2021– A year in axSpA research! Part four

Hello Everyone!

I hope everyone is managing to stay well during these frosty mornings.

Today’s blog continues with research updates for 2021- October to December. Below are some article summaries on various topics including 1) what effect doing another task while walking has on gait (the manner or style of walking) in axial spondyloarthritis (axSpA), 2) patient perspectives on the axSpA diagnosis journey, and 3) mental health risk factors in axSpA.

The effects of a secondary task on gait in axial spondyloarthritis

October 2021. Soulard and colleagues. https://www.nature.com/articles/s41598-021-98732-z

There is a lot of evidence that suggests that gait pattern is adversely affected when performing a secondary or dual-task whilst walking such as carrying an object, talking with someone, calling or texting on a smartphone, or other attention-demanding tasks. If you are very mobile/active, it may be difficult to imagine that this would negatively affect gait pattern as we very often carry out another task while walking! This change in gain pattern has been observed in young healthy individuals, and has also been reported in older adults and those with neurological disorders (such as stroke). The literature suggests that walking in older people, or those with some medical conditions, requires greater cognitive resources due to them having gait disorders, compared to young health people. Gait disorders are altered gait pattern which can be due to various things like age, deformities, weakness or pain. Recent studies have shown that similar gait disorders have been reported in axial spondyloarthritis (axSpA). This study aimed to compare gait patterns in people with axSpA while performing another task, compared to matched healthy people (matched by age range, sex, and ability to walk 180m without technical help). The authors make an important point which is that interpreting changes in dual-task walking performance is difficult, and it is dependent on various factors including gait capabilities of individuals.

For the study, people were asked to walk 10m at a comfortable speed and to carry a full cup of water in their dominant hand with the instruction to “perform both tasks as well as possible”. The performance of this task was assessed by any spillage of water. They also walked the same distance without carrying a full cup of water. Sensors with gait analysis software were placed on the shoes of people participating to measure the following:

· Speed: Average walking stride velocity of forward walking
· Cadence: Number of steps in a minute
· Stride length (metres): Distance between two consecutive footprints on the ground, from the heel of a foot to the heel of the same foot, one cycle after
· Swing time: Portion of the cycle during which the foot is in the air and does not touch the ground
· Stance time: Portion of the cycle during which part of the foot touches the ground

People included in the study had an average disease duration of 11 years, average morning stiffness of 28 minutes, low disease activity and low impact on physical functioning. The results of the gait analysis showed that the gait of healthy people and people with axSpA was adversely affected in the same way when trying to carry out a manual task. This is an interesting finding because the authors of the article thought people with axSpA would be affected more when carrying out a task while walking. This finding could have been because carrying a full cup of water was not challenging enough, or that the people involved in the study had low disease activity. Nevertheless, it’s great to see that different types of studies are being conducted in axSpA to explore the effects of the disease. However, as this may be the first study to look at gait pattern in axSpA, more studies would need to be conducted to create a broader understanding of the impact of dual-tasking whilst walking.

If you have experienced any differences in your walking pattern while dual-tasking and would like to share your experience, feel free to email me on: ns2271@bath.ac.uk

Patient perspectives on health care provider practices leading to an axial spondyloarthritis diagnosis: an exploratory qualitative research study

December 2021. Lapane and colleagues. https://bmcprimcare.biomedcentral.com/articles/10.1186/s12875-021-01599-2

Previously we have seen that people with axial spondyloarthritis (axSpA) have a long wait to receive a diagnosis- approximately 8.5 years on average in the UK. Those with a longer wait for diagnosis have to wait longer for treatment, and as a result may have more structural damage, worse physical function, and worse quality of life than those with a timely diagnosis. It is important to get an early diagnosis because starting treatment earlier can lower the likelihood of disease progression and reduce the extent of disability. The factors known to contribute to delayed diagnosis include GPs not having awareness of the condition and a lack of diagnostic criteria. Initiatives such as Act on Axial SpA (launched last year by the National Axial Spondyloarthritis Society) are working hard to tackle these factors head-on and reduce the delay to diagnosis, to ultimately provide better care for patients. Find out more about the Act on Axial SpA campaign at the end of this blog summary!

This study by Lapane and colleagues is about people’s experiences during the journey to being diagnosed with axSpA, and people’s perceptions regarding what they thought might be successful and effective approaches to screening for axSpA. Six focus groups were conducted in the USA with people currently diagnosed with axSpA. Three groups were created based on length of delay in diagnosis: early (less than two years), mid (3-7 years), and late (more than 7 years). Questions were based on topics such as early symptoms, diagnostic journey, and advice for primary care doctors (e.g. GPs) on how to reduce axSpA diagnostic delay.

Twenty-six people took part in the focus groups, with an average age of 53 years. Average age at first symptom was 22 years, average age at which they first discussed their symptoms with a GP was 24 years, and the average age at diagnosis was 34 years. The results of this study found that people with a diagnosis of axSpA described a long and frustrating journey to get a diagnosis. They attributed the delay to things like absence of a definitive diagnostic test, indistinct disease characteristics (e.g., intermittent, vague symptoms), and factors related to healthcare providers (e.g., lack of awareness about axSpA, time, trust), and the healthcare system (e.g., brief duration of clinical visits, limited access to rheumatologists). People also described instances when their ‘severe’ symptoms were not taken seriously, or dismissed completely, or told that their symptoms were psychosomatic (originating from mental or emotional causes). The advice that people who had suffered a long delay to diagnosis wanted to give to GPs was: “provide patients with adequate time for them to give a complete picture of their experience with their illness, listen to them, believe them, and partner with them throughout the sometimes-lengthy diagnostic process”.

