Evaluation of a patient-initiated review system in rheumatoid arthritis: an implementation trial protocol

Rheumatoid arthritis (RA) is a chronic disease that primarily affects the synovial joints causing unpredictable episodes of joint pain, stiffness and swelling. There are approximately 400,000 people with RA in the United Kingdom (UK), with around 15 men and 36 women developing RA per 100,000 people per year [1]. It has been estimated that the total cost associated with RA in the UK, including indirect costs and work-related disability is between £3.8 and £4.75 billion per year [1]. People with RA often have lifelong symptoms that fluctuate on a daily or longer basis, intermittent disease flares, and an unpredictable long-term outcome. Hence, these patients need to develop the skills to manage their own condition and its consequences on their lives [2].

In the UK, the majority of people with RA are managed by routine medical review initiated by the hospital rheumatologist or rheumatology specialist nurse every 3–6 months. However, this traditional system of review may lead to a mismatch between clinical need and clinical input. Patients are often seen on a date determined some time in advance, and review may occur when the patient is well rather than during periods of exacerbation [2]. A previous study into the content of routine reviews of patients with RA reported that 30% of routine appointments resulted in no investigations or other action; 35% were seen to be problem free; and 42% were thought to be unnecessary [3]. Hence, it is likely that considerable hospital out-patient time and resources are wasted on the one hand and on the other hand the systems of review may be unresponsive at the times when patients need them most.

A randomised controlled trial (RCT) conducted in Bristol, UK, compared traditional 3–6 monthly rheumatologist-initiated review with patient-initiated review alone [4–6]. This trial reported that patient-initiated reviews maintained the patient’s physical and psychological status but reduced unnecessary medical reviews by at least a third, thus making more efficient use of finite resources. The trial data also showed that patients and GPs had more confidence and satisfaction in such a system when compared to clinician- driven follow-up. Numerous studies looking at the impact of open access patient-initiated follow-up clinics in patients with medical conditions such as lung cancer [7], breast cancer [8], diabetes [9], urinary tract infections [10], gastroscopy [11] and endoscopy [12] have also reported positive effects resulting from such clinics in terms of patient care and satisfaction, cost-effectiveness and efficiency.

The National Institute for Health and Clinical Excellence (NICE) guidelines for RA recommend that people with satisfactorily controlled established RA should be able to review the frequency of their appointments at a location suitable to them and in addition, make sure they have access to additional visits for disease flares and know when and how to get rapid access to specialist care [1]. Similarly, The British Society for Rheumatology (BSR) guidelines state that patients need an individualised management plan including choices for long-term follow-up care, and self-initiated access to primary or secondary care including telephone advice [13]. These guidelines support the need for systems that promote self-management of care and treatment in patients with RA.

Given the evidence from the trial by Hewlett and colleagues [6], and the recommendations from NICE and BSR, we decided to implement a patient-initiated review system at Plymouth Hospitals NHS Trust (PHNT) in the UK. The Trust currently has a clinician-driven, overwhelmed and delayed outpatient follow up system for people with RA. We believe that the introduction of this evidence based review system will help to empower patients and provide them with the opportunity to self-manage the disease through the ability to request their own prompt specialist review when required.

The implementation of the DA system in Plymouth will move the service provision from a traditional clinician-driven review system to a more flexible patient-driven system where patients can request help according to their needs. Our evaluation will provide routinely collected data enabling an assessment of the impact of implementing this type of service change in the National Health Service. In addition, the qualitative analysis will offer insights into the reasons why such a service implementation might be successful, and how both health staff and patients perceive both the benefits and drawbacks of such a change.

In the current evaluation we will be able to compare the changes in local services and inform local patients, commissioners and providers about the changes in rheumatology service provision. In the context of a previous RCT, the DA system was established as being more cost-effective, providing greater satisfaction to patients, GPs and rheumatologists, and reduced the delay in follow-up appointments compared with the traditional review system [6]. However RCTs cannot give evidence of how such a service change impacts on the delivery of healthcare in a routine setting. Our expectation is that this implementation of a patient-initiated system of care will reduce unnecessary appointments and costs, be more responsive to patients when they need rapid help, and through these processes empower patients to improve their own self-care. In the current financial climate it will be informative to see if these expectations are realised.

After advice from the National Research Ethics Service South-West (Bristol), UK, the quantitative and qualitative evaluations planned for this process do not require full, NHS ethical approval as is it an evaluation of a change in service. However, all interview respondents (both patients and professionals) will be volunteers and will all be provided with a detailed information sheet which describes the nature of the study. Written, informed consent will then be gained using a standardised consent form. Confidentiality will be emphasised at the outset and interview transcripts will be anonymised.