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Standards for the diagnosis and management of Complex Regional Pain Syndrome: results of a European Pain Federation task force

Authors:

Abstract

Background Complex Regional Pain Syndrome is a painful and disabling post‐traumatic primary pain disorder. Acute and chronic 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 CPRS. 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 multi‐disciplinary care, 1 on assessment, 3 for care pathways, 1 on information and education, 4 in pain management, 3 in physical rehabilitation, and 2 on distress management. The standards are presented, summarised, and their generation and consequences 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 CPRS 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. This article is protected by copyright. All rights reserved.
Eur J Pain. 2019;23:641–651. wileyonlinelibrary.com/journal/ejp
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641
Received: 7 September 2018
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Revised: 3 January 2019
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Accepted: 4 January 2019
DOI: 10.1002/ejp.1362
POSITION PAPER
Standards for the diagnosis and management of complex regional
pain syndrome: Results of a European Pain Federation task force
AndreasGoebel1,2*
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ChrisBarker1,2*
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FrankBirklein3
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FlorianBrunner4
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RobertoCasale5
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ChrisEccleston6,7,8
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E.Eisenberg9
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Candy S.McCabe10
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G. LorimerMoseley11
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R.Perez12
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SergePerrot13
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AstridTerkelsen14
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IlonaThomassen15
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AndrzeyZyluk16
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ChrisWells8
1Walton Centre NHS Foundation Trust, Liverpool, UK
2Pain Research Institute,University of Liverpool, Liverpool, UK
3Department of Neurology,University of Mainz, Mainz, Germany
4Physical Medicine and Rheumatology,Balgrist University Hospital, Zurich, Switzerland
5Pain Rehabilitation Unit,Habilita Hospitals, Zingonia di Ciserano, Italy
6Centre for Pain Research,The University of Bath, Bath, Uk
7Department of Clinical and Health Psychology,Ghent University, Ghent, Belgium
8European Pain Federation, Brussels, Belgium
9Rambam Health Care Campus,Institute of Pain Medicine, Haifa, Israel
10Florence Nightingale Foundation Clinical Professor of Nursing,University of West of England, Bristol & Royal United Hospitals NHS Foundation Trust,
Bath, UK
11Sansom Institute, University of South Australia, Adelade, Australia
12Department of Anaesthesiology,VU University Medical Center, Amsterdam, Netherlands
13Pain Center,Cochin Hospital, Paris Descartes University, Paris, France
14Danish Pain Research Center and Department of Neurology,Aarhus University Hospital, Aarhus, Denmark
15Patiëntenvereniging CRPS, Nijmegen, The Netherlands
16Department of General and Hand Surgery,Pomeranian Medical University, Szczecin, Poland
*These authors contributed equally to this work.
This article is dedicated with profound gratitude to the memory of Prof. Roberto Perez (01.08.1968–07.09.2017) who contributed to these standards.
The copyright line for this article was changed on March 18, 2019 after original online publication.
Correspondence
Andreas Goebel, Pain Research Institute,
Clinical Sciences Centre, Liverpool, UK.
Email: andreasgoebel@rocketmail.com
Funding information
European Pain Federation.
Abstract
Background: Complex regional pain syndrome is a painful and disabling post‐trau-
matic 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
This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original
work is properly cited.
© 2019 The Authors. European Journal of Pain published by John Wiley & Sons Ltd on behalf of European Pain Federation ‐ EFIC ®
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1
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INTRODUCTION
Complex regional pain syndrome (CRPS) is a painful and
disabling post‐traumatic primary pain disorder affecting, usu-
ally, distal limbs (Birklein, Ajit, Goebel, Perez, & Sommer,
2018; Marinus et al., 2011). Signs and symptoms are nor-
mally restricted to the affected limb but can spread (van
Rijn et al., 2011). The incidence of CRPS may vary between
populations (Sandroni, Benrud‐Larson, McClelland, & Low,
2003). In a population‐based European study, the incidence
was 20–26/100,000 in the Netherlands (de Mos et al., 2007).
The clinical presentations of CRPS vary enormously be-
tween patients (Figure 1). For example, the affected limb
may appear hot and red, or cold and blue; these symptoms
and signs can also fluctuate in any single patient over time.
Patients often also report disordered spatial awareness, and
bodily and limb agency distortions (Lewis, Kersten, McCabe,
McPherson, & Blake, 2007).
