SRUK Funds New Research to Improve Quality of Life

Living with Scleroderma or Raynaud’s can have a significant impact upon quality of life; this is something that SRUK are well aware of. Ongoing research towards developing new treatments and therapies has a cumulative effect in improving quality of life, but can the problem be addressed directly?

Improving Quality of Life

Last year, SRUK launched a grant call titled “Improving Quality of Life in Raynaud’s and Systemic Sclerosis”. In this call, applicants were encouraged to submit applications for research proposals which could drive improvements quality of life. 

Two applications were selected for funding following our funding processes. This involves peer review, a process where grant applications are scrutinised by experts in the field, followed by review by our Research Committee which comprises clinician and research experts and two people with lived experience of scleroderma. 

In January these projects commenced: read on to learn more about this exciting research and why it could be relevant for you! 

Project 1:  Scleroderma in the Mouth: Improving Pathways to Care

Scleroderma can cause many oral complications including:

• a reduction in size of the mouth
• dryness
• thinning of the lips
• problems with the salivary glands
• ulcers
  
• and more

These issues are well known to patients and clinicians, and significantly contribute to reduced quality of life. Despite this, this area is under-researched and undertreated. 

It has been proposed that this could be due to there being gaps in knowledge, awareness, and a lack of coordination between rheumatologists and dentists.

To combat this, Professor Liz Walker (University of Hull) will carry out research to develop a care pathway to improve oral and dental outcomes for people living with scleroderma. This care pathway will inform the development of clinical guidelines which will increase the awareness of scleroderma among primary care dentists and, where necessary, promote referral from rheumatology clinics to specialist dentistry.  

Carrying out this work Professor Walker will work closely with rheumatologists, dentists and those living with scleroderma to better understand the views of dental problems in those with the condition. 

Project 2: Self-Assessment of Skin Thickness in Systemic Sclerosis – Improving Quality of Life and Value of Telemedicine for Scleroderma by Empowering Patients

Life changed for us all during the pandemic, but even more so for those living with chronic conditions like scleroderma where there was a shift to remote appointments. However many in-person tests, like the modified Rodnan skin score which is used to gauge whether a patient’s skin fibrosis is progressing in scleroderma, could not be undertaken by remote appointments. 

This meant that patients might encounter delays or not accessing the best treatment. To counteract this Professor Chris Denton and his team based at the Royal Free Hospital London, in partnership with patients, developed PASTUL: Patient Self-Assessment of Skin Thickness in Upper Limb. This allowed patients to ‘grade’ their own skin.

In their SRUK-funded research project, Professor Chris Denton and his extended team will refine the questionnaire. The improvements will include capturing how skin involvement affects quality of life. These changes will make PASTUL a more beneficial tool for routine clinical practice and improve its scope to be used as a clinical trial outcome measure, which informs clinicians and regulators like the MHRA and FDA how well a treatment is working.  

We look forward to keeping you abreast of the latest developments in these projects as work progresses.

To keep up-to-date with the latest research news, please visit sruk.co.uk/research