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Research

Exploring the perspectives of young patients with chronic, inflammatory arthritis on patient-reported outcome measures

Having completed Phase 1 of the YoungPro project (focus groups in four different European countries with young people with inflammatory arthritis and the first Task Force meeting), EULAR has developed a survey to be spread across Europe to gather additional information around this topic.

The European League Against Rheumatism Task Force aims to incorporate the perspective of young people with inflammatory arthritis in patient reported outcomes (PROs). To reach this goal, we intended to identify common themes that are important to young people with inflammatory arthritis and to explore if they are covered by the most commonly used PROs. Questionnaires and rating scales are referred to as patient‐reported outcome measures and are completed by patients to reflect their individual perspective. They have become an integral part in assessing disease activity and the impact of disease on individuals and by that influencing treatment decisions, ideally taken together between the patient and the physician.

The study team consists of international rheumatology researchers, health professionals and patient research partners. Currently used patient-reported outcome measures (such as those looking at pain, fatigue and physical functioning) may not capture everything that matters to young people with arthritis.

For this reason, the survey is designed for young people (aged 18 to 35 years) with inflammatory arthritis (including juvenile idiopathic arthritis, rheumatoid arthritis, psoriatic arthritis, spondyloarthritis, ankylosing spondylitis and Still’s disease). Those having been diagnosed with one of these conditions are welcome to take part in the survey. Those above the age of 35 are also welcome to take part in this survey. This information will then be compared to the younger age group.

This survey consists of two parts:

  1. A section asking general questions about you and your health;
  2. A second part, asking about personal experiences with patient‐reported outcome measures.

In order to maximise the reach and overcome the language barrier, the survey was translated in 7 languages (English, German, French, Spanish, Portuguese, Italian and Russian).

It takes about 15 minutes to complete the survey and EULAR is sincerely thankful for your support in spreading the survey to reach as many people as possible!

Find the questionnaire here: www.soscisurvey.de/youngpro/

On 8 May, Versus Arthritis published a new policy report looking at the impact of home aids and adaptations for people with arthritis, and the barriers that people face when trying to access them. Read the full report here, which includes powerful stories from people with arthritis who benefit from aids and adaptations.

We found that aids and adaptations – from perching stools and grabbing tools, to grab rails and stair lifts – can help people with arthritis, and related conditions such as back pain, achieve a better quality of life and maintain their independence in the home.

60% of all people with arthritis, across all genders, ages, and severity of condition, used an aid or adaptation. Of those, 95% felt that these products had a positive impact on their lives. However, too few people are aware of the support available to them. 

The report makes recommendations to both local and central government that would help widen access to these vital services.

Action is needed to tackle £646 million burden of bone, joint and muscle problems, a new ARMA report says.

construction-work-related-pieIndustry leaders called for action to tackle the huge burden of bone, joint and muscle conditions on people in the construction industry, in a report released today (30/05/2019). Physically demanding work means the construction industry has one of the highest rates of musculoskeletal disorders costing £646 million every year – accounting for over three-quarters of all occupational ill-health costs.

The report from the Arthritis and Musculoskeletal Alliance (ARMA) followed a roundtable meeting of industry leaders. The key issues identified were:

  • Prevention – requires proactivity and understanding people’s motivations to change behaviour.
  • Early support helps bone, joint or muscle disorders, but people first need to feel comfortable talking openly about them, not as a sign of weakness and without fearing job loss.
  • SMEs – In construction, small companies employ many workers, including transient workers. Solutions could include building control officers, who go on every site, flagging issues with smaller companies, or larger employers influencing supply chains to prioritise this.

report document coverAdrian Shah-Cundy from VolkerWessells UK, a speaker at the roundtable said,

VolkerWessels UK are proud to be lead sponsor on this initiative. We recognise the need to refocus efforts on the continued issue of MSDs in construction, as part of our responsibility to maintain a workplace free from injury and ill-health. This is a challenging subject due to the physical nature of our activities but, as the figures demonstrate, as an industry we still have a way to go to practically improve working practices and preventive measures. We welcome the opportunity to work with, and learn from, a diverse range of stakeholders for the betterment of health and wellbeing.

