Strategies to Reduce Delays in Diagnosing and Treating Inflammatory Arthritis

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Clinical and epidemiological research

EXTENDED REPORT

A systematic literature review of strategies
promoting early referral and reducing delays in the
diagnosis and management of inflammatory arthritis
Edith Villeneuve,1 Jackie L Nam,2 Mary J Bell,3 Christopher M Deighton,4
David T Felson,5 Johanna M Hazes,6 Iain B McInnes,7 Alan J Silman,8 Daniel H
Solomon,9 Andrew E Thompson,10 Patience H P White,11 Vivian P Bykerk,12 Paul Emery13
▶ Additional (supplementary ABSTRACT particular rheumatoid arthritis (RA), be prima-
material) is published online rily undertaken by an arthritis expert, usually a
only. To view these files please
Background Despite the importance of timely
management of patients with inflammatory arthritis (IA), rheumatologist. Studies showed that RA patients
visit the journal online
(http:/dx.doi.org/10.1136/ delays exist in its diagnosis and treatment. were diagnosed earlier, received DMARD ther-
annrheumdis-2011-201063). Objective To perform a systematic literature review apy more frequently and achieved better clinical
For numbered affiliations see to identify strategies addressing these delays to inform and radiographic outcomes when managed by
end of article an American College of Rheumatology (ACR)/European rheumatologists.6–10 An UK National Audit Office
League Against Rheumatism (EULAR) taskforce. report also concluded that initial management in
Correspondence to secondary care was more cost-effective.11
Professor Paul Emery,
Methods The authors searched literature published
between January 1985 and November 2010, and ACR Despite this, delays occur between patients
University of Leeds, Section of
Musculoskeletal Disease and and EULAR abstracts between 2007–2010. Additional seeking medical attention and assessment by
NIHR Leeds Musculoskeletal information was obtained through a grey literature search, a rheumatologist for treatment initiation.5 12–14
Biomedical Research Unit, a survey conducted through ACR and EULAR, and a hand Patient-related factors13 15 and lag times between
Leeds, UK; initial clinical assessment and diagnosis have been
p.emery@leeds.ac.uk search of the literature.
Results (1) From symptom onset to primary care, documented as significant causes.5 14 16
community case-finding strategies, including the use For purposes of this literature review, delays to
Accepted 26 February 2012
of a questionnaire and autoantibody testing, have been diagnosis and starting treatment have been divided
Published Online First
24 April 2012 designed to identify patients with early IA. Several into four main steps (figure 1):
websites provided information on IA but were of varying 1. From the patient at symptom onset to assess-
quality and insufficient to aid early referral. (2) At a ment in primary care
primary care level, education programmes and patient 2. From primary care provider (PCP) to rheuma-
self-administered questionnaires identified patients with tology referral
potential IA for referral to rheumatology. Many guidelines 3. From rheumatology referral to assessment
emphasised the need for early referral with one providing 4. From rheumatology assessment to commence-
specific referral criteria. (3) Once referred, early arthritis ment of DMARD therapy.
clinics provided a point of early access for rheumatology An American College of Rheumatology-European
assessment. Triage systems, including triage clinics, League Against Rheumatism (ACR-EULAR) task-
helped prioritise clinic appointments for patients with force was assembled to analyse strategies address-
IA. Use of referral forms standardised information ing these delays. As initiatives promoting earlier
required, further optimising the triage process. Wait classification17 and treatment18 were already in
times for patients with acute IA were also reduced with place, the group focused its efforts on addressing
development of rapid access systems. referral delays (ie, the first three steps).
Conclusions This review identified three main areas of
delay to care for patients with IA and potential solutions METHODS
for each. A co-ordinated effort will be required by the A systematic literature review was performed
rheumatology and primary care community to address according to the Cochrane systematic reviews
these effectively. guidelines19 to identify effective strategies to reduce
delays in the diagnosis and management of IA, in
particular RA.
Objectives were outlined according to a PICO
INTRODUCTION (patient, intervention, comparison, outcome)
There is good evidence that early disease modi- framework.20 Patients were defined as adults with
fying antirheumatic drug (DMARD) initiation is musculoskeletal (MSK) symptoms. The interven-
associated with improved clinical and radiographic tion could be any case finding strategy aiming
outcomes.1–5 Achieving sustained remission or low to improve identification or referral of patients
disease activity is also more easily attained with with IA. Where present, this was compared
early therapy. with a group where the strategy was not used.
Evidence also suggests that early management Outcome measures for improving identification or
of patients with inflammatory arthritis (IA), in referral were documented. Medline, Embase,

Ann Rheum Dis 2013;72:13–22. doi:10.1136/annrheumdis-2011-201063 13

annrheumdis-2011-201063.indd 1 9/8/2012 1:28:13 PM



Figure 1 Potential strategies to reduce delays in the diagnosis and management of inflammatory arthritis.

