Research and Publications

An international team of patients, clinicians and researchers (known as the COMPACT consortium) was established in 2013. Early work involved agreement of a minimum core set of outcome measures for CRPS. The development of a core measurement set makes it easier to compare data, whilst also answering specific research questions that are internationally important and relevant for the advance of CRPS treatments. The initial recommendations were published in the journal PAIN (Grieve et al, 2017).

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COMPACT-Q (funded by the Swiss National Accident Insurance Fund, SUVA): a feasibility study was undertaken to test the practicalities of collecting patient-reported data using a core set of questionnaires. We have also tested an electronic data capture system to collect and manage the COMPACT data. Seven international research centres from six different countries took part in this study. The results have informed the final version of COMPACT and the data collection process recommended for use in future CRPS studies (British Journal of Pain; Grieve et al, 2023). 

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COMPACT-C (funded by the Reflex Sympathetic Dystrophy Syndrome Association, RSDSA): an electronic Delphi study was used to define the core clinical outcome measures. This study focused on the outcomes directly measured by clinicians or researchers, not the things that patients tell us. Recommendations were published in PAIN (Llewellyn et al, 2022).

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In order to use COMPACT, it is important that researchers seek permission to use some of the questionnaire outcome measures within the core measurement set. In addition, specific standard permissions and procedures may be required when wishing to translate the questionnaire outcome measures. It it is the researcher's responsibility to ensure that all the necessary permissions are in place.

Researchers explored the management of CRPS within secondary care and community settings. Most patients in England are seen in physiotherapy, occupational therapy or hand therapy services. There are however a small number of specialist centres where staff have recognised experience and interest in CRPS. A scoping exercise was undertaken as part of this research project, which identified centres of CRPS specialist practice in England.

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The aims of the study were to:

• Understand the needs and concerns of therapists in managing CRPS

• Identify differences in CRPS therapy practices between settings

• Explore the experiences of patients and therapists

• Agree priorities for change and develop recommendations to enhance care.

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The research team conducted a national e-survey of therapists in non-specialist settings, in order to understand perceived barriers and facilitators to care.  Interviews were undertaken with therapists within community settings and therapists who have a specialist interest in the management of CRPS. Patients were asked about their experience of therapies received and any changes they had noticed as a result of receiving this care.

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This programme of work has identified opportunities to address the needs of therapists and it will help to inform future updates of the clinical guidelines. By implementing the recommendations, the research will directly inform and influence healthcare practice, with the aim of improving the management of people with CRPS across the care pathway.

A sensory training system (STS) device was designed for use at home by people with CRPS.  This proof-of-concept study aimed to determine whether people could independently use the device for 30 minutes per day, for a total of 30 days. It also explored whether the device changed pain intensity, sensitivity and feelings towards the affected limb. 

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Participants were asked to use the device at home, complete online questionnaires and a daily diary. They also took part in semi-structured telephone interviews in order to provide feedback on their experience of using the device. Data captured by the device itself gave information on how often it was used and the length of each user session.

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The paper regarding the study findings is currently in preparation. Researchers identified some positive aspects regarding engagement with the device, but challenges and limitations were also observed. 

Other topics for research supported by the CRPS Network have included:

• Investigating the brain networks underlying altered body perceptions and related pain - University of the West of England

• PRISMA: Pain Reduction by Inducing Sensory-Motor Adaptation - University of Bath

• Why people with CRPS perceive their affected limb differently - University of Bath

• Bodily changes and sensory sensitivity in CRPS and fibromyalgia - University of Bath 

• CoRe: Cortical Reorganisation - Cambridge University Hospitals NHS Foundation Trust/ University of Cambridge

• Genetic pain - Cambridge University Hospitals NHS Foundation Trust/ University of Cambridge

• MIRAGE: using visual illusions to provide pain relief for people with CRPS - University of the West of England

• LIPS: exploring the effectiveness of low dose intravenous Immunoglobulin therapy in reducing pain - The Walton Centre NHS Foundation Trust

• CRPS International Recovery Study - Royal United Hospitals Bath NHS Foundation Trust