Evaluating PROMIS® instruments and methods for patient-centered outcomes research: Patient and provider voices in a substance use treatment setting
- 495 Downloads
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.
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.
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.
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.
KeywordsPatient-reported outcomes Substance abuse Qualitative research Interviews
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.
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflict of interest.
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.
- 1.American Psychiatric Association. (2013). Assessment Measures. In Diagnostic and statistical manual of mental disorders (5th ed., pp. 733–748). Arlington, VA: American Psychiatric Association.Google Scholar
- 2.U.S. Government Accountability Office (GAO). (2015). Comparative effectiveness research: HHS needs to strengthen dissemination and data-capacity-building efforts: GAO-15-280. www.gao.gov.
- 8.Pilkonis, P. A., Choi, S. W., Reise, S. P., Stover, A. M., Riley, W. T., & Cella, D. (2011). Item banks for measuring emotional distress from the patient-reported outcomes measurement information system: Depression, anxiety, anger. Assessment., 18(3), 263–283.PubMedCentralCrossRefPubMedGoogle Scholar
- 9.Broderick, J. E., DeWitt, E. M., Rothrock, N., Crane, P. K., & Forrest, C. B. (2013). Advances in patient reported outcomes: The NIH PROMIS measures. eGEMs (Generating Evidence & Methods to improve patient outcomes), 1(1), Article 12, 1–7.Google Scholar
- 10.Buysse, D., Yu, L., Moul, D. E., Germain, A., Stover, A., Dodds, N. E., et al. (2010). Development and validation of patient-reported outcome measures for sleep disturbance and sleep-related impairments. Sleep, 33(6), 781–792.Google Scholar
- 13.Pilkonis, P. A., Yu, L., Dodds, N. E., Johnston, K. L., Maihoefer, C., & Lawrence, S. M. (2014). Validation of the depression item bank from the Patient-Reported Outcomes Measurement Information System (PROMIS®) in a three-month observational study. Journal of Psychiatric Research, 56, 112–119.PubMedCentralCrossRefPubMedGoogle Scholar
- 14.Reeve, B. B., Hays, R. D., Bjorner, J. B., Cook, K. F., Crane, P. K., Teresi, J. A., et al. (2007). Psychometric evaluation and calibration of health-related quality of life item banks: Plans for the Patient-Reported Outcome Measurement Information System (PROMIS). Medical Care, 45, S22–S31.CrossRefPubMedGoogle Scholar
- 18.Flynn, K. E., Jeffrey, D. D., Keefe, F. J., Porter, L. S., Shelby, R. A., Fawzy, M. R., et al. (2011). Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS). Psycho-Oncology, 20(4), 378–386.PubMedCentralCrossRefPubMedGoogle Scholar
- 19.Forrest, C. B., Bevans, K. B., Tucker, C., Riley, A. W., Ravens-Sieberer, U., Gardner, W., et al. (2012). Commentary: the Patient-Reported Outcome Measurement Information System (PROMIS) for Children and Youth: Application to pediatric psychology. Journal of Pediatric Psychology, 37(6), 614–621.Google Scholar
- 20.Hahn, E. A., DeWalt, D. A., Bode, R. K., Garcia, S. F., DeVellis, R. F., Correia, H., et al. (2014). New English and Spanish social health measures will facilitate evaluating health determinants. Health Psychology, 33(5), 490–499.Google Scholar
- 21.Hays, R. D., Bjorner, J. B., Revicki, R. A., Spritzer, K. L., & Cella, D. (2009). Development of physical and mental health summary scores from the Patient Reported Outcomes Measurement Information System (PROMIS) global items. Quality of Life Research, 18(7), 873–880.PubMedCentralCrossRefPubMedGoogle Scholar
- 23.Patient-Centered Outcomes Research Institute. (2011–2015). from www.pcori.org.
- 24.Pilkonis, P. A., Yu, L., Colditz, J., Dodds, N. E., Johnston, K. L., Maihoefer, C., et al. (2013). Item banks for alcohol use from the Patient-Reported Outcomes Measurement Information System (PROMIS®): use, consequences, and expectancies. Drug and Alcohol Dependence, 130, 167–177.PubMedCentralCrossRefPubMedGoogle Scholar
- 25.DeWalt, D. A., Rothrock, N., Yount, S., Stone, A. A., & on behalf of the PROMIS Cooperative Group. (2007). Evaluation of item candidates: The PROMIS qualitative item review. Medical Care, 45, S12–S21.Google Scholar
- 27.Stinson, F. S., Grant, B. F., Dawson, D. A., Ruan, W. J., Huang, B., & Saha, T. (2005). Comorbidity between DSM-IV alcohol and specific drug use disorders in the United States: results from the National Epidemiologic Survey on Alcohol and Related Conditions. Drug and Alcohol Dependence, 80(1), 105–116.CrossRefPubMedGoogle Scholar
- 33.Substance Abuse and Mental Health Services Administration Treatment Episode Data Set. (2010). Discharges from substance abuse treatment services. BHSIS Series S-67, HHS Publication No. (SMA) 14-4817. Rockville, MD: Substance Abuse and Mental Health Services Administration, 2013.Google Scholar
- 35.Babor, T. F., Higgins-Biddle, J. C., Saunders, J. B., & Monteiro, M. G. (2001). The alcohol use disorders identification test: Guidelines for use in primary care (No. WHO/MSD/MSB/01.6a). World Health Organization.Google Scholar