Personal Experiences with Diagnostic Delay Among Axial Spondyloarthritis Patients: A Qualitative Study.
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ABSTRACT: Introduction
On average, patients with axial spondyloarthritis (axSpA) suffer from symptoms up to 13 or more years before diagnosis, contributing to psychological distress and healthcare burden METHODS: We conducted six semi-structured focus groups with 26 axSpA patients (from 3 rheumatology practices located in the states of Massachusetts, Colorado, and Pensylvania, USA) exploring early disease and diagnostic experiences. Verbatim transcripts were coded using a start list with emerging thematic codes added. A qualitative thematic analysis was performed RESULTS: Many participants described meandering and frustrating diagnostic journeys. Participants reported that intermittent axSpA symptoms and idiopathic pain contributed to physician confusion and delay in patients seeking care. Participants were sometimes perceived as somaticizing, drug-seeking, or "crazy." Diagnostic delay led to frustration and mental suffering. Doctors "giving up" was considered profoundly negative. Stories of symptoms fell into five areas: (1) pain; (2) stiffness; (3) impact on sleep; (4) impact on daily activities; and (5) changes with weather. Self-advocacy and family advocacy were considered essential. Participants suggested wider use of HLA-B27 testing and development of a definitive diagnostic test CONCLUSION: Most participants described significant suffering prior to axSpA diagnosis which could have been avoided with earlier intervention. Further research on the early disease experiences of axSpA patients is needed.
SUBMITTER: Dube CE
PROVIDER: S-EPMC8217406 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Identification of axial spondyloarthritis (axSpA) remains challenging, frequently resulting in a diagnostic delay for patients. Current benchmarks of delay are usually reported as mean data, which are typically skewed and therefore may be overestimating delay. Our aim was to determine the extent of median delay patients' experience in receiving a diagnosis of axSpA and examine whether specific factors are associated with the presence of such delay. We conducted a systematic review across five literature databases (from inception to November 2021), with studies reporting the average time period of diagnostic delay in patients with axSpA being included. Any additional information examining associations between specific factors and delay were also extracted. A narrative synthesis was used to report the median range of diagnostic delay experienced by patients with axSpA and summarise which factors have a role in the delay. From an initial 11,995 articles, 69 reported an average time period of diagnostic delay, with 25 of these providing a median delay from symptom onset to diagnosis. Across these studies, delay ranged from 0.67 to 8 years, with over three-quarters reporting a median of between 2 years and 6 years. A third of all studies reported median delay data ranging from just 2 to 2.3 years. Of seven variables reported with sufficient frequency to evaluate, only 'gender' and 'family history of axSpA' had sufficient concordant data to draw any conclusion on their role, neither influenced the extent of the delay. Despite improvements in recent decades, patients with axSpA frequently experience years of diagnostic delay and this remains an extensive worldwide problem. This is further compounded by a mixed picture of the disease, patient and healthcare-related factors influencing delay. Key points • Despite improvements in recent decades, patients with axSpA frequently experience years of diagnostic delay. • Median diagnostic delay typically ranges from 2 to 6 years globally. • Neither 'gender' nor 'family history of axSpA' influenced the extent of diagnostic delay experienced. • Diagnostic delay based on mean, rather than median, data influences the interpretation of the delay time period and consistently reports a longer delay period.
| S-EPMC9187558 | biostudies-literature
Project description:OBJECTIVE:Axial spondyloarthritis is a long-term rheumatic condition. The symptoms, including pain, can impact on the daily life routines and psychological well-being of individuals that are diagnosed with axial spondyloarthritis (axSpA). Partners are often a main source of support for individuals who manage a long-term condition and they can also be affected by the illness experience, often themselves reporting elevated levels of emotional distress. Few qualitative studies have explored the impact of axSpA on partner relationships. This study addresses the social context of axSpA by investigating the experiences for both individuals with axSpA and their partners. DESIGN:Semistructured individual telephone interviews analysed using thematic analysis at a dyadic partner level. SETTING:Participants were recruited from the social media pages of a UK-based axSpA-specific charity. PARTICIPANTS:Nine heterosexual partner dyads (23-65 years), who were currently cohabiting, comprising nine individuals diagnosed with axSpA (n=6 females) and nine partners (n=3 females). RESULTS:Three themes 'Perceived relational closeness', 'Playing third wheel to axSpA' and 'Tensions surrounding a carer-type role' were identified. The findings illustrate how living with axSpA can influence closeness between partners and dominate daily decisions, particularly surrounding leisure activities. Partners commonly adopted a carer-type role, despite many individuals with axSpA expressing desire for a greater sense of autonomy. CONCLUSIONS:This study provides an important insight into the lived experiences of both individuals with axSpA and their partners. Findings highlight the social context of managing a long-term condition and suggest the need for including partners within consultations, and the need for support provision for partners.
