How Patients with an Uncertain Diagnosis Experience Intolerance of Uncertainty: A Grounded Theory Study
Open accessAbstract
PURPOSE: To develop a conceptual framework to explain how patients with uncertain diagnoses experience intolerance of uncertainty (IU) in order to achieve an in-depth understanding of the process of facing uncertainty in this population. PATIENTS AND METHODS: A grounded theory study using semi-structured interviews was conducted with 21 patients with uncertain diagnoses in China from December 2018 to March 2019. The coding process followed the procedures of Strauss and Corbin: open coding, axial coding, and selective coding. RESULTS: We developed a conceptual framework called 'Facing an Uncertain Diagnosis'. This framework considers not only the external and internal context of IU generation but also the ongoing process of how IU impacts patients' psychological status, cognitive response, behavior, and decision making. CONCLUSION: We suggest that healthcare professionals should be aware of the high level of IU and its psychological, cognitive, and behavioral manifestations in patients with uncertain diagnoses. Healthcare professionals should also be more cautious in shared decision making with patients with uncertain diagnoses.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
Qualitative research on how individuals with anxiety perceive uncertainty remains limited.
“While many studies have linked uncertainty to anxiety (Buhr & Dugas, 2006;Kim et al., 2016) and shown a positive correlation ( Boswell et al., 2013; Chen & Hong, 2010), qualitative research on how individuals with anxiety perceive uncertainty remains limited (Yang et al., 2021).”
From Exploring anxiety, uncertainty perception, treatment experiences and coping strategies: An interpretative phenomenological analysis. (2025) · cites this paper as Yang et al., 2021
The Limitations section (page unavailable) calls this the first study to develop a framework for how patients with uncertain diagnoses who are intolerant of uncertainty face uncertainty. That supports a research gap for this specific patient group, but not the broader claim that qualitative research on how individuals with anxiety perceive uncertainty is limited. (LLM, conf=0.82)
Experimental — accuracy not yet measured
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
Tong, A., Sainsbury, P., & Craig, J. (2007) · International Journal for Quality in Health Care · doi:10.1093/intqhc/mzm042 · Cited by 42,509 · see citing works
Into the unknown: A review and synthesis of contemporary models involving uncertainty
Carleton, R. N. (2016) · Journal of Anxiety Disorders · doi:10.1016/j.janxdis.2016.02.007 · Cited by 1,104 · see citing works
The role of fear of anxiety and intolerance of uncertainty in worry: An experimental manipulation
Buhr, K., & Dugas, M. J. (2009) · Behaviour Research and Therapy · doi:10.1016/j.brat.2008.12.004 · Cited by 334 · see citing works
Challenges When Using Grounded Theory
Timonen, V., Foley, G., & Conlon, C. (2018) · International Journal of Qualitative Methods · doi:10.1177/1609406918758086 · Cited by 332 · see citing works
Defining and Measuring Diagnostic Uncertainty in Medicine: A Systematic Review
Bhise, V., Rajan, S. S., Sittig, D. F., Morgan, R. O., Chaudhary, P., & Singh, H. (2017) · Journal of General Internal Medicine · doi:10.1007/s11606-017-4164-1 · Cited by 308 · cited 1× · see citing works
“IU has received increased attention in recent years.(8) It is regarded as a critical construct in generalized anxiety and a causal mechanism Correspondence: Zheng Zhu School of Nursing, Fudan University, Shanghai, China; and Director of Fudan University Centre for Evidence-based Nursing: A Joanna Briggs Institute Cent…”
Dar, K. A., Iqbal, N., & Mushtaq, A. (2017) · Asian Journal of Psychiatry · doi:10.1016/j.ajp.2017.04.017 · Cited by 199 · see citing works
Hebert, E. A., & Dugas, M. J. (2019) · Cognitive and Behavioral Practice · doi:10.1016/j.cbpra.2018.07.007 · Cited by 165 · see citing works
