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.

Assessing awareness of blood cancer symptoms and barriers to symptomatic presentation: measure development and results from a population survey in the UK.

BACKGROUND: Low levels of cancer awareness may contribute to delays in seeking medical help and subsequent delays in diagnosis. For blood cancer this may be a particularly prominent problem due to the high prevalence of undifferentiated symptoms such as bodily pain, weakness, nausea and weight loss, resulting in low symptom awareness. The delay is exacerbated by the dismissal of similar symptoms which are often interpreted as mild disease, resulting in multiple consultations prior to diagnosis. This study describes the development of a Cancer Awareness Measure for Blood Cancer (Blood CAM) and presents results from a population-representative survey using the measure. METHODS: A rapid systematic review identified constructs relevant to blood cancer. Items were taken from previous awareness measures and other literature and reviewed by expert groups including health care professionals and patients. Cognitive interviews were conducted with ten members of the public to check comprehension and clarity. A total sample of 434 participants completed the survey at Time 1 and n = 302 at Time 2 (two weeks later). RESULTS: Internal reliability was high across the different constructs included in the questionnaire (> 0.70) and test-retest reliability was moderate to good (0.49-0.79). The most commonly recognised blood cancer symptoms were unexplained weight loss (68.9%) and unexplained bleeding (64.9%) and the least commonly recognised symptoms were night sweats (31.3%) breathlessness and rash/itchy skin (both 44%). In terms of symptom experience, fatigue was the most commonly reported symptom (26.7%) followed by night sweats (25.4%). Exploratory factor analysis of barriers to presenting at primary care revealed three distinct categories of barriers; emotional, external/practical and service/healthcare professional related. Service and emotional barriers were most common. CONCLUSIONS: We developed a valid and reliable tool to assess blood cancer awareness and showed variable awareness of blood cancer symptoms which can help target public health campaigns. We also incorporated additional measures (e.g. confidence to re-consult, ability to understand symptoms) that could be used to tailor public messaging for blood cancer and for other harder to suspect and diagnose cancers.

Using an electronic safety netting tool designed to improve safety with respect to cancer referral in primary care: a qualitative service evaluation using rapid appraisal methods.

BACKGROUND: This evaluation assesses the impact of an electronic safety netting software (E-SN) package, C the Signs, in primary care services across five boroughs in North East London (NEL). AIM: This study evaluates the use of E-SN software in primary care, examining its benefits and barriers, safety implications, and overall impact on individual and practice usage. DESIGN AND SETTING: The study is based on semi-structured interviews with 21 clinical and non-clinical members of staff from all primary care services using the software in NEL. METHOD: Semi-structured interviews were conducted to gather data on individual use of the software, safety implications and practice use of features such as the monitoring dashboard. Data were analysed using a rapid qualitative methodology. RESULTS: Two approaches to E-SN software adoption were reported: whole practice adoption and self-directed use. Practices benefitted from shared responsibility for safety netting and using software to track patients' progress in secondary care. Adoption was affected by information technology and administrative resources. Decision-support tools were used infrequently due to a lack of appreciation for their benefits. Selective adoption of different E-SN functions restricted its potential impact on early diagnosis. CONCLUSION: The use of E-SN software in primary care services in NEL varied among participants. While some found it to be beneficial, others were sceptical of its impact on clinical decision-making. Nonetheless, the software was found to be effective in managing referral processes and tracking patients' progress in other points of care.

Temporal structures that determine consistency and quality of care: a case study in hyperacute stroke services.

BACKGROUND: Temporal structuring is determined by practices and social norms and affects the quality and timing of care. In this case study of hyperacute stroke wards which provide initial stroke investigation, treatment and care, we explored temporal structuring patterns to explain how these may affect quality of care. METHODS: This paper presents a thematic analysis of qualitative interviews with hyperacute stroke staff (n=76), non-participant observations (n=41, ~102 hours) and documentary analysis of the relevant service standards guidance. We used an inductive coding process to generate thematic findings around the concept of temporal structuring, with graphically illustrated examples. RESULTS: Five temporal structures influence what-happens-when: (1) clinical priorities and quality assurance metrics motivate rapid activity for the initial life-prolonging assessments and interventions; (2) static features of ward organisation such as rotas and ward rounds impact consistency of care, determining timing and quality of care for patients; (3) some services experimented with staff rotas to try to meet peaks in demand, sometimes unsuccessfully; (4) implicit social norms or heuristics about perceived necessity affected staff motivation to make changes or improvements to consistency of care, particularly around weekend work; and (5) after-effects such as bottlenecks or backlogs affect quality of care, which are hard to measure effectively to drive service improvement. CONCLUSIONS: Patients need temporally consistent high quality of care. Temporal consistency stems from the design of services, including staffing, targets and patient pathway design as well as cultural attitudes to working patterns. Improvements to consistency of care will be limited without changes to structures such as rotas and ward rounds, but also social norms around weekend work for certain professional groups.

