Reeve, B. B., Wyrwich, K. W., Wu, A. W., Velikova, G., Terwee, C. B., Snyder, C. F., … Butt, Z. (2013). ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research. Quality of Life Research, 22(8), 1889–1905. https://doi.org/10.1007/s11136-012-0344-y.
Kotronoulas, G., Kearney, N., Maguire, R., Harrow, A., Di Domenico, D., Croy, S., et al. (2014). What is the value of the routine use of patient-reported outcome measures toward improvement of patient outcomes, processes of care, and health service outcomes in cancer care? A systematic review of controlled trials. Journal of Clinical Oncology, 32(14), 1480–1510. https://doi.org/10.1200/JCO.2013.53.5948.
Article
PubMed
Google Scholar
Marshall, S., Haywood, K., & Fitzpatrick, R. (2006). Impact of patient-reported outcome measures on routine practice: a structured review. Journal of Evaluation in Clinical Practice, 12(5), 559–568. https://doi.org/10.1111/j.1365-2753.2006.00650.x.
Article
PubMed
Google Scholar
Valderas, J., Kotzeva, A., Espallargues, M., Guyatt, G., Ferrans, C., Halyard, M., et al. (2008). The impact of measuring patient-reported outcomes in clinical practice: a systematic review of the literature. Quality of Life Research, 17(2), 179–193. https://doi.org/10.1007/s11136-007-9295-0.
Article
CAS
PubMed
Google Scholar
Basch, E., Deal, A. M., Kris, M. G., Scher, H. I., Hudis, C. A., Sabbatini, P., … Schrag, D. (2016). Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. Journal of Clinical Oncology, 34(6), 557–565. https://doi.org/10.1200/JCO.2015.63.0830.
Basch, E., Deal, A. M., Dueck, A. C., Scher, H. I., Kris, M. G., Hudis, C., & Schrag, D. (2017). Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment. JAMA, 318(2), 197–198. https://doi.org/10.1001/jama.2017.7156.
Article
PubMed
PubMed Central
Google Scholar
Teela, L., van Muilekom, M. M., Kooij, L. H., Gathier, A. W., van Goudoever, J. B., Grootenhuis, M. A., … van Oers, H. A. (2020). Clinicians’ perspective on the implemented KLIK PROM portal in clinical practice. Quality of Life Research. https://doi.org/10.1007/s11136-020-02522-5.
Terwee, C., Roorda, L., De Vet, H., Dekker, J., Westhovens, R., Van Leeuwen, J., et al. (2014). Dutch–Flemish translation of 17 item banks from the patient-reported outcomes measurement information system (PROMIS). Quality of Life Research, 23(6), 1733–1741. https://doi.org/10.1007/s11136-013-0611-6.
Article
CAS
PubMed
Google Scholar
Gamper, E.-M., Martini, C., Petersen, M. A., Virgolini, I., Holzner, B., & Giesinger, J. M. (2019). Do patients consider computer-adaptive measures more appropriate than static questionnaires? Journal of Patient-Reported Outcomes, 3(1), 7. https://doi.org/10.1186/s41687-019-0096-3.
Article
PubMed
PubMed Central
Google Scholar
Cella, D., Yount, S., Rothrock, N., Gershon, R., Cook, K., Reeve, B., … PROMIS Cooperative Group (2007). The patient-reported outcomes measurement information system (PROMIS): Progress of an NIH roadmap cooperative group during its first two years. Medical Care, 45(5 Suppl 1), S3–S11. https://doi.org/10.1097/01.mlr.0000258615.42478.55.
Article
PubMed
PubMed Central
Google Scholar
Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., … PROMIS Cooperative Group (2010). The patient-reported outcomes measurement information system (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. Journal of Clinical Epidemiology, 63(11), 1179–1194. https://doi.org/10.1016/j.jclinepi.2010.04.011.