The aetiology of CRPS is likely multifactorial (Birklein et
al., 2018). It is thought to be pathological not psychopatho-
logical in origin (Beerthuizen et al., 2012; Beerthuizen, van 't
Spijker, Huygen, Klein, & de Wit, 2009). Most patients will
improve over time (de Mos et al., 2009; Zyluk, 1998), al-
though appropriate management very likely hastens recovery
(Gillespie, Cowell, Cheung, & Brown, 2016). However, full
recovery is less common, and many patients will be left with
varying degrees of persistent pain and functional impairment
(Bean, Johnson, Heiss‐Dunlop, & Kydd, 2016). For some
people, CRPS may become a long‐lasting, highly disabling
and distressing chronic pain condition. The costs of CRPS are
significant, at a personal, familial and societal level (Kemler
& Furnee, 2002; van Velzen et al., 2014).
In 2016, the European Pain Federation convened a CRPS
Task Force to support the development of best care for these
patients through Europe. The Task Force members were CRPS
experts with geographical and professional representation
within Europe and a patient representative. As its first objective,
the Task Force was asked to develop standards that could guide
minimally acceptable levels of CRPS care applicable across a
diversity of healthcare structures and economies within Europe.
Some European countries have developed their own guide-
lines for CRPS care (Birklein, Humm et al., 2018; Ceruso et
al.., 2014; Goebel et al., 2018; Perez et al., 2014); however,
any adoption within additional countries is often impeded by
differences in healthcare economics and structures. The ap-
plication of standards can go some way to establish a primary
common position.
We recognize that terms such as “standards,” “guidelines,”
“policy” and “procedure” are often used interchangeably, and
currently, there is no internationally agreed definition for the
term “standards” as applied to health care. For our purposes,
we considered the UK Faculty of Pain Medicine interpretation
of standards, as applied to pain: “Standards must be followed.
Standards aim to represent current best practice in pain man-
agement as published in relevant literature and/or agreed by
a body of experts” (Grady & al., 2015, p. 8). Notably, stan-
dards can change over time (Figure 2). Standards can act as
a benchmark, but can also be utilized as a tool for healthcare
professionals, commissioners and policymakers in the identi-
fication and appropriate allocation of resources.
2
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METHODS
Our development process followed that outlined by the
UK National Institute of Clinical Excellence (NICE, see
Supporting Information Appendix S1). A patient‐member
(IT) provided service user perspectives. The CRPS standards
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 diag-
nosis, 1 in multidisciplinary care, 1 in assessment, 3 for care pathways, 1 in informa-
tion and education, 4 in pain management, 3 in physical rehabilitation and 2 on
distress management. The standards are presented and summarized, and their genera-
tion 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 achiev-
able 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.
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were derived through discussion and a process of consoli-
dation and challenge which had four stages: First, we took
account of the evidence from recently published systematic
reviews (Duong, Bravo, Todd, & Finlayson, 2018; O'Connell,
Wand, McAuley, Marston, & Moseley, 2013). Second, a draft
document outlining the domains of practice and the likely
areas of difference was produced and discussed in e‐mail and
telephone discussions from November 2016 to May 2017.
Third, we convened a one‐day face‐to‐face meeting in June
2017. The focus of the meeting was to seek agreement among
the members of the Task Force on the areas of practice. A
“challenge” process was developed in which we drafted the
standards as grammatically imperative (must‐do) statements.
This presentation of each standard of care as mandatory was
useful because it forced members to think about exceptional
cases or alternatives. Finally, a draft document of standards
was then drafted. Each member of the group had one more
opportunity to veto any highly contentious area and suggest
further changes. No veto was enacted.
The resulting standards were considered achievable
for most countries and aspirational for a minority of coun-
tries depending on their healthcare resource and structures
(Eccleston, Wells, & Morlion, 2018).
3
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RESULTS
We developed 17 standards, highlighted in italics, in 8 areas
of care. There are 2 standards in diagnosis, 1 in multidiscipli-
narity, 1 in assessment, 3 in care pathways, 1 in information
and education, 4 in pain management, 3 in physical rehabili-
tation and 2 in distress management.
FIGURE 1 Budapest Diagnostic Criteria for CRPS. Notes: (1) If the patient has a lower number of signs or symptoms, or no signs, but
signs and/or symptoms cannot be explained by another diagnosis, “CRPS‐NOS” (not otherwise specified) can be diagnosed. This includes
patients who had documented CRPS signs/symptoms in the past. (2) If A, B, C and D above are all ticked, please diagnose CRPS. If in doubt, or
for confirmation, please refer to your local specialist. (3) Psychological findings, such as anxiety, depression or psychosis, do not preclude the
diagnosis of CRPS (3) Distinction between CRPS type 1 (no nerve injury) and CRPS type 2 (major nerve injury) is possible, but has little relevance
for treatment. Explanation of terms: “Hyperalgesia” is when a normally painful sensation (e.g., from a pinprick) is more painful than normal;
“allodynia” is when a normally not painful sensation (e.g., from touching the skin) is now painful; and “hyperaesthesia” is when the skin is more
sensitive to a sensation than normal. A special feature in CRPS: In category 4, the decreased range of motion/weakness is not always due to pain. It
is also not necessarily due to nerve damage or a joint or skin problem. Some patients’ experience of an inability to move their limb may be due to
yet poorly understood, disturbed motor coordination which can be reversible. A helpful question to assess this feature is: “If I had a magic wand to
take your pain away, could you then move your… (e.g., fingers)?” Many patients will answer with “no” to that question. Unusual CRPS: Around
5% of patients cannot recall a specific trauma or may report that their CRPS developed with an everyday activity such as walking or typewriting.
