Recommendations and Challenges of the Clinical Services Panel of the PhenX Early Psychosis Working Group

In the past, multiple PhenX work groups have selected common data elements for psychiatric disorders, but the early psychosis clinical services panel was the first with the explicit charge of identifying measures with utility in routine clinical care. The group’s initial work schematic identified a series of potential domains for exploration, including both individual-level and program-level constructs of interest. Unsurprisingly, the availability of measures meeting criteria established by the PhenX steering committee varied substantially across domains, with far more measures available in more classical clinical domains (for instance, psychopathology) than in broader psychosocial domains, such as vocational achievement and social functioning. Listed below are key measurement concepts that are not included in the toolkit.

Research has consistently found meaningful differences between client and clinician ratings or reports for the same constructs (7–10), suggesting that one or both forms of measurement are invalid or less reliable. In fact, client and clinician ratings often capture different latent constructs, reflecting the perspective of the individual completing them and correlating with different variables of interest (11, 12). Some decisions as to which perspective to include hinged solely on availability (e.g., global clinician-rated role functioning versus client perception), whereas in other cases the panel included both (symptoms) or opted for one or the other based on panel consensus.

Many of the dimensions of importance in early psychosis care may have differential validity across the age range of individuals receiving services (13). Some of the selected measures have different versions for adults and children. For example, the Personal Well-Being Scale has different versions for children/adolescents and adults, as does the incarceration measure. In contrast, the Family Functioning Scale was validated for use with individuals ages 12 and older. In addition, specific domains that have been developed in the context of adult services, including standard operationalizations of recovery, may not neatly translate to early intervention service settings, Finally, multiple toolkit measures have not specifically been tested with adolescents.

Clinical services panel and community feedback underscored the extent to which integrating even modest standard measurement practices would be advantageous not only for research but also for local quality improvement activities. These advantages are related to time, training, and the administrative structure needed to track and monitor data input and analyses. Clinicians and frontline staff in the United States, for example, often receive only minimal training in research-oriented clinical measurement (14). Without appropriately trained staff to ensure the integrity of client-reported measures, according to panel members, program clinicians could introduce potential bias, for example, by directly administering (and collecting) client self-report for potentially sensitive constructs, such as medication adherence or shared decision making. Notably, the ability of treating clinicians to administer the measures without intensive training was an important selection criterion. Additional concerns were centered in data quality assurance, including the potential for a high volume of missing data, a common challenge in community-based performance monitoring. The time and infrastructure necessary to complete assessments is often unavailable.

Even when the infrastructure is available, existing data collection/performance monitoring requirements also vary across states. Some programs are mandated to utilize particular metrics or data collection systems—dictated by the state’s central health authority, county or city governments, or other funding entities. An individual CSC program may have little control over these mandates. In such contexts, the addition of PhenX measures might be perceived as adding little value or as overburdening programs.

The clinical utility of the measures hinges on timely reporting about individual patients or clinical programs to the clinical providers, patients, and patients’ family members. Most clinical programs lack the infrastructure to develop reporting methods. A critical area for future research involves development of standard reporting and data collection procedures that will increase the impact of data in clinical decision-making.