RHEUMAPS Wales: Inflammatory Arthritis

University of Aberdeen

National Centre for Population Health and Wellbeing Research, Swansea University

Around one third of the UK population live with a rheumatic and musculoskeletal disorder (RMD). According to The Welsh Government, arthritis and related musculoskeletal conditions affect close to 1 million people in Wales, and are a major cause of chronic pain and disability (Welsh Government, 2022).

This includes inflammatory conditions such as rheumatoid arthritis, psoriatic arthritis and axial spondyloarthritis, and rarer rheumatic conditions such as systemic vasculitis and lupus, where care is led by hospital-based specialists such as rheumatology. Other conditions such as gout, osteoarthritis and fibromyalgia are mainly looked after in primary care, with severe osteoarthritis requiring joint replacement by orthopaedic specialists. Some people have more than one condition, for example, rheumatoid arthritis and osteoarthritis.

National audits have highlighted significant unwanted variations in access to care and outcomes for different groups of people with RMDs across the UK.

To support services to better meet the needs of their local populations, it is essential to understand how many people in each region have each condition, who they are, where they live, what services are currently available, and where these services are in relation to the people who need them.

However, much of the data we currently have is patchy and collected by different systems that don’t talk to each other. Because some conditions are looked after mainly in primary care, they are not picked up just by looking at hospital records. This makes it hard to plan and target healthcare services to meet patient’s needs.

The RHEUMAPS (RHEUmatic and musculoskeletal conditions: geographical MApping of Prevalence and outcomeS) study aims to address these gaps by:

(a) understanding the priorities for care across different groups of patients with a broad range of RMDs, and the resources and components of service that are important to meet these needs, and;

(b) measuring the prevalence and outcomes of RMDs across different geographical areas in Scotland and Wales using national administrative healthcare data.

We have created a series of interactive maps to share our some of our findings and support local and national service planning. These maps are designed to be used as a starting point for discussions that bring together patients, NHS staff and healthcare planners to identify the needs of the local population and plan how they can jointly improve care.

In this Story Map you can explore the data on people with a diagnosis of inflammatory arthritis in Wales.

Inflammatory arthritis is the term for a group of autoimmune conditions which includes rheumatoid arthritis, psoriatic arthritis and axial spondyloarthritis. In these conditions the immune system attacks parts of the body, causing inflammation and damage. For example, in rheumatoid arthritis the immune system attacks the body’s joints, causing inflammation, swelling, pain, stiffness and damage to the joints. It can sometimes affect other parts of the body such as the lungs and heart. Psoriatic arthritis is linked to psoriasis (another autoimmune condition affecting the skin). This causes inflammation, swelling, stiffness, pain and damage to the joints. In axial spondyloarthritis, the immune system attacks the spine and sometimes joints causing inflammation, stiffness, pain, and damage.

There were 2,061,396 individuals aged 18 years or older who were resident in Wales in 2018 and eligible for inclusion. People with relevant READ codes for inflammatory arthritis, identified from a review of the research literature, were identified from the Wales Longitudinal GP dataset (WLGP). This included rheumatoid arthritis, psoriatic arthritis and axial spondyloarthritis.

When interpreting the data it is important to note that the WLGP has around 83% population coverage. There is poorer coverage in some rural areas, particularly in Powys. Health data is collected in primary care for the purpose of running the practice and delivering care, not for research or service planning, and how this is done varies between practices. Furthermore, we can only capture healthcare within NHS Wales, which does not include care received across the border in England, or the private healthcare sector. Therefore, routine healthcare data must be considered alongside the local health context and lived experience of patients and healthcare providers. It is important to consider what the data can and cannot tell us when planning services.

Overall the point prevalence of inflammatory arthritis in Wales in July 2018 was 9 per 1000 people. This is in keeping with known population estimates.

We then looked at the prevalence of inflammatory arthritis within Health Boards and Primary Care Clusters across Wales, as this is important to inform local, regional and national service planning.

The following maps tell us about the prevalence of inflammatory arthritis in relation to where people live (in a rural or urban area) and area-based measures of deprivation (income component of the Welsh Index of Multiple Deprivation (WIMD). Understanding this is important for service planning to help ensure that appropriate care and support can be tailored to local population needs.