In very few people, CRPS can have a bilateral onset. In some patients, CRPS can spread to involve other limbs. Around 15% of CRPS cases do not
improve after 2 years. It is appropriate to make the diagnosis of CRPS in these unusual cases
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3.1
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The diagnosis of complex regional
pain syndrome
Complex regional pain syndrome is diagnosed according to
the “New IASP Criteria” (sensitivity: 0.99; specificity: 0.68
for the “clinical” criteria) (Harden & Bruehl, 2005; Harden
et al., 2010) which are sometimes also referred to as the
“Budapest criteria” (Figure 1).
The use of these criteria requires some degree of prior
belief that the condition is likely to be CRPS, that is, the pa-
tient has a regional affection distally in extremities, not cor-
responding to a nerve innervation territory. As an exception,
the rare subtype of CRPS II after nerve injury can sometimes
correspond to the injured nerve's innervation territory. These
criteria stipulate that CRPS is a diagnosis of exclusion, and
alternative (“differential”) diagnoses are provided in Box 1.
Uncertainty about the diagnosis can be distressing to patients
and may lead to inappropriate treatment. European countries
differ in their current standards about the timely manner of di-
agnosing CRPS; however, each country is better than the worst
situation: where patients are never being diagnosed (Figure 2).
Improvements in diagnostic standards are possible and
desirable through information and training of healthcare pro-
fessionals and patients. For example, in Switzerland an infor-
mation leaflet about CRPS was sent to all practising medical
doctors in the country, and there is consensus that awareness
has improved (SUVA, 2013).
While there are “perfect” diagnostic standards, it is im-
portant to establish realistic, country‐related next goals and
consequently identify which steps that aim to improve cur-
rent standards will help to achieve these goals (see Figure
2)—this process can later be repeated as appropriate. The
use of a diagnostic checklist is helpful, as shown in Figure
1. The European Pain Federation task force members rec-
ognize the challenges about the future development of the
CRPS Budapest criteria (Table 2); these challenges include,
among others, the diagnostic approach to a small number of
patients diagnosed according to Budapest criteria, who over
time lose some of their CRPS signs such as swelling, but
have unchanged pain. These patients are currently labelled
as “CRPS—not otherwise specified” (CRPS‐NOS, Table 2),
which has sometimes led to challenges with the reimburse-
ment of therapies, or in the context of insurance‐ and med-
ico‐legal proceedings, and a better solution may be required.
Standard 1: “Budapest” diagnostic criteria for
CRPS must be used, as they provide acceptable
sensitivity and specificity.
Standard 2: Diagnosing CRPS does not require
diagnostic tests, except to exclude other diagnoses.
It is worth noting that different opinions existed within
the Task Force regarding the usefulness of three‐phase bone
scintigraphy or magnetic resonance imaging for the diagno-
sis of CRPS, with some members considering these tech-
niques useful, and the majority not. There was agreement
that existing tests do not reflect pathognomonic parameters.
FIGURE 2 The European Task Force dynamic diagnostic standard quality framework for CRPS. HP: health professional
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GOEBEL Et aL.
3.2
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The management and referral of
patients with CRPS
Standard 3: The management of mild (mild pain
and mild disability) CRPS may not require a multi‐
professional team; however, the degree of severity
and complexity of CRPS must dictate the need for
appropriately matched multi‐professional care (for
details, see section care structure and Figure 3).
Standard 4: Patients diagnosed with CRPS
must be appropriately assessed; this assessment
must establish any triggering cause of their
CRPS, their pain intensity and the interference
their pain causes on their function, their activi-
ties of daily living, participation in other activi-
ties, quality of life, sleep and mood.
Most patients have short‐lasting CRPS which may im-
prove within a few months, even without treatment (Zyluk,
1998), so that these patients are best treated in non‐special-
ized care, provided by healthcare professionals who have had
standard training within their discipline (e.g., physiotherapist
and general practitioner—see Figure 3); early treatment is
highly likely to shorten the time of suffering for many pa-
tients (Gillespie et al., 2016).
Standard 5: Referral to specialized care must
be initiated for those patients who do not have
clearly reducing pain and improving function,
within 2 months of commencing treatment for
their CRPS, despite good patient engagement in
rehabilitation.