Figure 2 Literature search flow chart.

Cinahl and the Cochrane Library were searched for articles Two reviewers (EV and JLN) independently screened titles
published between January 1985 and November 2010 and and abstracts of retrieved references, reviewed full papers and
EULAR and ACR abstracts between 2007–2010 obtained. The independently extracted data of selected articles. Discrepancies
search was done with an experienced librarian (see details of were resolved by discussion. The aim was to include all poten-
search terms and search strategy in the online supplementary tial strategies; a formal quality assessment of studies was not
material). No language restriction was used. Additional articles undertaken as this may have resulted in exclusion of some.
were retrieved by a grey literature search using the grey mat-
ters tool.21 Since the original search, an update was also per- RESULTS
formed by hand searching the literature. To identify strategies A total of 8668 articles were retrieved after initial removal of
that may not be published, a survey was conducted through the duplicate articles. Seventeen were selected for full review. Nine
ACR and EULAR societies inviting rheumatologists and health articles were found by hand search (four through an update fol-
professionals to share information on strategies that they had lowing the original search), 10 from conference abstracts, 10
implemented or were aware of to assist with early identification from grey literature and one from the survey (figure 2). Of the 47
and referral of patients with IA. articles included, 32 described strategies for earlier identification

14 Ann Rheum Dis 2013;72:13–22. doi:10.1136/annrheumdis-2011-201063




Table 1 Strategies for identification and referral of patients with inflammatory arthritis
Strategies for early identification and referral — from patients at symptom onset to primary care
Country of
Reference origin Type of strategy/description Reported outcomes

1) Community case finding strategies
Deane22 USA Health Fair – CSQ+antibody testing IA (≥1 swollen joint on examination) n=84 (14%).
(Ab) (RF and anti-CCP); 601 subjects: New RA (1987 RA classification criteria) n=9 (1.5%).
Reason for participation • CSQ≥1 and Ab* tests done at the same time: sensitivity 95.3%,
• Joint symptoms 51% specificity 32.4%, ppv 18.8%, npv 97.7%.
• General health interests 28% • CSQ≥4 then Ab testing: sensitivity 11.8%, specificity 99.2%, ppv 71.4%,
• Relatives with RA 21% npv 87.2%
RF or anti-CCP+but no synovitis n=42 (6.1%)

Eberhardt24 Sweden Self-administered hand test (firm handshake, 5262 patients screened:
a four-finger grip around a pencil and pincer grip • 873 Unable to perform the test requiring clinical review
of a sheet of paper) • 48 Individuals with suspected previously undiagnosed inflammatory
disease underwent further evaluation.
• 12 (0.2%) Diagnosed with new RA
Arthritis foundation screening USA Community screening –
programme25 (http://njtoday.
net/2010/06/18/foundation-
launches-new-rheumatoid-
arthritis-screening-program/)
Dr Lloyd’s arthritis screening USA Community screening/outreach programme –
and workshop26 (http://lloydchiro.
com/?p=844)
2) Public awareness programmes
Machold, Austria27 Austria A large bus (Rheuma-Bus), positioned at a number RA was considered for the first time in 1.1% of patients who were
of easily accessible public places, was adapted for subsequently referred to a rheumatology unit for assessment.
informal medical counselling regarding any kind of
MSK conditions. The initiative was accompanied
by countrywide information through broadcasts
and newspapers.
3) Internet and website information
About.com28 http:// Web Internet -
arthritis.about.com/od/
rheumatoidarthritis/l/
blrheumarthquiz.htm
Hwang29 Web Internet Accurate information, but reading level too high for average reader. Poor in
terms of differential diagnosis, prioritising the possibilities. None provide an
algorithm of action.
De Leonardis EULAR30 Web Internet 9.2% sponsored by rheumatologists/rheumatology associations. 12.8%
created by patient associations. 74.2% clearly showed banners or links to
one or more commercial sponsors.

Strategies for early identification and referral – from primary care to rheumatology referral
1) PCP and health professions education programmes
Schulpen31 Sweden Joint consultation of PCP and rheumatologist Patients referred by participating PCPs reduced by 62% per year; referral
every 6/52 rate for non-participating PCPs unchanged. The decrease in referral can lead
to a reduction in waiting lists.
Boonen32 The Netherlands Joint consultation between PCP and Reduced number of referrals to specialist clinics
rheumatologist for 2–3 h/week
Glazier33 Canada 2-day workshop and follow-up reinforcement Reported improved knowledge and communication with community
activities for healthcare providers and a toolkit of services
written materials
Ledue ACR34 USA Maine arthritis partnership. Distribution of a MAP 50% of participants found that it improved the quality of the referral process
guide (educational handbook, joint pain evaluation but did not affect the number of referrals
form, diagnostic algorithm for IA identification,
current national practice guidelines, physician
resource information and printed brochures for
patients)
Bingham ACR35 USA RAPID continuing medical Education Programme. Increase in short-term knowledge. Referral of patients with RA to
CME initiative to educate PCPs on the benefits of rheumatologists increased from 37.4% to 41.8%
screening/diagnosing patients with suspected RA
and co-managing these patients with a specialist
(workshops, mobile Epocrates activities and journal
supplements)
Fautrel, ACR38 France Early arthritis: early act. Community-based Resulted in increased awareness of importance of early detection,
knowledge-transfer programme using EULAR increased knowledge and ability to detect IA
screening recommendation to help GP detect IA
(Continued)





