Make time for talking
Talking AS is a web-based tool that lets patients maximise limited time.
Musculoskeletal conditions, encompassing around 200 different conditions, have been underprioritised in the NHS for too long and there is a lack of understanding of these types of conditions and their impact across public health, the NHS and social care.
Conditions such as ankylosing spondylitis (AS) and rheumatoid arthritis (RA) cost significant amounts in welfare and benefit payments.
For example, the overall cost to the UK economy from productivity losses associated with RA has been estimated to be £8bn. The cost of AS also has the potential to be quite significant and therefore needs to be prioritised.
The government’s health and social care reforms, with their focus on improving clinical outcomes, greater integration between health and social care aims to deliver high quality, personalised care and provide opportunities to improve services for people with musculoskeletal conditions.
In addition, with the transfer of commissioning responsibilities at a local level from PCTs to clinical commissioning groups already under way, new research published by Arthritis and Musculoskeletal Alliance (ARMA) demonstrates that musculoskeletal services continue to suffer from large scale variation in the way that they are delivered.
One of the key overarching recommendations that came out of ARMA’s recent Joint Delivery report was that PCTs and clinical commissioning groups should provide information for patients on musculoskeletal conditions to help them self-care.
AS is a long term, progressive, autoinflammatory disease, which primarily affects the spine, causing inflammatory back pain and stiffness. The disease often follows a “flare” pattern with exacerbations often resulting in significant discomfort for the patient. Regular assessment is key to managing the condition as it allows for the disease state to be monitored and therapy adjusted accordingly.
Monitoring is made difficult as available blood tests do not correlate well with disease activity and imaging modalities such as MRI scans remain too expensive. Patient reported outcome measures, such as the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) and the Bath Ankylosing Spondylitis Functional Index (BASFI) are well validated in AS. While being a subjective assessment of a patient’s disease state, they remain quick to complete and a useful means of monitoring an AS patient over time.
There is, however, huge variation across the UK in terms of getting patients to fill out their outcome measures at all or on a regular basis. This is due to a number of reasons which may include the short duration of the clinic appointment (15 minutes), availability of the questionnaires in the clinic room and the inability to remember the scoring systems. Even when the clinician has remembered to give the patient the relevant questionnaires, the patients may have had a stressful journey to the hospital and complete the questionnaires in a hurry.
NICE guidelines state that AS patients should be assessed by their specialist every three months if they are on biologic therapy. It is impractical for UK rheumatology centres to see AS patients on biologics every three months due to pressures on outpatient appointments. Non-biologic patients are seen just once a year.
Patients may not accurately recall just how bad - or good - they may have been over the previous year when they actually sit in front of their clinician, thus rendering the consultation sub-optimal.
Talking AS is the first web based tool of its kind that allows patients to record outcome measures remotely, enabling specialists to optimise the way they monitor and follow up individual patients over time.
For AS patients on biologics, the clinician can optimise their outpatient services by ensuring patients log on to the Talking AS system every three months and visit the HCP every six months for a formal review. Patients can also log on to the system at any time to complete the outcome measures whenever they have a flare in order for their clinician to see how many and how severe their flares have been since their last appointment.
Making the most of it
The aim of Talking AS is not to replace 1:1 contact with patients but to maximise the limited time available during appointments and to help HCPs monitor the progress of their patients more effectively. Unnecessary appointments could be reduced for patients who appear to be doing well based on their own feedback and the patients that may need to be seen sooner than their next scheduled appointment can be identified and ‘brought forward’.
Talking AS enables patients to graphically see their own progress - or lack of progress - over time, thus empowering them to identify any issues that their physician/HCP may be able to help them with during their clinic appointment. It puts the patient in control of their condition. This could also have a positive impact on patient adherence to physical therapy where patients rarely partake in regular stretches and exercises which would significantly benefit them when performed on a regular basis.
Talking AS ensures the uniformity of service provided to all AS patients in the UK. It allows commissioners to measure important metrics such as the number of AS patients within each CCG, the desired response criteria for those AS patients on biologic treatments and the quality of service being delivered in secondary care centres.
In summary, the Talking AS tool is designed not only to benefit patients and HCPs but the advantages of this system can also be recognised by commissioners and those involved in service design:
- Patients are empowered to take control of their own treatment plan, enabling accurate monitoring of their progress whilst ensuring they see their specialist as and when they need to according to their own personal progress
- HCPs are able to chart the progress of their patients online and optimise the limited time they have with patients
- Commissioners are able to assess a unit from a service design perspective at a glance and to draw data not only on regional/national prevalence figures but also regarding levels of access to services on a regional basis
Dr Raj Sengupta is consultant rheumatologist at the Royal National Hospital for Rheumatic Diseases.