‘It was nothing that you would think was anything’: Qualitative analysis of appraisal and help seeking preceding brain cancer diagnosis

Scott, Suzanne E.; Penfold, Clarissa; Saji, S; Curtis, Sarah A.; Watts, Colin; Hamilton, William; Joannides, Alexis; Walter, Fiona M

doi:10.1371/journal.pone.0213599

Cited by 10 publications

(19 citation statements)

References 32 publications

(39 reference statements)

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“…12 A psychological study showed that subtle changes were often misinterpreted by the patients and that a faster decision-making was rather obtained within a social context. 20 The relatively long time to diagnosis interval in brain tumors should lead to a reconsideration of certain symptoms, especially of visual disturbances. Visual disturbances especially of blurred and/or double vision might be an indicator for increased intracranial pressure and should therefore lead a more intense diagnostic workup.…”

Section: Discussionmentioning

confidence: 99%

From first symptoms to diagnosis: Initial clinical presentation of primary brain tumors

Alther

Mylius

Weller

et al. 2020

Clinical and Translational Neuroscience

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Background: Despite modern imaging methods, a long symptom-to-diagnosis interval can be observed in patients with primary brain tumors. Objective: The study evaluated the initial and subsequent clinical presentation of patients with brain tumors in the context of time to diagnosis, localization, histology, and tumor grading. Methods: In this retrospective analysis of 85 consecutive patients with primary brain tumors, we assessed the presenting symptoms and signs. The analyses were based on entries from medical records at the Department of Neurology of Zurich University Hospital between 2005 and 2010. Results: A total of 54 men and 31 women with a mean age at diagnosis of 48 years were included. 60% of the patients present with a malignant tumor (World Health Organization grading III–IV), 24.7% with a benign tumor (I–II), and 15.3% were not classified. The interval between symptom onset and diagnosis varied from 1 day to 96 months (median: 39 days). High-grade tumors (III–IV) were diagnosed significantly earlier than low-grade tumors (II) after the first symptoms occurred (median: 26 vs. 138 days; z = −3.847, p < 0.001). Conclusions: Symptoms with a short symptom-to-diagnosis interval such as nausea/vomiting, seizures, as well as of personality change are assumed to contribute to a faster diagnosis in high-grade tumors. Visual disturbances and headaches, although occurring relatively seldom, did not contribute to a decrease in time to diagnosis and should therefore be considered for further diagnostic workup.

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Section: Discussionmentioning

confidence: 99%

From first symptoms to diagnosis: Initial clinical presentation of primary brain tumors

Alther

Mylius

Weller

et al. 2020

Clinical and Translational Neuroscience

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“…For instance, is this because these heuristics are less useful to the interpretation of the studied potential cancer symptoms, or because they are less well articulated? Recent work on changes preceding diagnosis of a brain tumour indicates that attribution to stress is a common response to noticing changes in sleep, mood, and cognitive function …”

Section: Discussionmentioning

confidence: 99%

Do cognitive heuristics underpin symptom appraisal for symptoms of cancer?: A secondary qualitative analysis across seven cancers

et al. 2019

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Objectives: To explore the evidence for cognitive heuristics or "rules of thumb" used within patients' reports of symptom appraisal and decisions to seek help for symptoms of cancer.Methods: A secondary analysis of interviews from existing studies that explored symptom appraisal in patients who had sought help for potential symptoms of cancer.Transcripts from n = 50 in-depth interviews with patients referred with symptoms suspicious of cancer (pancreas, colorectal, oral, lung, melanoma, breast, and prostate) were re-analysed using a deductive thematic approach underpinned by the heuristics outlined in the Common Sense Model of Illness Self-regulation as set within the Model of Pathways to Treatment.Results: The most dominant heuristic in patient reports was the Rate of change rule (ie, symptoms that are worsening, increasing, or have a sudden onset [rather than improving, stable or decreasing in number] are more likely to indicate illness). There was also support for the Duration rule, Pattern rule, Chronology rule, Severity (of interference) rule, Age-illness rule, Novelty rule, Similarity rule, Location rule, and Optimistic bias rule. There was a lack of evidence for the Prevalence and Stress-illness rules.Conclusions: People do appear to use heuristics to guide their appraisal of symptoms and their perceived need for healthcare. Heuristics may be an important aspect underlying symptom misinterpretation, thus making them key targets for interventions. For instance, campaigns could tackle cognitive biases rather than focusing on specific symptom awareness. Myth-busting messages could highlight that intermittent, mild symptoms, and symptoms that are not worsening can be signs of a serious health problem.

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“…The symptoms that patients experienced before a brain tumour diagnosis and how these were reported and responded to in primary care are presented in this article. The psychological approaches underpinning the appraisal and help-seeking processes, often over several consultations, are reported elsewhere 28…”

Section: Methodsmentioning

confidence: 99%

“…The psychological approaches underpinning the appraisal and help-seeking processes, often over several consultations, are reported elsewhere. 28 …”

Section: Methodsmentioning

confidence: 99%

Missed opportunities for diagnosing brain tumours in primary care: a qualitative study of patient experiences

et al. 2019

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BackgroundBrain tumours are uncommon, and have extremely poor outcomes. Patients and GPs may find it difficult to recognise early symptoms because they are often non-specific and more likely due to other conditions.AimTo explore patients’ experiences of symptom appraisal, help seeking, and routes to diagnosis.Design and settingQualitative study set in the East and North West of England.MethodIn-depth interviews with adult patients recently diagnosed with a primary brain tumour and their family members were analysed thematically, using the Model of Pathways to Treatment as a conceptual framework.ResultsInterviews were carried out with 39 patients. Few participants (n = 7; 18%) presented as an emergency without having had a previous GP consultation; most had had one (n = 15; 38%), two (n = 9; 23%), or more (n = 8; 21%) GP consultations. Participants experienced multiple subtle ‘changes’ rather than ‘symptoms’, often noticed by others rather than the patient, which frequently led to loss of interest or less ability to engage with daily living activities. The most common changes were in cognition (speaking, writing, comprehension, memory, concentration, and multitasking), sleep, and other ‘head feelings’ such as dizziness. Not all patients experienced a seizure, and few seizures were experienced ‘out of the blue’. Quality of communication in GP consultations played a key role in patients’ subsequent symptom appraisal and the timing of their decision to re-consult.ConclusionMultiple subtle changes and frequent GP visits often precede brain tumour diagnosis, giving possible diagnostic opportunities for GPs. Refined community symptom awareness and GP guidance could enable more direct pathways to diagnosis, and potentially improve patient experiences and outcomes.

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‘It was nothing that you would think was anything’: Qualitative analysis of appraisal and help seeking preceding brain cancer diagnosis

Cited by 10 publications

References 32 publications

From first symptoms to diagnosis: Initial clinical presentation of primary brain tumors

From first symptoms to diagnosis: Initial clinical presentation of primary brain tumors

Do cognitive heuristics underpin symptom appraisal for symptoms of cancer?: A secondary qualitative analysis across seven cancers

Missed opportunities for diagnosing brain tumours in primary care: a qualitative study of patient experiences

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