Development and Validation of the Perceived Symptom Invalidation Questionnaire (PSIQ)

About.

This project seeks to develop and validate a reliable 3-part patient self-report measure—the Perceived Symptom Invalidation Questionnaire (PSIQ)—to allow for the assessment of patient-perceived symptom invalidation by clinicians within a given healthcare interaction. Symptom invalidation has been observed in an abundance of qualitative work to be associated with a variety of negative psychological sequelae (see Bontempo et al., 2025). These sequelae have important implications for patients’ psychological health. They also have implications for diagnosis and treatment and, consequently, disease burden and overall quality of life. As such, the construction and validation of a reliable self-report measure within a given interaction, particularly a brief one, will allow for the tracking of patient experiences and clinician communication over time in clinical practice and medical education and training, respectively. We envision the PSIQ to be used alongside other well-established patient-reported experience measures (PREMs) such as the Agency for Healthcare Research & Quality (AHRQ) Consumer Assessment of Healthcare Provider and Systems (CAHPS) Clinician & Group Survey. There are five phases of this project, detailed below.

Phase 0: This phase leveraged 830 narratives of patients with endometriosis from a prior mixed-methods online study (Project: Endometriosis Physician and Partner Invalidation). From these narratives, item pools were developed to use for all three parts of the PSIQ—Form A (cognitive/affective experience of invalidation), Form B (clinician verbal invalidation), and Form C (clinician nonresponsiveness). With these item pools, the first iteration of the PSIQ was developed.
Phase I: This phase involved 12 cognitive interviews with patients with endometriosis and long COVID and three patient advocates with significant experiential knowledge of symptom invalidation using the first iteration of the PSIQ. Items were added, modified, and deleted, as needed, yielding a second iteration of the PSIQ.
Phase IIA: This phase involved a first pilot study with a nationally representative sample of the adult U.S. population (N = 1,416) who were asked to report on a memorable interaction with a clinician regarding their symptoms. The second iteration of the PSIQ resulting from Phase I was leveraged. This second PSIQ iteration included an 8-item Form A (the cognitive/affective experience of invalidation), a 21-item Form B (clinician verbal invalidation), and a 16-item Form C (clinician nonresponsiveness). Other existing communication-based measures focused on a given interaction were administered, as well, to validate them in the healthcare context (e.g., hurtful communication, supportive message quality, active-empathic listening) in anticipation of Phase IIB.
Phase IIB: This phase involved a second pilot study with a nationally representative sample of the adult U.S. population (N = 639) who reported having been to a clinician in the past 12 months for a new health problem. The second iteration of the PSIQ resulting from Phase II was leveraged. This second PSIQ iteration included an 8-item Form A (the cognitive/affective experience of invalidation), a 21-item Form B (clinician verbal invalidation), and a 16-item Form C (clinician nonresponsiveness). Other items and measures were administered, as well, to assess convergent validity (e.g., diagnostic error, hurtful communication, satisfaction, supportive message quality, active-empathic listening, patient-centered communication, disenfranchised talk, trust) and discriminant validity (e.g., creativity). We received feedback on the different iterations of the PSIQ via five focus groups with 14 total patients with endometriosis.
Phase III: This phase involves a study with a clinical population--a sample of U.S. adults with diagnosed endometriosis—the patient population from whom the PSIQ items were initially generated (anticipated N = 400). The second iteration of the PSIQ is again being leveraged. The PSIQ Form A was reduced to a 6-item measure, while Form B and Form C were not modified. We are also leveraging most of the same items and measures used in Phase III to assess convergent validity (e.g., diagnostic error, hurtful communication, satisfaction, supportive message quality, active-empathic listening, disenfranchised talk, trust) and discriminant validity (e.g., creativity, openness) in this clinical population.
Phase IV: This phase will involve a series of studies similar to Phase III with various other clinical populations with diagnostically challenging conditions to test the validity of the PSIQ in these other clinical populations. The purpose of Phase IV is to demonstrate that the PSIQ has applicability in other clinical populations in addition to endometriosis (Phase III). These other conditions include:
- Attention deficit/hyperactivity disorder (ADHD) in females
- Chronic Lyme disease
- Dysautonomia
- Ehlers-Danlos syndrome
- Gynecologic cancer
- Long COVID
- Lupus
- Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
- Myasthenia gravis

Meet the Team!

Dr. Allyson Bontempo
Faculty Affiliate
Rutgers University

Dr. Andy Peterson
Distinguished Professor
Rutgers University

Dr. Lisa Mikesell
Associate Professor
Rutgers University

Rashmi Patel
MPH Student
Rutgers University

Currently recruiting for Phase III

If you are a health professional and see patients with endometriosis and are interested in helping to recruit patients for this study, please email me at: [email protected]

Funding Acknowledgements.

The contents are those of the project team and do not necessarily represent the official views of, nor an endorsement by, the Center for Prevention Science nor HRSA, HHS, or the U.S. government.