Intolerance of uncertainty as a vulnerability factor for excessive and inflexible avoidance behavior
Flores, A., López, F. J., Vervliet, B., & Cobos, P. L. (2018) · Behaviour Research and Therapy · doi:10.1016/j.brat.2018.02.008 · Cited by 155 · see citing works
Uncertainty and psychological adjustment in patients with lung cancer
Kurita, K., Garon, E. B., Stanton, A. L., & Meyerowitz, B. E. (2013) · Psycho-Oncology · doi:10.1002/pon.3155 · Cited by 132 · see citing works
Clarifying the unique associations among intolerance of uncertainty, anxiety, and depression *
Jensen, D., Cohen, J. N., Mennin, D. S., Fresco, D. M., & Heimberg, R. G. (2016) · Cognitive Behaviour Therapy · doi:10.1080/16506073.2016.1197308 · Cited by 101 · see citing works
Martín, C. S., Jacobs, B., & Vervliet, B. (2019) · Behaviour Research and Therapy · doi:10.1016/j.brat.2019.103526 · Cited by 100 · see citing works
Gillett, C. B., Bilek, E. L., Hanna, G. L., & Fitzgerald, K. D. (2018) · Clinical Psychology Review · doi:10.1016/j.cpr.2018.01.007 · Cited by 99 · see citing works
Bhise, V., Meyer, A. N. D., Menon, S., Singhal, G., Street, R. L., Giardina, T. D., & Singh, H. (2017) · International Journal for Quality in Health Care · doi:10.1093/intqhc/mzx170 · Cited by 96 · see citing works
Self-reported intolerance of uncertainty and behavioural decisions
Carleton, R. N., Duranceau, S., Shulman, E. P., Zerff, M. R., Gonzales, J., & Mishra, S. (2015) · Journal of Behavior Therapy and Experimental Psychiatry · doi:10.1016/j.jbtep.2015.12.004 · Cited by 89 · see citing works
Alschuler, K. N., & Beier, M. L. (2015) · International Journal of MS Care · doi:10.7224/1537-2073.2014-044 · Cited by 76 · see citing works
Counsell, A., Furtado, M., Iorio, C., Anand, L., Canzonieri, A., Fine, A., Fotinos, K., Epstein, I., & Katzman, M. A. (2017) · Psychiatry Research · doi:10.1016/j.psychres.2017.02.046 · Cited by 73 · see citing works
Hunt, C., Cooper, S. E., Hartnell, M. P., & Lissek, S. (2019) · Journal of Abnormal Psychology · doi:10.1037/abn0000422 · Cited by 71 · see citing works
Eisenberg, S., Kurita, K., Taylor‐Ford, M., Agus, D. B., Gross, M. E., & Meyerowitz, B. E. (2014) · Psycho-Oncology · doi:10.1002/pon.3590 · Cited by 63 · see citing works
Kusec, A., Tallon, K., & Koerner, N. (2016) · Cognitive Behaviour Therapy · doi:10.1080/16506073.2016.1171391 · Cited by 53 · see citing works
Wahlund, T., Andersson, E., Jolstedt, M., Perrin, S., Vigerland, S., & Serlachius, E. (2020) · Cognitive and Behavioral Practice · doi:10.1016/j.cbpra.2019.06.002 · Cited by 49 · see citing works
Neville, A., Kopala‐Sibley, D. C., Soltani, S., Asmundson, G. J. G., Jordan, A. L., Carleton, R. N., Yeates, K. O., Schulte, F., & Noel, M. E. (2020) · Pain · doi:10.1097/j.pain.0000000000002009 · Cited by 43 · see citing works
Kim, M. K., Lee, K. S., Kim, B., Choi, T. K., & Lee, S.-H. (2016) · Psychiatry Investigation · doi:10.4306/pi.2016.13.2.196 · Cited by 40 · see citing works
Intolerance of Uncertainty and Immediate Decision-Making in High-Risk Situations
Jensen, D., Kind, A. J., Morrison, A. S., & Heimberg, R. G. (2014) · Journal of Experimental Psychopathology · doi:10.5127/jep.035113 · Cited by 38 · see citing works
Rasmussen, N. H., Smith, S. A., Maxson, J. A., Bernard, M., Cha, S. S., Agerter, D. C., & Shah, N. D. (2013) · Primary care diabetes · doi:10.1016/j.pcd.2013.04.006 · Cited by 37 · see citing works
Intolerance of uncertainty mediates the relationship between adult attachment and worry
Wright, C. J., Clark, G. I., Rock, A. J., & Coventry, W. L. (2017) · Personality and Individual Differences · doi:10.1016/j.paid.2017.02.039 · Cited by 36 · see citing works
Examination of the Intolerance of Uncertainty Construct in Youth With Generalized Anxiety Disorder
Cowie, J., Clementi, M. A., & Alfano, C. A. (2018) · Journal of Clinical Child & Adolescent Psychology · doi:10.1080/15374416.2016.1212358 · Cited by 34 · see citing works
Does Intolerance of Uncertainty Affect the Magnitude of Limitations or Pain Intensity?
