Study: The Role of Information Sources Before A Diagnosis of Lung Cancer – Abstract
Background. Lung cancer (LC) has the second-lowest survival rates among all common cancer types. UK survival rates are lower than the European mean. Research into reasons for these low survival rates in the UK have highlighted delayed diagnosis as a major contributor. This study focuses on delays in diagnosis caused by patients. LC patient delay seems to be the result of lack of awareness of warning signs, fear and embarrassment. To encourage individuals to seek help promptly, it is important to understand which health information sources this particular patient group typically uses, and how. Information on the internet could play an important role in augmenting awareness, but more information is needed on how LC patients perceive and use web-based content.
Aims. The aim of this project is to identify the role of web-based information in the process from LC patients’ first symptom perception to presenting to health services.
Methods. Patients diagnosed with LC within six months prior to study begin will be recruited from clinical sites in the Northwest of England. We plan to recruit at least 120 participants. Participants will be asked to complete a paper-based questionnaire. A sub-set of the sample will be invited to participate in further semi-structured interviews. The questionnaire will assess sociodemographic variables as well as information on the use of lay information sources for symptom appraisal prior to diagnosis. The interview will explore possible motivators and barriers to seeking help, with special focus on the internet. Survey data will be analysed quantitatively using a linear regression analysis to predict patient delay. Interviews will be recorded and transcribed. The data will be analysed using Framework Analysis.
Data handling and ethical considerations. Manual files with participant data will be pseudo-anonymised and only the research team will have access to these. Electronic data will be encrypted using University-approved software. Informed written consent will be obtained from patients prior to participation. Members of the public were involved in the design of the study material. Contact details for available support services will be supplied in case participants feel the need for social or emotional support after participation. The researcher has received extensive training in communication skills to ensure she can communicate with patients with due empathy and respect.
Safety considerations. The interviewer is aware of the University’s Lone Working Policy and will take all necessary steps to minimize risks involved in lone working.
Impact and benefits of the study. At present, no research, to our knowledge, has looked at use of the internet for symptom appraisal prior to diagnosis in LC patients. This information is essential so that strategies can be developed to increase LC symptom awareness among the public, which will help to reduce patient delay.
Resources and costs. This study is funded through a Doctoral Training Grant from the Medical Research Council. This includes a grant for general project cost support, a Research Training Support Grant (RTSG) and a maintenance stipend.