Riley, W. T., Rothrock, N., Bruce, B., Christodolou, C., Cook, K., Hahn, E. A., & Cella, D. (2010). Patient-reported outcomes measurement information system (PROMIS) domain names and definitions revisions: further evaluation of content validity in IRT-derived item banks. Quality of Life Research, 19(9), 1311–1321. https://doi.org/10.1007/s11136-010-9694-5.
Article
PubMed
PubMed Central
Google Scholar
Cella, D., Gershon, R., Lai, J.-S., & Choi, S. (2007). The future of outcomes measurement: item banking, tailored short-forms, and computerized adaptive assessment. Quality of Life Research, 16(1), 133–141. https://doi.org/10.1007/s11136-007-9204-6.
Article
PubMed
Google Scholar
Haverman, L., Grootenhuis, M. A., Raat, H., van Rossum, M. A., van Dulmen-den Broeder, E., Hoppenbrouwers, K., et al. (2016). Dutch–Flemish translation of nine pediatric item banks from the patient-reported outcomes measurement information system (PROMIS)®. Quality of Life Research, 25(3), 761–765. https://doi.org/10.1007/s11136-015-0966-y.
Article
PubMed
Google Scholar
Terwee, C., Crins, M., Boers, M., de Vet, H., & Roorda, L. (2019). Validation of two PROMIS item banks for measuring social participation in the Dutch general population. Quality of Life Research, 28(1), 211–220. https://doi.org/10.1007/s11136-018-1995-0.
Article
CAS
PubMed
Google Scholar
Luijten, M. A., Terwee, C. B., van Oers, H. A., Joosten, M. M., van den Berg, J. M., Schonenberg-Meinema, D., et al. (2019). Psychometric properties of the pediatric patient-reported outcomes measurement information system (PROMIS®) item banks in a Dutch clinical sample of children with juvenile idiopathic arthritis. Arthritis Care and Research, 72(12), 1780–1789. https://doi.org/10.1002/acr.24094
Engelen, V., Detmar, S., Koopman, H., Maurice-Stam, H., Caron, H., Hoogerbrugge, P., … Grootenhuis, M. (2012). Reporting health-related quality of life scores to physicians during routine follow-up visits of pediatric oncology patients: is it effective? Pediatric Blood & Cancer, 58(5), 766–774. https://doi.org/10.1002/pbc.23158.
Haverman, L., van Rossum, M. A., van Veenendaal, M., van den Berg, J. M., Dolman, K. M., Swart, J., et al. (2013). Effectiveness of a web-based application to monitor health-related quality of life. Pediatrics, 131(2), e533–e543. https://doi.org/10.1542/peds.2012-0958.
Article
PubMed
Google Scholar
Haverman, L., van Oers, H. A., Limperg, P. F., Hijmans, C. T., Schepers, S. A., Nicolaas, S., et al. (2014). Implementation of electronic patient reported outcomes in pediatric daily clinical practice: The KLIK experience. Clinical Practice in Pediatric Psychology, 2(1), 50–67. https://doi.org/10.1037/cpp0000043.
Article
Google Scholar
Haverman, L., van Oers, H. A., van Muilekom, M. M., & Grootenhuis, M. A. (2019). Options for the interpretation of and recommendations for acting on different PROMs in daily clinical practice using KLIK. Medical Care, 57(Suppl 1), S52–S58. https://doi.org/10.1097/MLR.0000000000001061.
Article
PubMed
Google Scholar
Fischer, K. I., De Faoite, D., & Rose, M. (2020). Patient-reported outcomes feedback report for knee arthroplasty patients should present selective information in a simple design-findings of a qualitative study. Journal of Patient-Reported Outcomes, 4(1), 6. https://doi.org/10.1186/s41687-020-0173-7.
Article
PubMed
PubMed Central
Google Scholar
Snyder, C., & Wu, A. (2017). Users’ guide to integrating patient-reported outcomes in electronic health records. Baltimore: Johns Hopkins University.
Google Scholar
Gilbert, A., Sebag-Montefiore, D., Davidson, S., & Velikova, G. (2015). Use of patient-reported outcomes to measure symptoms and health related quality of life in the clinic. Gynecologic Oncology, 136(3), 429–439. https://doi.org/10.1016/j.ygyno.2014.11.071.