In the maps below the count prevalence of inflammatory arthritis is shown as points where populations are concentrated (population-weighted centroids for 2011 census).

RMDs account for one of the most common causes of days lost from work in the UK and people deciding to stop work earlier than intended. Evidence from studies shows how people with RMDs can be effectively supported to remain working and several resources and interventions already exist.

However, a UK-wide survey conducted as part of the RHEUMAPs study found that younger people, those with non-inflammatory RMDs and not working due to ill health were most likely to be dissatisfied with their care. Specifically, people identified support to work as a key unmet need. Access to care was also an issue for many people. Further information can be found here   Technical Reports and Summaries | The Institute of Applied Health Sciences | The University of Aberdeen  .

Understanding how many people of working age with RMDs are in a given geographical area is important to ensure provision and targeting of support to those who wish to work and improve access to services, for example, by considering timing of appointments and access to services outside of normal working hours.

The first map shows the count prevalence of inflammatory arthritis in the work age population (18-65 years). The second map shows the count prevalence of inflammatory arthritis in those 65 years and over.

We collected information on the prevalence of joint replacements in individuals with inflammatory arthritis.

There is some limited evidence to suggest outcomes may be poorer for rural dwellers with inflammatory arthritis (Hollick and Macfarlane, 2020). This may be related to differences in perceptions and expectations of care, delayed presentation and access to services, as well as occupation.

People with inflammatory arthritis require long-term specialist care, led by Rheumatology services. However, drug monitoring may be done in primary care.

In our survey and interviews with people with RMDs, problems physically accessing services was an issue for people no matter where people lived. For example, those living in urban areas often reported difficulties accessing public transport and struggled with inconvenient appointment times just as much as those living in rural areas. Similarly, slow broadband speeds and caring responsibilities were important issues for both urban and rural dwellers. However, travel difficulties to access care were more frequently reported in rural dwellers.

However, it wasn't just the presence or absence of local specialist services, or physical access that mattered. People told us it was important to know where to go for help – a ‘map and compass’ to signpost to relevant self-management – and to have timely access to community-based and specialist services. A complex interaction between factors affected people’s ability to access services.

Using geographical and administrative health care data, for each household in Wales we calculated travel times by car and bus to the nearest service providing specialist rheumatology services. This was then aggregated to LSOA level, a statistical population geographical unit which on average represents 1500 people.

This information is useful to consider when planning rheumatology services.

At a health board level most people, when aggregated using median travel time, seem to have reasonable travel times to hospital-based care. However, these aggregate measures can hide accessibility issues, particularly in rural areas, as highlighted above and in our survey.

Individuals with inflammatory arthritis on disease modifying medications and travel times by car of more than 60 minutes to their nearest rheumatology service were half as likely to have a rheumatology outpatient appointment within the first year from index date​. This difference was independent of age, sex, deprivation, comorbidity and frailty, and persisted at 4-5 years following diagnosis.

A large proportion of those with travel times of more than 60 minutes to rheumatology services were aged 60 years and above. They were also more likely to have one or more Charlson comorbidity (73.2% vs 70.6%), with 23% having three or more comorbidities.

• Data for adults (18+) registered with an NHS GP in Wales, does not include any individual residing in Wales but receiving care either privately or in England (or another country).
• We assume that individuals are accessing hospitals for routine or planned care within their healthboard.
• Percentage prevalence data at the LSOA level has been 'cut out' of LSOA boundaries to link to buildings, but this does not identify individuals.
• Distance to nearest hospital data are calculated based on the Welsh driving network and public transport in Wales, it does not take into consideration any routes that might traverse the England/Wales border and which may influence the travel times obtained for households near the border.
• Prevalence data are aggregated from the individual level to the census tract or 'Lower Super Output Area' LSOA, version 2011 (ONS).
• Distance data are aggregated from the household level by LSOA.
• For the health board medians, we used the LSOA data within the health board.

The Nuffield Foundation is an independent charitable trust with a mission to advance social well-being. It funds research that informs social policy, primarily in Education, Welfare and Justice. The Nuffield Foundation is the founder and co-funder of the Nuffield Council on Bioethics, the Ada Lovelace Institute and the Nuffield Family Justice Observatory. The Foundation has funded this project, but the views expressed are those of the authors and not necessarily the Foundation. Visit  www.nuffieldfoundation.org.