Methods for Prioritizing Surrogate Desired Health Outcomes for Patients

Very little research has been done to know which health outcomes are most important to a surrogate (i.e., caregiver) who is responsible for the patient’s healthcare decisions. Youth with developmental disabilities (e.g., autism) and a co-existing psychiatric illness is one such patient population for which we know very little. These youth experience severe aggressive behavior that can be devastating to many aspects of their families’ and their own lives. The medications to manage aggression have serious health risks, and so surrogates are faced with difficult decisions about how to best care for these youth. Research is needed to identify the outcomes of treatment that are most important to surrogates so they can select the best treatment option for their patient.

The study is funded through a contract from the Patient Centered Outcomes Research Institute (PCORI). The objectives are to 1) learn what outcomes are important to surrogate caregivers in managing aggression; 2) identify how surrogate caregivers prioritize outcomes, and 3) use this information to help surrogate caregivers choose the best treatment option for the patient in their care. If you would like to learn more about this study (see study flyer) or contact send an email to


CHIPRA Quality Demonstration Grant

This research is a collaboration with the Maryland Mental Hygiene Administration and colleagues at the University Of Maryland School Of Social Work.  The focus of this research is to evaluate care management entities, as a behavioral health model for high risk kids, with respect to the impact this care delivery system has on psychotropic medication use.  The specific focus of this research is to investigate whether youth served by care management entities have lower use of psychotropic medication, less polypharmacy, and more continuity of mental health services as compared with youth who are not served by the care management entity.  Another aspect of this research involved surveying state Medicaid agencies in all 50 states and the District of Columbia to assess the programs that have been implemented to monitor psychotropic use among children and adolescents.


Methods for Selecting Comparator Interventions for Caregivers of Adults with Alzheimer’s Disease or Related Dementia

The current healthcare system is ill equipped with regard to access, quality, and outcomes for the most vulnerable patients in our healthcare system, such as e elderly with cognitive impairments.  These patients rely on surrogates for all healthcare decision, and so it follows that a patient-centered approach to improve the system requires input from surrogates. However, patient-centered outcomes research (PCOR) has not focused on surrogate decision-making.  Thus, PCOR based on the patients themselves may not generalize when a surrogate is making decisions for the patient.  The goal of this research is to enhance the PATIENTS infrastructure by developing a paradigm, specific to surrogates, for selecting among comparator interventions.  Acknowledging that more than one person can be in the role of surrogate decision-maker, i.e., spouse or children of a person with Alzheimer’s disease or a related dementia, in this proposal surrogate refers to the person with legal authority to make healthcare decisions for the individual in their care.

The study is funded by the Agency for Healthcare Research and Quality (AHRQ) to engage adult caregivers to learn what types of treatments and outcomes are most important to you in making health care decisions for the person in their care.  Eligible participants are an adult who
1.Is the primary caregiver (or surrogate) of a person diagnosed with Alzheimer’s Disease or a Related Dementia (ADRD) and 2.Has legal authority over health care decisions for this person. If you would like to learn more about this study (see study brochure) or contact send an email to


Family Voice Study

As a co-Investigator on this study funded by the Patient Centered Outcomes Research Institute (PCORI), this study engages family navigators in helping caregivers access mental health services for their child.  A goal of this work is to develop a family navigator training manual that can be disseminated throughout the state and nationally.