Standards for the diagnosis and management of complex regional pain syndrome: Results of a European Pain Federation task force.

BACKGROUND: Complex regional pain syndrome is a painful and disabling post-traumatic primary pain disorder. Acute and chronic complex regional pain syndrome (CRPS) are major clinical challenges. In Europe, progress is hampered by significant heterogeneity in clinical practice. We sought to establish standards for the diagnosis and management of CRPS. METHODS: The European Pain Federation established a pan-European task force of experts in CRPS who followed a four-stage consensus challenge process to produce mandatory quality standards worded as grammatically imperative (must-do) statements. RESULTS: We developed 17 standards in 8 areas of care. There are 2 standards in diagnosis, 1 in multidisciplinary care, 1 in assessment, 3 for care pathways, 1 in information and education, 4 in pain management, 3 in physical rehabilitation and 2 on distress management. The standards are presented and summarized, and their generation and consequences were discussed. Also presented are domains of practice for which no agreement on a standard could be reached. Areas of research needed to improve the validity and uptake of these standards are discussed. CONCLUSION: The European Pain Federation task force present 17 standards of the diagnosis and management of CRPS for use in Europe. These are considered achievable for most countries and aspirational for a minority of countries depending on their healthcare resource and structures. SIGNIFICANCE: This position statement summarizes expert opinion on acceptable standards for CRPS care in Europe.

Quality indicators to assess quality of pain clinic care from the perspective of patients with chronic pain: development, usability, comprehensibility, and psychometric quality of the QiPPP questionnaire.

To address the lack of appropriate patient-defined quality indicators (QIs) for assessment of pain clinic care in the Netherlands, we developed the "Quality Indicators Pain Patients' Perspective" (QiPPP) questionnaire. Quality indicators are widely used to measure the quality of the structure, process, and outcome of health care. The Pain Patient United Consortium, together with the University Pain Centre of Maastricht, developed QIs for assessment of care. The aim of this study was to develop QIs from the perspective of patients with chronic pain for assessment of the care provided by a pain clinic, and to validate them on usability, comprehensibility, and psychometric quality in daily pain practice. Quality as defined by patients with chronic pain (in survey and focus groups) was prioritized by consensus and transformed into QI. A first set was tested and fine-tuned, resulting in the QiPPP questionnaire. Five participating pain clinics distributed 200 questionnaires among consecutive patients with chronic pain under treatment. To examine the dimensionality of the QIs, patient responses were analyzed on the basis of reporting frequencies and findings of principal component analysis. For construct validation, the influence of patient characteristics was observed in 3 components. A total of 547 (54.7%) populated QiPPP questionnaires (response rate, 58.9%) were analyzed. The mean score for patient comprehensibility was 8.6 ± 1.4. The final QiPPP questionnaire included 21 QIs (18 process; 3 outcome) distributed over 7 domains. The QiPPP questionnaire was of sufficient psychometric quality and found to be useful and understandable by patients with chronic pain.

Recommendations for a first Core Outcome Measurement set for complex regional PAin syndrome Clinical sTudies (COMPACT).

Complex regional pain syndrome (CRPS) is a persistent pain condition that remains incompletely understood and challenging to treat. Historically, a wide range of different outcome measures have been used to capture the multidimensional nature of CRPS. This has been a significant limiting factor in the advancement of our understanding of the mechanisms and management of CRPS. In 2013, an international consortium of patients, clinicians, researchers, and industry representatives was established, to develop and agree on a minimum core set of standardised outcome measures for use in future CRPS clinical research, including but not limited to clinical trials within adult populations. The development of a core measurement set was informed through workshops and supplementary work, using an iterative consensus process. "What is the clinical presentation and course of CRPS, and what factors influence it?" was agreed as the most pertinent research question that our standardised set of patient-reported outcome measures should be selected to answer. The domains encompassing the key concepts necessary to answer the research question were agreed as follows: pain, disease severity, participation and physical function, emotional and psychological function, self-efficacy, catastrophizing, and patient's global impression of change. The final core measurement set included the optimum generic or condition-specific patient-reported questionnaire outcome measures, which captured the essence of each domain, and 1 clinician-reported outcome measure to capture the degree of severity of CRPS. The next step is to test the feasibility and acceptability of collecting outcome measure data using the core measurement set in the CRPS population internationally.