There is consensus that the best exact time may vary some-
what between patients, but that 2 months is a reasonable guide.
Standard 6: Referral to super‐specialized care
must be initiated for the small number of patients
with complications such as CRPS spread, fixed
dystonia, myoclonus, skin ulcerations or infec-
tions or malignant oedema in the affected limb,
and those with extreme psychological distress.
Referral to super‐specialized care may also be appropriate
for patients which are not improving in specialized services: (a)
for additional expertise in treating this rare patient group and (b)
for consideration of interventions not available in specialized
care (Figure 3).
There was no consensus about the best names for these
three types of services, although most Task Force members
considered the current wording in standard 6 to be accept-
able. There is agreement that other wordings may be substi-
tuted as is nationally or locally appropriate.
Treating healthcare professionals should be aware of
appropriate specialized care services and any services with
specific expertise and interest in the management of CRPS
nationally (“super‐specialized” care facilities), Figure 3.
Standard 7: Specialized care facilities must
provide advanced treatments for CRPS includ-
ing multidisciplinary psychologically informed
rehabilitative pain management programmes
(PMP). If they do not provide these treatments,
then they must refer for these treatments, if
needed, to other specialized care facilities, or to
super‐specialized care facilities (Figure 2).
We propose that specialized care facilities (Figure 3), who
wish to establish quality indicators about their regional CRPS
pathway, should in the first instance establish an internal reg-
istry of CRPS cases seen. Since the incidence of CRPS in
Europe (20–26/100,000) is known, such a registry may support
BOX 1 Possible differential diagnoses
1. Local pathology: Distortion, fracture, pseudoarthro-
sis, arthrosis, inflammation (cellulitis, myositis, vas-
culitis, arthritis, osteomyelitis and fasciitis),
compartment syndrome and immobilization‐induced
symptoms. Persistent defects after limb injury: osteo-
arthritis developing after joint fractures; myofascial
pain due to changed (protective) movement patterns
2. Affection of arteries, veins or lymphatics, for exam-
ple traumatic vasospasm, vasculitis, arterial insuffi-
ciency, thrombosis, Raynaud's syndrome,
thromboangiitis obliterans (Buerger's syndrome),
lymphedema and secondary erythromelalgia.
3. Connective tissue disorder
4. Central lesion, for example spinal tumour
5. Peripheral nervous system lesion (nerve compres-
sion, cervico‐brachial or lumbo‐sacral plexus affec-
tion, acute sensory polyneuropathy, (poly‐)neuritis,
autoimmune (e.g., posttraumatic vasculitis) and in-
fectious (e.g., borreliosis))
6. Malignancy (Pancoast tumour/paraneoplastic syn-
drome/occult malignancy)
7. Factitious disorder
Particular awareness about differential diagnosis is
advised in spontaneously developing CRPS (no trauma,
about 5% of cases), when the involvement is a proximal
part of the limb, such as the shoulder, or when there is
primary involvement of more than one limb.
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professionals to estimate whether those patients in their region
who are in need of their service do in fact reach them. The reg-
istry, once established, can also serve as a basis for additional
quality improvement efforts.
Each Chapter of the European Pain Federation should insti-
tute an appropriate treatment guideline for CRPS that is valid
for the circumstances in that country, even if this is adapted
from existing guidelines in other countries. Production of lay
audience‐appropriate versions should be considered.
3.3
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Prevention
Early, appropriate rehabilitation treatment post‐trauma may
prevent the development of CRPS; however, more data
are needed to fully understand its impact (Gillespie et al.,
2016). A high pain score one week after trauma may in-
dicate a “fracture at risk” (Moseley et al., 2014) and thus
identify patients who benefit most from preventative early
rehabilitation.
There is conflicting evidence about the value of using vi-
tamin C after distal radius fracture to prevent the develop-
ment of CRPS. There is also very preliminary evidence about
the value of steroids to prevent a prolonged course of CRPS
after very early CRPS has been diagnosed. More studies are
needed before recommendations can be given.
The Task Force decided that there is insufficient evidence
for or against any methods of prevention to allow for a stan-
dard to be written.
3.4
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Patient information and education
Standard 8: Patients, and where appropriate
their relatives and carers must receive adequate
information soon after diagnosis on (a) CRPS,
(b) its causation (including the limits of current
scientific knowledge), (c) its natural course, (d)
signs and symptoms, including body perception
abnormalities, (e) typical outcomes and (f) treat-
ment options. Provision of information is by all
therapeutic disciplines and must be repeated as
appropriate.
Emphasis should be put on the goals of treatment and on the
patient's active involvement in the treatment plan. The typically
benign prognosis should be emphasized.