The relationship between patient enablement and help-seeking in the context of blood cancer symptoms.

OBJECTIVE: Approaches to improve earlier diagnosis of cancer often focus on symptom awareness as a key driver of help-seeking behaviour and other psychological influences are less well understood. This is the first study to explore the role of patient enablement on help-seeking for people experiencing potential blood cancer symptoms. METHODS: A cross-sectional, nationally representative survey was completed by 434 respondents (>18 years). Questions asked about symptom experiences, medical help-seeking and re-consultation. Existing patient enablement items were included in the newly developed Blood Cancer Awareness Measure. We collected data on patient socio-demographic characteristics. RESULTS: Of those responding to the survey 224/434 (51.6%) reported experiencing at least one potential blood cancer symptom. Half of those experiencing symptoms (112/224) had sought medical help. Results from logistic regression analysis showed that higher scores on patient enablement were associated with being less likely to seek help (Odds Ratio [OR] 0.89, Confidence Interval [CI] 0.81-0.98) after controlling for socio-demographics. Separate analyses showed that higher enablement was associated with being more comfortable to re-consult if symptoms didn't go away or got worse (OR 1.31, CI 1.16-1.48); after a test result suggested there was nothing to worry about, but symptoms persisted (OR 1.23, CI 1.12-1.34) or to request further tests, scans or investigations (OR 1.31, CI 1.19-1.44). CONCLUSIONS: Contrary to our hypotheses, patient enablement was associated with lower likelihood of help-seeking for potential blood cancer symptoms. Yet enablement appears to play an important role in likelihood of re-consulting when symptoms persist, get worse or need further investigation.

What causes delays in diagnosing blood cancers? A rapid review of the evidence.

OBJECTIVE: We undertook a rapid review of literature relating to the diagnosis of blood cancers, to find out what factors contribute to delays in diagnosis, including symptom recognition, appraisal and help-seeking behaviours. METHODS: We used rapid review methodology following Tricco et al. to synthesise current literature from two electronic databases. We searched for studies about symptom appraisal help-seeking for all blood cancers published between 2001 and 2021, written in English. RESULTS: Fifteen studies were included in the review, of which 10 were published in the United Kingdom. We found a number of factors associated with delays in blood cancer diagnosis. These included patient factors such as gender, age and ethnicity, as well as health system factors such as poor communication and seeing a locum clinician in primary care. A narrative synthesis of the evidence produced four types of symptom interpretation by patients: (1) symptoms compatible with normal state of health, (2) event-linked problems, (3) mild or chronic illness and (4) non-specific unwell state. These four interpretations were linked to different help-seeking behaviours. After seeking help, patients often experienced delays due to healthcare professionals' (HCPs') non-serious interpretation of symptoms, misleading blood tests, discontinuity of care and other barriers in the diagnostic pathway. CONCLUSION: Blood cancers are difficult to diagnose due to non-specific heterogeneous symptoms, and this is reflected in how those symptoms are interpreted by patients and managed by HCPs. It is important to understand how different interpretations affect delays in help-seeking, and what HCPs can do to support timely follow-up for patients.

What are the similarities and differences in lung cancer symptom appraisal and help-seeking according to smoking status? A qualitative study with lung cancer patients.

OBJECTIVE: Lung cancer in never-smokers represents a growing proportion of patients. The relationship between smoking status, symptom appraisal and help-seeking behaviour is complex. Little is known about cancer symptom-related health behaviours according to smoking status. The aim of the study was to explore lung cancer patients' experiences of a lung cancer diagnosis, identifying differences by smoking history. METHOD: This was a qualitative study involving telephone interviews with 40 lung cancer patients (20 never smokers, 11 former smokers and 9 current smokers). We used framework analysis to analyse the data using the Common Sense Model of Illness Self-Regulation as a theoretical framework, developed after initial analysis. RESULTS: All patients were likely to delay seeking help for symptoms in primary care regardless of smoking history, but for different reasons. Smoking history was instrumental to how individuals perceived and responded to early symptoms of lung cancer. Differences in interpretation and coping responses to new symptoms seemed to be caused by the higher presence of comorbidities due to smoking, and perceptions of the current state of health. Individuals with a smoking history reported acting with urgency in seeking help and follow up, whereas patients who experienced low levels of concern were more easily reassured by clinicians, resulting in delays. CONCLUSIONS: Never and former smokers perceive, interpret, and respond to symptoms of lung cancer differently to smokers. However, few people attribute their lung symptoms to cancer initially, even with a smoking history. Interventions that drive increased urgency and vigilance in never smokers may be effective.

