need of cognitive or mental care are offered three referral pathways: The Acquired Brain Clinic The Memory Center The Neurorehabilitation program Why?

These three referral pathways streamline the treatment process so patients’ symptoms are addressed in a timely manner

Where We Started Before this study, little to no research had examined the cognitive and psychiatric effects of pressure on the brain

A systematic review of 1688 articles found only 8 studies mentioning the psychiatric impact of pressure on the brain

A systematic review of 1688 articles found only 9 studies mentioning the cognitive impact of pressure on the brain

What We’ve Found HYDROCEPHALUS/IIH & MENTAL HEALTH 829 (31%) of the 2,668 patients seen at the Johns Hopkins Hydrocephalus and Cerebral Fluid Center (JHHCFC) reported a psychiatric diagnosis (2013-now) All types of Hydrocephalus are linked with psychiatric symptoms such as behavior change, irritability, depression, anxiety, and psychosis JHHCFC patients who reported psychiatric symptoms were less likely to be married and/or full-time employed Patients who develop psychiatric symptoms due to increased intracranial pressure often report more severe headaches and visual disturbances Depression may hinder treatment adherence and exacerbate hydrocephalus symptoms and mental health issues, creating a vicious cycle for the patient Hydrocephalus diagnosed at birth is linked with behavioral challenges in school as well as depression and anxiety Patients who have psychiatric symptoms report poorer quality of life compared to patients without psychiatric symptoms

HYDROCEPHALUS/IIH & COGNITION Normal Pressure Hydrocephalus (NPH) can cause short-term memory loss similar to Alzheimer’s, executive dysfunction, and impaired vision Pressure on the brain is linked to cognitive deficits in processing speed, working memory, attention span, set-shifting, and confrontation naming Patients who show signs of cognitive decline are struggling to receive care due to the extensive wait times for neurorehabilitation centers Hydrocephalus at birth is associated with genetic syndromes and lower IQ A systematic literature review uncovered a link between increased pressure on the brain and sleep-related disorders, like insomnia or obstructive sleep apnea

The Protocol

Any new patients of Dr. Luciano seen for Hydrocephalus or Idiopathic Intracranial Hypertension (IIH) are screened to collect key measures of cognitive performance, depression, and anxiety regardless of their surgical plan. The results of these various tests provide a baseline for doctors to refer to as the condition progresses.

What they look for: PERFORMANCE VALIDITY

VISUOSPATIAL ATTENTION

DEPRESSION SYMPTOMS

PREMORBID INTELLECT

AUDITORY WORKING MEMORY

ANXIETY SYMPTOMS

FINE MOTOR DEXTERITY

EXECUTIVE FUNCTIONING

RECALL OF WORDS AND STORIES

GRAPHOMOTOR AND ORAL DECODING

VERBAL FLUENCY

VERBAL MEMORY

PROCESSING SPEED

CONFRONTATION NAMING

WORKING & LOGICAL MEMORY

GRAPHOMOTOR SPEEDED SEQUENCING

VISUOSPATIAL PROCESSING

EXECUTIVE PLANNING

SET SHIFTING

AUDITORY-VERBAL ATTENTION

VERBAL LEARNING

Looking Ahead The ultimate goal of SCOUT-H is to implement a proactive screening protocol with structured referral pathways for cognitive and psychiatric care at Johns Hopkins to create a scalable and replicable model for medical institutions worldwide.

We are grateful for the support this project has garnered thus far, which has made Phase I of SCOUT-H possible. If you’d like to learn more about opportunities to contribute to this work, you can contact Anna Dugan at adugan3@jh.edu and Amy Bortner at aborter1@jh.edu.

Further information about the project and our fundraising goals can be found by scanning the QR code above.