Another issue that came up when talking to people in the focus groups was that the time given to speak to a GP about their initial symptoms was not long enough- around 5 minutes. This was not enough time to share their entire illness experience. Some people in the study had arrived at their own diagnosis of axSpA by researching their symptoms prior to their GP appointment. Also in this study, people mentioned that the average time to see a rheumatologist was 4 months. The authors conclude that people who took part in this study want what all patients want from primary care: “a trusting, longitudinal relationship with a competent, caring primary care provider who is committed to their well-being”.

What is Act on Axial SpA?

In the UK, the National Axial Spondyloarthritis Society (NASS) are committed to working towards a reduced delay to diagnosis in axSpA. The Act on Axial SpA campaign was launched by NASS in 2021 to help raise awareness of axSpA among the general public and healthcare professionals. The campaign outlines 4 key solutions to reduce the delay to diagnosis of axSpA to just 1 year from symptom onset. To ensure that people receive appropriate treatment and care earlier on in their condition, to ultimately improve clinical outcomes. One of these solutions aims to help people in the general public better understand the condition and its symptoms, and empower people to consult their GPs at the earliest opportunity. See a previous blog where we provided more information on this campaign. If you want to find out more, please visit the Act on Axial SpA campaign website, with details on symptoms including a symptom checker, support with how to talk to a healthcare professional, some stories of people suffering with axSpA, and blogs too.

Examples of initiatives to help improve axSpA diagnosis

Although a diagnostic test is not available for axSpA, a SPondyloArthritis Diagnosis Evaluation tool (SPADE) has been developed to assist healthcare professionals to determine the likelihood of axSpA in someone who has chronic back pain, is below the age of 45, with no definitive axSpA-related changes on X-ray. This tool has been developed by Dr Raj Sengupta and the Royal National Hospital for Rheumatic Diseases in Bath. It is easy to use and can be extremely helpful when considering a referral to rheumatology for someone with potential axSpA.

Hopefully, with the introduction of these initiatives, diagnosing axSpA for those suffering with back pain will not be as frustrating in the future.

If you would like to share your experience of a delay in diagnosis, feel free to email me on ns2271@bath.ac.uk

Impact of axial spondyloarthritis on mental health in Europe: results from the EMAS study

October 2021. Garrido-Cumbrera and colleagues. https://pubmed.ncbi.nlm.nih.gov/34740979/

There is some research to suggest that the factor most associated with psychological health in axial spondyloarthritis (axSpA) is disease activity. In 2019, one study was conducted to find out, from the perspective of people with axSpA, what they thought contributed to the burden of axSpA. The study involved a survey being sent out to 2846 people across 13 European countries: Austria, Belgium, France, Germany, Italy, the Netherlands, Norway, Russia, Slovenia, Spain, Sweden, Switzerland and the UK.

The aim of the current study was to use the data from the survey to specifically identify what factors could identify the risk of mental disorders in people with axSpA. A number of different patient-reported outcome measures or questionnaires were included in the survey such as the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) to assess disease activity, the Functional Limitation Index to assess the degree of functional limitation in 18 activities of daily life, and the General Health Questionnaire (GHQ-12) to measure mental health disorder risk. The GHQ-12 is a screening tool for identifying common mental health problems in the general population, and includes symptoms of anxiety, social dysfunction and loss of confidence. People included in the survey were aged 18 years or over, diagnosed with ankylosing spondylitis (AS- the radiographic form of axSpA) or non-radiographic axSpA (nr-axSpA), and had visited a healthcare professional for axSpA in the 12 months prior to taking part.

A total of 2166 people took part in this study, and of these, 60.7% were classified as at risk of mental health disorders based on their GHQ-12 score. The study showed that Russia and France had the worst mental health disorder risk, whereas Austria and Switzerland had the lowest. The analyses of data also revealed that the factors associated with risk of mental health disorder were: younger age, female sex, unemployment, temporary sick leave, permanent sick leave, previous anxiety diagnosis, previous depression diagnosis, higher level of disease activity, and worse functional limitation.

Unfortunately, these results show that anxiety and depression are six times greater among people with axSpA in comparison with the general population in Europe. However, in clinical practice, there remains a gap in the assessment of mental health which may be leading to an underdiagnosis and undertreatment of common mental health disorders among people with axSpA. Higher disease activity can leave people with axSpA feeling anxious and distressed about their uncontrolled pain, fatigue and joint stiffness; in addition, worsening mental health can also influence disease activity.

This study is further evidence of the importance of optimising axSpA care by adopting a holistic approach to its management, in order to address these wider issues. It draws attention to the need for increased mental health support in axSpA, and a need to properly assess for, recognise and treat mental health problems in people with axSpA. Publications such as this also raise awareness of how to identify those at greater risk of mental health problems in axSpA, so that in future, hopefully mental health disorders can be better recognised and properly treated. If you are struggling with your mental health, or suffering from depression or anxiety, please reach out to a healthcare professional for help.

If you have been affected by the issues raised in this article, please refer to the following help on the National Axial Spondyloarthritis Society (NASS) website: https://nass.co.uk/about-as/what-is-as/your-wellbeing/.

On this webpage, there are also links to charities such as Anxiety UK, CALM, Mental Health Foundation, and MIND.

Summary & Sign Off!

I hope you have enjoyed reading these summaries of research, and found the information useful.

If you want to share your experience of any issues related to this blog, please contact me on: ns2271@bath.ac.uk. I would love to hear from you!

Best Wishes,

The Project Nightingale Team