Back to the future? Lessons from the history of integrated child health services in England.

The UK has a long history of attempts to integrate child health services to improve outcomes, an ambition renewed in the recent The NHS Long Term Plan. It's therefore timely to review the history of integration to inform future initiatives. Key milestones include the Platt report (1959), Court report (1976), Sure Start (1999), National service framework (2004) and Facing the future report (2015). These stand against a backdrop of national NHS policy changes, with a myriad of local integration initiatives and research efforts in parallel. We suggest lessons for future integration initiatives: integration may support the quadruple aim; integration depends on addressing divides between primary and secondary care; workforce and funding challenges need to be resolved before integration can thrive; high-quality research and evaluation of integrated interventions is required; strong relationships between professional groups are key to integration; and integration can help address health inequalities.

How does safety netting for lung cancer symptoms help patients to reconsult appropriately? A qualitative study.

BACKGROUND: Safety netting in primary care is considered an important intervention for managing diagnostic uncertainty. This is the first study to examine how patients understand and interpret safety netting advice around low-risk potential lung cancer symptoms, and how this affects reconsultation behaviours. METHODS: Qualitative interview study in UK primary care. Pre-covid-19, five patients were interviewed in person within 2-3 weeks of a primary care consultation for potential lung cancer symptom(s), and again 2-5 months later. The general practitioner (GP) they last saw was interviewed face-to-face once. During the covid-19 pandemic, an additional 15 patients were interviewed only once via telephone, and their GPs were not interviewed or contacted in any way. Audio-recorded interviews were transcribed verbatim and analysed using inductive thematic analysis. RESULTS: The findings from our thematic analysis suggest that patients prefer active safety netting, as part of thorough and logical diagnostic uncertainty management. Passive or ambiguous safety netting may be perceived as dismissive and cause delayed reconsultation. GP safety netting strategies are not always understood, potentially causing patient worry and dissatisfaction. Telephone consultations and the diagnostic overshadowing of COVID-19 on respiratory symptoms impacted GPs' safety netting strategies and patients' appetite for active follow up measures. CONCLUSIONS: Safety netting guidelines do not yet offer solutions that have been proven to promote symptom vigilance and timely reconsultation for low-risk lung cancer symptoms. This may have been affected by primary care practices during the COVID-19 pandemic. Patients prefer active or pre-planned safety netting coupled with thorough consultation techniques and a comprehensible diagnostic strategy, and may respond adversely to passive safety netting advice.

Loss associated with subtractive health service change: The case of specialist cancer centralization in England.

OBJECTIVE: Major system change can be stressful for staff involved and can result in 'subtractive change' - that is, when a part of the work environment is removed or ceases to exist. Little is known about the response to loss of activity resulting from such changes. Our aim was to understand perceptions of loss in response to centralization of cancer services in England, where 12 sites offering specialist surgery were reduced to four, and to understand the impact of leadership and management on enabling or hampering coping strategies associated with that loss. METHODS: We analysed 115 interviews with clinical, nursing and managerial staff from oesophago-gastric, prostate/bladder and renal cancer services in London and West Essex. In addition, we used 134 hours of observational data and analysis from over 100 documents to contextualize and to interpret the interview data. We performed a thematic analysis drawing on stress-coping theory and organizational change. RESULTS: Staff perceived that, during centralization, sites were devalued as the sites lost surgical activity, skills and experienced teams. Staff members believed that there were long-term implications for this loss, such as in retaining high-calibre staff, attracting trainees and maintaining autonomy. Emotional repercussions for staff included perceived loss of status and motivation. To mitigate these losses, leaders in the centralization process put in place some instrumental measures, such as joint contracting, surgical skill development opportunities and trainee rotation. However, these measures were undermined by patchy implementation and negative impacts on some individuals (e.g. increased workload or travel time). Relatively little emotional support was perceived to be offered. Leaders sometimes characterized adverse emotional reactions to the centralization as resistance, to be overcome through persuasion and appeals to the success of the new system. CONCLUSIONS: Large-scale reorganizations are likely to provoke a high degree of emotion and perceptions of loss. Resources to foster coping and resilience should be made available to all organizations within the system as they go through major change.