| S-EPMC6615774 | biostudies-literature
Project description:BackgroundMany patients with axial spondylarthritis (axSpA) experience lengthy diagnostic delays upwards of 14 years. (5-14 years). Screening tools for axSpA have been proposed for use in primary care settings, but whether this approach could be implemented into busy primary care settings remains unknown.ObjectiveTo solicit feedback from primary care physicians regarding questions from the Inflammatory Back Pain Assessment: the Assessment of Spondyloarthritis International Society (ASAS) Expert Criteria and gain insight about barriers and facilitators for implementing axSpA screening in primary care.MethodsGuided by Consolidated Criteria for reporting Qualitative Research (COREQ-criteria), we recorded, transcribed, and analyzed in-depth interviews with eight family medicine physicians and ten internists (purposeful sampling) using immersion/crystallization techniques.ResultsFew physicians reported awareness of existing classification criteria for axSpA, and many reported a lack of confidence in their ability to distinguish between inflammatory and mechanical back pain. From three domains, 10 subthemes emerged: 1) typical work-up of axSpA patients in primary care, with subthemes including the clues involved in work-up and role of clinical examinations for axSpA; 2) feedback on questions from the Inflammatory Back Pain Assessment: ASAS Expert Criteria, with subthemes to evaluate contents/questions of a potential screening tool for axSpA; and 3) implementation of the screening tool in primary care settings, with subthemes of perceived barriers including awareness, time, other conditions to screen, rare disease, and lack of structured questionnaire for back pain and perceived facilitators including workflow issues and awareness.ConclusionsPrimary care physicians believed that an improved screening instrument and a strong evidence-base to support the need for screening for axSpA are required. The implementation of axSpA screening into a busy primary care practice requires integration into the practice workflow, with use of technology suggested as a possible way to improve efficiency.
| S-EPMC8143395 | biostudies-literature
Project description:ObjectivePatients referred to rheumatologists are currently facing months of inefficient waiting time due to the increasing demand and rising workforce shortage. We piloted a pre-assessment of patients with suspected axial spondyloarthritis (axSpA) combining student-led clinics and telemedicine (symptom assessment, symptom monitoring and at-home capillary self-sampling) to improve access to rheumatology care. The aim of this study was to explore (1) current challenges accessing axSpA care and (2) patients' first-hand experiences.MethodsEmbedded within a clinical trial, this study was based on qualitative interviews with patients with suspected axSpA (n = 20). Data was analysed via qualitative content analysis.ResultsStudent-led clinics were perceived as high-quality care, comparable to conventional rheumatologist-led visits. Patients expressed that their interactions with the students instilled a sense of trust. History-taking and examinations were perceived as comprehensive and meticulous. Telehealth tools were seen as empowering, offering immediate and continuous access to symptom assessment at home. Patients reported a lack of specificity of the electronic questionnaires, impeding accurate responses. Patients requested a comments area to supplement questionnaire responses. Some patients reported receiving help to complete the blood collection.ConclusionPatients' access to rheumatology care is becoming increasingly burdensome. Pre-assessment including student-led clinics and telemedicine was highly accepted by patients. Patient interviews provided valuable in-depth feedback to improve the piloted patient pathway.
| S-EPMC10914903 | biostudies-literature
Project description:Tandem mass spectrometry analysis of proteins from depleted plasma from radiographic axial spondyloarthritis patients pre- and post-treated with adalimumab.