Table 1 (Continued)
Country of

Lineker39 Canada The Getting a Grip on Arthritis programme: based Using 3 standardised case scenarios, decision to refer of patient with early
on clinical practice guidelines adapted for primary RA to a rheumatology increased from 43.2% (117) to 54.6% (148) (p<0.05)
care and consists of an accredited interprofessional
workshop and 6 months of activities to reinforce the
learning
Boyle, Survey36 USA Tele-Clinic. PCPs presents patients via phone –
or webcam. In 2009: 216 cases presented, 100
clinicians participated
http://www.arhp.org/ Web Improving early diagnosis and treatment of RA’ – –
professional-education/ education programme for healthcare providers
programs/rheumatoid-arthritis37
2) Self administered questionnaires
Bell ACR40 44 Canada 11 Question self-administered EIA detection tool, Tested in 143 patients on the waiting lists of two rheumatologists (30
including history of joint pain and symmetry, pain or subsequently diagnosed with IA): cut-off score of 7 of 12 (0.58): AUC 0.77,
swelling of wrists or hands, EMS and duration, sensitivity 0.87 and specificity 0.52 for the detection of early IA.
ability to make a fist, functional ability, history and
family history of RA, history of psoriasis
Maksymowych ACR41 45 Canada ERASE web based screening tool for early Tested in 124 patients newly referred to a rheumatologist, 21 subsequently
RA. Weighted score (four for any MCP diagnosed with RA: cut-off score of 2.5: AUC 0.93; sensitivity 98%;
involvement)+(two for any wrist involvement)+ specificity 95%.
(two for duration weeks/months)+(−3 for any 2/4
of jaw pain, IBS, chronic fatigue, daily headaches).
Khraishi EULAR42 Canada RASQ – self administered RA screening questionnaire. Tested in 116 patients newly referred to rheumatology (61 with RA
Seven weighted questions+a diagram. One point according to the 1987 ACR classification criteria). Cut-off score 11.5/
deducted for a history of psoriasis. 15: Sensitivity 67.2%; specificity 60.4%. Cut-off score 9.5/ 15: sensitivity
85.2%; specificity 34%
Callahan43 USA Ratio of patient pain VAS score 75 RA patients compared with 75 patients with non-IA diffuse MSK pain
divided by the score from a questionnaire on (clinical fibromyalgia), P-VAS: D-ADL Ratio ≥ 3: sensitivity 72%; specificity
difficulties in ADLs 67% (RA vs non – inflammatory diffuse MSK pain)
3) Other potential PCP tools
Beattie48 Canada GALS MSK screening examination Sensitivity 50–77%, specificity 75–100% when used by physiotherapists.
used to detect RA
Singh49 India Computer based questionnaire with –
nine items to assist GPs to diagnose arthritis
4) Referral guidelines
Emery50 Europe Referral guideline: ≥3 Swollen joints. MTP/MCP –
involvement (squeeze test positive). EMS ≥ 30 min
Barts and The London EAC UK Referral guideline: clinical evidence –
http://www.bartsandthelondon. of IA. Disease duration 3–12 months from symptom
nhs.uk/docs/early_arthritis_ onset. ≥1 swollen joint.
clinic_guidelines.pdf51
Brighton and Hove http:// UK EAC referral algorithm & form: –
www.brightonandhove.nhs. criteria for referral: persistent joint inflammation
uk/healthprofessionals/clinical- ≥ 4 weeks and inflammation affecting at least three
areas/documents/EACreferral1. joint areas; and at least one of the following:
doc52 Involvement of MCP and/or MTP joints. EMS
≥30 min. Raised inflammatory markers (ESR or CRP).
Hulsemann53 Austria Referral criteria – also printed on the referral form: –
recent onset (<2 years) and 1 of the following:
EMS ≥ 30 min
Elevated inflammatory markers (ESR or CRP)

Strategies for identification and early referral – from rheumatology referral to assessment

