Further Reading

The PROTEUS-Practice Guide draws primarily from the foundational resources noted in each chapter (learn more on the Introduction page).

For further reading, here is a selection of other relevant references. They are grouped according to the three overarching stages for using PROs in clinical practice: Design, Implementation, and System & Data Management.

Design

Aiyegbusi OL, Roydhouse J, Rivera SC, Kamudoni P, Schache P, Wilson R, Stephens R, Calvert M. Key considerations to reduce or address respondent burden in patient-reported outcome (PRO) data collection. Nature Communications. 2022 Oct 12;13(1):6026.

Bamgboje-Ayodele A, Arnold B, Durcinoska I, Avery S, Vinod S, Rincones O, Thomas T, Descallar J, Smith B, Delaney GP, Girgis A. Implementing patient-reported outcomes into routine care: an audit of cancer patients from two local health districts in New South Wales to understand their capabilities and preferences. Australian Health Review. 2022 May 12;46(3):331-7.

Calvert M, Kyte D, Price G, Valderas JM, Hjollund NH. Maximising the impact of patient reported outcome assessment for patients and society. Bmj. 2019 Jan 24;364.

Greenhalgh J. The applications of PROs in clinical practice: what are they, do they work, and why?. Quality of Life Research. 2009 Feb;18:115-23.

Montgomery N, Howell D, Ismail Z, Bartlett SJ, Brundage M, Bryant-Lukosius D, Krzyzanowska M, Moody L, Snyder C, Barbera L. Selecting, implementing and evaluating patient-reported outcome measures for routine clinical use in cancer: the Cancer Care Ontario approach. Journal of Patient-Reported Outcomes. 2020 Dec;4:1-9.

Mooney K, Whisenant MS, Beck SL. Symptom care at home: a comprehensive and pragmatic PRO system approach to improve cancer symptom care. Medical care. 2019 May;57(Suppl 5 1):S66.

Oude Voshaar M, Terwee CB, Haverman L, van der Kolk B, Harkes M, van Woerden CS, van Breda F, Breukink S, de Hoop I, Vermeulen H, de Graaf E. Development of a standard set of PROs and generic PROMs for Dutch medical specialist care. Quality of Life Research. 2023 Feb 9:1-1.

Roydhouse J, Reeve BB. Incorporating Information From Proxies for Patient-Centered Outcomes in Adult and Pediatric Oncology Settings. Journal of Clinical Oncology. 2022 Oct:JCO-22.

Santana MJ, Haverman L, Absolom K, Takeuchi E, Feeny D, Grootenhuis M, Velikova G. Training clinicians in how to use patient-reported outcome measures in routine clinical practice. Quality of Life Research. 2015 Jul;24:1707-18.

Snyder CF, Dy SM, Hendricks DE, Brahmer JR, Carducci MA, Wolff AC, Wu AW. Asking the right questions: investigating needs assessments and health-related quality-of-life questionnaires for use in oncology clinical practice. Supportive Care in Cancer. 2007 Sep;15:1075-85.

Snyder CF, Herman JM, White SM, Luber BS, Blackford AL, Carducci MA, Wu AW. When using patient-reported outcomes in clinical practice, the measure matters: a randomized controlled trial. Journal of oncology practice. 2014 Sep;10(5):e299-306.

Snyder CF, Jensen RE, Geller G, Carducci MA, Wu AW. Relevant content for a patient-reported outcomes questionnaire for use in oncology clinical practice: Putting doctors and patients on the same page. Quality of Life Research. 2010 Sep;19:1045-55.

Implementation

Absolom K, Gibson A, Velikova G. Engaging patients and clinicians in online reporting of adverse effects during chemotherapy for cancer: the eRAPID system (electronic patient self-reporting of adverse events: patient information and aDvice). Medical care. 2019 May 1;57:S59-65.

Adeola BA, Ivana D, Orlando R, Wu VS, Anthony A, Girgis A. Supporting cancer patients to self-manage: Extent of use and perceptions of “trusted” online self-management resources. Patient Education and Counseling. 2022 Jul 1;105(7):2240-7.

Bantug ET, Coles T, Smith KC, Snyder CF, Rouette J, Brundage MD. 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. 2016 Apr 1;99(4):483-90.

Barbera L, Moody L. A decade in review: Cancer Care Ontario’s approach to symptom assessment and management. Medical Care. 2019 May 1;57:S80-4.

Blackford AL, Wu AW, Snyder C. Interpreting and acting on PRO results in clinical practice: lessons learned from the PatientViewpoint system and beyond. Medical care. 2019 May;57(Suppl 5 1):S46.

Browne JP, Cano SJ. A Rasch measurement theory approach to improve the interpretation of patient-reported outcomes. Medical Care. 2019 May 1;57:S18-23.

Brundage MD, Smith KC, Little EA, Bantug ET, Snyder CF, PRO Data Presentation Stakeholder Advisory Board. Communicating patient-reported outcome scores using graphic formats: results from a mixed-methods evaluation. Quality of Life Research. 2015 Oct;24:2457-72.

