Message from the PHO President

THANK YOU to all who participated in the 8th Annual PROMIS International Conference in Prague, Czech Republic!

The contributions of so many made this a successful scientific and social event.  Special credit belongs to program chairs Rachel Sisodia, MD and Carole Tucker, PT, PhD, to Judy Baumhauer, MD, MPH our 2022 PHO president, and to Zan Lofgren and Karen Stenmark for taking care to see that everything went smoothly throughout the conference.

A special thank you to our sponsors for their support of the PHO mission: Epic, EMD Serono, Bristol Myers Squibb, BrightOutcome, FACITtrans, and HealthMeasures.

The Board extends its warm appreciation to Lisa Shulman, MD and past president Caroline Terwee, PhD for their leadership and many contributions during their time on the Board. They completed their terms in October.

We are excited to announce that the 9th Annual PROMIS International Conference will be held October 22-24, 2023 in the resort town of Banff in the Canadian Rocky Mountains outside of Calgary. Juhee Cho, PhD from Samsung Medical Center, Seoul, Korea and Eric Makhni, MD, MBA from Henry Ford Health System, Detroit, Michigan will serve as program chairs. The PHO conference will follow the ISOQOL conference in Calgary. See you there!

Dave Cella, PhD, PHO President

Congratulations are in order!

PragueBest Posters by Trainees  

8th Annual PROMIS International Conference
October 23-24, 2022, Prague

Best Psychometric Poster 
Psychometric analysis of PROMIS parent-proxy upper extremity
short form for typically developed children aged 5-7 years
Brittany Garcia, MD
University of Utah, Salt Lake City, Utah USA

Best Clinical Poster 
From numbers to meaningful change: minimal important change by
using PROMIS in fracture patients 
Thymen Houwen, MD
Elisabeth-Tweesteden Ziekenhuis, Tilburg, The Netherlands

2022 Prague Conference Recordings 
Available November 21
Access the plenaries and oral paper sessions on your own time
What Attendees said: The best part of the conference was...

"I gained knowledge in best practices in interpreting PROMIS, particularly in how to utilize PROMIS Global Health for routine practice."

"Oral paper presentation sessions allowed me to learn about several research initiatives all related to a similar theme within a brief period of time."
"The value placed on clinical implementation and taking the theoretical and moving to routine practice."

"My one-on-one talk with a mentor."

"Seeing colleagues in-person to learn of their progress and contributions to making PROMIS a more widely used system to measure patient care."




PHO Board welcomes new members 

Felix Fischer photo
The Board is pleased to welcome two new Board members, who were elected by the membership on e-ballot this fall. 

Felix Fischer, PhD is a quantitative psychologist working at Charité Universitätsmedizin Berlin and leading research and development in the German PROMIS National Center. 

Michelle Langer Michelle Langer, PhD contributes to psychometric research in assessment and patient-reported outcomes (PROs) and currently directs HealthMeasures activities, including PROMIS, within the Northwestern University Center on Outcomes Research and Education.

2022 workshopMissed the PROMIS Training Workshop?
On-demand Recordings available until November 30

Learn the fundamentals of PROMIS and how it is being used in clinical practice and research

Recordings include all sessions, PDFs of presentations, and reference articles

Get 8 hours of valuable training on your own schedule
Learn more
Be generous

Give Back ...By Giving Forward
2022 Year-End Appeal

The PHO is committed to educational outreach on research and
application of PROMIS and supporting early-career professionals with 
conference scholarships.  

Give forward with a donation to the PHO 
Thank you
Mark Your Calendar Now for PHO 2023

October 22-24, 2023
Banff, Canada

9th Annual PROMIS International Conference
Theme: Driving innovation in patient-centered design:
powered by PROMIS
Chairs:  Juhee Cho, PhD and Eric Makni, MD, MBA
Join Us!  
Be part of the PHO's collaborative international communityGlobe
The PHO is a collaborative and supportive international  organization of researchers, clinicians, and other healthcare professionals. PHO members work in universities, health systems, government, the pharmaceutical and technology fields, and business entities that contribute to patient-centered care.

The diversity of our membership is our strength, as evident in the broad spectrum of presentations on PROMIS research and clinical applications around the world.  Make connections. Find collaborators for your research project. 
Congrats to Caroline Terwee, PhD and her Co-Authors

The 2021 Quality of Life Research Outstanding Article of the Year at the ISOQOL Conference in Prague.was awarded to Caroline Terwee, PhD and her co-authors for Minimal important change (MIC): a conceptual clarification and systemic review of MIC estimates of PROMIS measures.
New Publications

Measuring individual true change with PROMIS using IRT-based plausible values

 Ho EH, Verkuilen J, Fischer F. Qual Life Res. 2022 Oct 25. Online ahead of print.

