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Research

The Chartered Society of Physiotherapy launches a summer campaign which aims to tackle the growing issue of physical inactivity across the UK.

‘Love Activity, Hate Exercise?’ addresses the emotional as well as physical barriers millions of people with long-term conditions face in being more physically active.

The campaign is aimed at people aged 40-70 years old that are living with conditions such as arthritis, diabetes and heart disease, after research from the CSP found that more than 30% are completely inactive each week.

It was developed through a series of focus groups and research with patients and physiotherapists, and is designed to raise awareness of the expertise the profession has in getting people with long-term conditions more active.

CSP assistant director Sara Hazzard said: “We wanted to develop something that harnessed the expert knowledge our members possess to ultimately promote Physiotherapy and its unique role to improve the health of the nation.”

“Our research found that patients see physios in a really positive light but that they aren’t always associated with physical activity. So unlike campaigns that are often aimed at the general public, ours has been designed to reach the people who can be – or are already being – helped by their advice. It aims to take an empathetic approach and build on the trust that the public has for the profession.”

The CSP has developed digital content that is built around the specific barriers that were identified in the insight phase, along with practical advice on how those concerns can be overcome. Additionally a series of case study interviews will aim to inspire conversations between physiotherapists and their patients about activity levels.

For more information visit csp.org.uk/activity or join in the conversation on Twitter using the #loveactivity.

The MSK physio-themed review is now live.

Moving Forward – Physiotherapy for Musculoskeletal Health and Wellbeing  highlights evidence from the National Institute for Health Research and others on why research in this area matters, assessment and matching patients to treatment, restoring musculoskeletal health and maintaining musculoskeletal wellbeing.

 

It features:

  • 37 published studies
  • 25 ongoing research projects
  • Questions to ask your physiotherapy musculoskeletal services

 

You can download this review from the National Institute for Health Research website.

As part of our Clinical Networks Project, ARMA wants to find out what is happening to improve MSK services across England in order to see how we can best target our support for improvements. Please let us know what is happening in your area by completing this short questionnaire, which should take only five minutes to complete. The information is anonymous and we won’t name individual CCGs or STPs.

The report on the findings will give a national picture of what is happening and help all those working to improve services better target their work. Thank you for taking the time to respond to this survey. The information you provide will be used to help to improve services for people with musculoskeletal conditions.

Introduction

Across a range of MSK conditions there is evidence of significant delays to diagnosis which result in avoidable morbidity and mortality. GPs have a critical role to play in reducing time to diagnosis. This article looks at the delays, their impact, and the resources available to GPs to support their referral decisions. Our simple message is #ThinkRheum.

Delay to diagnosis

Significant delay from symptom onset to diagnosis has been seen across a range of MSK conditions: an average of 6.4 yeas in Lupus [1], 8.5 years in axial spondyloarthrtis (axial SpA) [2] and an estimated 10 years in Ehlers-Danos syndromes (EDS).

Although some of the delay can be attributed to patients not reporting symptoms to their GP, the largest delays occur within the healthcare system. These include GPs not referring patients to rheumatology, referral letters to GPs from osteopaths and chiropractors not being actioned, and a lack of understanding among radiologists and other specialties. In a recent study, patients presenting with acute anterior uveitis (AAU) were evaluated clinically and with MRI in order to estimate the prevalence of axial SpA; the study found that one quarter of axial SpA patients were previously undiagnosed.[3]

Impact of the delay

As with all conditions, rapid diagnosis is key to effective medical care and treatment. A delayed diagnosis can mean having to live with prolonged pain, with the untreated disease progressively worsening.

In Lupus, delay in accessing effective treatment also increases the risk of permanent organ damage and disability, and even death [4]. Studies have shown that SLE patients who are diagnosed early, on average, have lower rates of mild, moderate and severe flares, and lower rates of hospitalisation [5]. Early diagnosis can be especially important in cases of lupus nephritis with research demonstrating that a delay between the onset of nephritis and a renal biopsy constitutes an important risk factor of end-stage renal disease (ESRD).[6]

Nadia, who lives with lupus said:

“I developed what I thought were my first symptoms of lupus (joint pain, muscle aches and fatigue) when I was 18 years old. I initially attributed these symptoms to the stress of an unrelated spinal surgery but as I developed more symptoms I started to suspect something else was going on. I was continually dismissed as overly anxious and made to feel like I was a hypochondriac. After developing severe heart-related symptoms and being admitted to A&E three times I started to look for answers myself. I read about lupus and identified with a lot of the common symptoms. I requested blood tests from my GPs which revealed positive results, but the significance of these results were not fully understood.