Cook KF, Cella D, Reeve BB. PRO-bookmarking to estimate clinical thresholds for patient-reported symptoms and function. Medical Care. 2019 May 1;57:S13-7.

Geerards D, Pusic A, Hoogbergen M, Van Der Hulst R, Sidey-Gibbons C. Computerized quality of life assessment: a randomized experiment to determine the impact of individualized feedback on assessment experience. Journal of medical Internet research. 2019 Jul 11;21(7):e12212.

Girgis A, Bamgboje-Ayodele A, Rincones O, Vinod SK, Avery S, Descallar J, Smith AB, Arnold B, Arnold A, Bray V, Durcinoska I. Stepping into the real world: a mixed-methods evaluation of the implementation of electronic patient reported outcomes in routine lung cancer care. Journal of Patient-Reported Outcomes. 2022 Dec;6(1):1-4.

Girgis A, Durcinoska I, Arnold A, Delaney GP. Interpreting and acting on the PRO scores from the patient-reported outcomes for personalized treatment and care (PROMPT-Care) eHealth system. Medical care. 2019 May 1;57:S85-91.

Girgis A, Durcinoska I, Arnold A, Descallar J, Kaadan N, Koh ES, Miller A, Ng W, Carolan M, Della-Fiorentina SA, Avery S. Web-based patient-reported outcome measures for personalized treatment and care (PROMPT-Care): multicenter pragmatic nonrandomized trial. Journal of medical Internet research. 2020 Oct 29;22(10):e19685.

Girgis A, Durcinoska I, Koh ES, Ng W, Arnold A, Delaney GP, PROMPT-Care Pathways Working Group. Development of health pathways to standardize cancer care pathways informed by patient-reported outcomes and clinical practice guidelines. JCO Clinical Cancer Informatics. 2018 Jul;2:1-3.

Hassett MJ, Cronin C, Tsou TC, Wedge J, Bian J, Dizon DS, Hazard-Jenkins H, Osarogiagbon RU, Wong S, Basch E, Austin T. eSyM: An Electronic Health Record–Integrated Patient-Reported Outcomes–Based Cancer Symptom Management Program Used by Six Diverse Health Systems. JCO Clinical Cancer Informatics. 2021 Dec;6:e2100137.

Haverman L, van Oers HA, Limperg PF, Hijmans CT, Schepers SA, Sint Nicolaas SM, Verhaak CM, Bouts AH, Fijnvandraat K, Peters M, van Rossum MA. Implementation of electronic patient reported outcomes in pediatric daily clinical practice: The KLIK experience. Clinical Practice in Pediatric Psychology. 2014 Mar;2(1):50.

Haverman, L., van Oers, H.A., van Muilekom, M.M. MSc, Grootenhuis, M.A. Options for the Interpretation of and Recommendations for Acting on Different PROMs in Daily Clinical Practice Using KLIK. Medical Care 57():p S52-S58, May 2019. DOI: 10.1097/MLR.0000000000001061

Hughes EF, Wu AW, Carducci MA, Snyder CF. What can I do? Recommendations for responding to issues identified by patient-reported outcomes assessments used in clinical practice. The journal of supportive oncology. 2012 Jul;10(4):143.

Jensen RE, Bjorner JB. Applying PRO reference values to communicate clinically relevant information at the point-of-care. Medical Care. 2019 May 1;57:S24-30.

Jansen F, Snyder CF, Leemans CR, Verdonck–de Leeuw IM. Identifying cutoff scores for the EORTC QLQ‐C30 and the head and neck cancer–specific module EORTC QLQ‐H&N35 representing unmet supportive care needs in patients with head and neck cancer. Head & Neck. 2016 Apr;38(S1):E1493-500.

Jensen RE, Snyder CF, Abernethy AP, Basch E, Potosky AL, Roberts AC, Loeffler DR, Reeve BB. Review of electronic patient-reported outcomes systems used in cancer clinical care. Journal of oncology practice. 2014 Jul;10(4):e215-22.

King MT, Dueck AC, Revicki DA. Can methods developed for interpreting group-level patient-reported outcome data be applied to individual patient management?. Medical care. 2019 May;57(Suppl 5 1):S38.

Nic Giolla Easpaig B, Tran Y, Bierbaum M, Arnolda G, Delaney GP, Liauw W, Ward RL, Olver I, Currow D, Girgis A, Durcinoska I. What are the attitudes of health professionals regarding patient reported outcome measures (PROMs) in oncology practice? A mixed-method synthesis of the qualitative evidence. BMC health services research. 2020 Dec;20(1):1-24.

Shi Q, Mendoza TR, Cleeland CS. Interpreting patient-reported outcome scores for clinical research and practice: definition, determination, and application of cutpoints. Medical care. 2019 May 1;57:S8-12.

Smith KC, Brundage MD, Tolbert E, Little EA, Bantug ET, Snyder CF, PRO Data Presentation Stakeholder Advisory Board. Engaging stakeholders to improve presentation of patient-reported outcomes data in clinical practice. Supportive Care in Cancer. 2016 Oct;24:4149-57.

