Background Measuring patient experience (PREMs) and Patient reported outcomes (PROs) in the health care setting have become a priority in health care in the past 5 years. Collection of these measures enables quality, safety and value of care delivered to be demonstrated. In response to a need to collect patient outcomes both the National Rheumatoid Arthritis Society and the British Society for Rheumatology in the UK have devised PREMs and PROs questionnaires to support the commissioning, provision and performance of rheumatology services. Additionally the British Society for Rheumatology is piloting these questionnaires across the UK as part of the Health Quality Improvement Programme (HQIP).
Objectives The WMRNSN piloting PREMS, PROs and Work questionnairs in clinic practice. To demonstrate quality of care provided and identifying gaps quality of patient care.
Methods The format of the questionnaire following approval by a local rheumatology patient group and research and development approval obtained from 7 hospital Trusts across the West Midlands. The questionnaire was then used to survey 309 inflammatory arthritis patients seen in rheumatology nurse led clinics during May – July 2015. Patients completed and submitted the questionnaire anonymously following a clinic visit and the author extracted and analysed the data.
Results The WMRNSN have shown 309 patients with inflammatory arthritis seen in rheumatology nurse led clinics had a positive experience of care in the past year. Negative experiences were patients reporting not being aware of the following:
1. Referral to other members of the multidisciplinary team was available
2. Information available was available about UK based national support groups
3. There was opportunity to attend a self- management course
4. Family members could attend consultations to help them make treatment decisions
5. They could discuss personal and intimate issues.
Patient reported if appointments were suddenly cancelled or if they needed to be seen sooner they wait 4 weeks or more to be seen. A third of patients reported poor disease control preventing them from managing day to day which was concordant with the PROs visual analgoue scores which were on average 4.9 or great for pain, sleep, fatigue, physical disability, emotional wellbeing, physical well being and pain. The work questionnaire reported unhelpful data in that; the age ranges do not reflect working ages within the UK nor identify the nature of work e.g. Studying, working from home, raising children, homemakers or retired. Additionally it does not capture hours worked or the difficulties experienced by patients regarding work. A fact sheet has been developed by the WMRNSN to provide patient information on these issues.
Conclusions We suggest collection of PROMS and work data is more useful to patients when used individually during their appointment. The Trusts who took part have their results and as evidence for nurses' revalidation. Finally PREMS, PROs and Work data we recommend routinely collecting this data to demonstrate quality, improve patient experience and health outcome. Resources and IT needs to be available to facilitate this.
Acknowledgement Thanks to the 7 particpatint Trusts and the West Midlands Rheumatology Nurse Specialist Network
Disclosure of Interest None declared