FIGURE 3 Services and competencies. PMP = multidisciplinary pain management programme integrating psychological care and functional
rehabilitation; &additionally “Hand Therapists” in some European Countries, *note, some pain clinics and rehabilitation facilities do not provide
group‐based PMP, whereas others additionally provide “super‐specialized” services; **neuromodulation is listed to highlight the care structure
within which it is delivered; some centres will not provide this service
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GOEBEL Et aL.
Information is available from various sources (e.g.,
ARUK, 2016; Birklein, Humm, et al., 2018; Ceruso et al.,
2014; Crpsvereniging, 2018; Goebel et al., 2018; Perez et al.,
2014).
3.5
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Pain management—
medication and procedures
Standard 9: Patients must have access to phar-
macological treatments that are believed to be
effective in CRPS. Appropriate pain medication
treatments are considered broadly similar with
those for neuropathic pains, although high‐qual-
ity studies in CRPS are not available (Duong et
al., 2018). All patients with CRPS must receive
a pain treatment plan consistent with any geo-
graphically relevant guidelines.
Treatment with bisphosphonates and/or steroids has also
been considered. However, the Task Force members did not
reach agreement about the evidence for or against their effi-
cacy and safety.
Standard 10: Efforts to achieve pain control must
be accompanied by a tailored rehabilitation plan
Standard 11: Medications aimed at pain relief
may not be effective in CRPS, while causing
important adverse effects; therefore, stopping
rules should be established and a medication
reduction plan must be in place if on balance
continuation is not warranted.
Standard 12: CRPS assessment (see above) must
be repeated as appropriate, because both the nat-
ural development of the disease and of treatment
may change the clinical picture over time.
Some patients who have not responded to other treatments
may be considered for invasive neuromodulation and should be
referred for assessment.
3.6
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Physical and vocational rehabilitation
In partnership with the patient, appropriate, generally gentle,
graded exercises in the presence of pain should be advised
upon by a trained healthcare professional; this is essential as
to give the best chance of a good outcome and minimize dis-
tress. Immobilization of the CRPS limb should be avoided
wherever possible. (Gillespie et al., 2016; Oerlemans,
Oostendorp, de Boot, & Goris, 1999/10).
Standard 13: Patient's limb function, overall
function and activity participation, including
in the home and at work or school, must be
assessed early and repeatedly as appropriate.
Patients should have access to vocational reha-
bilitation (as relevant).
Standard 14: Patients with CRPS must have
access to rehabilitation treatment, delivered
by physiotherapists and/or occupational ther-
apists, as early as possible in their treatment
pathway.
This may shorten the early disease course and preserve limb
function. In some European countries, these treatments are
guided by medical doctors, including rehabilitation specialists,
general practitioners or others.
Standard 15: Physiotherapists and occupa-
tional therapists must have access to training in
basic methods of pain rehabilitation and CRPS
rehabilitation
3.7
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Identifying and treating distress
Standard 16: Patients must be screened for
distress including depression, anxiety, post‐
traumatic stress, pain‐related fear and avoid-
ance. This must be repeated where appropriate
(Bean, Johnson, Heiss‐Dunlop, Lee, & Kydd,
2015).
Standard 17: Where required, patients must have
access to evidence‐based psychological treatment
3.8
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Long‐term care
Some patients will continue to experience impediments to
their quality of life even after appropriate treatment has been
completed. These impediments either are due to ongoing con-
sequences of CRPS even though the condition has improved
(about 40% of all patients), or are caused by unresolved
CRPS (about 15%‐20%; de Mos et al., 2009). Particularly,
the latter group may benefit from the offer of a long‐term
management plan, mainly aiming to maximize support for
self‐management. Long‐term management is ideally initi-
ated through specialized or super‐specialized services and
may include referral back to these services if CRPS‐specific
symptoms change (Figure 3); an example is described here
(RUHNHSFT, 2016).
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TABLE 1 European Pain Federation standards for the diagnosis and management of complex regional pain syndrome
Diagnosis Standard 1 “Budapest” diagnostic criteria for CRPS must be used, as they provide acceptable sensitivity and
specificity.
Standard 2 Diagnosing CRPS does not require diagnostic tests, except to exclude other diagnoses.
Management and
Referral
Standard 3 The management of mild (mild pain and mild disability) CRPS may not require a multi‐profes-
sional team; however, the degree of severity and complexity of CRPS must dictate the need for
appropriately matched multi‐professional care (for details, see section care structure and Figure
3).
Standard 4 Patients diagnosed with CRPS must be appropriately assessed; this assessment must establish
any triggering cause of their CRPS, their pain intensity and the interference their pain causes on
their function, their activities of daily living, participation in other activities, quality of life,
sleep and mood.
Standard 5 Referral to specialized care must be initiated for those patients who do not have clearly reducing
pain and improving function within 2 months of commencing treatment for their CRPS despite
good patient engagement in rehabilitation.