1) Triage of referrals
Sathi54 UK ABC grade*: A (IA suspected and warranted a
clinical appointment in 2/52); B (established RA and
new patients that needed to be seen within 8/52);
C (low clinical priority to be seen within current
guidelines of 13/52) (n=102).
Class A vs. B+C: sensitivity 93.1%, specificity
87.7%, ppv 75%, npv 96.7%.
Graydon55 Canada A+ to D grade; A+ (urgent cases seen within 24–48
h); A (includes new IA; seen within 2–4 weeks); B
(includes established IA and undiagnosed or subacute
or probable IA); C (includes possible IA but not
deemed highly likely and seen within 6–12 months);
D (problems best assessed by another healthcare
provider and appointment not given) (n=206).
Grade A versus B–D: sensitivity 59.1%, specificity
87.7%, ppv 56.5%, npv 88.7%.
(Continued)





Table 1 (Continued)
Country of

Madan58 UK ABC grade*+anti-CCP (n=28 RF+patients) Graded A: 5 referrals; all anti-CCP+Graded B: 10 referrals; eight anti-CCP –
and two borderline results; no IA on follow-up; Grade C: 13 referrals; all CCP
– Class A versus B+C: sensitivity 100%, ppv 100%.
Barbour56 UK Eight items: ≥3/8=positive; Sensitivity 97%, specificity 55%, ppv 49%, npv 97%
EMS >1 h
Characteristic distribution for IA
First degree relative with IA
Clinical evidence of synovitis
ESR >20 mm/1st h (men), >30 mm/1st h (women)
Positive RF (>1/80)
Erosions on hands or feet x-ray
Benefit from NSAID or steroids
(n=100)
Harrington 200157 USA Preappointment management (n=279) Only 59% of referrals considered requiring an appointment; 30/164 (18%)
diagnosed with IA; 1- 3/52 access time for initial appointment versus. 2–10
days for an appointment after review of records
2) Referral forms
Arndt59 Germany Questionnaire including patient and doctor directed Rates of monthly referral remained the same; Increased use of NSAIDs
questions (n= 220 cf. n=125 before administration (52% vs 64%, p=03) and steroids (12.2% vs 24.9%, p=0.004)
of questionnaires)
Fitzgerald60 Canada Non–diagnosis-dependent priority referral score Independent rheumatologists: interrater time 1 (n=14) 0.8; time 2 (n=14)
(PRS) comprising eight criteria, one of which focuses 0.8; Intrarater: 0.83 PCPs: interrater time 1 (n=10) 0.81; time 2(n=8) 0.76;
on early inflammatory arthritis; Developed by a Intrarater: 0.82.
group of 10 rheumatologists and PCPs based on
32 case scenarios and tested by an independent
group of 24 rheumatologists and PCPs.
4)Triage with referral forms
Thompson ACR61 Canada Grade 1–4 based on the CART form (Grade Sensitivity 76.9%; specificity 75.4%
1=emergency, 2=urgent, 3=semiurgent,
4=elective) (n=469).
Hazlewood62 Canada Common referral form screened by a nurse clinician 57% of cases referred for possible IA; Reduction in wait time (Mean (SD)
(n=9182 cf. n=485 prior to use of the referral form) days): routine appointment: 155 (88) versus 143 (59) (p<0.01); Moderate:
110 (57) versus 77 (53) (<0.01); Urgent: 29 (46) versus 18 (17) (p=0.04)
Triage clinics
Gormley63 Ireland PCP/rheumatology nurse (RN) Comparison of appropriateness of referrals between GP and RN versus
rheumatologist respectively: sensitivity 89.9 and 87.1%; specificity 87.2 and
91.5%; ppv 88 and 91.5%; npv 89 and 87.1%
Bain64 Canada The Arthritis Program (TAP), Southlake Regional
Centre; Triage of paper referrals; Assessment
by AHP; EAC within TAP; Model is now being
disseminated through a training programme.
4) Rapid access services
Newman65 USA 4 phases: Third available rheumatology appointment fell from 60 days to <2
Eliminated backlog; Same day access for patients; days; Increase of 49.8% of new referrals and 50% of new RA referrals;
New appointment system; Protocols for primary Cancellations fell from 40% to 18%; Financial performance and patient
care colleagues. satisfaction also improved.
Maddison66 UK Early access to MSK programme developed Wait time for rheumatology fell from 35 weeks to 5 weeks. 116% increase
in total referrals.
Pflugbeil EULAR67 Austria Rapid access clinic – New patients seen within Wait time decreased from 6–10 weeks to 24 h; 2.5% had early arthritis of
24 h of contacting the department and briefly <3 months disease duration; 42% had inflammatory arthritis.
assessed and then either entered into the regular
OPC or provided with further recommendation.
Gärtner69 Austria Immediate access clinic (IAC) – Patients referred Wait time between referral and rheumatology assessment reduced: median
by their PCP, another specialist or who are (IQR) 8.0 (4.0–13.25) days versus frequently >4 months in 2007; 21.5%
self-referred receive a brief assessment by an seen before 3 months’ symptom duration; At follow-up, >75% of the
experienced rheumatologist who decides on further diagnoses of inflammatory rheumatic diseases initially suspected at the IAC
diagnostic or therapeutic management. were correct.
Smith70 UK Rapid access services for patients who present –
with acute problems including IA
Edwards EULAR71 UK –
Magnusson68 Canada –
6) EAC
Speyer72 The Netherlands Leiden EAC (1993–1994) (n=113 (EAC) versus. Time from symptom onset to PCP (weeks); EAC versus OPC: 6.4 versus
n=99 (OPC)) 17.3; Time from symptom onset to clinic (weeks); EAC versus OPC: 14.1
versus 37; Definitive diagnosis in 68% of patients at 2/52.
Van der Horst-Brunsma73 The Netherlands Leiden EAC (1993–1996) entry criteria: at least two Median time from symptom onset to clinic (weeks) EAC versus OPC:
of joint pain, joint swelling or ROM: duration of 4.4 (range 0.1–87) vs 17 (range 0.1–104); Time from symptom onset to
symptoms <2 years; First referral for this problem EAC versus OPC for patients with RA: 104 versus 164 days (p=0.095).
(n= 233 (EAC) vs n=241(OPC) fulfilling the EAC
criteria)
*Same grading system in both groups.
Ab, antibody; ABC grade*: A (IA suspected and warranted a clinical appointment in 2/52); B (established RA and new patients that needed to be seen within 8/52); C (low clinical
priority to be seen within current guidelines of 13/52); ACR, American College of Rheumatology; ADLs, activities of daily living; anti-CCP, anticyclic citrullinated peptide antibody;
AHP, allied health professional; AUC, area under the curve; CME, continuing medical education; CRP, C reactive protein; CSQ, connective diseases screening questionnaire; EAC, early
arthritis clinic; EIA, early inflammatory arthritis; EMS, early morning stiffness; ESR, erythrocyte sedimentation rate; EULAR, European League Against Rheumatism; GALS, gait, arms,
legs and spine; GP, general practitioner; IA, inflammatory arthritis; IBS, irritable bowel syndrome; MCP, metacarpophalangeal; MSK, musculoskeletal; MTP, metatarsophalangeal; npv,
negative predictive value; NSAID, non-steroidal anti-inflammatory drug; OPC, outpatient clinic; PCP, primary care provider; ppv, positive predictive value; RA, rheumatoid arthritis; RF,
rheumatoid factor; RN, rheumatology nurse; VAS, visual analogue scale.




