The Cystic Fibrosis Trust has launched a UK-wide Patient Reported Experience Measures (PREMs) Survey to enable people with cystic fibrosis (CF) and their families to express their views on the health service they receive within their CF centre.
Developed in consultation with people with CF and their parents, as well as healthcare professionals and the Trust’s Clinical Advisory Group, the survey was developed over 45 months and designed to gather information about key areas of CF care.
The survey covers five main areas:
1. Your CF team
2. Experiences of care
3. Infection prevention and control
4. Antibiotic therapy
5. Summary of your CF care.
Survey responses are anonymous, although patients providing their email address will have a copy of the report sent to them directly. The survey is open for a year from September 2019 to September 2020 in 24 paediatric centres and adult centres will have the opportunity to take part from September 2020.
Understanding the big picture
By early 2021, participating paediatric centres will receive reports showing their results for each question compared to a UK average. The report will help centres identify areas of their service to develop and the areas of their service highly valued by people with cystic fibrosis.
The Trust’s Quality Improvement team will be releasing a ‘Staffing Tool’ in October this year, designed to help centres monitor their vacancy and staffing levels. Centres could use the opinions of people with CF and their families on their care, information from the UK Cystic Fibrosis Registry on the health of their patients and the health care they receive, as well as staffing data, to help provide them with a clearer picture of the service they’re providing. This will help centres decide where to focus their efforts to improve the care experiences and outcomes for patients.
Patient experience is linked to clinical effectiveness
Tracy Turc-Milloy, the Trust’s Clinical Quality Improvement Manager, said: “Research shows us that patient experience is linked to clinical effectiveness and patient safety. By making it as easy as possible for patients and their families to comment on the care they receive and for centres to benchmark their results against a UK average for each area of care, we hope to help centres develop more ‘Quality Improvement’ projects. This is part of the Trust’s commitment to improving the quality and experience of CF care.”
The PREMs survey will be repeated every three years for both paediatric and adult centres. This will provide centres with the time to make changes in response to their survey results and the ability to measure patient and parent satisfaction with those changes.
Take part online today or at your next clinic visit.