Standard 6 Referral to super‐specialized care must be initiated for the small number of patients with
complications such as CRPS spread, fixed dystonia, myoclonus, skin ulcerations or infections or
malignant oedema in the affected limb, and those with extreme psychological distress.
Standard 7 Specialized care facilities must provide advanced treatments for CRPS including multidiscipli-
nary psychologically informed rehabilitative pain management programmes (PMP). If they do
not provide these treatments, then they must refer for these treatments, if needed, to other
specialized care facilities, or to super‐specialized care facilities (Figure 3).
Prevention None No Standards were considered as having sufficient support to recommend as mandatory.
Information and
Education
Standard 8 Patients and where appropriate their relatives and carers must receive adequate information soon
after diagnosis on (a) CRPS, (b) its causation (including the limits of current scientific
knowledge), (c) its natural course, (d) signs and symptoms, including body perception
abnormalities, (e) typical outcomes and (f) treatment options. Provision of information is by all
therapeutic disciplines and must be repeated as appropriate.
Pain Management Standard 9 Patients must have access to pharmacological treatments that are believed to be effective in
CRPS. Appropriate pain medication treatments are considered broadly similar with those for
neuropathic pains, although high‐quality studies in CRPS are not available (Duong et al., 2018).
All patients with CRPS must receive a pain treatment plan consistent with any geographically
relevant guidelines.
Standard 10 Efforts to achieve pain control must be accompanied by a tailored rehabilitation plan.
Standard 11 Medications aiming at pain relief may not be effective in CRPS, while causing important side
effects; therefore, stopping rules should be established and a medication reduction plan must be
in place if on balance continuation is not warranted.
Standard 12 CRPS assessment (see above) must be repeated as appropriate, because both the natural
development of the disease and of the treatment may change the clinical picture over time.
Physical and
Vocational
Rehabilitation
Standard 13 Patient's limb function, overall function and activity participation, including in the home and at
work or school, must be assessed early and repeatedly as appropriate. Patients should have
access to vocational rehabilitation (as relevant).
Standard 14 Patients with CRPS must have access to rehabilitation treatment, delivered by physiotherapists
and/or occupational therapists, as early as possible in their treatment pathway.
Standard 15 Physiotherapists and occupational therapists must have access to training in basic methods of
pain rehabilitation and CRPS rehabilitation.
Identifying and
Treating Distress
Standard 16 Patients must be screened for distress including depression, anxiety, post‐traumatic stress,
pain‐related fear and avoidance. This must be repeated where appropriate.
Standard 16 Where required, patients must have access to evidence‐based psychological treatment.
Long‐term Care None No standards were considered as having sufficient support to recommend as mandatory.
Version January 2019
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4
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DISCUSSION
We here present 17 standards for the diagnosis and manage-
ment of CRPS for consideration of adoption in Europe. They
are summarized in Table 1.
These standards can be considered best practice in CRPS
as supported by expert and patient agreement. We followed a
method that focused on evidence review but which prioritized the
production of a series of mandatory statements of optimal clinical
practice that could be followed in the majority of the 37 countries
who are members of the European Pain Federation. We delib-
erately avoided statements of optional, desirable or aspirational
practice, focusing on what was considered achievable by most.
There are a number of limitations to our approach that
should be taken into account. First, we did not canvas all cli-
nicians working in this field across all of the 37 countries, or
managers, politicians or other non‐healthcare stakeholders.
We focused instead on an expert group supported by a patient
representative. It is possible that different experts would have
produced different standards. This was a deliberate decision
on our behalf as we needed to set a first list of expert‐driven
standards from which to build. Second, we did not produce a
series of evidence syntheses (e.g., meta‐analytic review of ef-
ficacy or review of assessment tools). We judged that such an
effort would be resource‐heavy and unlikely to yield any clar-
ity due to the well‐documented absence of primary research
into this orphan disease. Instead, we relied on the extant lit-
erature which is well known to the group. Third, our decision
to craft standards as mandatory meant that the heterogeneity
of different views and nuanced opinions was not reported.
Presented only is the result.
The standards and their production have clinical, research
and policy implications.
1. Clinical implications: the next step is to share the stan-
dards with Federation members, which has a number
of challenges. First, language translation of the standards
is necessary. Second, we need to survey clinicians for
current practice as it relates to the standards to establish
a baseline of common clinical practice.
2. Research implications: there is no standard that could not
benefit from further study. And there are two areas where
we were unable to set standards of care. The group consid-
ered that a priority for research was to better understand
the heterogeneity of presentation within the current broad
category of CRPS. For example, there is a need to differ-
entiate between an early and late presentation. There is a
need to look at sex and age differences. And, there is a
need to look at CRPS in the context of comorbidities.
There are also challenges to the Budapest criteria which,
summarized in Table 2, need urgent attention.