no validated internet-based strategies to identify IA were found.
Table 2 Summary of strategies for early identification and referral of
One internet-based self-administered questionnaire with a ver-
patients with inflammatory arthritis
sion specific for RA provided scores based on positive answers
Strategy Efficacy
but no information was given regarding the likelihood of having
1. From patients at symptom onset to primary care IA and no algorithm for action in terms of seeking care.28
Community case finding strategies There were two evaluations of the internet. These suggested
Health fair – joint examination22 23 + that reading level was too high for the average reader,29 and that
Health fair – questionnaire+autoantibody testing22 23 + the majority of the sites were commercially driven.30
Self administered hand test24 −
Internet
Internet and website information29 30 −
Strategies from primary care to rheumatology referral
2. From primary care to rheumatology referral Recognising patients with possible IA at the primary care level
PCP and health professional education programmes31–39 ++ is key to early referral. Strategies at this stage included PCP and
Self administered questionnaires40–45 + health professional education programmes, the use of patient
3. From rheumatology referral to assessment self-administered questionnaires, an MSK screening examina-
Triage of referrals54–58 + tion, and use of referral guidelines.
Referral forms59 60 +
Triage+referral forms61 62 ++ PCP and health professional education programmes
Triage clinics63 + Eight references were found reporting on strategies to improve
Early arthritis clinics72 73 ++ PCP knowledge of IA including workshops, joint consultation
Rapid access services65–67 69 ++ with PCPs and rheumatologists, a tele-clinic and distribution
Not shown to be effective (−), improves identification of patients with IA/RA (+), of educational material. All reported some success in terms of
increases referrals or reduces referral delay to rheumatology (++). improved awareness, knowledge and ability to detect IA and
quality of the referral process.31–38 One described a continuing
or improved referral and provided some outcome measure of medical education (CME) initiative to educate PCPs on the ben-
efficacy and 15 described systems that may reduce referral efits of screening and diagnosing patients with suspected RA and
delays. There were eight articles addressing step 1 (patient to co-managing them with a specialist.35 In addition, an increase
PCP), 19 for step 2 (PCP to rheumatology referral) and 20 for in short-term knowledge, the percentage of patients with RA
step 3 (referral to rheumatology assessment). These are detailed referred to rheumatologists increased from 37.4% to 41.8%
in table 1 and discussed below. over a 4-month period. Another programme, based on clinical
practice guidelines adapted for primary care and consisting of an
Strategies from patient at symptom onset to primary care accredited inter-professional workshop and 6 months of activi-
Strategies at this level included community case-finding and ties to reinforce the learning, showed that decisions to refer early
public awareness programmes and website information. RA to rheumatology increased from 43.2% to 54.6%.39
Joint consultations between PCPs and rheumatologists also
Community case finding strategies
influenced referral behaviour with a decrease in referrals of patients
A community health fair screening approach using a questionnaire
who may be managed in primary care potentially reducing waiting
and autoantibody testing has been developed to identify individu-
lists of patients requiring rheumatology assessment.31 32
als with undiagnosed IA.22 The diagnostic accuracy of the com-
binations of the CSQ (the Connective Tissue Disease Screening Patient self-administered questionnaires
Questionnaire) and testing for rheumatoid factor (RF) and anti-cyclic Four self-administered questionnaires were found.40–43 These
citrullinated peptide antibodies (anti-CCP) to identify IA yielded were reported to be simple and easy to perform. Their use may
maximal sensitivity, specificity and positive and negative predictive provide an initial guide for PCPs to identify patients with IA.
values of 95.3%, 99.2%, 71.4% and 97.7% respectively. Further Two were developed for use in the preprimary care setting.40 41
analysis of this strategy on a larger cohort is awaited to determine One, an 11 item early IA detection tool developed and vali-
the optimal diagnostic accuracy and cost-effectiveness.23 dated by Bell et al,40 included questions relating to symptoms of
A simple self-administered test comprising a firm handshake, IA, functional ability, personal and family history of RA and a
a four-finger grip around a pencil and pincer grip of a sheet diagnosis of psoriasis.44 The other, a web-based screening tool
of paper to detect inflammatory hand disease has also been for RA, was based on patients’ self-reported pattern of joint
described.24 Although easy to perform, many patients required involvement, symptom duration and the absence of symptoms
clinical review due to the low specificity of this tool. typical of fibromyalgia.41 45 A third, using seven weighted ques-
Two other projects were found inviting individuals with joint tions and a diagram to identify painful and swollen joints, was
symptoms for screening and counselling for arthritis but no designed primarily for use by rheumatologists.42 Evaluated to
reported measures of efficacy were documented.25 26 identify RA according to the 1987 RA classification criteria, it
Public awareness programmes was noted to be specific in excluding patients with ankylosing
In one public awareness initiative of MSK conditions, a large bus spondylitis, psoriatic arthritis and osteoarthritis, but less so for
was adapted and positioned at easily accessible places for infor- patients with arthralgia some of whom may have had early
mal medical counselling.27 The programme was accompanied IA. The authors had planned to develop a new version of the
by countrywide media announcements. RA was considered questionnaire using the 2010 RA classification criteria.17
for the first time in 1.1% of patients who were subsequently A simple measure using the ratio of the patient pain visual
referred to a rheumatology unit for assessment. analogue scale (P-VAS) and a questionnaire assessing difficulty
with activities of daily living (D-ADL) has also been developed
Internet and website information to distinguish patients with IA from those presenting with
With the growing internet access patients increasingly use the web non-inflammatory causes of pain.43 This has yet to be tested in
as a source of information or means for self-diagnosis. However, an undiagnosed population.