2024-05-02 | PXD026189 | Pride
Project description:Diagnostic delay (DD) is associated with poor radiological and quality of life outcomes in axial spondyloarthritis (ax-SpA) and ankylosing spondylitis (AS). The female (F) population is often misdiagnosed, as classification criteria were previously studied mostly in males (M). We conducted a systematic review to investigate (i) the difference in DD between the sexes, the impact of HLA*B27 and clinical and social factors (work and education) on this gap, and (ii) the possible influence of the year of publication (before and after the 2009 ASAS classification criteria), geographical region (Europe and Israel vs. extra-European countries), sample sources (mono-center vs. multi-center studies), and world bank (WB) economic class on DD in both sexes. We searched, in PubMed and Embase, studies that reported the mean or median DD or the statistical difference in DD between sexes, adding a manual search. Starting from 399 publications, we selected 26 studies (17 from PubMed and Embase, 9 from manual search) that were successively evaluated with the modified Newcastle-Ottawa Scale (m-NOS). The mean DD of 16 high-quality (m-NOS > 4/8) studies, pooled with random-effects meta-analysis, produces results higher in F (1.48, 95% CI 0.83-2.14, p < 0.0001) but with significant results at the second analysis only in articles published before the 2009 ASAS classification criteria (0.95, 95% CI 0.05-1.85, p < 0.0001) and in extra-European countries (3.16, 95% CI 2.11-4.22, p < 0.05). With limited evidence, some studies suggest that DD in F might be positively influenced by HLA*B27 positivity, peripheral involvement, and social factors.
| S-EPMC10817445 | biostudies-literature
Project description:Life-long exercise is essential in axial spondyloarthritis (axSpA) management; however, long-term adherence is challenging. Online exercise programmes are an alternative to face-to-face physiotherapy. (1) To measure adherence to a 12-month, individualised, online physiotherapy programme for people with axSpA, and investigate the effects on disease activity, spinal mobility, work ability, quality of life and function. (2) To investigate associations between programme adherence and outcomes. (3) To explore participants' views of the programme and factors affecting adherence. Participants were 'non-exercisers' recruited from rheumatology outpatient services. Adherence was measured using online diary entries. Outcomes included the BATH indices, health status (EQ5D), Ankylosing Spondylitis Quality of Life (ASQOL), exercise capacity (6MWT), Work, Productivity and Activity Impairment in AS (WPAI), Exercise Attitude Questionnaire (EAQ) and Exercise Motivations Inventory-2 (EMI-2) at baseline, 6 and 12 months. Interviews determined views on the intervention and factors affecting adherence. Fifty participants were recruited. Over the 52-week intervention, adherence (five times/week) ranged from 19% (± 30%) to 44% (± 35%). Significant improvements were found in disease activity (BASDAI), spinal mobility (BASMI), 6MWT, AsQoL and EQ5D-VAS at 6 and 12 months. There were no associations between adherence and baseline variables or demographics. Interviews suggested support from others, routine, and feeling the benefit positively affected adherence. Conversely, lack of motivation, life events and symptoms negatively affected adherence. A 12-month online physiotherapy programme significantly improved symptoms in people with axSpA who were not regular exercisers. Adherence reduced over the intervention period. Online exercise programmes may benefit people with axSpA; however, strategies to improve adherence are required.