Finally, last year, at the age of 24 I paid for a private consultation where I was diagnosed with lupus within half an hour and prescribed treatment. The consultant believes that I may even have had symptoms of lupus (interstitial cystitis and anaemia) when I was 15. My diagnosis means that I have had to make significant changes to the way I live my life and I will always need treatment, but I now have answers and I won’t give up the fight. I visit my doctor a lot less now that I have a diagnosis! I was visiting the doctor weekly prior to diagnosis. I would say I go once a month now perhaps? If things are worse maybe every few weeks but overall my visits have decreased.”

In ax SpA, studies have consistently shown that the delay in diagnosis results in significantly worse disease activity index, functional index, spinal mobility and/or radiographic damage [7] as well as poorer treatment response.

One axial SpA patient told us:

“It took me 8 years to get a diagnosis from the onset of my symptoms, and I don’t think I would have been diagnosed now if I had not realised that I had AS from Googling it on the internet. I then went to my GP with a tick list of AS symptoms which I had and basically dared her not to refer me.

I was diagnosed within 6 weeks of that appointment and my family were devastated but I was strangely elated, as I felt like I had an explanation for my pain that could enable others to understand. In the years prior to diagnosis, I wasted hundreds of pounds on acupuncture, chiropractors and osteopaths and was fobbed off by numerous doctors, nurses and physiotherapists. If I had been diagnosed sooner, I feel that I wouldn’t have been viewed as ‘putting it on’”.

Gout is the most common form of inflammatory arthritis worldwide, currently affecting one in 40 people in the UK. It causes sudden and extremely painful inflammatory attacks in the joints (usually developing in the night or early hours of the morning) – most commonly the big toe, ankles and knees but any other joint too. Gout is eminently treatable yet fewer than one in five gout patients are prescribed urate lowering therapy within six months of their diagnosis, and only around one in four is on this treatment a year after diagnosis. Gout is a chronic and progressive disease and is often associated with many other serious health conditions including kidney disease, diabetes, heart attack and stroke. There is also a growing body of evidence demonstrating it leads to an increased risk of death. [8]

Security guard Fred Bloggs had his first attack of gout in 2010 but it wasn’t diagnosed until two years later. Fred feels his recent life has been completely blighted by his condition. He has spent lengthy periods in hospital and, on occasions, has been confined to a wheelchair.

He reckons he has lost thousands of pounds in income due to long periods signed off work (approximately ten weeks on statutory sick pay) and it has badly affected his employment record.  “I started a new job this year and I had a bad attack soon afterwards, resulting in two weeks off work. It’s embarrassing, but what can I do? I’m afraid that I will soon become unemployable because of all my time off work.” Fred spent days trawling the internet for advice about his condition. He tried all the dietary recommendations such as cutting out high purine foods and increasing intake of fluids. “Nothing seemed to work.” He says he doesn’t drink alcohol.  He is now permanently under the care of a specialist and long-term treatment. 

Most types of EDS left untreated result in deconditioning as targeted exercise is key to keeping joints strong and preventing pain and dislocations. Undetected vascular EDS is potentially life-threatening due to aneurysms and organ ruptures. Unrecognised gut symptoms can lead to gastroporesis and the need for tube-feeding in extreme cases. Significant anxiety and depression can result from a delayed diagnosis; people with EDS have often been labelled with a mental health problem at some point in their search for a diagnosis.

Scleroderma affects just under 20,000 people in the UK based on new research published in 2018. Due to the lack of data relating to this rare condition, we cannot give an accurate time to diagnosis. For us this is one of the key challenges as without reliable data we are unable to lobby for change. Based on a survey conducted in 2017 45% of respondents said they waited 3 or more years to receive a diagnosis of scleroderma after presenting with their first symptom. [9]

Scleroderma is a rare and complex condition that presents in many ways, meaning the condition affects different people differently.

Grace, aged 57, has had symptoms of scleroderma since the age of 33, when she was diagnosed with Raynaud’s. It was another ten years before she was diagnosed with scleroderma.

“It was after quite a traumatic birth with my son that I started to notice symptoms, my skin was getting tighter, I had severe reflux and I began to struggle with everyday tasks. After continued visits to my GP, I was diagnosed with Rheumatoid Arthritis and put on various painkillers, which obviously didn’t work.