Other potential tools information for triage.59–62 All included elements of history,
Although primarily performed by rheumatologists and other physical examination and laboratory tests and some asked for
MSK specialists, screening in primary care has been used to an attempt at diagnosis. Requesting referents to rate the level
improve the detection of MSK conditions.46 Use of the GALS of urgency of their referrals was also used to guide evaluation
(Gait, Arms, Legs and Spine) screening examination47 by physi- of the referral.60
otherapists to detect RA48 yielded a sensitivity and specificity Two groups assessed the use of referral forms together with
between 50% to 77% and 75% to 100% respectively, suggesting a triage system and have shown a significant increase in the
that this may help PCPs rule out non-IA conditions and maintain ability to detect urgent referrals61 and reduce waiting time for
priority access for patients with IA. appointments compared with triage alone.62
A computer-based program consisting of nine items (six
symptom related and three based on laboratory results –RF, anti- Triage clinics
CCP and erythrocyte sedimentation rate) has been designed to Our search retrieved two articles describing triage clinics in
help PCPs diagnose RA with a provisional diagnosis given based which individuals were initially assessed by a PCP or health
on the presence or absence and severity of each item. However, professional before an appointment with a rheumatologist was
this program has not yet been evaluated in terms of improving given. In one, both rheumatology nurses and PCPs performed
identification and referral of patients with IA.49 well with sensitivity, specificity, positive and negative predic-
tive values ranging between 87% and 92%.63 In another, a high
Referral guidelines degree of patient satisfaction was reported.64 No data on the
Many national and international societies have published IA improvement of waiting times were described.
management guidelines, most emphasising the importance of
early rheumatology referral. One reference provided an evi- Rapid access services
dence-based clinical guide for referral with specific elements The availability of rapid access services provided an additional
including number of swollen joints and duration of early means for patients with IA who require urgent appointments
morning stiffness.50 Many early arthritis clinics (EACs) have to be seen.
used similar criteria for inclusion in their clinics.51–53 Several papers on clinic or healthcare reorganisation aiming to
provide early access to newly presenting patients have shown
reduction in waiting times and increase in referrals for patients
Strategies from rheumatology referral to rheumatology with IA. These included changes in appointment scheduling and
assessment designing a protocol for PCPs for certain rheumatic conditions,65
Strategies addressing delays from time of referral to rheumatol-
design of an early access MSK programme combining rheuma-
ogy assessment included triage of referrals and use of referral
tology, orthopaedics and physiotherapy resources66 and the
forms, the development of EACs and other types of rapid access
implementation of rapid/immediate access clinics where new
services for patients who present acutely with IA.
patients were seen within 1 day to 2 weeks of contacting/refer-
Triage of referrals ral to the department for a brief assessment prior to appoint-
Five papers were identified reporting the use of triage systems ment scheduling or further recommendation.67–69 These clinics
for referral to a rheumatologist. These were found to help priori- may prove particularly effective for early access to rheumatol-
tise appointments for patients with IA and reduce unnecessary ogy services where rheumatologists are few in number.
referrals. Two groups also described rapid access services for patients
Two used an A to C/D grading system where A was assigned presenting with acute problems of which a proportion were
to urgent cases, including individuals with new IA, to be seen newly diagnosed IA — in one staff were available at all times
within 2–4 weeks.54 55 Use of standardised forms provided a for telephonic discussion and arrangements made for patients to
checklist of essential information including clinical findings, be seen, and in another urgent new referrals were seen at a treat-
radiographic and blood results and response to non-steroidal ment service set up as a designated twice-weekly session.70 71
anti-inflammatory drugs and corticosteroids.56
Early Arthritis Clinics
Reviewing patient records prior to making an appointment
Many EACs have reported on patient symptom duration at first
was another effective form of triage.57 However, availability of
visit and proportions of patients diagnosed with IA. Two papers,
patient records would be required and may not always be read-
both from the Leiden EAC, compared outcomes to routine care
ily accessible in all centres.
and showed that symptom duration at first PCP visit and at first
An audit of one of the triage systems54 showed that some
rheumatology clinic visit were shorter in patients referred to
patients without IA were given priority clinic appointments at
EACs (6.4 vs 17.3 weeks and 14.1 vs 37 weeks, respectively).72 A
PCP request when the clinical information in the referral letter
similar analysis a few years later73 showed that symptom dura-
would have suggested otherwise. This was often on the basis
tion was considerably shorter in both groups (median (range)
of a false-positive RF. A small prospective observational cohort
4.4 weeks (0.1–87) and 17 weeks (0.1–104) at first EAC and rou-
study found anti-CCP testing to be of benefit to prioritise clinic
tine care clinic visits, respectively) suggesting an increased aware-
access in these patients.58
ness of the clinic from referring physicians and/or improvement
in clinic service provision over time.
Referral forms
The ability to triage referral letters appropriately is dependent
on the information provided by the referent. Many rheumatol- DISCUSSION
ogy referrals have been found to lack basic details leading to RA is a prevalent condition with important socioeconomic impli-
inappropriate patient triage. cations. In England it is estimated that 580 000 adults have RA;
Several groups have designed referral forms to improve the 26 000 new cases are diagnosed annually with approximately
triage process. Our search retrieved four forms that have been 45% of working age.50 Twenty per cent have been reported to
tested — these have helped standardise and provided important quit working due to RA after 5 years.74





