Interpreting Patient-Reported Outcome Measures
Narrative and the "Fusion of Horizons"
DOI:
https://doi.org/10.5195/pom.2021.66Keywords:
patient-reported outcome measures, mixed methods research, hermeneutics, patient experienceAbstract
Patient-reported outcome measures (PROMs) are valued in healthcare evaluation for bringing patient perspectives forward, and enabling patient-centered care. The range of evidence permitted by PROMs to measure patients’ quality of life narrowly denies subjective experience. This neglect is rooted in the epistemic assumptions that ground PROMs, and the tension between the standardization (the task of measurement) and the individual and unique circumstances of patients. To counter the resulting methodological shortcomings, this article proposes a hermeutical approach and interpretive phenomenology instead of generic qualitative research methods.
References
Allport, Gordon W. 1937. Personality: A Psychological Interpretation. New York: Henry Holt & Co.
Anderson, Norman B. 1998. “Levels of Analysis in Health Science: A Framework for Integrating Sociobehavioral and Biomedical Research.” Annals of the New York Academy of Sciences 840, no. 1: 563–76. https://doi.org/10.1111/j.1749-6632.1998.tb09595.x.
Ashworth, Mark, Maria Kordowicz, and Peter Schofield. 2012.‘The PSYCHLOPS’ (Psychological Outcome Profiles): An Outcome Measure.” Integrating Science and Practice 2, no. 2: 36–39. https://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.679.5260&rep=rep1&type=pdf.
Benner, Patricia Ellen. 1994. Interpretive Phenomenology: Embodiment, Caring, and Ethics in Health and Illness. Thousand Oaks: Sage.
Bowley, Arthur Lyon. 1915. The Nature and Purpose of the Measurement of Social Phenomena. London: P.S. King & Son.
Brock, Dan. 1993. “Quality of Life Measures in Health Care and Medical Ethics.” In The Quality of Life, edited by Martha C. Nussbaum and Amartya Sen, 95–132. Oxford: Clarendon Press.
Carr, A.J., and I.J. Higginson. 2001. “Are Quality of Life Measures Patient Centred?” British Medical Journal 322, no. 7298: 1357–60. https://doi.org/10.1136/bmj.322.7298.1357.
Cheng, Karis K.F. and Alexander M. Clark. 2017. “Qualitative Methods and Patient-Reported Outcomes: Measures Development and Adaptation.” International Journal of Qualitative Methods 16: 1–3. https://doi.org/10.1177%2F1609406917702983.
Clark, Herbert H. and Michael F. Schober. 1992. “Asking Questions and Influencing Answers.” In Questions about Questions: Inquiries into the Cognitive Bases of Surveys, edited by Judith M. Tanur, 15–48. New York: Russell Sage Foundation.
Clark, Jeff. 2008. “Philosophy, Understanding and the Consultation: A Fusion of Horizons.” British Journal of General Practice 58, no. 546: 58–60. https://dx.doi.org/10.3399%2Fbjgp08X263929.
Council of the Statistical Society of London. 1838. “Fourth Annual Report of the Council of the Statistical Society of London.” Journal of the Statistical Society 1, no. 1: 5–13. https://doi.org/10.2307/2337850.
Devlin, Nancy J. and John Appleby. 2010. “Getting the Most out of PROMs: Putting Health Outcomes at the Heart of NHS Decision-Making.” London: The King’s Fund. https://www.kingsfund.org.uk/sites/default/files/Getting-the-most-out-of-PROMs-Nancy-Devlin-John-Appleby-Kings-Fund-March-2010.pdf.
Engel, G.L. 1977. “The Need for a New Medical Model: A Challenge for Biomedicine.” Science 196, no. 4286: 129–36. https://doi.org/10.1126/science.847460.
FDA (Food and Drug Administration). 2009. “Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims.” https://www.fda.gov/regulatory-information/search-fda-guidance-documents/patient-reported-outcome-measures-use-medical-product-development-support-labeling-claims.
Frechette, Julie, Vasiliki Bitzas, Monique Aubry, Kelley Kilpatrick, and Mélanie Lavoie-Tremblay. 2020. “Capturing Lived Experience: Methodological Considerations for Interpretive Phenomenological Inquiry.” International Journal of Qualitative Methods. https://doi.org/10.1177%2F1609406920907254.
Gadamer, Hans-Georg. 2003. Truth and Method. 2nd ed. Translated by Joel Weinsheimer and Donald G. Marshall. New York: Continuum.
Gault, Robert H. 1907. “A History of the Questionnaire Method of Research in Psychology.” Research in Psychology 14, no. 3: 366–83. https://doi.org/10.1080/08919402.1907.10532551.
Hammersley, Martyn. 2000. Taking Sides in Social Research: Essays on Partisanship and Bias. London: Routledge.
