Arthritis and Musculoskeletal Alliance
This is a category taken from the full feed of Musculoskeletal and Arthritis news provided by ARMA's members.
  • The Arthritis and Musculoskeletal Alliance (ARMA) is the umbrella body for the arthritis and musculoskeletal community in the UK, and our mission is to transform the quality of life of people with musculoskeletal conditions. We have 40 member organisations ranging from specialised support groups for rare diseases to major research charities and national professional bodies.

Research

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.

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

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.

The State of Musculoskeletal Health 2018 is a resource for health professionals, policy makers, public health leads and anyone interested in musculoskeletal health. We believe that with the best information you can build awareness, make more informed decisions, feel more confident and ultimately help more people with musculoskeletal conditions. The resource was put together by Arthritis Research UK.

Using the best available data on prevalence, risk factors and comorbidities, the report lays out the key factors affecting musculoskeletal health, the economic benefits of musculoskeletal research, and describes the scale and impact of the problem.

You can read more details on the report from the arthritisresearchuk.org website and download the full set of statistics (PDF 2.9 MB).

The Faculty of Sport and Exercise Medicine has updated its position statement Physical Activity in Adolescence. The statement is a useful reference document for both the Sport and Exercise Medicine community and all health professionals, with evidence-informed recommendations for health-related physical activity.

The statement highlights recent objective studies, which have collected data using accelerometry, indicate that less than 25% of adolescents accumulate an average of 60 min per day of moderate physical activity. The guidelines include information on muscle strength, skeletal health, obesity, mental health and wellbeing with recommendations for the type and length of regular physical activity in this population. Read Physical Activity in Adolescence here.

Guest blog by David Albury, Board Director Innovation Unit

Why have so many innovations in the NHS failed to make the impact they might because they remain in isolated pockets and never spread? Here at the Innovation Unit we decided to look at this question from a more positive angle and ask where innovation has spread and what made that possible?

There is broad agreement that the pressures and challenges currently facing the NHS can only be addressed through developing and scaling innovations that significantly improve outcomes whilst significantly reducing costs. This is as true in musculoskeletal services as in other sectors.

But proven innovations and best practice tend to spread slowly in the NHS. Innovations such as first contact physiotherapist or ESCAPE-pain remained as isolated pockets of good practice long after they had been shown to be effective. ESCAPE-Pain is now rolling out in many areas, thanks to a grant from Sport England, but the first evidence that it worked was as long ago as 2007.

The barriers to spreading innovation have gained a lot of attention. The Innovation Unit, in collaboration with the Health Foundation, wanted to look at the enablers – what will help the spread of good practice. We looked at ten examples of successful spread of innovation in the NHS. Our report identifies common factors that enabled their spread. Whilst none of the case studies were in MSK, the key enablers we identified will apply equally well to MSK innovation.

Our eight key enablers

In pursuit of spread:
1. Building demand through existing networks and narratives
2. Using evidence to build demand
3. Balancing fidelity, quality and adaptability
4. Scaling vehicles rather than lone champions

Creating the conditions for spread:
5. Capitalising on national and local system priorities
6. Using policy and financial levers to kick start momentum
7. Commissioning for sustainable spread
8. External funding to support spread

Read Against the Odds for more on the eight key enablers and some provocations for system leaders, funders and innovators. We hope you will find it useful as you face the challenges of how to spread innovation and good practice in MSK across the NHS.

EULAR has funded a project aimed at understanding the development, evaluation and implementation of mobile phone applications for self-management in patients with rheumatic diseases.

Following a systematic literature teview, the project task force is now at a stage where it would like to gain insights into the patient’s views, perceptions and current use of health apps for self-management.

EULAR therefore kindly asks you to fill in the following survey:
surveymonkey.com/mHealthAppsSurvey
It takes 5 to 10 minutes to complete.

Pain Alliance Europe are asking for responses to the 2018 edition of the Survey on Chronic Pain, which highlights how pain can affect the work-life of pain patients.

The charities who are members of Pain Alliance Europe (PAE) are inviting people with chronic pain or their carers to fill in this short survey on the effect of their chronic pain on their quality of life, their work situation and about any financial help they receive. The survey starts with some basic questions.

This is the second survey that PAE has created on the theme of chronic pain, in a series of annual surveys on the impact of pain. With each survey, PAE will analyse a different aspect of the impact of pain on the quality of life of the chronic pain patients in Europe.

A report will be created at the end of this survey, comparing the pain patients’ experiences in different countries. This report will be publicised by Pain Alliance Europe in order to reinforce their actions and promotions in order to make politicians and policy makers more aware of the important issue of chronic pain.

You can also follow @pain_europe on Twitter and share the poster [PDF].

 

The University of Salford and the James Lind Alliance are leading a Priority Setting Partnership (PSP) which will ensure the perspectives of patients, carers and health care practitioners inform future research priorities for charities and funding agencies (such as NIHR). This PSP is an important step forward in understanding the current foot health research priorities across the UK, bringing patients, their carers and clinicians together to identify and prioritise unanswered questions about the effects of treatments (‘treatment uncertainties’) in specific conditions or areas of healthcare need.

The Steering Group is hoping ARMA members will participate in this unique exercise.

A PSP allows clinicians and patients to decide what research should be done, rather than researchers. The James Lind Alliance provides a specific methodology to achieve this and has become a trusted partner to many major charities across the UK. The top ten research priorities will inform all future research spending by the William M. Scholl Endowment Trust (who is also funding the PSP) and it

is expected that other agencies will also adhere to the outcomes (such as NIHR).

This is therefore an opportunity to help guide how millions of pounds will be spend on research over the next decade. As part of the James Lind Alliance methodology a small (12-15) but influential Steering Group is used and its role is to support the leadership of the PSP. Steering group members with direct relevant experience as patients, carers or health care professionals will be invited to participate in the priority setting exercise.

Where does the ARMA membership come in? Taking part in the PSP, by completing the survey when it has been developed later this year, will be a unique opportunity to help shape and address the focus of future foot health research questions that really matter. This is a chance to ensure that foot health research has direct relevance to those that matter; and that there is a clear, transparent pathway to a lasting impact on the future of foot health management.

On the James Lind Alliance website you can read about the JLA and PSPs past and present to help you understand the process and outcomes of the priority setting agenda in more detail.

The Foot Health PSP web site is here: www.foothealthpsp.org.

The recently published results of a LUPUS UK survey have revealed that lupus patients in the UK experience an average delay of 6.4 years between developing initial symptoms and reaching a diagnosis. In addition, the survey showed no change in this delay to diagnosis over recent decades despite efforts to improve identification and diagnosis of the disease.

The results of this survey, which was a collaboration between Manchester researchers and LUPUS UK, demonstrate that further work is needed to raise awareness of lupus amongst both healthcare professionals and patients in the UK to recognise the early symptoms and signs of the disease.

Almost three-quarters of individuals with lupus experience symptoms that limit their ability to carry out their daily activities, so a delay in diagnosis and treatment are having a significant impact on patients’ long-term physical, emotional, and financial wellbeing. These findings suggest a clear agenda for further patient focused research to increase awareness of lupus, identify better and more effective therapies and improve support for patients and overall quality of life.

Studies have shown that lupus affects approximately 25-96 per 100,000 people in the UK, but it is not known how many more cases of lupus are currently undiagnosed due to poor awareness and a lack of specialist referrals.

A summary of the key findings from the survey can be found on the LUPUS UK website.