RÉSUMÉ
Background Diagnostic delay of axial spondyloarthritis (axSpA) is a widely recognized issue worldwide, providing a great burden for patients with this disease. AxSpA is present in a significant proportion of patients with inflammatory bowel disease (IBD). This UK study primarily aims to identify the presence of inflammatory back pain (IBP) in patients attending IBD clinic. Further aims of this study include investigating if participants had received further referrals and diagnoses for their IBP and considering factors contributing to diagnostic delay. Methods Patients were recruited from a Royal Free London NHS Trust hospital's IBD clinic. Each participant completed a 23-question survey. The Berlin criteria were applied to the questions to investigate the presence of IBP. Further questions were asked about their IBD diagnosis and treatment, the healthcare professionals they had seen for their back pain, and other extra-articular features associated with axSpA. Results Seventy-five patients completed the online survey sent out via email. Forty percent (n = 30) of participants were female and 60% (n = 45) were male. Sixty-one percent (n = 36) of participants from the colitis clinic reported they had back pain, and 41% of the participants reported back pain for over three months. Of these, 39% (12) of participants fulfilled the Berlin criteria for IBP. Of patients experiencing back pain for over three months, we found that 10% (3) fulfilled the Berlin criteria but had not received a diagnosis for their IBP. All patients who had fulfilled the Berlin criteria but had not received a diagnosis for their IBP had seen their general practitioner (GP) and an allied healthcare professional, but not a rheumatologist. Conclusions This study highlights the presence of possibly undiagnosed axSpA in patients with IBD. The reasons for the diagnostic delay of axSpA are multifactorial. We consider specific patient characteristics, lack of awareness and education of the condition, and issues in the referral process. There is a need to improve education and awareness of axSpA, reconsider referral processes, and consider new initiatives such as joint specialty clinics to identify and treat axSpA on time.
RÉSUMÉ
Background In the United Kingdom, diagnostic delay remains a challenge in axial spondyloarthritis (axSpA). Psoriasis is a frequently identified extra-musculoskeletal manifestation associated with axSpA. In this study, we aimed to determine the prevalence of inflammatory back pain (IBP) in psoriasis patients at a specialized psoriasis dermatology clinic in a London NHS Trust. Our primary goal was to identify psoriasis patients with IBP who were not referred to a rheumatologist, potentially leading to axSpA diagnostic delays. Additionally, we aimed to investigate factors contributing to these delays and strategies to address them. Methodology A patient survey consisting of 22 questions was used to assess the prevalence of IBP among 66 psoriasis patients attending a weekly specialized psoriasis dermatology clinic within a London NHS Trust between May and July 2023. The survey comprised patient demographic information along with inquiries about the existence of back pain exceeding three months. The Berlin Criteria was utilized to identify IBP among patients who reported experiencing back pain for over three months. Additionally, the survey sought information on prior diagnosis of axSpA and whether participants had consulted healthcare professionals regarding their back pain. Results Of the 66 patients invited, 51 (77%) completed the survey. The average age of the patients was 50 years (range = 19-74 years), with 58.8% being female. The mean duration of psoriasis was 15.7 years (range = 2-44 years). Overall, 45% (23/51) reported back pain lasting over three months. Among the patients who reported back pain for more than three months, 13 met the Berlin Criteria for IBP (25% of the total surveyed), and only four of these patients had a diagnosis of axSpA. Notably, seven patients (14% of the total surveyed) potentially had undiagnosed axSpA. General practitioners (GPs) were commonly consulted for back pain, yet only 39% of those with prolonged back pain had seen a rheumatologist. Despite experiencing prolonged back pain, 17% of patients had not sought healthcare advice for their symptoms. Conclusions This study highlights that IBP is a common yet underdiagnosed comorbidity in psoriasis patients. Dermatologists, GPs, and other allied healthcare professionals play a crucial role in detecting early axSpA. However, limited awareness of IBP hinders its identification in psoriasis patients and subsequent referral to rheumatologists. This highlights the need for improving awareness and education regarding axSpA among dermatologists and allied healthcare professionals as well as the public and patients to ensure timely diagnosis. The development of simple and easy-to-administer screening questionnaires to aid non-rheumatologists in identifying patients with IBP together with simplified referral pathways would increase onward referrals of appropriate patients to rheumatologists.
