Patient perspectives on delays in diagnosis and treatment of cancer: a qualitative analysis of free-text data

Published on Jan 1, 2017in British Journal of General Practice5.386
· DOI :10.3399/BJGP16X688357
Rachel Parsonage3
Estimated H-index: 3
(Bangor University),
Julia Hiscock9
Estimated H-index: 9
(Bangor University)
+ 1 AuthorsRichard D Neal52
Estimated H-index: 52
(University of Leeds)
Sources
Abstract
Background Earlier cancer diagnosis is crucial in improving cancer survival. The International Cancer Benchmarking Partnership Module 4 (ICBP4) is a quantitative survey study that explores the reasons for delays in diagnosis and treatment of breast, colorectal, lung, and ovarian cancer. To further understand the associated diagnostic processes, it is also important to explore the patient perspectives expressed in the free-text comments. Aim To use the free-text data provided by patients completing the ICBP4 survey to augment the understanding of patients’ perspectives of their diagnostic journey. Design and setting Qualitative analysis of the free-text data collected in Wales between October 2013 and December 2014 as part of the ICBP4 survey. Newly-diagnosed patients with either breast, ovarian, colorectal, or lung cancer were identified from registry data and then invited by their GPs to participate in the survey. Method A thematic framework was used to analyse the free-text comments provided at the end of the ICBP4 survey. Of the 905 patients who returned a questionnaire, 530 included comments. Results The free-text data provided information about patients’ perspectives of the diagnostic journey. Analysis identified factors that acted as either barriers or facilitators at different stages of the diagnostic process. Some factors, such as screening, doctor–patient familiarity, and private treatment, acted as both barriers and facilitators depending on the context. Conclusion Factors identified in this study help to explain how existing models of cancer diagnosis (for example, the Pathways to Treatment Model) work in practice. It is important that clinicians are aware of how these factors may interact with individual clinical cases and either facilitate, or act as a barrier to, subsequent cancer diagnosis. Understanding and implementing this knowledge into clinical practice may result in quicker cancer diagnoses.
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References26
Newest
#1David Weller (Edin.: University of Edinburgh)H-Index: 50
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Objectives This paper describes the methods used in the International Cancer Benchmarking Partnership Module 4 Survey (ICBPM4) which examines time intervals and routes to cancer diagnosis in 10 jurisdictions. We present the study design with defining and measuring time intervals, identifying patients with cancer, questionnaire development, data management and analyses. Design and setting Recruitment of participants to the ICBPM4 survey is based on cancer registries in each jurisdiction. Question...
Source
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Source
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Source
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#2Annette J. Berendsen (UG: University of Groningen)H-Index: 17
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Source
#1Mads Lind Ingeman (AU: Aarhus University)H-Index: 4
#2Morten Bondo Christensen (AU: Aarhus University)H-Index: 14
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#1Inocencio Maramba (University of Exeter)H-Index: 12
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Source
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#1Cristina Renzi (UCL: University College London)H-Index: 14
#2Katriina L. Whitaker (UCL: University College London)H-Index: 22
Last. Jane Wardle (UCL: University College London)H-Index: 159
view all 3 authors...
Objectives This literature review examined research into the impact of a previous ‘all-clear’ or non-cancer diagnosis following symptomatic presentation (‘false alarm’) on symptom attribution and delays in help seeking for subsequent possible cancer symptoms. Design and setting The comprehensive literature review included original research based on quantitative, qualitative and mixed data collection methods. We used a combination of search strategies, including in-depth searches of electronic da...
Source
#1L IronmongerH-Index: 5
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Last. M.D. Peake (Royal College of Physicians)H-Index: 5
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