Uncertainty in health care: Towards a more systematic program of research.

OBJECTIVE To promote a more systematic approach to research on uncertainty in health care, and to explore promising starting points and future directions for this research. METHODS We examine three fundamental aspects of medical uncertainty that a systematic research program should ideally address: its nature, effects, and communication. We summarize key insights from past empirical research and explore existing conceptual models that can help guide future research. RESULTS A diverse body of past research on medical uncertainty has produced valuable empirical insights and conceptual models that provide useful starting points for future empirical and theoretical work. However, these insights need to be more fully developed and integrated to answer remaining questions about what uncertainty is, how it affects people, and how and why it should be communicated. CONCLUSION Uncertainty in health care is an extremely important but incompletely understood phenomenon. Improving our understanding of the many important aspects of uncertainty in health care will require a more systematic program of research based upon shared, integrative conceptual models and active, collaborative engagement of the broader research community. PRACTICE IMPLICATIONS A more systematic approach to investigating uncertainty in health care can help elucidate how the clinical communication of uncertainty might be improved.

[1]  Gail Geller,et al.  Tolerance for ambiguity: an ethics-based criterion for medical student selection. , 2013, Academic medicine : journal of the Association of American Medical Colleges.

[2]  Colin Camerer,et al.  Recent developments in modeling preferences: Uncertainty and ambiguity , 1992 .

[3]  D. Brashers Communication and Uncertainty Management. , 2001 .

[4]  Daniel E. Geer,et al.  Risk Aversion , 2012, IEEE Secur. Priv..

[5]  Paul K J Han,et al.  Communicating the Uncertainty of Harms and Benefits of Medical Interventions , 2007, Medical decision making : an international journal of the Society for Medical Decision Making.

[6]  Benjamin Djulbegovic,et al.  From efficacy to effectiveness in the face of uncertainty: indication creep and prevention creep. , 2011, JAMA.

[7]  Dan Levin,et al.  Ellsberg paradox: Ambiguity and complexity aversions compared , 2016 .

[8]  J. G. Hollands,et al.  The visual communication of risk. , 1999, Journal of the National Cancer Institute. Monographs.

[9]  R. Carleton The intolerance of uncertainty construct in the context of anxiety disorders: theoretical and practical perspectives , 2012, Expert review of neurotherapeutics.

[10]  Paul K. J. Han,et al.  Varieties of Uncertainty in Health Care , 2011 .

[11]  Lisa M. Schwartz,et al.  PSYCHOLOGICAL SCIENCE IN THE PUBLIC INTEREST Helping Doctors and Patients Make Sense of Health Statistics , 2022 .

[12]  Ruixun Zhang,et al.  The origin of risk aversion , 2014, Proceedings of the National Academy of Sciences.

[13]  M. Hogg Subjective Uncertainty Reduction through Self-categorization: A Motivational Theory of Social Identity Processes , 2000 .

[14]  M. Sebrechts Ignorance and Uncertainty: Emerging Paradigms , 1989 .

[15]  Annie T. Chen,et al.  Conflicting health information: a critical research need , 2015, Health expectations : an international journal of public participation in health care and health policy.

[16]  A. Babrow,et al.  Uncertainty, Value, Communication, and Problematic Integration , 2001 .

[17]  Paul K J Han,et al.  Conceptual, Methodological, and Ethical Problems in Communicating Uncertainty in Clinical Evidence , 2013, Medical care research and review : MCRR.

[18]  R. Carleton,et al.  Into the unknown: A review and synthesis of contemporary models involving uncertainty. , 2016, Journal of anxiety disorders.

[19]  George E. P. Box,et al.  Empirical Model‐Building and Response Surfaces , 1988 .

[20]  A. Tversky,et al.  Judgment under Uncertainty: Heuristics and Biases , 1974, Science.

[21]  G. Gordon,et al.  Physician expressions of uncertainty during patient encounters. , 2000, Patient education and counseling.

[22]  Marie Garland,et al.  The Medical, Personal, and Social Causes of Uncertainty in HIV Illness , 2003, Issues in mental health nursing.

[23]  E. Smets,et al.  Uncertainty in consultations about genetic testing for cancer: an explorative observational study. , 2018, Patient education and counseling.

