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Delays between the onset of symptoms and first rheumatology consultation in patients with rheumatoid arthritis in the UK: an observational study
  1. Rebecca Jayne Stack1,
  2. Peter Nightingale2,
  3. Clare Jinks3,
  4. Karen Shaw4,
  5. Sandy Herron-Marx5,
  6. Rob Horne6,
  7. Chris Deighton7,
  8. Patrick Kiely8,
  9. Christian Mallen3,
  10. Karim Raza9,10
  11. On behalf of DELAY study syndicate
    1. 1 Division of Psychology, Nottingham Trent University, Nottingham, UK
    2. 2 Wellcome Trust Clinical Research Facility, Queen Elizabeth Hospital Birmingham, Birmingham, UK
    3. 3 Arthritis Research UK Primary Care Centre, Keele University, Keele, UK
    4. 4 Institute of Applied Health Research, University of Birmingham, Birmingham, UK
    5. 5 Independent Research Consultant, Brussels, Belgium
    6. 6 UCL School of Pharmacy, UCL, London, UK
    7. 7 Department of Rheumatology, Derby Teaching Hospitals NHS Foundation Trust, Derby, UK
    8. 8 Department of Rheumatology, St Georges University Hospital NHS Foundation Trust, London, UK
    9. 9 Institute of Inflammation and Ageing, University of Birmingham, Birmingham, UK
    10. 10 Department of Rheumatology, Sandwell and West Birmingham Hospitals NHS Trust, Birmingham, UK
    1. Correspondence to Dr Karim Raza; k.raza{at}


    Objective To investigate delays from symptom onset to rheumatology assessment for patients with a new onset of rheumatoid arthritis (RA) or unclassified arthritis.

    Methods Newly presenting adults with either RA or unclassified arthritis were recruited from rheumatology clinics. Data on the length of time between symptom onset and first seeing a GP (patient delay), between first seeing a general practitioner (GP) and being referred to a rheumatologist (general practitioner delay) and being seen by a rheumatologist following referral (hospital delay) were captured.

    Results 822 patients participated (563 female, mean age 55 years). The median time between symptom onset and seeing a rheumatologist was 27.2 weeks (IQR 14.1–66 weeks); only 20% of patients were seen within the first 3 months following symptom onset. The median patient delay was 5.4 weeks (IQR 1.4–26.3 weeks). Patients who purchased over-the-counter medications or used ice/heat packs took longer to seek help than those who did not. In addition, those with a palindromic or an insidious symptom onset delayed for longer than those with a non-palindromic or acute onset. The median general practitioner delay was 6.9 weeks (IQR 2.3–20.3 weeks). Patients made a mean of 4 GP visits before being referred. The median hospital delay was 4.7 weeks (IQR 2.9–7.5 weeks).

    Conclusion This study identified delays at all levels in the pathway towards assessment by a rheumatologist. However, delays in primary care were particularly long. Patient delay was driven by the nature of symptom onset. Complex multi-faceted interventions to promote rapid help seeking and to facilitate prompt onward referral from primary care should be developed.

    • rheumatoid arthritis
    • patient delay
    • primary care delay
    • help-seeking
    • access to care

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    • Contributors RJS, CJ, SH-M, CM, KS, RH, CD, PK and KR made substantial contributions to the conception or design of the work. The acquisition of data was undertaken by RJS, KR, PK and CD. RJS, CJ and SH-M facilitated patient and public involvement in the design, delivery and interpretation of this study. The analysis and interpretation of data were undertaken by RJS, PN and KR. RJS, PN CJ, SH-M, CM, KS, RH, CD, PK and KR were involved in drafting the work and revising it critically for important intellectual content. RJS, CJ, SH-M, CM, KS, RH, CD, PK and KR gave final approval of the version published. All authors agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

    • Funding This article presents independent research funded in part by the National Institute for Health Research (NIHR) under the Research for Patient Benefit Programme (funder’s reference PB-PG-1208-18114). CM is funded by the National Institute for Health Research (NIHR) Collaborations for Leadership in Applied Health Research and Care West Midlands, the NIHR School for Primary Care Research and a NIHR Research Professorship in General Practice (NIHR-RP-2014-04-026). CJ is part-funded by the NIHR Collaborations for Leadership in Applied Health Research and Care West Midlands. RH is part-funded by North Thames CLAHRC and his contribution was also supported by an NIHR Senior Investigator Award. KS is funded by the NIHR CLAHRC West Midlands initiative. KR is supported by the National Institute for Health Research (NIHR) Birmingham Biomedical Research Centre.

