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PHO members are early-career and experienced researchers, clinicians, and others from around the world using PROMIS to promote the voice of the patient in clinical care, research, and quality improvement.

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SAVE The Date!

22-23 October 2026

The 12th Annual PROMIS
International Conference

Prague, Czechia

Click to Learn about Abstracts and Scholarships

Thanks for making the conference a success!

The 11th Annual
PROMIS International Conference

Leveraging the Patient Voice from
Clinical Decision-making to Policy:
The Value of PROMIS


October 26-28, 2025
Milwaukee, Wisconsin   

Thank you to all who submitted abstracts and scholarship applications

Abstract Submissions - CLOSED 
Scholarship Applications - CLOSED 

Join Us in Beautiful Prague!

The 12th Annual
PROMIS International Conference

22-23 October 2026
Early Registration opens late May

Learn. Share. Engage.

Plenaries, Oral Papers, Poster Hall, Roundtables, Welcome Reception, Mentoring, and more.
Networking - Networking.

Do you know about PHO's free webinars?

Presented March 24
Integrating PROMIS in Arthritis Care and Research
by
Clifton Bingham,  MD
Professor of Medicine, Division of Rheumatology
Johns Hopkins University, Baltimore, MD USA

Thanks for making
the 2025 Conference a Success!

The 11th Annual PROMIS International Conference
Leveraging the Patient Voice from Clinical
Decision-making to Policy: The Value of PROMIS

October 26-28, 2025 - Milwaukee USA


Get published!
Submit your paper to
the Official Journal of the PROMIS Health Organization
Author fees waived through December 31, 2026

The journal considers original educational papers, current concepts, study protocols, research manuscripts, (systematic) reviews, commentaries on articles, and letters to the editor. The journal also publishes editorials, special issues, and conference abstracts.

Abstracts of the 2025 PROMIS International Conference are published in APRO.

New Publications

Allen, K. D., France, C., Woolson, S., Coffman, C., Hoenig, H., Miao, J. W., & White-Clark, C. (2026). Implementation of a Stepped Exercise Program for Veterans with Knee Osteoarthritis. Osteoarthritis and Cartilage, 34, S388-S389.

Researchers implemented a stepped exercise program (STEP-KOA) for U.S. Veterans with knee osteoarthritis in the Department of Veterans Affairs Healthcare System, with the goal of reaching rural Veterans who experience poorer osteoarthritis and limited access to care. Given that knee osteoarthritis is a leading cause of pain and reduced function among Veterans, and that prior randomized evidence supported the efficacy of STEP-KOA, data regarding real-world implementation are essential to scaling-up. Veterans enrolled at four VA facilities (n=116, about half rural) progressed through up to three steps of care that included home-based exercise supported by coach calls, bi-weekly telephone or video coaching, and telehealth or in-person physical therapy that was stepped up if participants did not achieve clinically meaningful improvement in function. The four-item PROMIS Physical Function, and Pain Interference (also 4 items) scales were administered at baseline and 2, 4, and 6 months. Mean Physical Function T-scores rose from 37.0 to 39.2 and mean Pain Interference T-scores fell from 62.1 to 57.5, with 59–68% of patients reporting better daily function over follow-up. Because PROMIS measures are anchored to general-population norms, Veterans and healthcare professionals can interpret change-scores in relation to expected population values, providing additional decision support for referrals, escalations, and broader VA implementation.

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Sandmann, A. C. A., Kempeneers, M. A., Slot, K. M., Van Den Berg, R., Vandertop, W. P., Verbaan, D., & Coutinho, J. M. (2026). Clinical course and patient-reported outcomes in conservatively managed spinal cavernous malformations. Journal of Neurology, 2026 Mar 8;273(3):188. doi:10.1007/s00415-026-13715-2