My breathing was getting worse and I was having repeat visits to A&E, thankfully on around my eight trip to A&E, I met a young doctor who noticed scarring on my lung x-rays. I was given an immediate referral to a lung specialist where I was diagnosed with scleroderma. On diagnosis, I started the maximum course of the chemotherapy, to stabilise the aggressive nature of the disease.

Due to late diagnosis the extent of my disability is huge, as my lungs, skin, heart, kidneys and oesophagus are all affected. I am on oxygen due to my severe lung disease but I still feel constantly breathless.”

 

Across a range of less common MSK conditions, delays to diagnosis result in avoidable costs to the NHS (multiple unnecessary referrals with no outcome; cost of multiple investigations with no useful outcome; inappropriate use of A&E services as no other service can meet immediate need, etc.) and costs to the economy through lost productivity.

Resources for GPs

The good news is that numerous resources are available to help GPs identify patients who may have one of these conditions and who need referral to rheumatology. These include:

GPs are critical to reducing delays to diagnosis in MSK conditions. Educational resources include:

 

Delays to diagnosis are severe, have significant impact on patients and their families and are costly to the NHS and the economy. GPs are critical to reducing delay by earlier referral to secondary care and have access to a range of resources to support clinical decision-making and ensure timely referral.

#ThinkRheum

 

References:

[1] Morgan C, Bland A, Maker C, Dunnage J, Bruce I et al., (2018) ‘Individuals living with lupus: findings from the LUPUS UK Members Survey 2014’, Lupus (27): 681-687

[2] Sykes M, Doll H, Sengupta R & Gaffney K (2015), ‘Delay to diagnosis in axial spondyloarthritis: are we improving in the UK?’, Rheumatology, July

[3] Sykes MP, Hamilton L, Jones C, et al. (2018) ‘Prevalence of axial spondyloarthritis in patients with acute anterior uveitis: a cross-sectional study utilising MRI’. RMD Open;4:e000553. doi:10.1136/ rmdopen-2017-000553

[4] British Society of Rheumatology (2016) A collaborative approach to improving outcomes in rare rheumatic and musculoskeletal diseases: report from a national workshop

[5] Oglesby A, Korves C. Laliberte F, Dennis G et al. (2014) ‘Impact of early versus late systemic lupus erythematosus diagnosis on clinical and economic outcomes’, Appl Health Econ Health Policy April 12(2): 179-190

[6] Faurschou M, Starklint H, Halberg P & Jacobsen S (2006) Journal of Rheumatology, Aug; 33(8): 1563-9

[7] Soe M, Baeek H et al., (2015) ‘Delayed diagnosis is linked to worse outcomes and unfavourable treatment responses in patients with axial spondyloarthritis’ Clinical Rheumatology, 34(8): 1397-405

[8] http://rheumnow.com/content/mortality-gout-increased

[9] RAIRDA patient survey 2017 – extrapolated scleroderma data

The HMSA has been out and about quite a bit this month, last week attending the “Optimising Patient Relevant Outcome Measures for sustainable healthcare systems and strong economies” meeting at the European Parliament.

On Wednesday 20 June, Hannah Ensor (HMSA trustee) and Lisa Renaut (HMSA volunteer) visited the European Parliament for this important meeting of the Brain Mind Pain interest group (thanks to Pain Alliance Europe for funding travel expenses.) The talks were both informative and interesting.

Cathalijne van Doorne, from Euro Ataxia, spoke about the practical importance of clinical research and interventions focusing on what would most benefit the patient – which is a big shift from what the clinical priorities might be. The example she gave was of focusing treatments on improving distance walked when the main problem for the individual is actually the ability to talk and communicate. I could really relate to this – being able to prepare food was a far higher priority for me than walking, but clinicians always seemed to focus on getting me to walk! So it was great to see this highlighted at such a high-profile event that helps inform policy.

Laure Delbecque, from Pharmerit International, expanded on this need to move from just ‘patient-centred outcomes’ to actual ‘patient-prioritised outcomes’. This was something that Christopher Bidad (Pfizer) also picked up on, and by the end of the day, he had changed his references of ‘patient-centred outcomes’ to ‘patient-prioritised outcomes’.

Research is now under way to create validated measures for the treatment outcomes that patients consider a high priority. It’s a huge piece of research but will in the long term make getting appropriate treatment much easier for hypermobile people. It’s a long way down the line still, but it’s exciting to see that the process is under way.

Another newly completed piece of research, undertaken by Pain Alliance Europe, was on the effect of pain. Many of the results won’t be a surprise, but a validated, European-wide research survey will actually really help the HMSA to decide how best to help address the issues we all face.

