Do Patient-Reported Outcome Measures Tell Us the Full Story?

Allport G. W. (1937). Personality: A psychological interpretation. Holt, Rinehart & Winston.

Allport G. W. (1961). Pattern and growth in personality. Holt, Rinehart & Winston.

Ashworth M. Guerra D. Kordowicz M. (2019). Individualised or standardised outcome measures: A co-habitation? Administration and Policy in Mental Health, 46(4), 425–428.

Basch E. Deal A. M. Kris M. G. Scher H. I. Hudis C. A. Sabbatini P. Rogak L. Bennett A. V. Dueck A. C. Atkinson T. M. Chou J. F. Dulko D. Sit L. Barz A. Novotny P. Fruscione M. Sloan J. A. 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.

Biesta G. (2010). Pragmatism and the philosophical foundations of mixed methods research. In Tashakkorti A. Teddlie C. (Eds.), Sage handbook of mixed methods in social and behavioural research (pp. 95–117). SAGE.

Boje D. M. (2001). Narrative methods for organizational and communication research. SAGE.

Clandinin D. J. Connelly F. M. (2000). Narrative inquiry: Experience and story in qualitative research. Jossey-Bass.

Cruz Rivera S. McMullan C. Jones L. Kyte D. Slade A. Calvert M. (2020). The impact of patient-reported outcome data from clinical trials: Perspectives from international stakeholders. Journal of Patient-Reported Outcomes, 4, 51.

Finucane M. L. Martino S. C. Parker A. M. Schlesinger M. Grob R. Cerully J. L. Rybowski L. Shaller D. (2018). A framework for conceptualizing how narratives from health-care consumers might improve or impede the use of information about provider quality. Journal of Patient Experience, 5(1), 15–26.

Greenhalgh T. Hurwitz B. (1999). Narrative based medicine: Why study narrative? British Medical Journal, 318, 48–50.

Grob R. Schlesinger M. Barre L. R. Bardach N. Lagu T. Shaller D. Parker A. M. Martino S. C. Finucane M. L. Cerully J. L. Palimaru A. (2019). What words convey: The potential for patient narratives to inform quality improvement. Milbank Quarterly, 97(1), 176–227.

Harvey L. (2012). Social research glossary. Quality Research International.

Hatch J. A. Newsom S. K. (2010). Life history. International Encyclopedia of Education.

Hatch J. A. Wisniewski R. (1995). Life history and narrative. International Journal of Qualitative Studies in Education, 8(1), 3–4.

Hughes J. A. Sharrock W. W. (1997). The philosophy of social research. Longman.

Jabareen Y. (2009). Building a conceptual framework: Philosophy, definitions, and procedure. International Journal of Qualitative Methods, 8(4), 49–62.

Kaushik V. Walsh C. A. (2019). Pragmatism as a research paradigm and its implications for social work research. Social Science, 8(9), 255.

Kotronoulas G. Papadopoulou C. Simpson M. F. McPhelim J. Mack L. Maguire R. (2018). Using patient-reported outcome measures to deliver enhanced supportive care to people with lung cancer: Feasibility and acceptability of a nurse-led consultation model. Supportive Care in Cancer, 26(11), 3729–3737.

Kyte D. Ives J. Draper H. Calvert M. (2016). Current practices in patient-reported outcome (PRO) data collection in clinical trials: A cross-sectional survey of UK trial staff and management. BMJ Open, 6, e012281.

LaVela S. L. Gallan A. S. (2014). Evaluation and measurement of patient experience. Journal of Patient Experience, 2(1), 28–36.

Marsh C. (1982). Survey method: The contribution of surveys to sociological explanation. Routledge.

McClimans L. (2010). A theoretical framework for patient-reported outcome measures. Theoretical Medicine and Bioethics, 31(3), 225–240.

McKenna S. P. Heaney A. Wilburn J. Stenner A. J. (2019). Measurement of patient-reported outcomes. 1: The search for the Holy Grail. Journal of Medical Economics, 22(6), 516–522.

Meadows K. (2021). Cognitive interviewing methodologies. Clinical Nursing Research, 30(4), 375–379.

Mishler E. G. (1995). Models of narrative analysis: A typology. Journal of Narrative and Life History, 5(2), 87–123.

Neale J. Strang J. (2015). Philosophical ruminations on measurement: Methodological orientations of patient reported outcome measures (PROMS). Journal of Mental Health, 24(3), 123–125.

Polkinghorne D. E. (1995). Narrative configuration in qualitative analysis. International Journal of Qualitative Studies in Education, 8(1), 5–23.

Pool R. Montgomery C. M. Morar N. S. Mweemba O. Ssali A. Gafos M. Lees S. Stadler J. Crook A. Nunn A. Hayes R. McCormack S. (2010). A mixed methods and triangulation model for increasing the accuracy of adherence and sexual behaviour data: The microbicides development programme. PLoS One, 5(7), e11600.

Riesman C. K. (1993). Narrative analysis. SAGE Publication.

Riessman C. K. (1990). Divorce talk: Women and men make sense of personal relationships. Rutgers University Press.

Riessman C. K. (2008). Narrative methods for the human sciences. Framework for conceptualizing how narratives from health-care consumers might improve or impede the use of information about provider quality. SAGE.

Romm N. R. A. (2013). Employing questionnaires in terms of a constructivist epistemological stance: Reconsidering researchers’ involvement in the unfolding of social life. International Journal of Qualitative Methods, 12, 652–669.

U.S. Department of Health and Human Services FDA Center for Drug Evaluation and Research. (2006). Guidance for industry: Patient-reported outcome measures: Use in medical product development to support labeling claims: Draft guidance. Health and Quality of Life Outcomes, 4, 79.

Wang C. C. Geale S. K. (2015). The power of story: Narrative inquiry as a methodology in nursing research. International Journal of Nursing Science, 2(2), 195–198.

Wong G. Breheny M. (2018). Narrative analysis in health psychology: A guide for analysis. Health Psychology and Behavioral Medicine, 6(1), 245–261.