Blog: Patients have a voice
When I received a phone call from Ailsa Bosworth MBE from National Rheumatoid Arthritis Society (NRAS) asking if I’d be interested in being involved in “a very important piece of work” with British Society for Rheumatology (BSR), little could I have imagined the significance in my reply.
Now some two years later, I'm proud to lead the patient involvement in the National Early Inflammatory Arthritis Audit (NEIAA), especially as this work was recently rewarded with the Richard Driscoll Memorial Award, recognising outstanding work in patient and public involvement. In this blog, I wanted to highlight the importance of the Patient-Reported Outcome Measures (PROMs) element of the NEIAA from a patient perspective.
PROMs are questionnaires about health and quality of life which help to understand how patients’ conditions change and this affects day-to-day activities. Historically, rheumatology departments collected this information at the time of appointments using paper forms. Due to COVID-19, rheumatology departments have had to adapt to new ways of working. Many appointments now happen by telephone, which means teams cannot collect paper questionnaires.
In August 2020, BSR launched a new ePROMs platform, available for free to rheumatology departments. The platform sends out questionnaires to patients by email and shares the information back with the clinical teams. This switch to online has the benefit of allowing patients more time to reflect on their condition away from the clinics, where perhaps there's a tendency to put a brave face on, play down symptoms, or gloss over issues such as low mood.
One of the questionnaires you might be asked to complete is the self-reported DAS (disease activity score) and NRAS has produced a helpful information pack to help complete this questionnaire. Other questionnaires ask about how severe your symptoms are, how much your disease impacts on your ability to do tasks and work, and questions about your mood.
To date, the participation levels of patients in this work has been good, although we continue to explore ways of making it better. At baseline, covering some 5,000 participants to date, patients reported a high impact of the disease, with significant levels of functional and work impairment, depression and anxiety. Improvements however were seen across all domains after three and again after 12 months.
As somebody recently diagnosed with rheumatoid arthritis, I feel it is vital that PROMs are continued to be used to provide the 'qualitative' element to the assessment of patient welfare, as the disease can have such a negative impact on mental health and the ability to work. The process of PROMs can also help facilitate patients to become more pro-active in the self-management of their condition
Paul Amlani-Hatcher is Chair of the Patient Panel and also sits of the Project Working Group of the NEIAA. He was diagnosed with rheumatoid arthritis in 2015.
Leave a Reply.