This paper is part of the special section Methodologies for Meaningful Change in Quality of Life Research. In this paper, the authors looked into the assessment of change over time. They used plausible values to account for measurement error and analyze the probability of true within-individual change. The analysis was based on data from a longitudinal, observational study of stable and exacerbated COPD patients (N = 185), providing PROMIS Physical Function and Fatigue T-scores over 3 months. The authors found, that using plausible value imputation, 47.5% of participants in the exacerbated group reported less fatigue, compared with 26.5% of participants in the stable group. Comparison of Short Forms and CATs suggested that CATs have better ability to detect change compared to short forms. Plausible values offer a flexible way to include measurement error in analysis of individuals and on sample level. Assessment of probability of true change can complement existing distribution-based approaches and facilitates interpretation of improvement or decline.

Inclusion of a core patient-reported outcomes battery in adolescent and young adult cancer clinical trials  Roth ME, Parsons SK, Ganz PA, Wagner LI, Hinds PS, Alexander S, Bingen K, Bober SL, Brackett J, Cella D, Henry NL, Indelicato DJ, Johnson RH, Miller TP, Rosenberg SM, Schmitz KH, Thanarajasingam G, Reeve BB, Salsman JM. J Natl Cancer Inst. 2022 Oct 21:djac166. Online ahead of print.

The authors report on a consensus study that aimed to standardizes outcomes for cancer clinical trials (CCTs) in adolescents and young adults (AYAs, aged 15-39 years). Lack of consensus on a standardized approach to assess HRQoL and treatment-related toxicity in AYA CCTs has limited the ability to improve patient outcomes. The National Cancer Institute's Clinical Trials Network AYA PRO Task Force was assembled to reach consensus on a core set of PROs and foster its integration into AYA CCTs. Eight key considerations for selecting the core PRO AYA battery components were identified: relevance to AYAs; importance of constructs across the age continuum; prioritization of validated measures; availability of measures without licensing fees; availability in multiple languages; applicability to different cancer types and treatments; ability to measure different HRQoL domains and toxicities; and minimized burden on patients and sites. The Task Force used a modified Delphi approach to identify key components of the PRO battery. The Patient-Reported Outcomes Measurement Information System (PROMIS) and the PRO Common Terminology Criteria for Adverse Events Measurement System met all criteria and were selected to assess HRQoL and treatment toxicity, respectively. Investigators are rapidly incorporating the recommendations of the Task Force into AYA trials.


Machine Learning Applied to Patient-Reported Outcomes to Classify Physician-Derived Measures of Rheumatoid Arthritis Disease Activity  Curtis JR, Su Y, Black S, Xu S, Langholff W, Bingham CO, Kafka S, Xie F. ACR Open Rheumatol. 2022 Oct 11. Online ahead of print.

Patient-reported outcome (PRO) data have assumed increasing importance in the care of patients with rheumatoid arthritis (RA), yet physician-derived disease activity measures, such as Clinical Disease Activity Index (CDAI), remain the most accepted metrics to assess disease activity. The authors aimed to investigate whether longitudinal PRO data including PROMIS measures might be used as a proxy for the CDAI. Using data from a large pragmatic trial (N=494), the authors evaluated patients with RA initiating golimumab intravenous or infliximab. The classification target was low disease activity (LDA) (CDAI ≤10) at the first visit between months 3 and 12. Data were randomly partitioned into training (80%) and test (20%) data sets. Multiple machine learning (ML) methods were used to classify CDAI disease activity category, conduct feature selection, and assess feature importance. The most important classification features included several PROMIS measures (social participation, pain interference, pain intensity, and physical function), patient global, and baseline CDAI. Among all ML methods, random forests performed best. Overall model accuracy and positive predictive values for all ML methods were approximately 80%. The authors concluded that ML methods coupled with longitudinal PRO data appear useful and can achieve reasonable accuracy in classifying LDA among patients starting a new biologic.
PROMIS Resources
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Executive Director - Lousanne "Zan" Lofgren

Meetings and Events - Karen Stenmark

Membership and Registration - Dianne Gilsenan

Corporate Outreach - Deb Whalen
Why am I receiving this newsletter?
You are receiving this newsletter because you belong to the HealthMeasures (PROMIS, Neuro-QoL, ASCQ-Me, and NIH Toolbox) community. HealthMeasures and the PROMIS Health Organization work as partners to provide education on patient-reported outcomes and to advance measurement science. HealthMeasures operates under a cost-recovery business model with no profit motivation. The PROMIS Health Organization is a 501(c)3 non-profit organization. To discontinue receiving emails from the PROMIS Health Organization, please use the "unsubscribe from this list" link below. 
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PHO e-News, September 2022 

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