Experiences of men with prostate cancer of information in radiotherapy
Research type
Research Study
Full title
The lived experiences of men with early-stage prostate cancer when receiving information related to a course of radiotherapy in the UK.
IRAS ID
166436
Contact name
Lynne Gordon
Contact email
Sponsor organisation
University of Hertfordshire
Clinicaltrials.gov Identifier
n/a, n/a
Duration of Study in the UK
1 years, 11 months, 28 days
Research summary
Summary of Research
During a course of radiotherapy, prostate cancer patients are given a large volume of information. Previous research has investigated patients’ thoughts about radiotherapy information, but this was done either using questionnaires, or was not specifically aimed at men with prostate cancer. This study is different because it will allow in-depth exploration of mens' experiences regarding information they receive during their course of radiotherapy. The findings have the potential to improve standards of care for patients with prostate cancer by informing therapeutic radiographers' practices regarding the information delivery/ exchange part of their role.
Participants will be recruited from one, large English radiotherapy department. Patients with early-stage prostate cancer referred for external beam radiotherapy or brachytherapy, and their wife/partners will be invited for one, ninety minute interview approximately one month following completion of radiotherapy. Each patient will have the choice of whether their wife/partner participates.
Therapeutic radiographers from the same department will be invited to participate in a one hour focus group interview in order to provide context to the patient experience. It is anticipated that recruitment of participants will continue for 1 year.
With permission, interviews and focus groups will be digitally voice recorded and transcribed verbatim. Data will be coded using NVIVO 11 data management software and analysed thematically. Analysis will run concurrently with recruitment of participants. Recruitment of patients and wives/partners will continue until no new themes are identified (data saturation) or when 25 sets of interviews have been completed. All 30 Radiographers working at the study site will be invited to participate. A maximum of 25 radiographers will be recruited. Themes within and across participant groups will be analysed/compared.Summary of Results
This study is entitled: Experiences of men with prostate cancer regarding information related to radiotherapy in the UK The research was carried out by Lynne Gordon as Doctoral research, supervised by Dr Angela Dickinson and Dr Wendy Wills, with sponsorship from the University of Hertfordshire.
Public involvement in research was included in two ways. Firstly, the University of Hertfordshire Public Involvement in Research group (PIRg) commented on the research design. More information about the group’s structure and activities can be found at https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Fclick.pstmrk.it%2F3ts%2Fwww.herts.ac.uk%252Fresearch%252Fcentres%252Fcripacc%252Fpublic-involvement-in-research-group-pirg%252Fpublic-involvement-research-group2.%2FNBTI%2FK5_5AQ%2FAQ%2F4fba2a99-956b-45d9-8971-2099941dd76a%2F1%2FnxJwFK8_Bc&data=05%7C02%7Capprovals%40hra.nhs.uk%7Cbf8ca0e78d80429c10ff08dd0e394a98%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638682361411181806%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=vNQitB9MJUlmCC96rM0gSS%2Bzo%2FsOMvEKusjUKV4t4rA%3D&reserved=0 Secondly, three members of a cancer support group agreed to comment on the suggested research. They were three men who had previously been treated for prostate cancer. Their suggestions and comments led to the involvement of participants spouses or partners in the interviews.
The study took place between August 2017 and August 2019 in the UK.
The research was needed because there had been lots of research studying the experiences of men with prostate cancer, and others studying issues related to information for cancer patients. However, there had been none that focussed on the experiences of patients with prostate cancer specifically when receiving information during the radiotherapy part of their cancer management.
The research aimed to find out:
• the factors affecting the understanding of information received/exchanged by men undergoing radiotherapy for prostate cancer
• whether information received was exchanged in a timely manner, appropriate to, and sufficient for their needs
• what information for men with prostate cancer was given/exchanged before, during and after radiotherapy
• whether men with prostate cancer had unmet informational needs
• the thoughts of therapeutic radiographers related to information they give men undergoing radiotherapy for prostate cancer
• the role of patients’ wives related to information given during the course of radiotherapy.The participants of the study were 20 men diagnosed and treated with radiotherapy for prostate cancer, 12 of their wives, and 14 therapeutic radiographers.
Individual interviews were carried out with the men and their wives, and focus group interviews were carried out with the therapeutic radiographers. The interviews were voice recorded and the recordings were then transcribed to produce text files. The files were then analysed to see what themes were present, related to the study aims.
The analysis of interviews found that information could not be seen as a specific issue within the patient’s course of radiotherapy. Information received before and during radiotherapy had an impact on longer term quality of life outcomes. Some participants reported that they received too much information, others said that they did not receive enough, especially when they were asked to make decisions about which cancer treatment to choose. Some participants felt that if they had received the right amount of information in the early stages, they would have made different decisions. This was mainly due to the side effects they reported experiencing many months after treatment. This was particularly important when participants spoke about changes to sexual function as a result of prostate cancer treatment, and whether they felt they had received enough information about this at an early enough stage. Generally, participants were very happy with the quality and amount of information received while they were receiving radiotherapy. The study also found that the way information is communicated, who by, and the point at which someone received information were important factors in deciding whether information was useful.
The study has helped us to understand that information in radiotherapy needs to be considered with respect to an individual patient’s situation, and what happens to them before, during and after radiotherapy.
The results of the study have helped some recommendations to be given that may improve future patient care and quality of life in the longer term. These include ensuring patients have enough time to take in any information they are given so that they are able to make fully informed decisions about treatment options. It is recommended that patients should be provided with more information and services immediately after the end of treatment. Finally, it is recommended that there should be better education about sexual dysfunction for any health care professional caring for patients with prostate cancer, so that they can give higher quality information to patients.
You can learn more about the study in the published dissertation document, available at https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Fclick.pstmrk.it%2F3ts%2Fuhra.herts.ac.uk%252Fhandle%252F2299%252F26387%2FNBTI%2FK5_5AQ%2FAQ%2F4fba2a99-956b-45d9-8971-2099941dd76a%2F2%2FN3KDU50SvR&data=05%7C02%7Capprovals%40hra.nhs.uk%7Cbf8ca0e78d80429c10ff08dd0e394a98%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638682361411211154%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=Rm0TFK73cr3zmI0x%2FB0vxr7MCPxtDRD6i33XYe2YJ%2BU%3D&reserved=0REC name
North of Scotland Research Ethics Committee 1
REC reference
17/NS/0044
Date of REC Opinion
2 May 2017
REC opinion
Favourable Opinion