RÉSUMÉ
Background In the UK, diagnostic delays remain a challenge in axial spondyloarthritis (axSpA). Studies have shown that acute anterior uveitis is the most common extra-articular manifestation associated with axSpA. As part of a National Axial Spondyloarthritis Society (NASS) Aspiring to Excellence quality improvement project, this study aimed to ascertain the burden of inflammatory back pain (IBP) in patients attending a uveitis clinic and to establish the number of these patients who had not been referred to a rheumatologist, thereby contributing to the diagnostic delay. The secondary aims were to explore the factors contributing to the diagnostic delay. Methods A 22-question patient survey was created to identify the burden of back pain in patients attending a specialist uveitis clinic at a London NHS Trust. Participants were recruited when attending their clinic appointments. Survey content included patient demographics and whether they had experienced back pain for longer than three months. The Berlin Criteria was used to identify the presence of inflammatory back pain, and it was also ascertained whether participants had a previous diagnosis of axSpA. Participants were asked if they had seen any healthcare professionals regarding their back pain and the total number of consultations they had had with each profession. Results A cohort of 50 patients who attended the uveitis clinic at the Royal Free London NHS Trust completed the survey between February and July 2022. The mean age of the respondents was 52 years with a mean length of time with uveitis of 6.57 years. Of them, 64% were female and 36% were male. Forty per cent (40%) of participants (20 respondents) reported experiencing back pain for more than three months and 12% (six respondents) had a diagnosis of axSpA. Of those who reported back pain for more than three months, the mean age of onset of back pain was 28.6 years. Of the 14 participants (28%) who had back pain and were not diagnosed with axSpA, nine (18%) fulfilled the Berlin criteria for IBP. All participants had seen a GP or allied health professional specifically for their back pain. On average, respondents had seen two allied healthcare professionals, but only 40% (eight) of respondents with back pain had been seen by a rheumatologist. Conclusions In this study, the data highlights that inflammatory back pain is common in patients with uveitis and the majority of patients with inflammatory back pain had not been referred to a rheumatology service and potentially have undiagnosed axSpA. Contributing factors to this potential delay in diagnosis include a lack of awareness of axSpA and its presenting features and associated conditions and a lack of onward referral for a specialist rheumatology opinion. This highlights the need for public, patient and healthcare professional education and the development of timely referral pathways to reduce delays in diagnosis.
RÉSUMÉ
Introduction Diagnostic delay is an ongoing challenge in axial spondyloarthritis (axial SpA). A recent, comprehensive literature review has found a mean average of 8.7 years of delay between symptom onset and formal diagnosis in the United Kingdom (UK). The primary aim of this study was to identify delays to diagnosis experienced by patients with axial SpA under the ongoing care of two urban National Health Service (NHS) rheumatology services. The secondary aims were (a) to count healthcare professional (HCP) interactions after symptom onset but prior to the diagnosis, (b) to compare our data to published delay to diagnosis research and (c) to explore contributing factors locally and the variation between the two UK rheumatology services. Methods A 14-question survey was created to identify the delay to diagnosis and contributing factors across two urban NHS axial SpA services, from the onset of symptoms to diagnosis and commencement of treatment. Participants were recruited from clinic visits between August and November 2021 and completed the survey either on paper or via online survey software, both with HCP support. Results Those completing the survey formed a cohort of 106 participants with an established diagnosis of axial SpA who attended the axial SpA services at either Royal Free NHS Foundation Trust or Salford Care Organisation, Northern Care Alliance NHS Foundation Trust. The mean time from the onset of symptoms to the diagnosis of axial SpA was similar across centres despite the differences in demographics, with Royal Free at 5.72 years and Salford Royal at 5.96 years. When reviewing via median diagnostic delay, there was a notable difference with Royal Free at 6.09 years and Salford Royal at 4.27 years. Across the two sites, between the onset of symptoms and the diagnosis of axial SpA, 90% of the participants saw a general practitioner (GP), of which 63% of the patients saw a GP 1-5 times, 23% saw 5-10 times and 14% saw more than 10 times. Many participants also saw other HCPs, including physiotherapists, other manual therapists and hospital specialists prior to diagnosis. In addition, 32% saw one other HCP, 18% two other HCPs, 9% three, 7% four and 2.7% five other HCPs prior to diagnosis. Close to 80% of the patients stated that they had received adequate axial SpA education at diagnosis, and 76% of the patients were aware of who to contact in the event of a flare. Conclusions These data highlight that the mean average time to diagnosis for both trusts was between five and six years, somewhat lower than the 8.7-year national UK average. However, despite being specialist centres, these data are a long way from the National Axial Spondyloarthritis Society (NASS) "Gold Standard" of one year time to diagnosis. The contributors to this include lack of HCP and community awareness about axial SpA, its recognition and appropriate onwards referral. There is a need for concerted ways of working for the development of patient pathways and public and HCP education to reduce this delay to allow the ambitious NASS Gold Standard of one year time to diagnosis to be achieved.