Elsevier

The Lancet

Volume 366, Issue 9488, 3–9 September 2005, Pages 825-831
The Lancet

Articles
Patients' help-seeking experiences and delay in cancer presentation: a qualitative synthesis

https://doi.org/10.1016/S0140-6736(05)67030-4Get rights and content

Summary

Background

The reduction of delay in cancer diagnosis has been targeted as a way to improve survival. We undertook a qualitative synthesis of international research evidence to provide insight into patients' experiences of recognising symptoms of cancer and seeking help.

Methods

We searched international publications (1985–2004) for delay in cancer diagnosis to identify the relevant qualitative research, and used meta-ethnography to identify the common themes across the studies. Our synthesis interpreted individual studies by identification of second-order constructs (interpretations offered by the original researchers) and third-order constructs (development of new interpretations beyond those offered in individual studies).

Findings

We identified 32 papers (>775 patients and carers) reporting help-seeking experiences for at least 20 different types of cancer. The analysis showed strong similarities in patients with different cancer types. Key concepts were recognition and interpretation of symptoms, and fear of consultation. Fear manifested as a fear of embarrassment (the feeling that symptoms were trivial or that symptoms affected a sensitive body area), or a fear of cancer (pain, suffering, and death), or both. Such analyses allowed exploration of third-order constructs. The patient's gender and the sanctioning of help-seeking were important factors in prompt consultation.

Interpretation

Strategies to understand and reduce patients' delay in cancer presentation can help symptom recognition but need to address patients' anxieties. The effect of the patient's sex in help-seeking also needs to be recognised, as does the important role of friends, family, and health-care professionals in the sanctioning of consultation. This meta-ethnography provides an international overview through the systematic synthesis of a diverse group of small-scale qualitative studies.

Introduction

The shortening of delays in diagnosis has been an important part of a national strategy by the UK government to reduce cancer morbidity and mortality.1, 2 Many initiatives have focused on the reduction of organisational delays, which take place between a patient's first presentation of possible symptoms to doctors and the subsequent diagnosis and treatment. Yet the gap between patients noticing symptoms and seeking medical assessment3 also contributes to overall delay. Systematic reviews of delay in cancer diagnosis4, 5 have provided valuable evidence of the length of these periods and have helped to quantify patients' awareness of cancer symptoms and risk factors for delay, emphasising the failure to recognise the severity of symptoms as a particular problem.5 To reduce this delay of presentation, mechanisms underlying these risk factors need to be established. Qualitative research has been recognised as a legitimate way to obtain knowledge that might not be accessible by other methods6, 7 and to provide extensive data on how people interpret and act on their symptoms, but it is often criticised as being contextually specific and having little generalisability. Integration of findings from qualitative studies about cancer experiences has been suggested to develop effective health-care interventions.8 We undertook a qualitative synthesis of international research on cancer patients' experiences of help-seeking and explored why patients delay in presenting to a health professional by comparing published data for patients with different types of cancer.

Section snippets

Identification of published work

To find qualitative research is difficult;9, 10, 11 qualitative research is not indexed as well as quantitative research (eg, qualitative is not a MEDLINE MeSH term), is widely distributed, and is often catalogued in databases that are not well-known to medical researchers.11 We used a combination of strategies: extensive searches of electronic medical, sociological, and psychological databases (MEDLINE, EMBASE, PubMed, BIDS, IBSS, PsycINFO, SCI, SSCI) using explicit criteria; hand searching of

Results

We identified 32 original papers that met our inclusion criteria15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28, 29, 30, 31, 32, 33, 34, 35, 36, 37, 38, 39, 40, 41, 42, 43, 44, 45, 46 based on focus groups, interviews, and oral testimonies with patients and carers providing data for more than 775 individuals, of whom at least 712 were patients with more than 20 different types of cancer (table). 23 papers focused on one type of cancer, most commonly breast (11), testicular (four), and

Discussion

Our analysis showed that of the studies we identified, patients with different types of cancer and from different countries had similar help-seeking experiences. Main themes in delay in presentation were recognition and interpretation of symptoms, and fear of consultation (with respect to embarrassment and to the idea of cancer itself). The patient's gender and the sanctioning of help-seeking also affected help-seeking.

This synthesis of qualitative research allows the integration of findings

Glossary

Qualitative research
A range of approaches within the interpretive paradigm (eg, ethnography, case study research). Qualitative methods include in-depth interviews, observation, focus group interviews, and analysis of documents. The interpretive paradigm seeks to understand meanings and experience from the perspective of the people being studied.
Qualitative synthesis
The analysis and reinterpretation of research evidence from multiple interpretive studies, which unlike traditional or systematic

References (51)

  • NHS Executive

    Cancer referral guidelines: Referral guidelines for suspected cancer HSC 2000/013

    (2000)
  • C Nosarti et al.

    Delay in presentation of symptomatic referrals to a breast clinic: patient and system factors

    Br J Cancer

    (2000)
  • Macdonald S, Macleod U, Mitchell E, Weller D, Campbell N, Mant D. Factors influencing patient and primary care delay in...
  • J Popay et al.

    Qualitative research and evidence-based healthcare

    J R Soc Med

    (1998)
  • J Green et al.

    Qualitative research and evidence based medicine

    BMJ

    (1998)
  • V Entwistle et al.

    Researching experiences of cancer: the importance of methodology

    Eur J Cancer Care (Engl)

    (2002)
  • D Evans

    Database searches for qualitative research

    J Med Libr Assoc

    (2002)
  • M Dixon-Woods et al.

    Including qualitative research in systematic reviews: opportunities and problems

    J Eval Clin Pract

    (2001)
  • RL Shaw et al.

    Finding qualitative research: an evaluation of search strategies

    BMC Med Res Methodol

    (2004)
  • GW Noblit et al.

    Meta-ethnography: synthesizing qualitative studies

    (1988)
  • N Britten et al.

    Using meta ethnography to synthesise qualitative research: a worked example

    J Health Serv Res Policy

    (2002)
  • P Gascoigne et al.

    Factors affecting presentation and delay in patients with testicular cancer: results of a qualitative study

    Psychooncology

    (1999)
  • C Burgess et al.

    A qualitative study of delay among women reporting symptoms of breast cancer

    Br J Gen Pract

    (2001)
  • NS Bain et al.

    Treating patients with colorectal cancer in rural and urban areas: a qualitative study of the patients' perspective

    Fam Pract

    (2000)
  • NS Bain et al.

    Striking the right balance in colorectal cancer care—a qualitative study of rural and urban patients

    Fam Pract

    (2002)
  • Cited by (0)

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