Analysis of the Free Text Comments from the International Cancer Benchmarking Partnership 4 (ICBP4) Survey

The problem

Having a diagnosis of cancer in the United Kingdom is noted to be associated with more advanced diagnosis and poorer outcome as compared to other European Countries (Sant et al, 2003, 2009, Berrino et al, 2007). This is partly explained by longer times to diagnosis. The ICBP is a partnership between Australia, Canada, Denmark, England, Northern Ireland, Norway, Sweden and Wales that is co-ordinated by the Department of Health in England with support from Cancer Research UK. It aims to compare cancer survival rates and closely examine why there may be variations across countries. To date, a quantitative questionnaire based study (ICBP 4) has been sent out to patients in Wales who have had a diagnosis of breast, lung, colorectal or ovarian cancer. At the end of the questionnaire, there is an open question which asks participants to enter free text data in response to the question ‘Please add anything else that you would like to tell us about your cancer diagnosis or treatment’.Systematically analysed, free text comments from surveys can provide valuable data and may often be a ‘neglected data source’ (Pill et al, 2003) which complement quantitative approaches (Ong et al 2006) and give insights into quantitative responses (Corner et al 2013).The aim of this study is to uncover the patient perspectives during their journey through the path of cancer diagnosis and treatment and look for potential unknown indications of slow cancer diagnosis and treatment.

The approach

This study aims to qualitatively analyse the free text comments given by participants (n=871) in order to examine the patient experience of diagnosis and treatment of cancer. The data will be analysed using a thematic framework analysis, which refers to the classification and organisation of data according to key themes, concepts and emerging categories (Richie, Spencer & O’Connor, 2003 p220).

Findings

513 qualitative comments were made by participants: 161 (out of 266) from participants with breast cancer, 177 (out of 297) participants with colorectal cancer, 119 (out of 220) participants with lung cancer and 56 (out of 88) participants with ovarian cancer. Emergent themes so far include luck, reasons for late diagnosis including patient and health professional factors, the need to obtain private treatment, missing the diagnosis of cancer with conventional testing and the psychological impacts of cancer.

Consequences

In addition to what is already known about cancer diagnosis and treatment, it is expected that the findings of this analysis may uncover patient experiences regarding presentation of symptoms and diagnosis of cancer which are novel and interesting. The findings of the framework analysis will be presented at this conference. It will inform the levels of intervention required to prevent avoidable delay in patient presentation for cancer diagnosis.

Credits

• Rachel Parsonage
• Richard Neal
• Julia Hiscock
• Rebecca-Jane Law