The following references and resources may be useful in the design and conduct of research studies that include patient-reported outcome (PRO) measures or caregiver assessments:
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| Reeve BB, Wyrwich KW, Wu AW, et al. on behalf of the International Society for Quality of Life Research (ISOQOL). ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research. Quality of Life Research. 2013 Oct; 22(8):1889-905. doi: 10.1007/s11136-012-0344-y PMID: 23288613 |
| Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMIN). http://www.cosmin.nl/index.php |
| NIH Toolbox for Neurologic and Behavioral Research http://www.nihtoolbox.org/Pages/default.aspx |
| NIH Patient-Reported Outcomes Measurement Information System (PROMIS) http://www.nihpromis.org/ |
| NCI Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) http://healthcaredelivery.cancer.gov/pro-ctcae/ |
| Basch E, Abernethy AP, Mullins CD, Reeve BB, Smith ML, Coons SJ, Sloan J, Wenzel K, Chauhan C, Eppard W, Frank ES, Lipscomb J, Raymond SA, Spencer M, Tunis S. Recommendations for incorporating patient-reported outcomes into clinical comparative effectiveness research in adult oncology. J Clin Oncol. 2012 Dec 1;30(34):4249-55. doi: 10.1200/JCO.2012.42.5967. PMID: 23071244 |
| Reeve BB, Mitchell SA, Dueck AC, Basch E, Cella D, Reilly CM, Minasian L, Denicoff AM, O’Mara AM, Fisch MJ, Chauhan C, Aaronson NK, Coens C, Watkins-Bruner D. Recommended patient-reported core set of symptoms to measure in adult cancer treatment trials. Journal of the National Cancer Institute. 2014; 106(7):1-8. doi: 10.1093/jnci/dju129. PMID: 25006191 |
| Huntley AL, Johnson R, Purdy S, Valderas JM, Salisbury C. Measures of multimorbidity and morbidity burden for use in primary care and community settings: a systematic review and guide. Ann Fam Med. 2012 Mar-Apr;10(2):134-41. doi: 10.1370/afm.1363. PMID: 22412005 |
| Uijen AA, Heinst CW, Schellevis FG, van den Bosch WJ, van de Laar FA, Terwee CB, Schers HJ. Measurement properties of questionnaires measuring continuity of care: a systematic review. PLoS One. 2012;7(7):e42256. doi: 10.1371/journal.pone.0042256. PMID: 22860100 |
| Patient-Reported Outcomes Core (PRO-Core). University of North Carolina. https://pro.unc.edu/about.php |
| Fairclough DL. Design and Analysis of Quality of Life Studies in Clinical Trials, 2nd edition. New York: Chapman & Hall/CRC Interdisciplinary Statistics Series, 2010. |
| Cappelleri JC, Zou KH, Bushmakin AG, et al. Patient-reported outcomes: measurement, implementation and interpretation. New York: Chapman & Hall/CRC Biostatistics Series, 2014. |
| Calvert M, Blazeby J, Altman DG, Revicki DA, Moher D, Brundage MD. Reporting of patient-reported outcomes in randomized trials: the CONSORT PRO extension. JAMA. 2013; 309(8):814-822 doi: 10.1001/jama.2013.879 PMID: 23443445 |
| Patrick, D. L., et al. Content Validity-Establishing and Reporting the Evidence in Newly Developed Patient-Reported Outcomes (PRO) Instruments for Medical Product Evaluation: ISPOR PRO Good Research Practices Task Force Report: Part 1-Eliciting Concepts for a New PRO Instrument. Value Health. 2011; 14(8): 967-977. doi: 10.1016/j.jval.2011.06.014. PMID: 22152165 |
| Patrick, D. L., et al. (2011). Content Validity-Establishing and Reporting the Evidence in Newly Developed Patient-Reported Outcomes (PRO) Instruments for Medical Product Evaluation: ISPOR PRO Good Research Practices Task Force Report: Part 2-Assessing Respondent Understanding. Value Health. 2011; 14(8): 978-988. doi: 10.1016/j.jval.2011.06.013. PMID: 22152166 |
| Eremenco SL, Cella D, Arnold BJ. A comprehensive method for the translation and cross-cultural validation of health status questionnaires. Evaluation & the Health Professions. 2005; 28(2):212-232. PMID: 15851774 |