Snyder CF, Blackford AL, Aaronson NK, Detmar SB, Carducci MA, Brundage MD, Wu AW. Can patient-reported outcome measures identify cancer patients’ most bothersome issues?. Journal of Clinical Oncology. 2011 Mar 20;29(9):1216-20.

Snyder CF, Blackford AL, Okuyama T, Akechi T, Yamashita H, Toyama T, Carducci MA, Wu AW. Using the EORTC-QLQ-C30 in clinical practice for patient management: identifying scores requiring a clinician’s attention. Quality of Life Research. 2013 Dec;22:2685-91.

Snyder CF, Blackford AL, Sussman J, Bainbridge D, Howell D, Seow HY, Carducci MA, Wu AW. Identifying changes in scores on the EORTC-QLQ-C30 representing a change in patients’ supportive care needs. Quality of Life Research. 2015 May;24:1207-16.

Snyder CF, Blackford AL, Brahmer JR, Carducci MA, Pili R, Stearns V, Wolff AC, Dy SM, Wu AW. Needs assessments can identify scores on HRQOL questionnaires that represent problems for patients: an illustration with the Supportive Care Needs Survey and the QLQ-C30. Quality of Life Research. 2010 Aug;19:837-45.

Snyder CF, Smith KC, Bantug ET, Tolbert EE, Blackford AL, Brundage MD, PRO Data Presentation Stakeholder Advisory Board. What do these scores mean? Presenting patient‐reported outcomes data to patients and clinicians to improve interpretability. Cancer. 2017 May 15;123(10):1848-59.

Stover AM, Stricker CT, Hammelef K, Henson S, Carr P, Jansen J, Deal AM, Bennett AV, Basch EM. Using stakeholder engagement to overcome barriers to implementing patient-reported outcomes (PROs) in cancer care delivery: approaches from 3 prospective studies. Medical care. 2019 May 1;57:S92-9.

van Muilekom MM, Luijten MA, van Oers HA, Terwee CB, van Litsenburg RR, Roorda LD, Grootenhuis MA, Haverman L. From statistics to clinics: the visual feedback of PROMIS® CATs. Journal of Patient-Reported Outcomes. 2021 Dec;5:1-4.

Warrington L, Absolom K, Conner M, Kellar I, Clayton B, Ayres M, Velikova G. Electronic systems for patients to report and manage side effects of cancer treatment: systematic review. Journal of medical Internet research. 2019 Jan 24;21(1):e10875.

Zahrieh D, Alexander A, Fruth B, Tan AD, Le-Rademacher J, Warsame R, Croghan K, Sloan JA. A case management system for integrating patient-reported outcome assessment in clinical practice: the Beacon tool. Medical care. 2019 May 1;57:S73-9.

System & Data Management

Calvert MJ, Cruz Rivera S, Retzer A, Hughes SE, Campbell L, Molony-Oates B, Aiyegbusi OL, Stover AM, Wilson R, McMullan C, Anderson NE. Patient reported outcome assessment must be inclusive and equitable. Nature medicine. 2022 Jun;28(6):1120-4.

Gensheimer SG, Wu AW, Snyder CF, PRO-EHR Users’ Guide Steering Group. Oh, the places we’ll go: patient-reported outcomes and electronic health records. The Patient-Patient-Centered Outcomes Research. 2018 Dec;11:591-8.

Jensen RE, Snyder CF, Basch E, Frank L, Wu AW. All together now: findings from a PCORI workshop to align patient-reported outcomes in the electronic health record. Journal of comparative effectiveness research. 2016 Nov;5(6):561-7.

Oliver BJ, Nelson EC, Kerrigan CL. Turning feed-forward and feedback processes on patient-reported data into intelligent action and informed decision-making: case studies and principles. Medical care. 2019 May 1;57:S31-7.

Stover AM, Haverman L, van Oers HA, Greenhalgh J, Potter CM, ISOQOL PROMs/PREMs in Clinical Practice Implementation Science Work Group. Using an implementation science approach to implement and evaluate patient-reported outcome measures (PROM) initiatives in routine care settings. Quality of Life Research. 2021 Nov;30:3015-33.

Teela L, van Muilekom MM, Kooij LH, Gathier AW, van Goudoever JB, Grootenhuis MA, Haverman L, van Oers HA. Clinicians’ perspective on the implemented KLIK PROM portal in clinical practice. Quality of Life Research. 2021 Nov;30:3267-77.

van Muilekom MM, Teela L, van Oers HA, van Goudoever JB, Grootenhuis MA, Haverman L. Patients’ and parents’ perspective on the implementation of Patient Reported Outcome Measures in pediatric clinical practice using the KLIK PROM portal. Quality of Life Research. 2022 Jan 1:1-4.

Wu AW, Jensen RE, Salzburg C, Snyder C. Advances in the use of patient reported outcome measures in electronic health records: including case studies. Landscape review prepared for the PCORI national workshop to advance the use of PRO measures in electronic health records. Atlanta, GA. 11/19-20/13. Available at: http://www.pcori.org/assets/2013/11/PCORI-PRO-Workshop-EHR-Landscape-Review-111913.pdf.