Date Published: March 22, 2019
Publisher: Public Library of Science
Author(s): Suzanne E. Scott, Clarissa Penfold, Smiji Saji, Sarah Curtis, Colin Watts, Willie Hamilton, Alexis J. Joannides, Fiona M. Walter, Valerie Shilling.
The patient’s interpretation of the events and decisions leading up to consultation with a healthcare professional for symptoms of brain cancer is under researched. The aim of this study was to document responses to noticing the changes preceding a diagnosis of brain cancer and living with them, focusing on appraisal of changes and the decision to seek (and re-seek) help, with attention to the psychological processes underpinning the appraisal and help-seeking intervals.
In this qualitative study set in Eastern and NW England, in-depth interviews with adult patients recently diagnosed with primary brain cancer and their family members were analysed thematically, using the Model of Pathways to Treatment as a conceptual framework.
39 adult patients were interviewed. Regarding the appraisal interval, cognitive heuristics were found to underpin explanations of changes/symptoms. The subtlety and normality of changes often suggested nothing serious was wrong. Common explanations included stress or being busy at work, or age and these did not seem to warrant a visit to a doctor. Explanations and the decision to seek help were made within the social context, with friends, family and work colleagues contributing to appraisal and help-seeking decisions.
Application of psychological theory facilitated understanding of the influences on cognition and behaviour. The study highlights implications for theory, awareness campaigns and potential opportunities promoting more timely help-seeking.
The prognosis for primary brain cancer is poor. Only 40% of patients live for more than a year after diagnosis and less than 20% live for more than 5 years . Furthermore, brain cancer results in the most life-years lost of any cancer [1,2]. In addition to poor prognosis, advanced disease may bring neurological disability from cancer-related operative brain injury and disease progression .
This study has revealed that for people recently diagnosed with brain cancer, changes and symptoms are often noticed many months before presentation. The in-depth interviews uncovered the thoughts and reactions to these changes and how this shifted throughout the pathways to diagnosis. A strength of this study is that the sample was diverse and patients were interviewed within a few weeks of their diagnosis and prior to neuro-surgery, facilitating recall . They were also encouraged to have a family member present during the interview. Both approaches reduced the potential for recall bias and provided a fuller picture of the pathway to diagnosis. Furthermore, the workshop for GPs, and other patients and their family members, gave us an opportunity to triangulate our analyses and check the credibility of our findings. The main limitation was that the participants were often unwell, and sometimes apprehensive about their imminent major surgery. Whilst no obvious differences were apparent, it is possible that there were differences between the ‘public’ accounts given in the interviews, often in front of loved ones, and participants’ actual views. It is difficult to know if this was the case without conducting further interviews. Our purposive sampling enabled a range of perspectives to be heard. There may have been differences in experience and accounts between those of differing age and sex. Future quantitative work could explore this.