Personal Experiences with Diagnostic Delay Among Axial Spondyloarthritis Patients: A Qualitative Study

Dubé, Catherine; Lapane, Kate L.; Ferrucci, Katarina A.; Beccia, Ariel L.; Khan, Sara; Yi, Esther; Kay, Jonathan; Kuhn, Kristine A.; Ogdie, Alexis; Liu, Shao‐Hsien

doi:10.1007/s40744-021-00321-z

Cited by 11 publications

(6 citation statements)

References 33 publications

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“…Diagnosis of the disease is still not ideal, with the mean diagnostic delay ranged from approximately 4 to 12 years. In addition to physical pain, the delay in treatment also leads to psychological suffering, such as distress or depression [ 32 ]. Treatment of axSpA also needs optimization and improvements.…”

Section: Discussionmentioning

confidence: 99%

VDR Polymorphic Variants Are Related to Improvements in CRP and Disease Activity in Patients with Axial Spondyloarthritis That Undergo Anti-TNF Treatment

Bugaj

Wielińska

Świerkot

et al. 2022

Genes

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Vitamin D deficiency is related with susceptibility or progression of various autoimmune diseases. The aim of the study was to assess potential relations between single nucleotide polymorphisms (SNPs) in the vitamin D receptor-coding gene (VDR): rs1544410 (BsmI), rs2228570 (FokI), rs731236 (TaqI), rs7975232 (ApaI), and disease activity in patients with axial spondyloarthritis (axSpA) undergoing anti-TNF therapy. The VDR rs731236 CT genotype was statistically more common among female patients (p = 0.027). An improvement of CRP equal to or higher than 50% after 3 months of anti-TNF therapy was observed for rs2228570 T allele (p = 0.002). After 6 months, CRP improvement equal to or higher than 75% was related to presence of the rs1544410 AA genotype (p = 0.027) and the rs731236 CC homozygotes (p = 0.047). Baseline BASDAI values were lower in individuals with the rs2228570 TT genotype (p = 0.036) and rs7975232 C allele (p = 0.029). After 6 months of treatment, lower BASDAI values were observed in AC heterozygotes (p = 0.005). The same AC genotype was more frequently detected in patients with remission (BASDAI ≤ 2) (p = 0.001) and in those achieving BASDAI improvement equal to or higher than 75% (p = 0.006). In conclusion, VDR SNPs were found to relate to CRP and BASDAI values at different time points of anti-TNF therapy.

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Section: Discussionmentioning

confidence: 99%

VDR Polymorphic Variants Are Related to Improvements in CRP and Disease Activity in Patients with Axial Spondyloarthritis That Undergo Anti-TNF Treatment

Bugaj

Wielińska

Świerkot

et al. 2022

Genes

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“…In addition, the proposed screening questions were informed by our previous work in which we explored issues related to patients' diagnostic journeys using evidence-based qualitative research methodology. This helped us to understand and incorporate patient and physician perspectives [15,17,45]. Our study also has several limitations.…”

Section: Strengths and Limitationsmentioning

confidence: 99%

“…For each domain, multiple questions were included that captured essentially the same underlying construct. Through a process of multiple iterations, only those items which scored well under domains that were most relevant to axSpA, according to published literature and our previous work [17,[43][44][45], were included to develop a patient-friendly screener. For example, from the potential screening questions, three questions (Q5, Q6, Q7) related to movement were examined.…”

Section: Plos Onementioning

confidence: 99%

Development and test–retest reliability of a screening tool for axial spondyloarthritis

et al. 2022

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Background People with axial Spondyloarthritis (axSpA) suffer from lengthy diagnostic delays of ~7 years. The usage of screening tools to identify axSpA patients in primary care can reduce diagnostic delays by facilitating early referral to rheumatologic care. The purpose of this study was to examine the psychometric properties of a potential screening tool for patients with axSpA. Method Content validity was evaluated by soliciting feedback from 7 rheumatologists regarding the relevance and content representativeness of the proposed screening questions. For the test-retest study, participants ≥18 years of age with chronic back pain (≥3 months) without a diagnosis of mechanical or inflammatory back pain (n = 91) were e-recruited through ResearchMatch. Participation included completing identical baseline and follow-up questionnaires ~14 days apart. Weighted quadratic kappa was used to measure test-retest reliability between the two ratings of the ordinal scales. Construct validity was examined using exploratory factor analysis (EFA) and items with factor loadings ≥0.6 were extracted. Scale dimensionality and simplified factorial solutions were measured using Kaiser’s criteria (Eigenvalue >1). Cronbach’s alpha was used to measure internal consistency. Results Most participants were women, non-Hispanic white, and had at least some college education, with a mean age of 45 years. On average, the age at onset of back pain was 31 years. Eleven questions yielded test–retest reliabilities ranging from 0.6 to 0.76. Results from EFA extracted two factors relating to: 1) how pain affects daily life functioning and 2) whether pain improves with movement. Internal consistency was high for questions evaluating how pain affects life, with a Cronbach’s alpha of 0.81. Following assessment for validity and reliability, the questionnaire was revised to create the 6-item screening tool. Conclusions The 6-item SpA-SED screening tool designed to identify potential cases of axSpA was found to have good test–retest reliability and high internal consistency.

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“…Furthermore, diagnostic delay has a significant impact on HRQoL, with studies reporting worse Ankylosing Spondyloarthritis QoL (ASQoL) questionnaire scores (indicating greater impairments to HRQoL) in people experiencing longer delays to diagnosis [24,25]. Findings from qualitative research emphasise this further, by highlighting that the meandering and frustrating diagnostic journeys women experience can contribute to substantial psychological distress and significant suffering which could be prevented with earlier diagnosis and appropriate intervention [26,27]. Aside from the impact on the individual, delayed diagnosis and treatment naturally come with wider, societal impact [23].…”

Section: Diagnostic Delay In Female Patients With Axspamentioning

confidence: 99%

The impact of gender and sex on diagnosis, treatment outcomes and health-related quality of life in patients with axial spondyloarthritis

Marzo‐Ortega

Navarro-Compán²,

Akar

et al. 2022

Clin Rheumatol

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Axial spondyloarthritis (axSpA) is a chronic inflammatory rheumatic condition, historically considered a predominantly male disease. However, increasing evidence suggests a more equal prevalence between men and women. Of the limited research conducted to date, it is apparent that gender differences exist in terms of time to diagnosis, treatment outcomes and health-related quality of life (HRQoL). Despite this, women are underrepresented in clinical trials and most studies do not stratify by gender to identify potential differences in terms of disease manifestations and treatment response. In this perspectives article, we reflect on the potential biological and social factors contributing to these differences and propose three key areas of education and research that should be prioritised in order to address the unmet needs of female patients with axSpA, namely: (1) to identify ways to increase awareness of disease occurrence in female patients among healthcare professionals (HCPs), (2) to improve understanding of gender differences in disease manifestation and outcomes, and (3) to conduct gender-stratified clinical trials with a representative sample of female patients.

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Personal Experiences with Diagnostic Delay Among Axial Spondyloarthritis Patients: A Qualitative Study

Cited by 11 publications

References 33 publications

VDR Polymorphic Variants Are Related to Improvements in CRP and Disease Activity in Patients with Axial Spondyloarthritis That Undergo Anti-TNF Treatment

VDR Polymorphic Variants Are Related to Improvements in CRP and Disease Activity in Patients with Axial Spondyloarthritis That Undergo Anti-TNF Treatment

Development and test–retest reliability of a screening tool for axial spondyloarthritis

The impact of gender and sex on diagnosis, treatment outcomes and health-related quality of life in patients with axial spondyloarthritis

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