Donthula, D., Kortlever, J. T. P., Ring, D., Donovan, E. E., Reichel, L. M., & Vagner, G. A. (2019) · Clinical Orthopaedics and Related Research · doi:10.1097/corr.0000000000001042 · Cited by 33 · see citing works
Yang, Z. (2012) · Behavioural and Cognitive Psychotherapy · doi:10.1017/s1352465812000975 · Cited by 25 · see citing works
Self-citationTalkovsky, A. M., & Norton, P. J. (2018) · Journal of Affective Disorders · doi:10.1016/j.jad.2018.04.104 · Cited by 24 · see citing works
Group CBT for GAD: The Role of Change in Intolerance of Uncertainty in Treatment Outcomes.
Torbit, L., & Laposa, J. M. (2016) · International Journal of Cognitive Therapy · doi:10.1521/ijct_2016_09_17 · Cited by 22 · see citing works
Yan, C., Lindgren, H., & Nieves, J. C. (2018) · Autonomous Agents and Multi-Agent Systems · doi:10.1007/s10458-018-9396-x · Cited by 16 · see citing works
Laposa, J. M., & Fracalanza, K. (2019) · Behavioural and Cognitive Psychotherapy · doi:10.1017/s1352465819000249 · Cited by 11 · see citing works
Uncertain diagnoses in a children’s hospital: patient characteristics and outcomes
Sump, C., Marshall, T. L., Ipsaro, A. J., Patel, S. J., Warner, D. C., Brady, P. W., & Hagedorn, P. A. (2020) · Diagnosis · doi:10.1515/dx-2019-0058 · Cited by 9 · cited 1× · see citing works
“Large numbers of patients are repeatedly hospitalized to obtain a certain diagnosis and treatment.(1,2) Uncertainty is inevitable, and dealing with uncertainty is part of daily life.”
Depressive Realism and Attributional Style: Replication and Extension
Moore, M., Dawkins, M. R., Fisher, J. W., & Fresco, D. M. (2016) · International Journal of Cognitive Therapy · doi:10.1521/ijct_2016_09_03 · Cited by 7 · see citing works
Flagged first, then by citations
Research works printed but not linked: 5
- [8]Bhise V, Rajan SS, Sittig DF, et al. Defining and measuring diagnostic uncertainty in medicine: a systematic review. J Gen Intern Med. 2018; 33(1): 103– 115. 28936618 PMC5756158
- [21]Zhao X, Zhu Z, Yu M, et al. The experience of intolerance of uncertainty in patients with no clear diagnosis: a qualitative study. Chinese J Nursx. 2020; 55(04): 488– 493.
- [22]Blumer H. Symbolic Interactionism: Perspective and Method. University of California Press; 1986.
- [23]Morse JM, Stern PN, Corbin J, et al. Developing Grounded Theory: The Second Generation. Walnut Creek, Calif: Routledge; 2009.
- [25]Strauss AL, Corbin JM. Grounded theory in practice. Contemp Sociol. 1997; 28(4): 296.