3. Policy implications: these standards are the first step in a
process. Standards are essentially a tool to improve prac-
tice, but practice only improves if they are used. We next
need to understand the barriers to their implementation,
whether they are resource, educational, legislative or or-
ganizational. We propose that a CRPS pain champion be
appointed by each of the 37 national pain chapters, who can
guide development and be a point of contact for this work.
Finally, we recognize that these standards are open to change
and should be reviewed regularly. In particular, we need to take
account of national standards, practice reviews, guidance and
guidelines, either from individual pain societies or those in re-
habilitation, neurology or other therapy areas. We need also to
be mindful of non‐European work that could influence these
standards, including any new and emerging evidence. We have
therefore agreed with the European Pain Federation to review
these standards five years from their date of publication.
CONFLICT OF INTEREST
None Declared. GLM receives royalties for books on pain, re-
habilitation and CRPS, and speaker fees for lectures on pain,
rehabilitation and CRPS. He has received support from Pfizer;
Grunenthal; Workers’ Compensation Boards in Australia,
Europe and North America; Arsenal Football Club; Port Adelaide
Football Club; and the International Olympic Committee.
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TABLE 2 Challenges for the future development of CRPS
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Challenge 2 How shall we term those cases of CRPS which
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Challenge 3 How can we better clarify the specificity of the
Budapest diagnosis outside neuropathic pain
settings?
650
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SUPPORTING INFORMATION
Additional supporting information may be found online in
the Supporting Information section at the end of the article.
How to cite this article: Goebel A, Barker C,
Birklein F, et al. Standards for the diagnosis and
management of complex regional pain syndrome:
Results of a European Pain Federation task force. Eur
J Pain. 2019;23:641–651. https://doi.org/10.1002/
ejp.1362
... Guidelines for optimal management of CRPS support a collaborative partnership between patients and their health care professionals (HCPs). The partnership involves engagement in learning about CRPS, ideally to enable people with CRPS to develop an in-depth understanding of their condition (Pires et al., 2016;Goh et al., 2017;Goebel et al., 2018;Pardo et al., 2018;Goebel et al., 2019). Such a strategy is thought to facilitate critical thinking about the condition and its management, reduce fear of pain, and promote evidence-based decisions about management (Sorensen et al., 2010;Pires et al., 2016;Pardo et al., 2018). ...
... Independently, both groups agreed that knowing about causes, prognosis, effective self-management strategies, reaching out for social support, efforts to keep active, and the understanding that CRPS symptoms can be influenced by a wide range of factors, were 'very important'. Consensus on the importance of knowing about multidisciplinary care, with particular emphasis on the role of Physiotherapists and Psychologists, the self-management options and understanding the likely effects of medication, were in line with published best practice guidelines (Goebel et al., 2018), recommendations and standards (Goh et al., 2017;Goebel et al., 2019). The importance of the role of Exercise Physiologists in the management of CRPS, is not explicitly stated in the guidelines (Goebel et al., 2018). ...
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Purpose: Although multiple treatments have been advocated for complex regional pain syndrome (CRPS), the levels of supportive evidence are variable and sometimes limited. The purpose of this updated review is to provide a critical analysis of the evidence pertaining to the treatment of CRPS derived from recent randomized-controlled trials (RCTs). Source: The MEDLINE, EMBASE, Psychinfo, and CINAHL databases were searched to identify relevant RCTs conducted on human subjects and published in English between 1 May 2009 and 24 August 2017. Principal findings: The search yielded 35 RCTs of variable quality pertaining to the treatment of CRPS. Published trials continue to support the use of bisphosphonates and short courses of oral steroids in the setting of CRPS. Although emerging evidence suggests a therapeutic role for ketamine, memantine, intravenous immunoglobulin, epidural clonidine, intrathecal clonidine/baclofen/adenosine, aerobic exercise, mirror therapy, virtual body swapping, and dorsal root ganglion stimulation, further confirmatory RCTs are warranted. Similarly, trials also suggest an expanding role for peripheral sympathetic blockade (i.e., lumbar/thoracic sympathetic, stellate ganglion, and brachial plexus blocks). Conclusions: Since our prior systematic review article (published in 2010), 35 RCTs related to CRPS have been reported. Nevertheless, the quality of trials remains variable. Therefore, further research is required to continue investigating possible treatments for CRPS.