Article
PubMed
Google Scholar
Sokka, T. (2016). Go, go, GoTreatlT! Clinical and Experimental Rheumatology, 34(5), S91–S95.
PubMed
Google Scholar
Bantug, E. T., Coles, T., Smith, K. C., Snyder, C. F., Rouette, J., & Brundage, M. D. (2016). Graphical displays of patient-reported outcomes (PRO) for use in clinical practice: What makes a pro picture worth a thousand words? Patient Education and Counseling, 99(4), 483–490. https://doi.org/10.1016/j.pec.2015.10.027.
Article
PubMed
Google Scholar
Brundage, M. D., Smith, K. C., Little, E. A., Bantug, E. T., & Snyder, C. F. (2015). Communicating patient-reported outcome scores using graphic formats: results from a mixed-methods evaluation. Quality of Life Research, 24(10), 2457–2472. https://doi.org/10.1007/s11136-015-0974-y.
Article
PubMed
PubMed Central
Google Scholar
Smith, K. C., Brundage, M. D., Tolbert, E., Little, E. A., Bantug, E. T., Snyder, C. F., et al. (2016). Engaging stakeholders to improve presentation of patient-reported outcomes data in clinical practice. Support Care Cancer, 24(10), 4149–4157. https://doi.org/10.1007/s00520-016-3240-0.
Article
PubMed
Google Scholar
Snyder, C., Smith, K., Holzner, B., Rivera, Y. M., Bantug, E., Brundage, M., et al. (2019). Making a picture worth a thousand numbers: recommendations for graphically displaying patient-reported outcomes data. Quality of Life Research, 28(2), 345–356. https://doi.org/10.1007/s11136-018-2020-3.
Article
PubMed
Google Scholar
Snyder, C. F., Smith, K. C., Bantug, E. T., Tolbert, E. E., Blackford, A. L., Brundage, M. D., & the PRO Data Presentation Stakeholder Advisory Board (2017). What do these scores mean? Presenting patient-reported outcomes data to patients and clinicians to improve interpretability. Cancer, 123(10), 1848–1859. https://doi.org/10.1002/cncr.30530.
Article
PubMed
Google Scholar
Wu, A. W., White, S. M., Blackford, A. L., Wolff, A. C., Carducci, M. A., Herman, J. M., et al. (2016). Improving an electronic system for measuring PROs in routine oncology practice. Journal of Cancer Survivorship, 10(3), 573–582. https://doi.org/10.1007/s11764-015-0503-6.
Article
PubMed
Google Scholar
McNair, A. G., Brookes, S. T., Davis, C. R., Argyropoulos, M., & Blazeby, J. M. (2010). Communicating the results of randomized clinical trials: do patients understand multidimensional patient-reported outcomes? Journal of Clinical Oncology, 28(5), 738–743. https://doi.org/10.1200/JCO.2009.23.9111.
Article
PubMed
Google Scholar
Cronin, R. M., Conway, D., Condon, D., Jerome, R. N., Byrne, D. W., & Harris, P. A. (2018). Patient and healthcare provider views on a patient-reported outcomes portal. Journal of the American Medical Informatics Association, 25(11), 1470–1480. https://doi.org/10.1093/jamia/ocy111.
Article
PubMed
PubMed Central
Google Scholar
Izard, J., Hartzler, A., Avery, D. I., Shih, C., Dalkin, B. L., & Gore, J. L. (2014). User-centered design of quality of life reports for clinical care of patients with prostate cancer. Surgery, 155(5), 789–796. https://doi.org/10.1016/j.surg.2013.12.007.
Article
PubMed
Google Scholar
Fritz, F., Ständer, S., Breil, B., Riek, M., & Dugas, M. (2011). CIS-based registration of quality of life in a single source approach. BMC Medical Informatics and Decision Making, 11(1), 26. https://doi.org/10.1186/1472-6947-11-26.