Some preliminary results:

  • 51% patients had to leave work
  • 44% had a drop in income
  • 66% got no help to stay in work on get back in to work

This data is very useful to have: research-based evidence, not just ‘we know it because we’ve lived it’ testimony.

Hannah Ensor commented: “Although it was hard work and used up a lot of brain power, this event was well worth the effort: raising the profile of the HMSA and hypermobility syndromes; building useful links with other organisations; and learning things that will help the HMSA improve.”

The inaugural Brain, Mind and Pain Grant announced its winners in June, naming three innovative, patient-centred projects:

  • Master Your Pain by Groningen University – an e-health platform to help patients with rheumatic pain self-manage their symptoms
  • ASPERGA Association for their prototype auditory aid that aims to reduce sensory pain in people with autism spectrum disorder
  • MyBrainNet by Dystonia Europe – a central platform for neurological brain diseases, providing information to patient groups and patients to help improve their quality of life.

The Brain, Mind and Pain Grant is the first grant into chronic pain that is run by patients, for patients. Winners were judged by a jury of patients and patient representative, with the support of scientific experts.

“Patient voices are essential to drive the research and innovation agenda. Our lived experience should be at the centre of every research project because no one knows the disease better than the person living with it,” says patient jury member Joke Jaarsma.

The grant received over 19 applications from over 8 European countries. The grant ceremony was attended by over 100 people, including:

  • MEP Danuta Jazlowiecka (EPP, Poland)
  • MEP Marian Harkin (ALDE, Ireland)
  • MEP Nessa Childers (S&D, Ireland)
  • Pain Alliance Europe President Joop van Griensven
  • EFNA Executive Director, Donna Walsh
  • Mark Fladrich, CCO Grünenthal
  • EFNA President Joke Jaarsma

The Brain, Mind, and Pain Patient Centred Innovation Grant is a joint project run by Pain Alliance Europe and financially supported by Grünenthal, with partner support from the European Pain Federation (EFIC), the European Academy of Neurology (EAN), and the European Federation of Neurological Associations (EFNA).

EMEUNET (the Emerging Eular NETwork) and the EULAR School of Rheumatology have launched an online educational initiative called Twitter Journal Club, facilitated by experienced rheumatologists. The aim is to allow Twitter users to participate in a discussion with colleagues around the world about recent key papers in rheumatology.

Each month details of the article selected for the Journal Club as well as the EMEUNET paper of the month will be available for download on our the EMEUNET websiteYou can also have a look at the previous Journal Club sessions.

Survey: Social Media for health-related purposes

You are invited to participate in a research study titled “Understanding how people with rheumatic and musculoskeletal diseases (RMDs) use social media for health-related purposes.”  This study is being undertaken by a team of international researchers and patient research partners.

Social media has been gaining increasing momentum in recent years and is used by different groups to stay up to date or exchange information. Social media tools are easily accessible and independent of geographical location. Therefore, social media also provides people with chronic conditions, such as rheumatic and musculoskeletal diseases (RMDs), with new opportunities to identify information about their condition(s) and treatment(s), as well as the ability to connect with other patients, carers, patient organisations and healthcare professionals. However, despite the premise of social media for people with RMDs, it is less clear how and why people with RMDs use social media in relation to their health and wellbeing.

You can read the project summary here [in PDF] and take part in the survey via this link.

 

Arthritis Research UK wants to hear people’s experiences of working with arthritis.

Arthritis Research UK is asking people to respond to their survey on working with arthritis.

Everyone who takes part in the survey will help the Arthritis Research UK campaigns team better understand the key problems faced by people with arthritis in the workplace, and help make a case to Government about the support people with arthritis and other musculoskeletal conditions need to thrive at work.

We would really appreciate it if any ARMA members could share the survey with their supporters and beneficiaries.

Participants do not have to be currently working – we are also very interested in the experiences of people who are no longer working, but where arthritis affected their time at work. The survey is open to people with arthritis across the UK, and the answers provided will be treated in confidence.

Arthritis Research UK wants to hear your experience of working with arthritis.

Do you live with arthritis, or another musculoskeletal condition such as back pain?

Has it affected your work life? If so, then we want to hear from you.
We are conducting a survey on arthritis and work.

Click here to open the survey.

Help us continue our campaigning for better support for people with arthritis in the workplace by taking our survey on working with arthritis today. If you have questions or would like to know more about the survey, you can email Fiona or Morgan in the Arthritis Research UK campaigns team on action@arthritisresearchuk.org.