Article
Background: The literature concerning the outcomes of complex regional pain syndrome (CRPS) is contradictory, with some studies suggesting high rates of symptom resolution, whilst others demonstrate that CRPS symptoms can persist and lead to significant disability. The aim of the present study was to carefully document the extent of recovery from each of the signs and symptoms of CRPS. Methods: A sample of 59 patients with recently onset (<12 weeks) CRPS-1 were followed prospectively for 1 year, during which time they received treatment-as-usual. At baseline, 6 and 12 months, the following were measured: CRPS severity scores (symptoms and signs of CRPS), pain, disability, work status and psychological functioning. Results: Analyses showed that rates of almost all signs and symptoms of CRPS reduced significantly over 1 year. Reductions in symptom severity were clinically relevant and were greatest in the first 6 months and plateaued thereafter. However, at 1 year, nearly 2/3 of patients continued to meet the IASP-Orlando criteria for CRPS and 1/4 met the Budapest research criteria for CRPS. Only 5.4% of patients were symptom-free at 12 months. Conclusions: Overall the results were less optimistic than several previously conducted prospective studies and suggest that few cases of CRPS resolve completely within 12 months of onset. Improvements were generally greater in the first 6 months, and suggest that it may be worth exploring early interventions to prevent long-term disability in CRPS.
Article
Previous studies have shown that the outcomes of complex regional pain syndrome (CRPS) vary significantly between patients, but few studies have identified prognostic indicators. The aim of the present study was to determine whether psychological factors are associated with recovery from recently-onset CRPS amongst patients followed prospectively for 1 year. 66 CRPS (Type-1) patients were recruited within 12 weeks of symptom-onset and assessed immediately and at 6 and 12 months, during which time they received treatment-as-usual. At each assessment the following were measured: signs and symptoms of CRPS, pain, disability, depression, anxiety, stress, pain-related fear, pain catastrophising, laterality task performance, body perception disturbance and perceived ownership of the limb. Mixed-effects models for repeated measures were conducted to identify baseline variables associated with CRPS severity, pain and disability over the 12 months. Results showed that scores for all 3 outcome variables improved over the study period. Males, and those with lower levels of baseline pain and disability experienced the lowest CRPS severity scores over 12 months. Those with lower baseline anxiety and disability had the lowest pain intensity over the study period, and those with lower baseline pain and pain-related fear experienced the least disability over the 12 months. This suggests that anxiety, pain-related fear and disability are associated with poorer outcomes in CRPS and could be considered as target variables for early treatment. The findings support the theory that CRPS represents an aberrant protective response to perceived threat of tissue injury.
Article
There are limited data available on health related quality of life (QoL) of patients with complex regional pain syndrome (CRPS). In the present study we examined QoL in 975 CRPS patients attending six different clinics in the Netherlands. QoL was assessed using the SF-36 with the mental health summary score (MHS) and the physical health summary score (PHS) as dependent variable. Influence of gender, type of affected limb, disease duration, pain scores, CRPS severity and the employed set of diagnostic criteria was investigated. We found the lowest scores of QoL in the physical domains of the SF-36, with lower limb CRPS patients reporting poorer results than patients with an affected upper limb. Influence of gender on QoL was not found and correlations of QoL with disease duration and the CRPS severity score were weak. Pain correlated moderately with QoL. In addition, patients fulfilling stricter diagnostic criteria (i.e., the Budapest criteria) had lower QoL scores than patients fulfilling less strict criteria (i.e., the Orlando criteria). We conclude that loss of QoL in CRPS patients is mainly due to reduced physical health. A comparison with data available from the literature shows that CRPS patients generally report poorer QoL than patients with other chronic pain conditions, particularly in the physical domains. Pain correlated moderately with QoL and therefore deserves on-going attention by physicians. Lastly, patients meeting the diagnostic Budapest criteria have lower QoL scores than patients meeting the Orlando criteria, highlighting the impact of different sets of criteria on population characteristics.
Article
Complex regional pain syndrome (CRPS) is a distressing and difficult-to-treat complication of wrist fracture. Estimates of the incidence of CRPS after wrist fracture vary greatly. It is not currently possible to identify who will go on to develop CRPS after wrist fracture. In this prospective cohort study, a nearly consecutive sample of 1,549 patients presenting with wrist fracture to 1 of 3 hospital-based fracture clinics and managed nonsurgically was assessed within 1 week of fracture and followed up 4 months later. Established criteria were used to diagnose CRPS. The incidence of CRPS in the 4 months after wrist fracture was 3.8% (95% confidence interval = 2.9-4.8%). A prediction model based on 4 clinical assessments (pain, reaction time, dysynchiria, and swelling) discriminated well between patients who would and would not subsequently develop CRPS (c index .99). A simple assessment of pain intensity (0-10 numerical rating scale) provided nearly the same level of discrimination (c index .98). One in 26 patients develops CRPS within 4 months of nonsurgically managed wrist fracture. A pain score of ≥5 in the first week after fracture should be considered a "red flag" for CRPS. This study shows that excessive baseline pain in the week after wrist fracture greatly elevates the risk of developing CRPS. Clinicians can consider a rating of greater than 5/10 to the question "What is your average pain over the last 2 days?" to be a "red flag" for CRPS.