Haynes, Stephen N., Gregory H. Mumma, and Catherine Pinson. 2009. “Idiographic Assessment: Conceptual and Psychometric Foundations of Individualized Behavioral Assessment.” Clinical Psychology Review 29, no. 2: 179–91. https://doi.org/10.1016/j.cpr.2008.12.003.
Harvey, Lee. 2012–20. Social Research Glossary. Quality Research International. http://www.qualityresearchinternational.com/glossary/.
Hughes, John. 1980. The Philosophy of Social Research. London: Longman.
Hughes, John A. and Wesley W. Sharrock. 1997. The Philosophy of Social Research. London: Longman.
Jacobson, Alan M., Mary de Groot, and Jacqueline A. Samson. 1994. “The Evaluation of Two Measures of Quality of Life in Patients with Type I and Type II Diabetes.” Diabetes Care 17, no. 4: 267–74. https://doi.org/10.2337/diacare.17.4.267.
Jones, D. Caradog. 1941. “Evolution of the Social Survey in England since Booth.” American Journal of Sociology 46, no. 6: 818–25. https://doi.org/10.1086/218796.
Kaplan, R.M. 1990. “Behavior as the Central Outcome in Health Care.” American Psychologist 45, no. 11: 1211–20. http://dx.doi.org/10.1037/0003-066X.45.11.1211.
Karnofsky, D.A. and J.H. Burchenal. 1949. “The Clinical Evaluation of Chemotherapeutic agents in Cancer.” In Evaluation of Chemotherapeutic Agents, edited by C.M. MacLeod, 196. New York: Columbia Press.
Kim, Woo Jin, Jae Hong Park, and Jae-ho Yoo. 2015. “Emotional and Behavioral Problems and Glycemic Control in Adolescents with Type 1 and Type 2 Diabetes.” Journal of Psychiatry 18: 244. https://doi.org/10.4172/2378-5756.1000244.
Kwon, Jae Yung, Sally Thorne, and Richard Sawatzky. 2019. “Interpretation and Use of Patient-Reported Outcome Measures through a Philosophical Lens.” Quality of Life Research 28, no. 3: 629–36. https://doi.org/10.1007/s11136-018-2051-9.
Launer, John. 2002. Narrative-Based Primary Care: A Practical Guide. Abingdon: Radcliffe Medical Press.
———. 2003. “Uniqueness and Conformity.” QJM 96: 615–16. https://doi.org/10.1093/qjmed/hcg099.
Malpas, Jeff. 2018. “Hans-Georg Gadamer.” In Stanford Encyclopedia of Philosophy Archive, edited by Edward N. Zalta. https://plato.stanford.edu/cgi-bin/encyclopedia/archinfo.cgi?entry=gadamer&archive=fall2018.
Marsh, C. 1970. “Problems with Surveys: Methods or Epistemology?” Sociology 13, no. 2: 293–305. https://doi.org/10.1177/003803857901300210.
McClimans, Leah. 2010a. “A Theoretical Framework for Patient-Reported Outcome Measures.” Theoretical Medicine and Bioethics 31, no. 3: 225–40. https://doi.org/10.1007/s11017-010-9142-0.
———. 2010b. “Towards Self-Determination in Quality of Life Research.” Medicine, Health Care and Philosophy 13, no. 1: 67–76. http://dx.doi.org/10.1007/s11019-009-9195-x.
———. 2021. “First-Person Epidemiological Measures: Vehicles for Patient-Centered Care.” Synthese 198: 2521–37. https://doi.org/ 10.1007/s11229-019-02094-z.
Meadows, K.A., C. Abrams, and A. Sandbaek. 2000. “Adaptation of the Diabetes Health Profile (DHP-1) for Use with Patients with Type 2 Diabetes Mellitus: Psychometric Evaluation and Cross-Cultural Comparison.” Diabetic Medicine 17, no. 8: 572–80. https://doi.org/10.1046/j.1464-5491.2000.00322.x.
Meadows, K., N. Steen, E. McColl, M. Eccles, C. Shiels, J. Hewison, and A. Hutchinson. 1996. “The Diabetes Health Profile (DHP): A New Instrument for Assessing the Psychosocial Profile of Insulin Requiring Patients—Development and Psychometric Evaluation.” Quality of Life Research 5, no. 2: 242–54. https://doi.org/10.1007/bf00434746.
Migliorini, Laura, Paola Cardinali, and Nadia Rania. 2019. “How Could Self-Determination Theory Be Useful for Facing Health Innovation Challenges?” Frontiers in Psychology, 14 August. https://doi.org/10.3389/fpsyg.2019.01870.
Mishler, Elliot G. 1995. “Models of Narrative Analysis: A Typology.” Journal of Narrative and Life History 5, no. 2: 87–123. https://doi.org/10.1075/jnlh.5.2.01mod
Montague, Gerard P. 2012. Who Am I? Who Is She?: A Naturalistic, Holistic, Somatic Approach to Personal Identity. Piscataway, NJ: Transaction Books.
