Rationale for Choice of Measure

Rationale for Choice of Measures for the FEP database Measurement-based care occurs when information on key health outcomes is routinely collected and actively utilized by service providers and patients. Fully utilized measurement-based care improves outcomes, increases patient engagement, enhances patient-provider communication and evaluates treatment fidelity (1).

Measure selection for the EPI-NC assessment is based on 1) clinical utility and administrative utility, 2) reliability and validity, and 3) feasibility. Of note, measure selection was to a large extent influenced by the expert consensus panel organized by a collaboration between NIMH and the PhenX project. Table 1 provides a summary of rating scales chosen for EPI-NC.

Coordinated specialty care for early psychosis interventions are designed to improve the likelihood and sustainability of recovery from psychosis. For this reason, the questionnaires reflect the process of recover, framed in the biomedical model (reduction in symptoms, improved social and vocational function), the personal model (social connectedness, hope, identity, meaningful life, empowerment), and the impact on others (resource utilization, disability, family). The questionnaires are meant to be clinically meaningful and to be utilized as part of routine clinical practice. Specifically, the patient self-report measures are meant to be reviewed during a patient visit, and the information to guide the intervention in real time.

Feasibility of use is based on time-burden. The following describes the measures completed by the patient, therapist, medical provider, and program administrator:

• Patient Self-Report:
  • The Program Satisfaction questionnaire includes 14 items from the MHSIP (4), evaluating fidelity to a collaborative model of care, staff sensitivity to culture, financial barriers to care, and overall program satisfaction. This questionnaire takes less than a minute to complete. The expectation is that this measure is requested on a quarterly basis.
• Therapists complete a questionnaire containing items from the MHSIP(6) on vocational function, arrests, and housing. This Questionnaire takes about 1 minute to complete. The expectation is that this will be completed on a quarterly basis, and that the clinician and patient review and discuss the responses.
• Data on metabolic risk factors including height, weight, blood pressure, HGA1c (diabetes screen), and lipid panel is collected quarterly.
• The program administrator gives information and services that are provided. This information is collected on a quarterly basis.
• Additional measures are completed at baseline – 2
  • Onset of psychosis (duration of psychosis should be less than 3 years).
  • The program administrator collects information on referrals, including referral source, if the person was admitted to the program, and if not admitted the reason. This information is intended to be used by the program to better target referral agencies.
  • The program administrator collects demographic information. Age is calculated from birthdate and program admission date. Information about years of parental education is collected to estimate socio-economic status (SES). SES is a key mediator of clinical outcomes. On average individuals with lower SES are expected to require more resources and achieve overall lower levels of average patient recovery than individuals with higher SES.
• On discharge the program administrator collects information about date and reason. This information is used to determine discharge rates, reason for discharge (fidelity, program satisfaction).

Table 1: Specific Measures Used by EPI-NC

All of these measures have been thoroughly evaluated and shown to have excellent reliability and validity.