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How does uncertainty shape patient experience in advanced illness? A secondary analysis of qualitative data.

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Etkind, Simon Noah 
Bristowe, Katherine 
Bailey, Katharine 
Selman, Lucy Ellen 
Murtagh, Fliss Em 


BACKGROUND: Uncertainty is common in advanced illness but is infrequently studied in this context. If poorly addressed, uncertainty can lead to adverse patient outcomes. AIM: We aimed to understand patient experiences of uncertainty in advanced illness and develop a typology of patients' responses and preferences to inform practice. DESIGN: Secondary analysis of qualitative interview transcripts. Studies were assessed for inclusion and interviews were sampled using maximum-variation sampling. Analysis used a thematic approach with 10% of coding cross-checked to enhance reliability. SETTING/PARTICIPANTS: Qualitative interviews from six studies including patients with heart failure, chronic obstructive pulmonary disease, renal disease, cancer and liver failure. RESULTS: A total of 30 transcripts were analysed. Median age was 75 (range, 43-95), 12 patients were women. The impact of uncertainty was frequently discussed: the main related themes were engagement with illness, information needs, patient priorities and the period of time that patients mainly focused their attention on (temporal focus). A typology of patient responses to uncertainty was developed from these themes. CONCLUSION: Uncertainty influences patient experience in advanced illness through affecting patients' information needs, preferences and future priorities for care. Our typology aids understanding of how patients with advanced illness respond to uncertainty. Assessment of these three factors may be a useful starting point to guide clinical assessment and shared decision making.



Uncertainty, communication, comorbidity, palliative care, qualitative research, terminal care, Adaptation, Psychological, Adult, Aged, Aged, 80 and over, Chronic Disease, Female, Humans, Male, Middle Aged, Needs Assessment, Palliative Care, Patient Preference, Qualitative Research, Uncertainty

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Palliat Med

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SAGE Publications
Simon Noah Etkind is funded as an Academic Clinical Fellow by the National Institute for Health Research. This article presents independent research funded by the National Institute for Health Research (NIHR) under the Programme Grants for Applied Research programme (RP-PG-1210-12015 – C-CHANGE: Delivering high quality and cost-effective care across the range of complexity for those with advanced conditions in the last year of life). Further information is available at The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, MRC, CCF, NETSCC, the NIHR Programme Grants for Applied Research or the Department of Health.