Mouton, Johann and H.C. Marais. 1990. Basic Concepts in the Methodology of the Social Sciences. Pretoria, South Africa: Human Sciences Research Council.
O’Boyle, Ciaran, John Browne, Anne Hickey, Hannah Mcgee, and C.R.B. Browne. 1993. The Schedule for the Evaluation of Individual Quality of Life (SEIQoL). Administration manual. Dublin: Royal College of Surgeons in Ireland.
Pinotti, Rachel. 2016. “PROQOLID.” Journal of the Medical Library Association 104, no. 1: 91–92. http://dx.doi.org/10.3163/1536-5050.104.1.022.
Polonsky, William H., Lawrence Fisher, Jay Earles, R. James Dudl, Joel Lees, Joseph Mullan, and Richard A. Jackson. 2005. “Assessing Psychosocial Distress in Diabetes: Development of the Diabetes Distress Scale.” Diabetes Care 28, no. 3: 626–31. https://doi.org/10.2337/diacare.28.3.626.
Rabin, R. and F. de Charro. 2001. “EQ-5D: A Measure of Health Status from the EuroQol Group.” Annals of Medicine 33, no. 5: 337–43. https://doi.org/10.3109/07853890109002087.
Regan, Paul. 2012 “Hans-Georg Gadamer’s Philosophical Hermeneutics: Concepts of Reading, Understanding and Interpretation. Meta: Research in Hermeneutics, Phenomenology, and Practical Philosophy 4, no. 2: 286–303. http://www.metajournal.org//articles_pdf/286-303-regan-meta8-tehno.pdf.
Riessman, Catherine K. 1993. Narrative Analysis. Newbury Park, CA: Sage Publications.
Romm, Norma 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 (February): 652–69. https://doi.org/10.1177%2F160940691301200136.
Rothman, Margaret, Laurie Burke, Pennifer Erickson, Nancy Kline Leidy, Donald L. Patrick, and Charles D. Petrie. 2009. “Use of Existing Patient-Reported Outcome (PRO) Instruments and Their Modification: The ISPOR Good Research Practices for Evaluating and Documenting Content Validity for the Use of Existing Instruments and Their Modification PRO Task Force Report.” Value in Health 12, no. 8: 1075–83. https://doi.org/10.1111/j.1524-4733.2009.00603.x.
Speight, J., A.J. Woodcock, M.D. Reaney, S.A. Amiel, P. Johnson, N. Parrott, M.K. Rutter, P. Senior, R. Smith, and J.A.M. Shaw. 2010. “The QoL-Q Diabetes: A Novel Instrument to Assess Quality of Life for Adults with Type 1 Diabetes Undergoing Complex Interventions Including Transplantation.” Diabetic Medicine 27 (Supplement 1): 3–4. http://hdl.handle.net/10536/DRO/DU:30036424.
Schwartz, Carolyn E. and Bruce D. Rapkin. 2004. “Reconsidering the Psychometrics of Quality of Life Assessment in Light of Response Shift and Appraisal.” Health and Quality of Life Outcomes 2: 16. https://doi.org/10.1186/1477-7525-2-16.
Tashakkori, Abbas and Charles Teddlie, eds. 2003. Handbook of Mixed Methods in Social and Behavioral Research. Thousand Oaks: Sage.
Travers, Max. 2001. Qualitative Research through Case Studies. Thousand Oaks: Sage.
Trikkalinou, Aikaterini, Athanasia K. Papazafiropoulou, and Andreas Melidonis. 2017. “Type 2 Diabetes and Quality of Life.” World Journal of Diabetes 8, no. 4: 120–29. https://doi.org/10.4239/wjd.v8.i4.120.
Ware Jr., John E. and Cathy Donald Sherbourne. 1992. “The MOS 36-Item Short-Form Health Survey (SF-36). I. Conceptual Framework and Item Selection.” Medical Care 30, no. 6: 473–83. https://doi.org/10.1097/00005650-199206000-00002.
Weenink, Jan-Willem, Jozé Braspenning and Michel Wensing. 2014. “Patient-Reported Outcome Measures (PROMs) in Primary Care: An Observational Pilot Study of Seven Generic Instruments.” BMC Family Practice 15, no. 1: 88. https://doi.org/10.1186/1471-2296-15-88.
Welch, Garry, Alan M. Jacobson, and William H. Polonsky. 1997. “The Problem Areas in Diabetes Scale: An Evaluation of Its Clinical Utility.” Diabetes Care 20, no. 5: 760–66. http://dx.doi.org/10.2337/diacare.20.5.760.
Wiering, Bianca, Dolf de Boer, and Diana Delnoij. 2017. “Patient Involvement in the Development of Patient-Reported Outcome Measures: A Scoping Review.” Health Expectations 20, no. 1: 11–23. https://doi.org/10.1111/hex.12442.
Zimmermann, Jens. 2015. Hermeneutics A Very Short Introduction. Toronto: Oxford University Press.
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