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Evaluating PROMIS® instruments and methods for patient-centered outcomes research: Patient and provider voices in a substance use treatment setting

  • Special Section: PROs in Non-Standard Settings (by invitation only)
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Abstract

Purpose

Our work as a primary research site of the Patient-Reported Outcomes Measurement Information System (PROMIS®), combined with support from the Patient-Centered Outcomes Research Institute, allowed us to evaluate the real-world applicability and acceptability of PROMIS measures in an addiction medicine setting.

Methods

As part of a 3-month prospective observational study, 225 outpatients at a substance abuse treatment clinic completed PROMIS item banks for alcohol use (as well as 15 additional item banks from 8 other PROMIS domains, including emotional distress, sleep, and pain), with assessments at intake, 1-month follow-up, and 3-month follow-up. A subsample of therapists and their patients completed health domain importance ratings and qualitative interviews to elicit feedback regarding the content and format of the patients’ assessment results.

Results

The importance ratings revealed that depression, anxiety, and lack of emotional support were rated highest of the non-alcohol-related domains among both patients and clinicians. General alcohol use was considered most important by both patients and clinicians. Based on their suggestions, changes were made to item response feedback to facilitate comprehension and communication.

Conclusions

Both therapists and patients agreed that their review of the graphical display of scores, as well as individual item responses, helped them to identify areas of greatest concern and was useful for treatment planning. The results of our pilot work demonstrated the value and practicality of incorporating a comprehensive health assessment within a substance abuse treatment setting.

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Acknowledgments

This project was funded by the Patient-Centered Outcomes Research Institute (1IP2PI000189; PI: Paul A. Pilkonis, PhD). We acknowledge the work of our colleagues within the NIDA Clinical Trials Network that collaborated in this work. Dennis Daley, PhD, is the principal investigator of the Tri-State Appalachian node, and clinical data from this node were collected in Pittsburgh, PA, where we are grateful for the help of Trey Ghee, LSW, Dorothy Sandstrom, MS, and Janis McDonald.

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Correspondence to Kelly L. Johnston.

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The authors declare that they have no conflict of interest.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This study was reviewed and approved by the University of Pittsburgh Institutional Review Board.

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Johnston, K.L., Lawrence, S.M., Dodds, N.E. et al. Evaluating PROMIS® instruments and methods for patient-centered outcomes research: Patient and provider voices in a substance use treatment setting. Qual Life Res 25, 615–624 (2016). https://doi.org/10.1007/s11136-015-1131-3

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