Web-Based Information Tool for People With Advanced Cancer
Research type
Research Study
Full title
Shared decision-making: Investigating the Potential of an Interactive, Web-Based Information Tool for People with Advanced Pancreatic Cancer
IRAS ID
252843
Contact name
Janet Scammell
Contact email
Sponsor organisation
Bournemouth University
Clinicaltrials.gov Identifier
NCT03632850, Clinicaltrials.gov
Duration of Study in the UK
1 years, 11 months, 30 days
Research summary
Summary of Research
After diagnosis with advanced pancreatic cancer, patients are left with the option of palliative care since curative surgical procedures are no longer an option at this stage. Systemic chemotherapy and enhanced care (best supportive care) are some of the palliative care options available to candidates. However, these options come with different side-effects that might be unclear to the patients. On the one hand, clinicians need tools for effective communication with their patients about the treatment options available, and on the other hand, patients need to understand the potential benefits and risks associated with the treatments being administered to them, thereby potentially assisting them in the decision-making process about their treatment based on their preferences.
The purpose of the research is to assess the usefulness of a web-based information tool for clinicians, patients and their relatives to support discussions about available treatment options after diagnosis of advanced stage disease. The tool is intended for educational purposes.
Eligible participants are clinicians (doctors and specialist nurses) who are involved with providing care for people with advanced cancer, people who have been diagnosed with advanced pancreatic cancer, and their nominated relatives who are supporting them during the period of treatment.
Potential participants will be enrolled from NHS Foundation Trust sites in England and from Pancreatic Cancer UK.
There will be single interview sessions for patients, relatives, and doctors, and there will be focus groups for clinical nurse specialists. Thereafter, participants will be invited to test the new online information tool that will be developed.
Recruitment will be in three stages. First stage will be for those who will participate in interviews, focus groups. Second stage will be first iteration of the test phase, and the third and final stage of the recruitment is for the second iteration of the test phase of the information tool.Summary of Results
This research was sponsored by Bournemouth University and Robert White Legacy Fund. Volunteers from the Pancreatic Cancer United Kingdom Research Involvement Network helped to improve how this research was done.
The purpose of this research was to find out about the possibility of using a web-based information tool to support people with advanced pancreatic cancer (APC). The main research questions were: What are those unmet needs faced by people with APC in the choice of treatment? What is the publicly available, high-quality information that can meet these needs? Using the publicly available information, can a web-based information tool (WIT) be designed to support these people?
Patients, relatives, nurse specialists and doctors were recruited from two National Health Trusts in Southwest England between February 2019 and December 2020. Participants narrated their experiences with information sharing of APC treatment options following a diagnosis. Afterwards, participants tested a WIT that was designed for them. During the tests, the participants described what they found useful or areas of improvement in the WIT. Next, the participants were interviewed. Then, they were invited to complete a questionnaire about the WIT’s acceptability, user-friendliness, and relevance.
The results show that patients experience several enablers and barriers when choosing a treatment option. In some cases, their treatment preferences were not fully explored during hospital appointments. Publicly available information suffers from lack of empathy, unreliability, and the potential to overwhelm patients. Therefore, patients welcomed the introduction of a WIT provided it is used as an additional source of information. Their primary sources of reliable information are doctors and nurses. Additionally, the research uncovered recommendations that can improve the usefulness of WITs for vulnerable people. These are: reduce the overall difficulty of use, be positive in your communication, use summaries whenever possible, and display information in convenient steps.
This research has improved our understanding of the problems faced by people with APC as they consider treatment options. Furthermore, the findings provide a foundation for more research around web-based information support for APC treatment decision-making.REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
18/YH/0381
Date of REC Opinion
15 Nov 2018
REC opinion
Further Information Favourable Opinion