PSA Flanders: A go-to source for information about prostate cancer
The Prostate Cancer Service Alliance of Flanders is a non-profit organization that has been working for 15 years to provide better information about prostate disorders, erectile dysfunction, and incontinence. They address both the general public and healthcare professionals via lecture, conferences, publications, and social media.
PSA Flanders also actively participates in research, conducting their own research and collaborating with researchers from other organizations.
The Challenge: Getting responses to a quality-of-life survey
As part of their research, the team at PSA Flanders wanted to undertake a quality-of-life survey of men who were actively being treated with a standard-of-care hormonal therapy, i.e. androgen deprivation therapy (ADT), which is the backbone systemic therapy for men with advanced or metastatic prostate cancer.
The survey would consist of several forms asking about various aspects of their quality of life while undergoing the treatment.
Quality-of-life surveys have traditionally been done on paper. The survey forms are typically given to patients while they’re in the waiting room at the doctor’s office, before their appointment.
But this comes with several challenges. One is that the paper form often seems like it is being forced on them, and the patient must fill it out at that specific moment. The other challenge is that the paper form then has to be transcribed into an electronic system, which creates opportunities for mistakes in data entry.
PSA Flanders wanted a survey solution that would be a great experience for the patient and eliminate re-entry of the results and the errors that come with it.
The Solution: Greenlight Guru Clinical’s electronic survey feature
PSA Flanders turned to Greenlight Guru Clinical for their survey. According to Dr. Bram De Laere, a Clinical Cancer Researcher and scientific advisor at PSA Flanders, part of the initial appeal of Greenlight Guru Clinical was its modern design and usability.
Using Greenlight Guru Clinical’s modern EDC software, the team at PSA Flanders was able to quickly build a user-friendly survey that was sent to subjects via email. The survey was made via the patient advocacy organization Think Blue Flanders.
With Greenlight Guru Clinical, the men in the survey were able to anonymously log in and fill out forms about their quality of life and overall well-being on the hormonal therapy.
The Results: 92% survey completion and high-quality data
PSA Flanders enrolled 363 subjects during the designated time period of 7 months.
The results of the electronic survey were exactly what the team at PSA Flanders was hoping for. Not only did they get accurate, first-hand information on the subjects’ quality of life, they also experienced an astounding rate of survey completion.
92% survey completion rate
Out of the 363 subjects who visited the website and initiated the survey, 334 completed the survey—a 92% completion rate.
According to Dr. De Laere, a large part of the reason their response rate was so high was that Greenlight Guru Clinical allowed subjects to fill out the survey on their own time, when and where they felt most comfortable.
“The online survey provides a more considerate way to gather responses. It's not as intrusive as a paper form in a waiting area. The patients can take the time to review the survey invitation email and information in the comfort of their home, and decide whether they would like to participate or not.” - Dr. Bram De Laere, Scientific Advisor at PSA Flanders
That comfort factor, plus the ease of filling out the survey, is certainly part of what led to the high completion rate.
Accurate data straight from patients
A high completion rate means nothing, however, if you’re not getting accurate data from the survey. One of the most frustrating problems with paper is the opportunity for incomplete data or data entry errors when answers are transferred from paper forms to an electronic system, warranting source data verification by study monitors.
But as Dr. De Laere notes, when you use an electronic survey like Greenlight Guru Clinical’s, the data set is complete, and typically ready for analysis. “The system provides flexibility in how data frames are exported and are overall very clean and analysis-ready” he said.
On top of that, PSA Flanders knew that the responses they received from their survey were coming directly from the patient, without any inadvertent changes.
What’s next for PSA Flanders?
PSA Flanders aims to report their findings, present the data during national conferences, and will continue its mission to be a hub of knowledge and resources for men with prostate cancer.
They hope the information from the survey will lead to new hypotheses to test as they continue working to improve the quality of life for patients with prostate cancer.