[24]  T. Hak,et al.  Collusion in doctor-patient communication about imminent death: an ethnographic study , 2000, BMJ : British Medical Journal.

[25]  Jay Katz,et al.  The Silent World of Doctor and Patient , 1984 .

[26]  K. Durrheim,et al.  Tolerance of ambiguity as a content specific construct , 1997 .

[27]  A. Babrow,et al.  Problematic Integration Theory , 2015, Engaging Theories in Interpersonal Communication.

[28]  Cynthia Stohl,et al.  Social support messages and the management of uncertainty in the experience of breast cancer: An application of problematic integration theory , 1996 .

[29]  Stella K Kang,et al.  Navigating Uncertainty in the Management of Incidental Findings. , 2019, Journal of the American College of Radiology : JACR.

[30]  M. Lepper,et al.  The Construction of Preference: When Choice Is Demotivating: Can One Desire Too Much of a Good Thing? , 2006 .

[31]  H. Tristram Engelhardt,et al.  The Foundations of Bioethics , 1996 .

[32]  D. R. Shaffer,et al.  Dogmatism and tolerance for ambiguity as determinants of differential reactions to cognitive inconsistency. , 1974, Journal of personality and social psychology.

[33]  T. Beauchamp,et al.  Principles of biomedical ethics , 1991 .

[34]  S. Timmermans,et al.  Evidence-based medicine, clinical uncertainty, and learning to doctor. , 2001, Journal of health and social behavior.

[35]  M. Mishel Reconceptualization of the uncertainty in illness theory. , 1990, Image--the journal of nursing scholarship.

[36]  Max Henrion,et al.  Uncertainty: A Guide to Dealing with Uncertainty in Quantitative Risk and Policy Analysis , 1990 .

[37]  A. Babrow,et al.  The many meanings of uncertainty in illness: toward a systematic accounting. , 1998, Health communication.

[38]  Michael Smithson,et al.  Ignorance and Science , 1993 .

[39]  K. Ormond,et al.  Genetic counselors' perceptions of uncertainty in pretest counseling for genomic sequencing: A qualitative study , 2019, Journal of genetic counseling.

[40]  Steven Joffe,et al.  A Taxonomy of Medical Uncertainties in Clinical Genome Sequencing , 2017, Genetics in Medicine.

[41]  Heidi Carmen Howard,et al.  Mapping uncertainty in genomics , 2018 .

[42]  Adrian Furnham,et al.  Tolerance of Ambiguity: A Review of the Recent Literature , 2013 .

[43]  A. Babrow Meeting the Challenges of Communication and Uncertainty in Medical Care , 2020 .

[44]  Glyn Elwyn,et al.  Shared decision-making as an existential journey: Aiming for restored autonomous capacity. , 2016, Patient education and counseling.

[45]  Mike Pearson,et al.  Visualizing Uncertainty About the Future , 2022 .

[46]  D. Bowen,et al.  Patients' perspectives of variants of uncertain significance and strategies for uncertainty management , 2019, Journal of genetic counseling.

[47]  P. Gulbrandsen The possible impact of vulnerability on clinical communication: Some reflections and a call for empirical studies. , 2018, Patient education and counseling.

[48]  W. Bean The Student-Physician: Introductory Studies in the Sociology of Medical Education. , 1958 .

[49]  L. Sjöberg Risk perception is not what it seems: The psychometric paradigm revisited , 2003 .

[50]  R. Sorrentino,et al.  The Uncertain Mind: Individual Differences in Facing the Unknown , 2002 .

[51]  I. Lipkus Numeric, Verbal, and Visual Formats of Conveying Health Risks: Suggested Best Practices and Future Recommendations , 2007, Medical decision making : an international journal of the Society for Medical Decision Making.

[52]  J. Levenkron,et al.  Does physician uncertainty affect patient satisfaction? , 1988, Journal of General Internal Medicine.

[53]  A. Babrow,et al.  Removal of Asperger’s syndrome from the DSM V: community response to uncertainty , 2016, Health communication.

[54]  C. Berger,et al.  SOME EXPLORATIONS IN INITIAL INTERACTION AND BEYOND: TOWARD A DEVELOPMENTAL THEORY OF INTERPERSONAL COMMUNICATION , 1975 .