    • Disclaimer The views expressed in this publication are those of the authors and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health and Social Care.

    • Competing interests None declared.

    • Ethics approval Ethical approval was obtained from South Birmingham Research Ethics Committee (reference no. 10/H1207/98). Data were stored in a secure location and protected by multiple security systems.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data sharing statement Unpublished data are available from the corresponding author by request.

    • Collaborators Sandwell and West Birmingham Hospitals NHS Trust: Biruk Asfaw, Sabrina Kapoor, Kanta Kumar, Adam Slater & Christopher Buckley. Derby Teaching Hospitals NHS Foundation Trust: Chris Deighton & Alison Booth. Nottingham University Hospitals NHS Trust: Marie-Josephe Pradere, Ira Pande & Ian Gaywood. St George’s University Hospitals NHS Trust: Francesca Leone & Patrick Kiely. Lancaster Teaching Hospitals NHS Foundation Trust: Bronwen Evans & Marwan Bukhari. Poole Hospitals NHS Foundation Trust: Julia Taylor, Helena Knowles, & Sarah Westlake. University Hospitals Coventry and Warwickshire NHS Trust: Tanya Potter. Sherwood Forest Hospitals NHS Foundation Trust: Debbie Wilson, Jayne Smith & David Walsh. King’s College Hospitals NHS Foundation Trust: Nyarko Ahwireng, Audu Aderonke & David Scott. Guy’s and St Thomas NHS Foundation Trust: Louise Nel, Naomi Hare & Andrew Cope. North Bristol NHS Trust: Julie Taylor, Wendy Wilmott & Paul Creamer. West Hertfordshire Hospitals NHS Trust: Lynn Currie, Adam Young & Karen Markwell. Lewisham and Greenwich NHS Trust: Louise Pollard & Debbie Johnson. Surrey and Sussex Healthcare NHS Trust: Stephanie Allen & Raad Makadsi. Hampshire Hospitals NHS Foundations Trust: Peter Prouse & Janet Cushnaghan. University Hospitals of Leicester NHS Trust: Jessy Sabu & Moorthy Arumugam. County Durham and Darlington NHS Foundation Trust: Matt Bridges & Pam Race. Weston Area Health NHS Trust: Dawn Symonds & Matt Bridges. University Hospitals Birmingham NHS Foundation Trust: Jackie Cobb, Andrew Filer, Simon Bowman & Paresh Jobanputra. Royal Wolverhampton Hospital NHS Trust (at the time of recruitment the hospital from which patients were recruited was within the Mid Staffordshire NHS Foundation Trust): Julie Edwards &Tom Sheeran. East Kent Hospitals University NHS Foundation Trust: Caroline Crowley & Imad Jassim. University Hospitals of the North Midlands NHS Trust: Julie Gray & Jon Packham. NHS Fife: Paul Allcoat & Helen Harris. Yeovil District Hospital NHS Foundation Trust: Rebecca Rowland & Sally Knights. Northumbria Healthcare NHS Foundation Trust AND The Newcastle Upon Tyne Hospitals NHS Foundation Trust: Peta Heslop, Sandra Robinson, David Walker, Heather Russell & Sheryl Mitchell. Chesterfield Royal Hospital NHS Foundation Trust: Heather Cripps & Kevin Fairburn. Lancashire Teaching Hospitals NHS Foundation Trust AND East Lancashire Hospital NHS Trust: Sue Cotterell, Gillian Welch, Ayesha Madan & Lee Suan Teh. Cambridge University Hospitals NHS Foundation Trust: Lucy Winstanley & Shweta Bhagat. The Dudley Group NHS Foundation Trust: Lucy Kadiki, Chitra Ramful & Ravinder Sandhu. Royal Cornwall Hospitals NHS Trust: Amanda Datson & Anthony Woolf.

    • Patient consent for publication Not required.

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