Evidence from published literature and clinical practice clearly rheumatology assessment. The cost-effectiveness of other meas-
supports the need for early diagnosis and treatment to reduce ures for example, anti- citrullinated protein antibodies (ACPA);
joint damage and improve clinical outcomes,2 50 75 76 ideally testing by PCP may be an area for research.
within 3 months of symptom onset.2 50 77 Further evidence has The establishment of EACs79 has improved access to early
shown benefit from early management by a rheumatologist.6 9 76 rheumatology assessment. Many PCPs use rheumatology
However, delays on the part of the patient in seeking medical guidelines and criteria for early referral. Although they vary
care15 and subsequent rheumatology referral and assessment across the different EACs, a combination of early referral cri-
are still noted. In a recent study, the median delay across the teria and point of referral to specialised care organised in an
10 European centres from symptom onset to rheumatology EAC or equivalent clinic appears effective. Other rapid access
assessment was 6 months, with the percentage of patients seen services have provided means for patients presenting with acute
within 3 months of symptom onset ranging from 8% to 42%.14 IA to be seen early.
In some centres (Birmingham, Heraklion) patient delay was a Our literature review has its limitations. The majority of the
key component while in others (Berlin, Vienna) and in Leiden5 data for this review originate from Europe and North America.
patients presented early. In most, referral from PCP to a rheu- Work still needs to be done in other healthcare environments to
matologist was an important contributor to overall delay, with a assess strategies to reduce delays.
median of at least 2 months in seven of the 10 centres.
Our literature review and survey results found several strat- CONCLUSION
egies addressing these. Some were well established and had Early rheumatology referral and treatment is vital for patients
outcome measures demonstrating efficacy in improving referral. with IA. To succeed, this will require measures addressing delays
Others were less well developed and some still relatively new at all levels — from patient at symptom onset to primary care
in their design. assessment and referral to rheumatology assessment and initia-
To address delays from patients at symptom onset to primary tion of therapy — and will require a combination of education
care assessment, community mass case-finding strategies have of all involved and an adequate practice organisation to ensure
been implemented though cost effectiveness still needs to be rapid access for patients with IA.
established. Education of the target population about IA prior
to screening has been suggested as a key factor to optimise Author affiliations 1Department of Rheumatology, CHUM, Montreal, Canada
2Section of Musculoskeletal Disease and NIHR Leeds Institute of Molecular Medicine,
diagnostic accuracy of testing.22
University of Leeds, Leeds, UK
Public awareness is an integral part of early referral15; how- 3Department of Rheumatology, Sunnybrook Health Sciences Centre, Toronto, Canada
ever, little was found in terms of education of the general pop- 4Department of Rheumatology, Royal Derby Hospital, Derby, UK
ulation. Although the internet is widely used to disseminate 5Clinical Epidemiology Research and Training Unit, Boston University, School of