"Attending to History" in Major System Change in Healthcare in England: Specialist Cancer Surgery Service Reconfiguration.

BACKGROUND: The reconfiguration of specialist hospital services, with service provision concentrated in a reduced number of sites, is one example of major system change (MSC) for which there is evidence of improved patient outcomes. This paper explores the reconfiguration of specialist oesophago-gastric (OG) cancer surgery services in a large urban area of England (Greater Manchester, GM), with a focus on the role of history in this change process and how reconfiguration was achieved after previous failed attempts. METHODS: This study draws on qualitative research from a mixed-methods evaluation of the reconfiguration of specialist cancer surgery services in GM. Forty-six interviews with relevant stakeholders were carried out, along with ~160 hours of observations at meetings and the acquisition of ~300 pertinent documents. Thematic analysis using deductive and inductive approaches was undertaken, guided by a framework of 'simple rules' for MSC. RESULTS: Through an awareness of, and attention to, history, leaders developed a change process which took into account previous unsuccessful reconfiguration attempts, enabling them to reduce the impact of potentially challenging issues. Interviewees described attending to issues involving competition between provider sites, change leadership, engagement with stakeholders, and the need for a process of change resilient to challenge. CONCLUSION: Recognition of, and response to, history, using a range of perspectives, enabled this reconfiguration. Particularly important was the way in which history influenced and informed other aspects of the change process and the influence of stakeholder power. This study provides further learning about MSC and the need for a range of perspectives to enable understanding. It shows how learning from history can be used to enable successful change.

Ethnographic research as an evolving method for supporting healthcare improvement skills: a scoping review.

BACKGROUND: The relationship between ethnography and healthcare improvement has been the subject of methodological concern. We conducted a scoping review of ethnographic literature on healthcare improvement topics, with two aims: (1) to describe current ethnographic methods and practices in healthcare improvement research and (2) to consider how these may affect habit and skill formation in the service of healthcare improvement. METHODS: We used a scoping review methodology drawing on Arksey and O'Malley's methods and more recent guidance. We systematically searched electronic databases including Medline, PsychINFO, EMBASE and CINAHL for papers published between April 2013 - April 2018, with an update in September 2019. Information about study aims, methodology and recommendations for improvement were extracted. We used a theoretical framework outlining the habits and skills required for healthcare improvement to consider how ethnographic research may foster improvement skills. RESULTS: We included 283 studies covering a wide range of healthcare topics and methods. Ethnography was commonly used for healthcare improvement research about vulnerable populations, e.g. elderly, psychiatry. Focussed ethnography was a prominent method, using a rapid feedback loop into improvement through focus and insider status. Ethnographic approaches such as the use of theory and focus on every day practices can foster improvement skills and habits such as creativity, learning and systems thinking. CONCLUSIONS: We have identified that a variety of ethnographic approaches can be relevant to improvement. The skills and habits we identified may help ethnographers reflect on their approaches in planning healthcare improvement studies and guide peer-review in this field. An important area of future research will be to understand how ethnographic findings are received by decision-makers.

How doctors make themselves understood in primary care consultations: A mixed methods analysis of video data applying health literacy universal precautions.

PURPOSE: To mitigate the health risks that result from low health literacy and difficulty identifying patients with insufficient health literacy, health organizations recommend physicians apply health literacy universal precaution communication skills when communicating with all patients. Our aim was to assess how health literacy universal precautions are delivered in routine GP consultations, and explore whether there were differences in how GPs used universal precaution approaches according to areas of deprivation in England. METHODS: This was a mixed methods study using video and interview data. Ten physicians conducted 217 consultations in primary care settings with adults over 50 years old between July 2017 and March 2018 in England. Eighty consultations (N = 80) met the inclusion criteria of new or persisting problems. Descriptive quantitative analysis of video-recorded consultations using an observation tool and qualitative thematic analysis of transcribed scripts. Meta-themes explored differences in physicians' communication by areas of deprivation. RESULTS: Descriptive statistics showed physicians used a caring tone of voice and attitude (n = 73, 91.3%) and displayed comfortable body language (n = 69, 86.3%) but infrequently demonstrated profession-specific health literacy universal precaution communication skills, such as the teach-back technique (n = 3, 3.8%). Inferences about physicians' communication from qualitative analysis converged with the quantitative findings. Differences in physicians' communication varied according to areas of deprivation. CONCLUSIONS: Physicians need health literacy universal precautions communication skills to improve population health.