Article
PubMed
PubMed Central
Google Scholar
Barthel, D., Fischer, K., Nolte, S., Otto, C., Meyrose, A.-K., Reisinger, S., et al. (2016). Implementation of the Kids-CAT in clinical settings: a newly developed computer-adaptive test to facilitate the assessment of patient-reported outcomes of children and adolescents in clinical practice in Germany. Quality of Life Research, 25(3), 585–594. https://doi.org/10.1007/s11136-015-1219-9.
Article
CAS
PubMed
Google Scholar
Tolbert, E., Brundage, M., Bantug, E., Blackford, A. L., Smith, K., Snyder, C., & PRO Data Presentation Stakeholder Advisory Board (2018). Picture this: presenting longitudinal patient-reported outcome research study results to patients. Medical Decision Making, 38(8), 994–1005. https://doi.org/10.1177/0272989X18791177.
Article
PubMed
PubMed Central
Google Scholar
Rothrock, N. E., Bass, M., Blumenthal, A., Gershon, R. C., Hanson, B., Joeris, A., … Vrahas, M. S. (2019). AO patient outcomes center: design, implementation, and evaluation of a software application for the collection of patient-reported outcome measures in orthopedic outpatient clinics. JMIR Formative Research, 3(2), e10880. https://doi.org/10.2196/10880.
Wagner, L. I., Schink, J., Bass, M., Patel, S., Diaz, M. V., Rothrock, N., … Cella, D. (2015). Bringing PROMIS to practice: brief and precise symptom screening in ambulatory cancer care. Cancer, 121(6), 927–934. https://doi.org/10.1002/cncr.29104.
Grossman, L. V., & Mitchell, E. G. (2017). Visualizing the patient-reported outcomes measurement information system (PROMIS) measures for clinicians and patients. In AMIA annual symposium proceedings, (2017, p. 2289). Bethesda: American Medical Informatics Association.
Google Scholar
Almario, C. V., Chey, W., Kaung, A., Whitman, C., Fuller, G., Reid, M., … Spiegel, B. M. R. (2015). Computer-generated versus physician-documented history of present illness (HPI): results of a blinded comparison. The American Journal of Gastroenterology, 110(1), 170–179. https://doi.org/10.1038/ajg.2014.356.
Carlsen, B., & Glenton, C. (2011). What about N? A methodological study of sample-size reporting in focus group studies. BMC Medical Research Methodology, 11(1), 26. https://doi.org/10.1186/1471-2288-11-26.
Article
PubMed
PubMed Central
Google Scholar
Rothrock, N. E., Amtmann, D., & Cook, K. F. (2020). Development and validation of an interpretive guide for PROMIS scores. Journal of Patient-Reported Outcomes, 4(1), 1–7. https://doi.org/10.1186/s41687-020-0181-7
Jacobs, P., Anello, D., & Elkin-Frankston, S. (2018). Using design to connect patients, providers, and researchers: a cognitive assessment and monitoring platform for integrative research (CAMPFIRE). In International conference on applied human factors and ergonomics, (pp. 3–14). Berlin: Springer.
Google Scholar
Gold, H. T., Karia, R. J., Link, A., Lebwohl, R., Zuckerman, J. D., Errico, T. J., … Cantor, M. N. (2020). Implementation and early adaptation of patient-reported outcome measures into an electronic health record: a technical report. Health Informatics Journal, 26(1), 129–140. https://doi.org/10.1177/1460458218813710.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa.
Article
Google Scholar
Masataka, O., & Kei, I. (2008). Color universal design (CUD)–how to make figures and presentations that are friendly to colorblind people. Minato City: Jikei Medical School.
Google Scholar
Hanmer, J., Jensen, R. E., & Rothrock, N. (2020). A reporting checklist for healthmeasures’ patient-reported outcomes: ASCQ-Me, Neuro-QoL, NIH toolbox, and PROMIS. J Patient Rep Outcomes, 4(1), 1–7. https://doi.org/10.1186/s41687-020-0176-4