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.

What your patient needs to know about a non-specific symptom pathway referral for suspected cancer.

BACKGROUND: Non-specific symptom (NSS) pathways were implemented in the UK in 2017 to address the needs of patients experiencing symptoms such as weight loss, fatigue, or GP 'gut feeling'. AIM: To explore patients' experiences of NSS pathways, and their potential support needs in terms of understanding and navigating these pathways. METHOD: This study employed ethnographic methods across four NHS trusts in England, including interviews with 28 patients and 28 professionals, patient shadowing, and clinical care observations, to examine NSS pathways for cancer diagnosis. Analysis focused on patient communication and understanding of care. RESULTS: Patients found it hard to understand why they were referred. Only a minority of patients appreciated that multiple organs were being investigated for cancer. Progressing through the pathway was also difficult to understand, particularly around who was making decisions and what would happen next. Investigations often resulted in incidental findings. Patients whose persistent symptoms were not explained were often unsure what to do following discharge. CONCLUSION: The findings resulted in recommended messages for GPs to support patients on referral to NSS pathways, including the nature of the pathway, the team that will be responsible for their care, the multiple organ systems that will potentially be investigated, and what will happen if they don't find a cancer. Without this support, 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.

Metabolomic Biomarkers in Blood Samples Identify Cancers in a Mixed Population of Patients with Nonspecific Symptoms.

PURPOSE: Early diagnosis of cancer is critical for improving patient outcomes, but cancers may be hard to diagnose if patients present with nonspecific signs and symptoms. We have previously shown that nuclear magnetic resonance (NMR) metabolomics analysis can detect cancer in animal models and distinguish between differing metastatic disease burdens. Here, we hypothesized that biomarkers within the blood metabolome could identify cancers within a mixed population of patients referred from primary care with nonspecific symptoms, the so-called "low-risk, but not no-risk" patient group, as well as distinguishing between those with and without metastatic disease. EXPERIMENTAL DESIGN: Patients (n = 304 comprising modeling, n = 192, and test, n = 92) were recruited from 2017 to 2018 from the Oxfordshire Suspected CANcer (SCAN) pathway, a multidisciplinary diagnostic center (MDC) referral pathway for patients with nonspecific signs and symptoms. Blood was collected and analyzed by NMR metabolomics. Orthogonal partial least squares discriminatory analysis (OPLS-DA) models separated patients, based upon diagnoses received from the MDC assessment, within 62 days of initial appointment. RESULTS: Area under the ROC curve for identifying patients with solid tumors in the independent test set was 0.83 [95% confidence interval (CI): 0.72-0.95]. Maximum sensitivity and specificity were 94% (95% CI: 73-99) and 82% (95% CI: 75-87), respectively. We could also identify patients with metastatic disease in the cohort of patients with cancer with sensitivity and specificity of 94% (95% CI: 72-99) and 88% (95% CI: 53-98), respectively. CONCLUSIONS: For a mixed group of patients referred from primary care with nonspecific signs and symptoms, NMR-based metabolomics can assist their diagnosis, and may differentiate both those with malignancies and those with and without metastatic disease. See related commentary by Van Tine and Lyssiotis, p. 1477.

Incidental findings in a referral pathway for non-specific cancer symptoms.

RATIONALE AND OBJECTIVES: To determine the prevalence of incidental findings and define the rate and outcomes of further investigations in a referral pathway for patients with non-specific cancer symptoms. MATERIAL AND METHODS: Incidental findings in each category of a structured report were documented and details of subsequent investigations were obtained from the local PACS and Electronic Patient Record system. RESULTS: 1034 patients were included. Of these, 11% were diagnosed with cancer. The majority of patients (95%) had at least one additional finding reported. The majority of these were minor, but in 140 cases (14%), additional findings were considered to be of clinical significance. Further investigations were performed in 330 patients who did not receive a diagnosis of cancer (32%). In 301 patients (29%), further investigations were normal or non-significant. In 75 cases (7%), ongoing surveillance was required. Specialist referral was recommended for 102 patients (10%) who did not receive a diagnosis of cancer. CONCLUSIONS: In this cohort, there was a high rate of non-significant incidental findings and normal further investigations. However, these risks are likely to be outweighed by the high number of cancer diagnoses and significant non-cancer findings.