Services for people with ankylosing spondylitis in the UK—a survey of rheumatologists and patients

Hamilton, Louise; Gilbert, Annie; Skerrett, Jane; Dickinson, Sally E.; Gaffney, Karl

doi:10.1093/rheumatology/ker013

Cited by 42 publications

(34 citation statements)

References 16 publications

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“…The authors found that only 14.6% of patients had ever attended a disease education session; furthermore, only 12.4% of patients had been invited to attend a patient education program. Of those patients who had attended an education session, 99.1% found them ''very useful'' or ''quite useful'', as defined by a questionnaire [50]. This result supports the concept that patient education is deemed important by the patients themselves, and that more needs to be done to ensure that patients are offered appropriate education.…”

Section: Increasing Knowledge and Awareness For Patients And Physicianssupporting

confidence: 63%

“…As part of a project launched by the National Ankylosing Spondylitis Society (NASS) aiming to develop recommendations for improving care for AS patients in the UK, healthcare service utilization was examined [50]. The authors found that only 14.6% of patients had ever attended a disease education session; furthermore, only 12.4% of patients had been invited to attend a patient education program.…”

Section: Increasing Knowledge and Awareness For Patients And Physiciansmentioning

confidence: 99%

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Improving the Management of Psoriatic Arthritis and Axial Spondyloarthritis: Roundtable Discussions with Healthcare Professionals and Patients

Garrido‐Cumbrera

Hillmann²,

Mahapatra

et al. 2017

Rheumatol Ther

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Psoriatic arthritis (PsA) and axial spondyloarthritis (AxSpA) are both chronic, inflammatory conditions that result in a substantial burden of disease and reduced quality of life for patients. Patient involvement in developing optimal disease management strategies, including defining appropriate goals, therapies, and treatment options, as well as in setting policy priorities and agendas, is key. A working group of patient organization representatives and rheumatologists explored what patients consider to be unmet needs, important treatment gaps, and future priorities in PsA and AxSpA management. Reducing pain and fatigue, and improving physical and social functioning and work productivity were identified as important treatment goals for patients. Although the major treatment target for both PsA and AxSpA is remission, with low/minimal disease activity an alternative target for patients with established or long-standing disease, the meaning of remission from the patient’s perspective needs to be explored further as it may differ considerably from the physician’s perspective. Key recommendations from the working group to tackle unmet needs included reducing time to diagnosis, increasing patient and physician disease awareness, focusing on patients’ priorities for treatment goals, and improving patient–physician communication. By addressing these key action points moving forward, the hope is that outcomes will continue to improve for patients with PsA and AxSpA.

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Section: Increasing Knowledge and Awareness For Patients And Physicianssupporting

confidence: 63%

Section: Increasing Knowledge and Awareness For Patients And Physiciansmentioning

confidence: 99%

Improving the Management of Psoriatic Arthritis and Axial Spondyloarthritis: Roundtable Discussions with Healthcare Professionals and Patients

Garrido‐Cumbrera

Hillmann²,

Mahapatra

et al. 2017

Rheumatol Ther

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“…Delay in diagnosis of SpA has been described in women 5,9,10 and in both sexes 6,7,[11][12][13][14][15][16]20,26,27,29,30,32,33,35,38,39,40,44,45,46 , and although Bandinelli 23 observed less diagnostic delay in women than in men, in most of the papers where delay was compared between men and women, it was greater in women 8,17,18,19,21,22,28,31,34,37,41,42,43,47,48 . This implies that patients have had medically unsolved disorders for a long time, have continued searching for a diagnosis and treatment, or are being erroneously diagnosed and managed 49 .…”

Section: Discussionmentioning

confidence: 99%

“…Table 1 shows the main characteristics of the 42 studies on diagnostic delay in SpA included in this systematic review 1,2,3,[8][9][10][11][12][13][14][15][16][17][18]19,20,21,22,23,[26][27][28][29][30][31][32][33][34][35][36][37][38][39][40][41][42][43][44][45][46][47]48 . The review included 23,883 patients (67.6% men, 32.3% women).…”

Section: Methodsmentioning

confidence: 99%

Understanding How the Diagnostic Delay of Spondyloarthritis Differs Between Women and Men: A Systematic Review and Metaanalysis

Jovaní

Blasco-Blasco²,

Ruiz-Cantero³

et al. 2016

J Rheumatol

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Objective.To identify empirical evidence of diagnostic delay in spondyloarthritis (SpA), determine whether sex-related differences persist, and conduct an analysis from that perspective of the possible causes, including the influence of quality research, in this group of inflammatory rheumatic diseases.Methods.A systematic review was done of delay in diagnosis of SpA in MEDLINE and EMBASE and other sources. Study quality was determined in line with the Strengthening The Reporting of OBservational studies in Epidemiology (STROBE) statement. A metaanalysis of 13 papers reporting sex-disaggregated data was performed to evaluate sex-related differences in diagnostic delay. The global effect of diagnostic delay by sex was calculated using means difference (D) through a fixed effects model.Results.The review included 23,883 patients (32.3% women) from 42 papers. No significant differences between the sexes were detected for symptoms at disease onset or during evolution. However, the mean for delay in diagnosis of SpA showed sex-related differences, being 8.8 years (7.4–10.1) for women and 6.5 (5.6–7.4) for men (p = 0.01). Only 40% of papers had high quality. A metaanalysis included 12,073 participants (31.2% women). The mean global effect was D = 0.6 years (0.31–0.89), indicating that men were diagnosed 0.6 year (7 months) before women.Conclusion.Delay in diagnosis of SpA persists, and is longer in women than in men. There are no significant sex-related differences in symptoms that could explain sex-related differences in diagnostic delay. Methodological and possible publication bias could result in sex-biased medical practice.

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“…The progressive ankylosis of affected joints is currently irreversible and it is, therefore, logical that early diagnosis and treatment offers the best opportunity to improve its prognosis. Several studies have shown a delay of more than 8 years between the onset of symptoms and diagnosis, with consequent delay in starting an effective therapy (Feldtkeller et al, 2003;Hamilton et al, 2011). This is a critical period clinically, with diagnosis frequently occurring after significant irreversible radiological damage has already occurred.…”

Section: Introductionmentioning

confidence: 99%

Lessons from Genomic Profiling in AS

Pimentel-Santos

Branco

Thomas

2012

Clinical and Molecular Advances in Ankylosing Spondylitis

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Services for people with ankylosing spondylitis in the UK—a survey of rheumatologists and patients

Abstract: This is the first study to explore the services available to people with AS in the UK. Almost one-third of patients are not seen in rheumatology departments and therefore may be under-treated. For those who are seen, access to anti-TNF drugs and other therapies remains an issue.

Cited by 42 publications

References 16 publications

Improving the Management of Psoriatic Arthritis and Axial Spondyloarthritis: Roundtable Discussions with Healthcare Professionals and Patients

Improving the Management of Psoriatic Arthritis and Axial Spondyloarthritis: Roundtable Discussions with Healthcare Professionals and Patients

Understanding How the Diagnostic Delay of Spondyloarthritis Differs Between Women and Men: A Systematic Review and Metaanalysis

Lessons from Genomic Profiling in AS

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