Psychosis Symptom Rating Scale

Description of the Project

The manifestation of psychosis in deaf versus hearing individuals is known to differ (Evans & Elliott, 1981). Since psychosis often manifests in hearing people through disruption of sensory and linguistic functioning, it follows that the vastly different sensory and language experiences and characteristics of deaf versus. hearing people will lead to complications and differences in the detection and measurement of psychotic symptomatology between these two populations. Additionally complicating this issue is the valid presumption that virtually all healthy hearing people are conversant or better in their preferred language and, therefore, that disruptions of language fluency are ipso facto evidence of neurological or psychiatric impairment. The same presumption is not valid for the deaf population, since language dysfluency frequently results from insufficient exposure to accessible language (oral or sign). Accordingly, there is a significant proportion of the deaf population that manifests language dysfluency but may have no underlying neurologic or psychiatric pathology.

How then is language dysfluency in deaf individuals that is caused by neurologic or psychiatric illness to be differentiated from language dysfluency that has social/experiential origins? The answer is (1) it's extremely difficult and (2) to the degree that it is possible, one must be fluent in sign language, extremely familiar with the ways in which neuropathology and psychosis manifest in deaf sign language users as well as in the hearing population, and third, extremely familiar with the LLP ("minimally language skilled") deaf population that does not appear to have mental illness, and their linguistic characteristics specifically.

The valid detection and assessment of the severity of psychosis in deaf and deafblind individuals is a serious medical and societal problem and a gross example of inequity in mental health service benefits between these consumers and hearing consumers. Mental health service programs evaluating and treating deaf patients suspected of being psychotic may delay treatment or render inappropriate treatment as this struggle to properly diagnose plays itself out. Numerous cases of misdiagnosis of dysfluent (but otherwise healthy) deaf individuals as psychotic, followed by forced hospitalization, medication, etc., have been documented in ADA lawsuits and elsewhere. Deaf individuals who are psychotic but whose illnesses are overlooked by clinicians (and interpreters) who are unable to identify it, and thus attribute their apparent symptoms to deafness, LLP, poor interpreting or other causes, is perhaps an even more common problem. And in United States v. Joseph Mesa, the trail stemming from the two murders that took place at Gallaudet University in 2000-2001, the case hinged on the defense's assertion that Mr. Mesa (who is deaf) experienced psychotic symptomatology that supported a not guilty by reason of insanity (NGRI) plea whereas the prosecution asserted that Mr. Mesa's claims were not consistent with psychotic illness at all, much less a valid NGRI defense. Dr. Pollard, examiner and expert witness in the case, was left trying to explain the above complications regarding the manifestation and assessment of psychosis in deaf versus hearing people, but without the advantage of a valid tool for making such an assessment of Mr. Mesa (other than his clinical interview skills and experience), and simultaneously refuting the use of invalid psychological tests that the defense put forth as supporting Mr. Mesa's claimed psychosis. (It is well known that the use of psychological tests designed and normed for use with hearing people typically make deaf subjects appear more disordered than they actually are. (Brauer, et al, 1999; Leigh & Pollard, in press; Rosen, Vernon & Andrews, 1990) references). One juror later remarked to the press, "If this case does anything, I hope it does provide the initiative for more research to be done in the areas of psychological testing for deaf people."

The goal of this proposed study is to develop, pilot, and refine a rating scale that is not only reliable and valid in documenting the nature and measuring the severity of psychotic symptomatology in deaf individuals, but also robust in light of the prevalence of psychotic and non-psychotic yet dysfluent deaf individuals in the clinical population.

The scale will not be a "test," where the deaf subject fills out a form or responds to written or signed questions or items. Limitations in English (and sign) fluency and other sources of bias in such methods have long been known to limit such test utility with the deaf population (Brauer, et al., 1999). Nor will this be a translation of an existing test or tool, as translations typically are useful only for deaf subjects with ASL fluency which is commonly lacking in the deaf clinical population. In addition, evidence of translational equivalency between an English-based test and an ASL version does not necessarily connote that the results (e.g., scores) of the test will be interpretable in the same way as the test scores of hearing persons are.

This design of this scale will be similar to that of the Hare Psychopathy Checklist Revised (PCL-R; Hare, 1991), a rating scale where the psychological construct of interest (in this case, psychopathy rather than psychosis) is measured through evidence gathered from interviews and records. Hare reviewed the psychological literature pertaining the construct of psychopathy, then determined consensus opinions regarding the most prominent characteristics of the disorder. Through a structured methodology detailed in the manual and in PCL-R training videotapes, clinicians conduct interviews with the subject and review their behavioral and treatment (and legal) records for evidence of the presence or absence of the various characteristics in question. Research on pilot versions of the PCL determined which construct characteristics or evidentiary methods and scoring rules needed to be modified. The current version of the scale includes 20 characteristics associated with the construct of psychopathy (e.g., glibness, parasitic lifestyle, early behavioral problems, failure to accept responsibility for own actions, etc.), some of which may be more strongly evidenced through the interview or more strongly evidence in records. After conducting the interview and records review, the clinician rates the presence or absence of each of the 20 characteristics on a scale from 0 (absent) to 2 (clearly present), according to the objective criteria described in the manual. (A score of 1 signifies partial or emerging evidence of the characteristic in question.) Published norms for the PCL-R exist for male prison inmate populations and male forensic patient populations. Additional normative samples and evidence can be found in the voluminous and growing literature regarding this popular tool. Based on these norms and the accumulated research, a trained clinician can render evidence-based opinions on the presence, absence, and severity of psychopathy in a given individual. Due to its careful psychometric construction and evidence-based utility, the PCL-R has become the gold standard of assessment of the construct of psychopathy, replacing less reliable assessment methods based on clinicians' opinions or other, more broadly focused psychological tests such as the MMPI (Butcher, et al, 1989). Additionally, its amenability to improvement and extended utility through further research (e.g., the development of norms for more specific subject populations) is a valuable asset.

