How is diagnostic uncertainty communicated and managed in real world primary care settings?

BACKGROUND: Managing diagnostic uncertainty is a major challenge in primary care due to factors such as the absence of definitive tests, variable symptom presentations and disease evolution. Maintaining patient trust during a period of investigative uncertainty, whilst minimising scope for diagnostic error is a challenge. Mismanagement can lead to diagnostic errors, treatment delays, and suboptimal patient outcomes. OBJECTIVE: Our aim was to explore how UK primary care physicians (GPs) address and communicate diagnostic uncertainty in practice. DESIGN: This qualitative study used video and audio-recordings. Verbatim transcripts were coded with a modified, validated tool to capture GPs' actions and communication in primary care consultations that included diagnostic uncertainty. The tool includes items relating to advice regarding new symptoms or symptom deterioration (sometimes called 'safety netting'). Video data was analysed to identify GP and patient body postures during and after the delivery of the management plan. PARTICIPANTS: All patient participants had a consultation with a GP, were over the age of 50 and had (1) at least one new presenting problem or (2) one persistent problem that was undiagnosed. APPROACH: Data collection occurred in GP-patient consultations during 2017-2018 across 7 practices in UK during 2017-2018. KEY RESULTS: GPs used various management strategies to address diagnostic uncertainty, including (1) symptom monitoring without treatment, (2) prescribed treatment with symptom monitoring, and (3) addressing risks that could arise from administrative tasks. GPs did not make management plans for potential treatment side effects. Specificity of uncertainty management plans varied among GPs, with only some offering detailed actions and timescales. The transfer of responsibility for the management plan to patients was usually delivered rather than negotiated, with most patients confirming acceptance before concluding the discussion. CONCLUSIONS: We offer guidance to healthcare professionals, improving awareness of using and communicating management plans for diagnostic uncertainty.

Personal and organisational health literacy in the non-specific symptom pathway for cancer: An ethnographic study.

INTRODUCTION: People being investigated for cancer face a wealth of complex information. Non-specific symptom pathways (NSS) were implemented in the United Kingdom in 2017 to address the needs of patients experiencing symptoms such as weight loss, fatigue or general practitioner 'gut feeling', who did not have streamlined pathways for cancer investigation. This study aimed to explore the health literacy skills needed by patients being investigated for cancer in NSS pathways. METHODS: This study employed ethnographic methods across four hospitals in England, including interviews, patient shadowing and clinical care observations, to examine NSS pathways for cancer diagnosis. We recruited 27 patients who were shadowed and interviewed during their care. We also interviewed 27 professionals. The analysis focused on patient communication and understanding, drawing on the concepts of personal and organisational health literacy. RESULTS: Our analysis derived six themes highlighting the considerable informational demands of the NSS pathway. Patients were required to understand complex blood tests and investigations in primary care and often did not understand why they were referred. The NSS pathway itself was difficult to understand with only a minority of patients appreciating that multiple organs were being investigated for cancer. The process of progressing through the pathway was also difficult to understand, particularly around who was making decisions and what would happen next. The results of investigations were complex, often including incidental findings. Patients whose persistent symptoms were not explained were often unsure of what to do following discharge. CONCLUSION: We have identified several potential missed opportunities for organisations to support patient understanding of NSS pathways which could lead to inappropriate help-seeking post-discharge. Patients' difficulties in comprehending previous investigations and findings could result in delays, overtesting or inadequately targeted investigations, hindering the effective use of their medical history. Third, patients' limited understanding of their investigations and results may impede their ability to engage in patient safety by reporting potential care errors. PATIENT OR PUBLIC CONTRIBUTION: Patient, public, clinical and policy representatives contributed to developing the research objectives through a series of meetings and individual conversations in preparation for the study. We have held several events in which patients and the public have had an opportunity to give feedback about our results, such as local interest groups in North London and academic conferences. A clinical contributor (J.-A. M.) was involved in data analysis and writing the manuscript.

The Role of Smoking Status in Making Risk-Informed Diagnostic Decisions in the Lung Cancer Pathway: A Qualitative Study of Health Care Professionals and Patients.

BACKGROUND: Lung cancer clinical guidelines and risk tools often rely on smoking history as a significant risk factor. However, never-smokers make up 14% of the lung cancer population, and this proportion is rising. Consequently, they are often perceived as low-risk and may experience diagnostic delays. This study aimed to explore how clinicians make risk-informed diagnostic decisions for never-smokers. METHODS: Qualitative interviews were conducted with 10 lung cancer diagnosticians, supported by data from interviews with 20 never-smoker lung cancer patients. The data were analyzed using a framework analysis based on the Model of Pathways to Treatment framework and data-driven interpretations. RESULTS: Participants described 3 main strategies for making risk-informed decisions incorporating smoking status: guidelines, heuristics, and potential harms. Clinicians supplemented guidelines with their own heuristics for never-smokers, such as using higher thresholds for chest X-ray. Decisions were easier for patients with high-risk symptoms such as hemoptysis. Clinicians worried about overinvestigating never-smoker patients, particularly in terms of physical and psychological harms from invasive procedures or radiation. To minimize unnecessary anxiety about lung cancer risk, clinicians made efforts to downplay this. Conversely, some patients found that this caused process harms such as delays and miscommunications. CONCLUSION: Improved guidance and methods of risk differentiation for never-smokers are needed to avoid diagnostic delays, overreassurance, and clinical pessimism. This requires an improved evidence base and initiatives to increase awareness among clinicians of the incidence of lung cancer in never-smokers. As the proportion of never-smoker patients increases, this issue will become more urgent. HIGHLIGHTS: Smoking status is the most common risk factor used by clinicians to guide decision making, and guidelines often focus on this factor.Some clinicians also use their own heuristics for never-smokers, and this becomes particularly relevant for patients with lower risk symptoms.Clinicians are also concerned about the potential harms and risks associated with deploying resources on diagnostics for never-smokers.Some patients find it difficult to decide whether or not to go ahead with certain procedures due to efforts made by clinicians to downplay the risk of lung cancer.Overall, the study highlights the complex interplay between smoking history, clinical decision making, and patient anxiety in the context of lung cancer diagnosis and treatment.