[55]  D. Gilbert,et al.  Quantity versus uncertainty: When winning one prize is better than winning two , 2007 .

[56]  Jane Ogden,et al.  Doctors expressions of uncertainty and patient confidence. , 2002, Patient education and counseling.

[57]  Philippe N. Tobler,et al.  Cognitive biases associated with medical decisions: a systematic review , 2016, BMC Medical Informatics and Decision Making.

[58]  Kenneth L Kehl,et al.  Association of Actual and Preferred Decision Roles With Patient-Reported Quality of Care: Shared Decision Making in Cancer Care. , 2015, JAMA oncology.

[59]  A. Kruglanski,et al.  Motivated closing of the mind: "seizing" and "freezing". , 1996, Psychological review.

[60]  D. Ellsberg Decision, probability, and utility: Risk, ambiguity, and the Savage axioms , 1961 .

[61]  R. Moser,et al.  Sources of Uncertainty and Their Association with Medical Decision Making: Exploring Mechanisms in Fanconi Anemia , 2013, Annals of behavioral medicine : a publication of the Society of Behavioral Medicine.

[62]  G. Elwyn,et al.  Implementing shared decision-making: consider all the consequences , 2015, Implementation Science.

[63]  D. Brashers,et al.  Medical, Personal, and Social Forms of Uncertainty Across the Transplantation Trajectory , 2010, Qualitative health research.

[64]  Walid A. Afifi,et al.  Toward a Theory of Motivated Information Management , 2004 .

[65]  D. Redelmeier,et al.  Medical decision making in situations that offer multiple alternatives. , 1995, JAMA.

[66]  Glyn Elwyn,et al.  Communicating uncertainty can lead to less decision satisfaction: a necessary cost of involving patients in shared decision making? , 2011, Health expectations : an international journal of public participation in health care and health policy.

[67]  P. Atkinson Training for certainty. , 1984, Social science & medicine.

[68]  S Holm,et al.  Principles of Biomedical Ethics, 5th edn. , 2002 .

[69]  Gerd Gigerenzer,et al.  Transparency in Risk Communication , 2008, Annals of the New York Academy of Sciences.

[70]  P. Han The Need for Uncertainty: A Case for Prognostic Silence , 2017, Perspectives in biology and medicine.

[71]  Frederick B. Hodges,et al.  Training for Uncertainty , 1993 .

[72]  A. Babrow,et al.  Communication and Problematic Integration: Understanding Diverging Probability and Value, Ambiguity, Ambivalence, and Impossibility , 1992 .

[73]  Stuart Peacock,et al.  Communicating uncertainty in cancer prognosis: A review of web-based prognostic tools. , 2019, Patient education and counseling.

[74]  M. Conner,et al.  Predicting health behaviour : research and practice with social cognition models , 2005 .

[75]  E. Smets,et al.  Disclosing the Uncertainty Associated with Prognostic Estimates in Breast Cancer , 2017, Medical decision making : an international journal of the Society for Medical Decision Making.

[76]  Michael Siegrist,et al.  A New Look at the Psychometric Paradigm of Perception of Hazards , 2005, Risk analysis : an official publication of the Society for Risk Analysis.

[77]  J. Katz,et al.  Why doctors don't disclose uncertainty. , 1984, The Hastings Center report.

[78]  M. Mishel Uncertainty in illness. , 1988, Image--the journal of nursing scholarship.

[79]  R. Lipshitz,et al.  Coping with Uncertainty: A Naturalistic Decision-Making Analysis , 1997 .

[80]  Gordon H Guyatt,et al.  Epistemologic inquiries in evidence-based medicine. , 2009, Cancer control : journal of the Moffitt Cancer Center.

[81]  M. Dugas,et al.  An investigation of appraisals in individuals vulnerable to excessive worry: the role of intolerance of uncertainty , 2008, Cognitive Therapy and Research.

[82]  Paul K. J. Han,et al.  Tolerance of uncertainty: Conceptual analysis, integrative model, and implications for healthcare. , 2017, Social science & medicine.

[83]  R. Thaler,et al.  Anomalies: Risk Aversion , 2001 .