Sandmann et al. report on their single-center cohort study of adult patients living with spinal cavernous malformations (SCMs), rare vascular lesions of the spinal cord that can cause sudden hemorrhage and progressive motor or sensory deficits. Given that the published literature emphasizes surgical outcomes and rarely captures the patient experience of watchful waiting, evidence on the natural course and quality of life under conservative management is needed to support patient counseling and shared decision-making. Twenty-eight patients diagnosed between 1995 and 2024 were followed for a median time of 6.4 years; clinical data were extracted from medical records, and 26 (93%) completed structured cross-sectional follow-up including the modified Rankin Scale, EQ-5D-5L, and PROMIS-29. Ten patients (36%) experienced symptomatic hemorrhage or new focal neurological deficits, while only 5 (18%) ultimately underwent surgery, and 57% remained functionally independent at last follow-up. Compared with the Dutch general population, patients reported lower utility-weighted EQ index scores (0.63 vs 0.87) and worse PROMIS-29 anxiety/fear, depression/sadness, and fatigue scores.

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Miller, M. C., Peugh, J. L., Epstein, J. N., Tamm, L., & Becker, S. P. (2026). Multi-informant Examination of Cognitive Disengagement Syndrome in Relation to Sleep and Circadian Preference in Early Adolescents. Child Psychiatry & Human Development, 2026 Apr 7. doi:110.1007/s10578-026-01990-z

Miller and colleagues report on a multi-informant cross-sectional study examining whether cognitive disengagement syndrome (CDS) is uniquely related to sleep and circadian functioning in early adolescents, above and beyond ADHD and depression. CDS presents as a set of symptoms involving excessive daydreaming, mental confusion, hypoactivity, and lethargy that frequently co-occurs with attention-deficit/hyperactivity disorder (ADHD). Young people with ADHD often experience sleep disruption but that prior CDS–sleep studies typically rely on single-informant designs, ADHD-only samples, or measures that overlap with ADHD inattention. In a sample of 341 young people aged 10 to 12, their caregivers, and teachers completed measures of CDS, ADHD, and depression; adolescents and caregivers also completed PROMIS Sleep Disturbance and Sleep-Related Impairment scales, and adolescents reported circadian preference. Across regression models with different informants, CDS symptoms were consistently associated with greater sleep disturbance and sleep-related impairment beyond ADHD and depressive symptoms, while only self-reported ADHD inattentive symptoms predicted greater eveningness preference.

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Mercadal-Orfila, G., Serrano, J. I., Mijares, T., Vidal, L., Curran, A., & Herrera-Pérez, S. (2026). Digital Monitoring of Pre-Exposure Prophylaxis Users Through Electronic Patient-Reported Outcome Measures and Electronic Patient-Reported Experience Measures: Multicenter Prospective Study on Feasibility, Safety, and Predictive Modeling of Digital Engagement. Journal of Medical Internet Research, 2026 Apr 13:28:e87592. doi:10.2196/87592.

The authors of this study report on a prospective multicenter observational study of HIV-negative adults at high risk of infection who used pre-exposure prophylaxis (PrEP) who were monitored using the Naveta-Phemium digital platform, which integrates electronic patient-reported outcome and experience measures (ePROMs/ePREMs). Given that the long-term value of PrEP depends on tolerability, sustained quality of life, and meaningful patient engagement with digital follow-up, evaluation of both clinical safety and engagement are needed to inform the delivery of real-world telemedicine. Eighty-one participants (mean PrEP duration 689 days) provided approximately 12,300 questionnaire-based observations using the Hospital Anxiety and Depression Scale, the PROMIS-29 Profile, the Treatment Satisfaction Questionnaire for Medication, and a person-centered coordinated care experience measure; engagement was modeled using machine learning and explained using Shapley Additive Explanations. Results suggest that PrEP was well tolerated with no moderate or severe adverse events, renal function remained stable, and psychological well-being and PROMIS-29 health-related quality-of-life scores were near general-population norms throughout follow-up while treatment and platform satisfaction were high and consistent. Random forest models predicted questionnaire-level engagement with an area under the curve of approximately 0.82, identifying lifestyle-related variables as the most influential predictors.

PROMIS®, Patient-Reported Outcomes Measurement InformationSystem®, and PROMIS logo are registered trademarks of the U.S. Department of Health and Human Services (HHS).

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