| S-EPMC10766789 | biostudies-literature
Project description:We aimed to develop evidence-based recommendations for treating axial spondylarthritis (axSpA) in Korea. The development committee was constructed, key clinical questions were determined, and the evidence was searched through online databases including MEDLINE, Embase, Cochrane, KoreaMed, and Kmbase. Systematic literature reviews were conducted, quality of evidence was determined, and draft recommendations were formulated according to the Grading of Recommendations Assessment, Development, and Evaluations methodology. Recommendations that reached 80% consensus among a voting panel were finalized. Three principles and 21 recommendations were determined. Recommendations 1 and 2 pertain to treatment strategies, regular disease status assessment, and rheumatologist-steered multidisciplinary management. Recommendations 3 and 4 strongly recommend patient education, exercise, and smoking cessation. Recommendations 5-12 address pharmacological treatment of active disease using nonsteroidal anti-inflammatory drugs, glucocorticoids, sulfasalazine, biologics, and Janus kinase inhibitors. Recommendations 13-16 address treatment in stable disease. We suggest against spa and acupuncture as therapies (Recommendation 17). Recommendations 18 and 19 pertain to total hip arthroplasty and spinal surgery. Monitoring of comorbidities and drug toxicities are recommended (Recommendations 20 and 21). Recommendations for axSpA treatment in a Korean context were developed based on comprehensive clinical questions and evidence. These are intended to guide best practice in the treatment of axSpA.
| S-EPMC10493447 | biostudies-literature
Project description:We aimed to develop evidence-based recommendations for treating axial spondylarthritis (axSpA) in Korea. The development committee was constructed, key clinical questions were determined, and the evidence was searched through online databases including MEDLINE, Embase, Cochrane, KoreaMed, and KMbase. Systematic literature reviews were conducted, quality of evidence was determined, and draft recommendations were formulated according to the Grading of Recommendations Assessment, Development, and Evaluations methodology. Recommendations that reached 80% consensus among a voting panel were finalized. Three principles and 21 recommendations were determined. Recommendations 1 and 2 pertain to treatment strategies, regular disease status assessment, and rheumatologist-steered multidisciplinary management. Recommendations 3 and 4 strongly recommend patient education, exercise, and smoking cessation. Recommendations 5~12 address pharmacological treatment of active disease using nonsteroidal anti-inflammatory drugs, glucocorticoids, sulfasalazine, biologics, and Janus kinase inhibitors. Recommendations 13~16 address treatment in stable disease. We suggest against spa and acupuncture as therapies (Recommendation 17). Recommendations 18 and 19 pertain to total hip arthroplasty and spinal surgery. Monitoring of comorbidities and drug toxicities are recommended (Recommendations 20 and 21). Recommendations for axSpA treatment in a Korean context were developed based on comprehensive clinical questions and evidence. These are intended to guide best practice in the treatment of axSpA.
| S-EPMC10351367 | biostudies-literature
Project description:ObjectiveTo investigate the prevalence of overweight and obesity, as well as the association between body mass index (BMI) and disease activity in patients with axial spondyloarthritis (axSpA).MethodsNorwegian axSpA patients from the European Map of Axial Spondyloarthritis (EMAS) survey were included in this analysis. Sociodemographic, anthropomorphic, and disease-related variables (HLA-B27, comorbidities, BASDAI, and self-reported spinal stiffness) were reported. Patients were categorized into under/normal weight (BMI < 25 kg/m2), overweight (BMI ≥ 25 to < 30 kg/m2), and obese (≥ 30 kg/m2).ResultsOf the 509 participants in the EMAS survey, 35% were categorized as under/normal weight, 39% overweight, and 26% obese. Compared to under/normal-weight patients, overweight patients had significantly higher degree of spinal stiffness (mean (SD) 7.91 ± 2.02 vs 7.48 (2.15) and number of comorbidities (2.45 ± 2.11, vs 1.94), both p < 0.001. Obese patients had significantly higher disease activity (BASDAI mean (SD) 5.87 ± 1.78 vs 4.99 ± 2.08, p < 0.001), degree of spinal stiffness (8.18 ± 2.03 vs 7.48 ± 2.15, p = 0.006), and number of comorbidities (3.43 ± 2.43 vs 1.94. ± .38, p < 0.001) than under/normal weight patients. After adjusting for gender and age, obesity proved to be independently associated with disease activity.ConclusionObesity was associated with higher reported BASDAI score, and being overweight or obese was associated with a higher degree of spinal stiffness and number of comorbidities compared to under/normal weight respondents. The results highlight the serious impact of obesity on health status, and obesity should therefore be considered as a modifiable risk factor for disease activity within the disease management of axSpA.
| S-EPMC7311492 | biostudies-literature