The field of deafness and mental health would benefit enormously from the development of a similar tool for the assessment of psychosis in deaf, hard-of-hearing, and deafblind individuals. A rating scale modeled after the PCL-R, where trained clinicians make evidence-based clinical judgments after conducting interviews and reviewing subject's psychiatric, psychosocial, and educational records, avoids many of the pitfalls and problems associated with subject-completed tests and translated tests. Subjects will be able to understand and respond to interview questions in their preferred communication modality. Evidence of language dysfluency from psychiatric versus social/experiential origins may be differentiated through careful attention to defining scoring criteria in light of those differences that are known by expert clinicians (e.g., that "clang associations," a psychotic language phenomenon, can occur in ASL when phrases are formed on the basis of similar handshapes versus logic, and that this only occurs in the presence of psychosis, or that evidence of significant deterioration in sign fluency, which can sometimes be documented through a review of records, suggests psychiatric rather than social/experiential based dysfluency). The proposed development of a psychosis symptom rating scale will fill a major gap in the research knowledge base and clinical armamentum in our field.

The first phase of this study will involve the gathering of research evidence and, more importantly, expert clinical opinions regarding the characteristics of psychosis in the deaf and deafblind patient population. Very little published research exists on the specific topic of the manifestation of psychosis in this population (Evans & Elliott, 1981; Pollard, 1998a; Thacker, 1994). Instead, experts with specific interest in this topic and experience in serving this population likely will be a more valuable source of data in proposing and defining the essential characteristics (linguistic, cognitive, psychiatric, behavioral, and social) that appear to characterize psychosis in this population. As a leading figure in this field, and founder and chair of the American Psychological Association's Special Interest Section on Deafness, Dr. Pollard can engage an extensive network of colleagues in the U.S., Europe, and Australia to contribute to this effort. In year 1, an email listserve will be established for the purpose of launching this collaborative discussion which will be furthered through in-person contacts and presentations at professional meetings where possible. By year 2, a list of the characteristics suggestive of psychosis in this population will have been compiled.

In years 2 and 3, the scale will be developed and put through a number of pilot phase trials, not only in Rochester but several of the collaborative sites that have expressed interest in this project to date. Definitions and assessment methods for identifying presumed psychosis characteristics will be tested through applications in patient interviews and record reviews in all participating sites. Feedback on these trial applications will be shared through the project listserve and the aforementioned web-based data and reporting interface. Continued input from experts in the deafness and mental health field and colleagues from URMC in the broader field of psychosis, as well as consumers and families, will be solicited. By the end of project year 3, through these repeated steps of trail, feedback, adjustment, and re-trail, the scale's structure and methodology will be refined to a point where it is ready for a more experimentally-based clinical trails in year 4.

In year 4, the prototype scale will be employed in clinical trials in Rochester and two collaborating sites. Samples of deaf patients which include: (1) individuals who the treatment team unanimously agrees manifest psychosis, (2) individuals who the treatment team unanimously agrees do not manifest psychosis, and (3) individuals who the treatment team disagree or are unsure about the manifestation of psychosis will comprise the study population. The prototype psychosis symptom rating scale will be administered and scored by a trained, sign-fluent clinician from the DWC who is unaware of the opinions of the treatment team. The results of the scale administration will be compared to the opinions of the treatment team. Optimal cutoff scores will be determined which differentiate the subjects who were unanimously judged to manifest psychosis from those who were unanimously judged to be free from psychosis. Other refinements will be made in the scale's composition, definitions, and scoring criteria, based on input from the clinicians, consumers, family members, and other experts involved in the project.

In year 5, a second round of clinical trials will take place, in Rochester and one new remote location, as well as in the same two remote locations involved in the previous round. As described above, trained clinicians who are unaware of the treatment team's opinions regarding the consumers' manifestations of psychosis will administer and score the rating scale. At this juncture, inter-rater reliability calculations also will be possible by having a second trained individual duplicate the interviews, record reviews, and scale ratings. Again, optimal cutoff scores will be determined which differentiate the subjects who were unanimously judged by the treatment team to manifest psychosis from those who were unanimously judged to be free from psychosis. Additional input from the examiners, treatment team, consumers, and families will be used to make final refinements in the scale. By the end of the project period, the scale will be produced for dissemination, including the preparation of a comprehensive manual detailing its developmental history, research findings to date, instructions for administration, and suggestions for future research.

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