Industry leaders concluded that all employers needed:

  • a musculoskeletal disorders action plan, developing awareness of bone, joint and muscle problems beyond just manual handling;
  • awareness of MSDs and to encourage open conversations and support when employees are struggling;
  • routine monitoring of employee musculoskeletal health and wellbeing.

The full report, Musculoskeletal Conditions in the Construction Industry, is available here from 30 May 2019.

VolkerWessels banner

io logoIn March, the Institute of Osteopathy posted two case studies on the MSK Hub. These two impact reports constitute research relevant to osteopathic practice and would be of interest to osteopaths and other allied healthcare professionals and potential patients.

Effectiveness of osteopathy in an occupational health setting
This impact report demonstrates that integrating osteopathic care into an occupational health setting effectively reduced the number of work days lost to sickness absence and strongly indicate that osteopathy is a cost effective approach in this setting.

Osteopaths in secondary care spinal unit: impact report
To determine whether inclusion of osteopathic practice in a multimodal NHS service within a secondary care spinal unit (Queen’s Medical Centre, Nottingham (QMC)) is safe, effective and what the patient experience of such interventions is.

Evidence into Practice – Finding the next big idea

Do you have an evidence-based idea to change clinical practice? Apply to the Evidence into Practice Challenge, a call to healthcare professionals and researchers in the West of England.

Evidence-based ideas are sought for initiatives or projects to improve healthcare. The West of England AHSN will work closely with chosen applicants and recompense time for activity that supports the adoption and spread of the initiative.

Karen Luyt, a neonatologist at University Hospitals Bristol NHS Foundation Trust, responded to the first call five years ago. Her idea became the PReCePT programme, currently being implemented nationally. Watch the video to find out what Karen has to say about working with the West of England AHSN.

Read more for full details including application pack and guidance documents.

We all know that MSK is one of the two biggest causes of sickness absence in the UK. It’s perhaps no surprise that this is even more true in the construction sector. Every year, occupational ill‐health costs construction employers £848million in reduced productivity, sick pay, cover for absence and replacing staff who leave because of ill health. 76% of this relates to MSK conditions. In February, ARMA brought together some key players in the construction sector with stakeholders such as Department for Work and Pensions and Health and Safety Executive, to look at what might be done to improve this situation.

The group discussed a range of issues. Due to the nature of the work people fear speaking out about an MSK problem. This can lead to presenteeism, with loss of productivity, ending when there is a more serious injury, which might have been prevented if treatment had been provided earlier. There is a challenge of getting a message across to a workforce who are mostly on site, and how to make sure the key messages are communicated clearly without bombarding people with information that they can’t take in. It is a complex sector, with major contracting companies, who may not directly employ staff, and large numbers of very small companies who may have little or no occupational health infrastructure.

There will be a report following the meeting – look out for it on the ARMA website soon. Participants will also be taking forward some of the recommendations from the day. We would like to thank Volker Wessels UK, BAM Nuttall, Mace Group and Multiplex Europe for supporting the event.

Pain Alliance Europe launched a new survey on stigma and chronic pain. One of the main “fights” PAE is leading is for the pain patient to be heard, believed and understood. The most recent survey developed deals with stigma related to chronic pain and will be open until the 1st of March, 2019.

Besides the many physical challenges that chronic pain inflicts, patients deal with the psychological burden of having a condition they do not deliberately choose to have.

To understand better to which extent stigma is a part of the illness pack in the life of a chronic pain patient, Pain Alliance Europe has directed its questions for 2019’s survey about chronic pain to the way patients perceive and are affected by the subjectivity of other categories from society that they come in contact with during their pain journey.

In this respect, PAE hope the results of the new survey on stigma related to chronic pain will raise awareness of the way the environment of the patient may contribute to the alteration of the psychological conditions that influence the life of a patient.

Take the survey here. Previous surveys and results are available on the website.

FOREUM – Foundation for Research in Rheumatology – announces a programme to support innovative concepts to improve the diagnosis and treatment of Rheumatic Musculoskeletal Diseases (RMDs). This programme is designed as an open research call seeking for the best and most visionary approaches to better understand RMDs and to improve the life of patients with RMDs.

As such, the call is not limited to a specific disease within the RMD spectrum but rather intends to target fundamentally new concepts that have potential to gain concept-changing insights into RMDs.

Letters of intent can be submitted until 5 March 2019. If you are interested to apply for a grant, please find all information on the open call page on the FOREUM website.