Cited by
Sorted by citations
Wang, J., Zheng, N., Wan, H., Yao, Q., Jia, S., Zhang, X., Fu, S., Ruan, J., He, G., Chen, X., et al. (2024) · The Lancet Digital Health · doi:10.1016/s2589-7500(24)00085-2 · Cited by 51 · see citing works
Psychosocial impact at the time of a rare disease diagnosis
Benito-Lozano, J., Arias-Merino, G., Gómez-Martínez, M., Arconada-López, B., Ruiz-García, B., de la Paz, M. P., & Alonso‐Ferreira, V. (2023) · PLoS ONE · doi:10.1371/journal.pone.0288875 · Cited by 39 · see citing works
“When it involves a disease whose natural history is known, these people feel relieved at finally having the possibility of being better understood, being able to better manage their life, adapting to a new normality, and taking pragmatic decisions based on their prognosis [5, 6, 8, 15, 31, 39].”
BackgroundEnhancing Healthcare for Sarcoma Patients: Lessons from a Diagnostic Pathway Efficiency Analysis
Elyes, M., Heesen, P., Schelling, G., Bode‐Lesniewska, B., Studer, G., & Fuchs, B. (2023) · Cancers · doi:10.3390/cancers15194892 · Cited by 14 · see citing works
“Moreover, aside from its direct impact on survival, a shorter total interval is also desirable due to its influence on patient well-being in cases where the diagnosis remains uncertain [48].”
BackgroundPatient Toward Physician Occupational Stigma Scale: Development of the Chinese Version
Fan, Z., Chen, H., Wu, H., & Xinghai, Z. (2022) · Psychology Research and Behavior Management · doi:10.2147/prbm.s375032 · Cited by 5 · see citing works
“Individuals with high intolerance of uncertainty (IU) tend to appraise all situation types as more disconcerting, exaggerate the condition, doubt the authenticity of the medical diagnosis, question physicians’ decisions, and even avoid or refuse to communicate with physicians.(20,21) Moreover, patients’ perception, co…”
BackgroundLong covid and mental and physical health: A cross‐sectional study of adults in California
Mason, T. B., Knight, T. K., Lee, R. C., Herzig, S. E., Meeker, D., & Doctor, J. N. (2024) · Public Health Challenges · doi:10.1002/puh2.152 · Cited by 4 · see citing works
“Moreover, receiving a diagnosis may lead to the start of treatment and the potential alleviation of symptoms [31].”
A novel likely pathogenic CLCN5 variant in Dent’s disease
Hayward, S., Norton, J., Bownass, L., Platt, C., Ambrose, J. C., Arumugam, P., Bevers, R. P. J., Bleda, M., Boardman-Pretty, F., Boustred, C. R., et al. (2023) · BMC Nephrology · doi:10.1186/s12882-023-03292-1 · Cited by 4 · see citing works
“Diagnostic uncertainty places a significant psychological burden on patients and can lead to over-investigation [17].”
BackgroundParlar‐Yazıcı, A., Norman, A., & Bacon, A. (2025) · Counselling and Psychotherapy Research · doi:10.1002/capr.12872 · Cited by 2 · see citing works
“While many studies have linked uncertainty to anxiety (Buhr & Dugas, 2006; Kim et al., 2016) and shown a positive correlation (Boswell et al., 2013; Chen & Hong, 2010 ), qualitative research on how individuals with anxiety perceive uncertainty remains limited (Yang et al., 2021 ).”
Defenbaugh, N. L. (2024) · Qualitative Inquiry · doi:10.1177/10778004241282298 · Cited by 2 · see citing works
Reeve, W., Wong, C., Brindisino, F., Rossettini, G., & Chester, R. (2026) · Musculoskeletal Science and Practice · doi:10.1016/j.msksp.2026.103639 · Cited by 1 · see citing works
Gao, P. Z., Wu, H., Fan, Z., & Tao, M. (2023) · Psychology Research and Behavior Management · doi:10.2147/prbm.s413821
“This may cause people’s deficient confidence in physicians’ professionalism, doubt about the reasonability of treatment, and even suspicion of the authenticity of diagnosis.(32) Accordingly, we extrapolated that IU could negatively predict trust in physicians.”
