How were patients involved in the PIMS study?

PIMS trial patient advisors

5 patient advisors accepted the invitation to join the project and they were involved throughout the research process, right from the initial application for funding. They offered invaluable insight on an advisory board and some were also part of the steering committee providing views on their condition, the value of the treatment and explained what advice they received after surgery.

“The patients have had a very important contribution towards the trial design. Multiple changes have been made to the design since the pilot study, as a result of their feedback”

Saruban Pasu, researcher on the PIMS study

This is an image of Saruban Pasu. He is stood at a lectern. He is looking down at his notes. There is a screen behind him and some grey curtains.

Patient voice - key changes made by patients

1. Changing the term used

Patients felt the term posturing (the face-down position) was misleading. As a result, the term was changed to ‘positioning’

2. Changing the main outcome measure of the trial

Originally the main outcome measure of the trial was going to be long-term improvement in patients’ sight. However, patients felt that closure of the hole was the highest priority, as this influenced whether they would need further surgery.

3. Changing what information is collected from patients

Patients also suggested that a questionnaire to assess patients’ quality of life following surgery be included in the research.

4. Changes to the information booklet

Patient involvement resulted in separate information booklets for patients in the face-down and face-forward arms of the trial. They also added information about clothing, eating and entertainment whilst positioning. The booklet now also included example schedules for the positioning regime and explanatory pictures demonstrating face-down and face-forward positioning.

5. Guidance to maintain face-down positioning at night was removed

Patient advisors explained that it was very difficult to sleep with your head face down. Not only was it uncomfortable, but they tended to wake up in the night, invariably in a different position. They explained that it is not possible to stick to, it was removed from the advise given to people on the trial.

“Having been through the treatment myself, I believe I have a duty to get involved in this research, to help improve things for future patients and to help move the science forward. The people on the research team listen and take on board our feedback, making us feel like valued and respected members of the team"

Roy Smith, patient advisor to the PIMS study

This is a picture of Roy Smith. In the image is his head and shoulders. He is wearing a shirt and a pale blue cardigan. He is sat in front of cream curtains.

Find out how to get involved as a patient advisor for research here.

You will find further information about the PIMS trial here.