Laura Boswell

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.

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.

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. We used rapid review methodology following Tricco 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. 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. 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.

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 (OR 0.89, 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, 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.