information, the quality of questionnaires and website informa- Medicine, Boston, Massachusetts, USA
6Department of Rheumatology, ErasmusMC, Rotterdam, Netherlands
tion would need improvement if these were to be used to assist 7Glasgow Biomedical Research Centre, University of Glasgow, Glasgow, UK
referral of patients with early IA. 8Arthritis Research UK, Chesterfield, Manchester, UK
The role of PCPs is important for early referral as the major- 9Division of Rheumatology, Brigham and Women’s Hospital, Harvard Medical School,

ity of people with arthritis symptoms will seek help in the first Boston, Massachusetts, USA
10Department of Rheumatology, University of Western Ontario, London, Canada
instance from a PCP48; MSK conditions have been documented 11Division of Rheumatology, The George Washington University, Washington DC, Washington,
as the most common reason for recurring PCP visits, comprising
USA
up to 30% of consultations.40 A study encompassing a literature 12Division of Rheumatology and Immunology, Brigham and Women’s Hospital, Boston,
review, best practice guidance and views of expert informants Massachusetts, USA
13Section of Musculoskeletal Disease and and NIHR Leeds Musculoskeletal
suggested that high quality PCP care would need to fulfil two core
aspects of care and management of patients with arthritis – first Biomedical Research Unit, University of Leeds, Leeds, UK
early recognition of symptoms and second a prompt referral to a Acknowledgements The authors would like to thank Deirdre Andre for her help
specialist for diagnosis, ideally within the first or second consulta- with the literature search and Amy Miller, Regina Parker and Caroline Pasche for their
tion.76 However, it has been reported that <50% are referred to a help in conducting the survey.
specialist within 3 months5 49 and that people with RA may visit Contributors EV and JLN performed the systematic literature review and contrib-
their PCP an average of four times before being referred. Lack of uted equally to the writing of the manuscript. MJB, CMD, DTF, JMH, IBM, AJS, DHS,
AET, PHW, VPB and PE formed the ACR/EULAR taskforce involved in the planning and
knowledge and awareness and lack of incentives for payment and
design of the systematic literature review and contributing to writing and editing of
quality measures have been reported as factors contributing to the manuscript.
the delays. Insidious symptom onset and atypical clinical presen-
Funding The study was funded by the American College of Rhematology/European
tations of RA may be other contributing factors. League Against Rheumatism.
Our review found that many guidelines confirmed the need
Competing interests None.
for early referral for persons with suspected IA33 34 50 78 with few
Provenance and peer review Not commissioned; externally peer reviewed.
providing specific guidance.50 PCP and health professional edu-
cation programmes, which may take the form of CME and feed-
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A systematic literature review of strategies
promoting early referral and reducing delays
in the diagnosis and management of
inflammatory arthritis
Edith Villeneuve, Jackie L Nam, Mary J Bell, et al.

Ann Rheum Dis 2013 72: 13-22 originally published online April 24,
2012
doi: 10.1136/annrheumdis-2011-201063

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