Addressing Health Disparities in Normal Pressure Hydrocephalus (NPH) in Maryland
- Conditions
- Normal Pressure HydrocephalusHakim Syndrome
- Interventions
- Other: patients will receive NPH educationOther: A community health worker will assist PCPOther: primary care physicians (PCPs) will receive professional NPH education
- Registration Number
- NCT06426004
- Lead Sponsor
- Johns Hopkins Bloomberg School of Public Health
- Brief Summary
The study aims to estimate Normal Pressure Hydrocephalus (NPH) prevalence and evaluate health equity gaps in Baltimore and Maryland based on zip codes and race, with a focus on the Black community. Interventions will include educational elements about NPH and three layers targeting patients, Primary Care Providers, and community health workers to enhance care access. Short-term outcomes will measure referrals to specialists, while long-term outcomes will assess healthcare utilization. The study aims to identify and reduce racial disparities in NPH care access, informing intervention strategies for NPH and other surgical areas.
- Detailed Description
This proposal responds to an established need for developing an evidence-based and community-informed approach to address health disparities in specialty surgical clinics where barriers to accessing care are multiplied along each level of the referral pathway. The study will focus on Normal Pressure Hydrocephalus (NPH) related care - a clinical syndrome characterized excess cerebrospinal fluid (CSF) in the brain resulting in symptoms of falls, dementia, and urinary incontinence, that is treated surgically by shunting to remove excess fluid from the brain. This disorder afflicts an estimated about 750,000 Americans, and prevalence increases with age. Limited information regarding racial and socioeconomic contributing factors associated with diagnosis and treatment is available.
Studies show NPH goes underdiagnosed in the USA. In the first part of the study the investigators will estimate NPH prevalence, the health equity gap in Baltimore and greater Maryland (MD), the health equity gap based on Zip Code as a marker of sociodemographic community status, and the health equity gap based on race, looking at the Black community, which comprises over 60% of the Baltimore and 30% in MD population. In the second part of the study, the investigators will develop three layers of interventions that involve educational elements about NPH and evaluate which provides the most benefit including referrals to NPH related care. 1) Patients identified from the first part of the study with possible NPH symptoms will receive intervention 2) Patients, and the Primary Care Providers (PCPs) receive intervention, and 3) patients, and PCP receive intervention and with additional community health workers (CHWs) assisting providers with managing the patient care including referrals, addressing socioeconomic barriers, transportation to receive care.
The success of these interventions will be evaluated by short-term outcomes such as referrals to specialists including neurologists and neurosurgeons every 6 months, and long-term outcomes such as healthcare utilization including screening for shunt surgery within 12 months. This study aims to identify racial disparities in access to NPH care and intervention outcomes will evaluate the effect of different interventions on reducing racial disparities and to help developing a referral system to address the needs of most vulnerable population and Zip Codes in Baltimore and greater MD. Using the results of this study will help to identify gaps, understand the best intervention, and develop intervention strategies not only for NPH but potentially other surgical areas.
Recruitment & Eligibility
- Status
- NOT_YET_RECRUITING
- Sex
- All
- Target Recruitment
- 660
- People over 65 years old who have completed the Annual Wellness Survey (AWV) survey
- have a clinical profile in the Hopkins Epic data sets
- live in Maryland
- People under 65 years old will be excluded if they have not completed the AWV survey
- do not live in Maryland
Community Health Worker (CHW) Inclusion Criteria:
- certified Community Health Workers from Maryland
- completed accredited training by the Maryland Department of Health
Primary Care Physician inclusion criteria:
- must have patients in Johns Hopkins University AWV
Study & Design
- Study Type
- INTERVENTIONAL
- Study Design
- FACTORIAL
- Arm && Interventions
Group Intervention Description Patients and the patient's family patients will receive NPH education All patients and the patient's family will receive NPH-related education. PCPs Training A community health worker will assist PCP Primary Care Provider (PCP) will receive NPH education. Patients and the patient's family primary care physicians (PCPs) will receive professional NPH education All patients and the patient's family will receive NPH-related education. Patients and the patient's family A community health worker will assist PCP All patients and the patient's family will receive NPH-related education. PCPs Training primary care physicians (PCPs) will receive professional NPH education Primary Care Provider (PCP) will receive NPH education. CHWs assist PCPs A community health worker will assist PCP A community health worker (CHW) will assist PCP.
- Primary Outcome Measures
Name Time Method number of referrals 6 months number of referrals for suspicion of NPH to neurologists or neurosurgeons
number of screenings 24 months number of screenings for shunt surgery
- Secondary Outcome Measures
Name Time Method number of NPH's consultations 24 months number of patients who have received a consultation
Trial Locations
- Locations (2)
Johns Hopkins University and Hospital
🇺🇸Baltimore, Maryland, United States
Johns Hopkins University
🇺🇸Baltimore, Maryland, United States