[84]  Paul K. J. Han,et al.  Presenting quantitative information about decision outcomes: a risk communication primer for patient decision aid developers , 2013, BMC Medical Informatics and Decision Making.

[85]  Jessica S. Ancker,et al.  The Practice of Informatics: Design Features of Graphs in Health Risk Communication: A Systematic Review , 2006, J. Am. Medical Informatics Assoc..

[86]  B. Zikmund‐Fisher The Right Tool Is What They Need, Not What We Have , 2013, Medical care research and review : MCRR.

[87]  J S Blumenthal-Barby,et al.  Cognitive Biases and Heuristics in Medical Decision Making , 2015, Medical decision making : an international journal of the Society for Medical Decision Making.

[88]  Jr. A. P. Mac Donald,et al.  Revised Scale for Ambiguity Tolerance: Reliability and Validity , 1970 .

[89]  M. Deane The Siren Songs of Science : Toward a Taxonomy of Scientific Uncertainty for Decisionmakers , 2018 .

[90]  E. Weber,et al.  A Domain-Specific Risk-Attitude Scale: Measuring Risk Perceptions and Risk Behaviors , 2002 .

[91]  A. Tversky,et al.  The framing of decisions and the psychology of choice. , 1981, Science.

[92]  K. Pickles,et al.  General Practitioners’ Experiences of, and Responses to, Uncertainty in Prostate Cancer Screening: Insights from a Qualitative Study , 2016, PloS one.

[93]  Bilal M. Ayyub,et al.  Elicitation of expert opinions for uncertainty and risks: Answer to the Book Review by Roger M. Cooke , 2003, Fuzzy Sets Syst..

[94]  Mitchell J. Small,et al.  Best Practice Approaches for Characterizing, Communicating, and Incorporating Scientific Uncertainty in Decision Making , 2009 .

[95]  R. Fox,et al.  The evolution of medical uncertainty. , 1980, The Milbank Memorial Fund quarterly. Health and society.

[96]  N. Arora,et al.  Why do some patients prefer to leave decisions up to the doctor: lack of self-efficacy or a matter of trust? , 2013, Journal of Cancer Survivorship.

[97]  S. Greenland,et al.  Uncertainty in Clinical Medicine , 2011 .

[98]  A. Babrow,et al.  Generally unseen challenges in uncertainty management: An application of problematic integration theory , 2015 .

[99]  P. Helft Necessary collusion: prognostic communication with advanced cancer patients. , 2005, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[100]  E. Beresford,et al.  Uncertainty and the shaping of medical decisions. , 1991, The Hastings Center report.

[101]  T. Strout,et al.  Tolerance of uncertainty: A systematic review of health and healthcare-related outcomes. , 2018, Patient education and counseling.

[102]  N. Bansback,et al.  Communicating Uncertainty in Benefits and Harms: A Review of Patient Decision Support Interventions , 2017, The Patient - Patient-Centered Outcomes Research.

[103]  Walid A. Afifi,et al.  Expanding the Role of Emotion in the Theory of Motivated Information Management , 2009 .

[104]  Paul Slovic,et al.  Perception of risk: Reflections on the psychometric paradigm , 1992 .

[105]  Jerome R. Ravetz,et al.  Uncertainty and Quality in Science for Policy , 1990 .

[106]  S. Haas,et al.  Communication in the management of uncertainty: The case of persons living with HIV or AIDS , 2000 .

[107]  A. Kruglanski Lay epistemics and human knowledge , 1989 .

[108]  E. Smets,et al.  How long do I have? Observational study on communication about life expectancy with advanced cancer patients. , 2017, Patient education and counseling.

[109]  Jürgen Kasper,et al.  Decision‐related uncertainties perceived by people with cancer—modelling the subject of shared decision making , 2008, Psycho-oncology.

[110]  William B. Gudykunst A Model of Uncertainty Reduction in Intercultural Encounters , 1985 .

[111]  P. Kohn Authoritarianism, rebelliousness, and their correlates among British undergraduates. , 1974, The British journal of social and clinical psychology.

[112]  Keigo Inukai,et al.  Complexity Aversion: Influences of Cognitive Abilities, Culture and System of Thought , 2015 .