Are you better? A multi-centre study of patient-defined recovery from Complex Regional Pain Syndrome

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DOI

    A Llewellyn, Royal United Hospitals, Bath, UK, United KingdomCS McCabe, Royal United Hospitals, Bath, UK, University of the West of England, Bristol, UK, United KingdomY Hibberd, Royal United Hospitals, Bath, UK, United KingdomP White, University of the West of England, Bristol, UK, United KingdomL Davies, Royal United Hospitals, Bath, UK, United KingdomJ Marinus, Leiden University Medical Centre, Leiden, The Netherlands, NetherlandsRGSM Perez, VU University Medical Centre, Amsterdam, The Netherlands., I Thomassen, Dutch National CRPS Patient Organization, Nijmegen, The Netherlands, F Brunner, Balgrist University Hospital, Zurich, Switzerland, C Sontheim, Balgrist University Hospital, Zurich, Switzerland, F Birklein, University Medical Centre Mainz, Mainz, Germany, T Schlereth, University Medical Centre Mainz, Mainz, Germany, DKD HELIOS Klinik, Wiesbaden, Germany, A Goebel, Walton Centre NHS Foundation Trust and Pain Research Institute, University of Liverpool, Liverpool, UK, R Haigh, Royal Devon & Exeter Hospital, Exeter, UK, R Connett, Royal Devon & Exeter Hospital, Exeter, UK, C Maihöfner, Department of Neurology, General Hospital Fürth, Fürth, Germany,
  • Lone Knudsen
  • RN Harden, Rehabilitation Institute of Chicago, Chicago, IL, USA, A Zyluk, Pomeranian Medical University, Szczecin, Poland, D Schulman, Markham-Stouffville Hospital, Markham, ON, Canada, H Small, PARC (Promoting Awareness of RSD and CRPS in Canada), St. Catharines, Canada, F Gobeil, CSSS Pierre Boucher, Longueuil, QC, Canada, P Moskovitz, The George Washington University Hospital, Washington, DC, USA
Background: Complex Regional Pain Syndrome (CRPS) symptoms can
significantly differ between patients, fluctuate over time, disappear or
persist. This leads to problems in defining recovery and in evaluating the
efficacy of therapeutic interventions.
Objectives: To define recovery from the patients’ perspective and better
understand their priorities for treatment approaches.
Methods: Establishing an international consortium, we used a 2-Round
Delphi-based study in eight countries across Europe and North America.
Participants ≥18 years who met, or had met, Budapest clinical criteria
were included. Round 1 participants completed the statement: ‘I would/
do consider myself recovered from CRPS if/because. . .’ alongside
demographic and health questionnaires. Data were thematically
organised and represented as 62 statements, from which participants
identified and ranked their recovery priorities in Round 2.
Results: Round 1 (N = 347, 80% female, 91% non-recovered)
dominant ICF themes were: activities of daily living; bodily functions;
external factors; participation and personal factors. The top five priority
statements in Round 2 (N = 252) were: no longer having (1) CRPSrelated
pain, (2) generalised pain and discomfort, (3) restricted range of
movement, (4) need for medication, (5) stiffness in the affected limb.
With very few exceptions, priorities were consistent, irrespective of
patient demographics/geography. Symptoms affecting daily activities
were among those most frequently reported.
Original languageEnglish
JournalEuropean Journal of Pain
Volume22
Pages (from-to)551-564
ISSN1090-3801
DOIs
Publication statusPublished - 2018

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