BackgroundMoghaddam-Tabrizi, F., Noori, S., & Sharafkhani, R. (2024) · Indian Journal of Gynecologic Oncology · doi:10.1007/s40944-024-00803-2
“…about illness is widely recognized as a common and important source of psychosocial distress among cancer survivors [18], and studies have shown that increased uncertainty negatively affects cancer patients' psychological adjustment [19, 20], health behaviors [21], and quality of life [22, 23].”
Burgos, I., Cortez-González, L. C., Leura, D. S., González, S. C. E., & Hernández, P. E. T. (2024) · Horizonte de enfermeria · doi:10.7764/horiz_enferm.35.1.119-128
Beyond the Physical: The Mental Health Toll of Delayed Blood Work in Global Health Disparities
Byeon, H. (2025) · International Journal of Public Health · doi:10.3389/ijph.2025.1608382
Lived experiences of women with fibromyalgia in Türkiye: A qualitative study
Demirkol, H., Balbaloğlu, Ö., & Yaşar, E. (2025) · Journal of Back and Musculoskeletal Rehabilitation · doi:10.1177/10538127251387823
“35 Eliminating this uncertainty through diagnosis provides mental relief for patients, helping them distinguish between themselves and their illness, make sense of their experiences, and maintain hope for treatment.”
van Reenen, E. C., Niemeijer, A. R., Visser, L. H., de Beukelaar, J. W. K., van Oosten, B. W., Frequin, S. T. F. M., Hoogervorst, E. L. J., & van Nistelrooij, I. A. M. (2025) · Qualitative Research in Medicine & Healthcare · doi:10.1016/j.qrmh.2025.100031
“Research shows that patients with inherently uncertain diagnoses, prognoses, or effects of treatment, experience higher levels of “ intolerance of uncertainty ”— negative responses to a lack of clear information — than populations with clear diagnoses and treatment plans (Yang et al., 2021).”
Intolerance of Uncertainty in Young Researchers: A Qualitative Study
Kaya, Y., Satıcı, S. A., Kütük, H., Satıcı, B., & Deniz, M. E. (2025) · Abant İzzet Baysal Üniversitesi Eğitim Fakültesi Dergisi · doi:10.17240/aibuefd.2025..-1698610
“Existing qualitative studies have largely focused on intolerance of uncertainty in clinical populations (Parlar-Yazıcı et al., 2021; Quinlan et al., 2021; Stephens et al., 2021; Yang et al., 2021).”
Ghimire, B., Rayala, S., Doherty, M., Poudel, A., Sapkota, S., Ranger, M., & Srirama, S. (2026) · Paediatric and Neonatal Pain · doi:10.1002/pne2.70024
- Authors
- Yang, Z., Zhao, X., Zhu, Z., Fu, Y., & Hu, Y.
- Affiliations
- Fudan University (CN)
- Peking Union Medical College Hospital (CN)
- Dali University (CN)
- Corresponding author
- Zhu, Zheng
- Venue
- Psychology Research and Behavior Management
- Publisher
- Informa UK Limited
- Published
- 2021-08
- Volume
- Volume 14
- Pages
- 1269-1279
- ISSN
- 1179-1578 (ISSN-L)
- PMC
- PMC8367199
- OpenAlex
- W3192966265
- Cited by
- 17
- References
- 34
- Citations by year
- 2026: 2 · 2025: 4 · 2024: 6 · 2023: 4 · 2022: 1
- FWCI
- 3.09
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- Psychology Research and Behavior Management (publishedVersion, cc-by-nc)
- PubMed Central (publishedVersion, cc-by-nc)
- PubMed (publishedVersion)
- Dove Medical Press (Taylor and Francis Group) (submittedVersion, cc-by-nc)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Topics
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Health Sciences › Medicine › Family Practice › Clinical Reasoning and Diagnostic Skills
- Health Sciences › Medicine › Psychiatry and Mental health › Psychosomatic Disorders and Their Treatments
- Keywords
- intolerance of uncertainty, diagnostic uncertainty, patient experience, conceptual framework, psychological impact, cognitive responses, decision-making, shared decision-making, coping with uncertainty
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
