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:
If you would like to request access to the PCRC's Measurement Tool Library, please click below.
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Calvert M, Kyte D, Mercieca-Bebber R, et al. Guidelines for Inclusion of Patient-Reported Outcomes in Clinical Trial Protocols: The SPIRIT-PRO Extension. JAMA. 2018;319(5):483-494. doi:10.1001/jama.2017.21903 |
| 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 |
| 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/ |
| Systematic Reviews of Instruments Relevant to Palliative Care, compiled by the PCRC |
| AHRQ Evidence Review: Assessment Tools for Palliative Care |
| Patient-Reported Outcomes Core (PRO-Core). University of North Carolina. |
| 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 |