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: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: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: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
Project description:Axial spondyloarthritis (AxSpA) is an inflammatory spondyloarthritis (SpA) that has significant impact on a patient's life. Symptoms, including fatigue, sleep problems, depression, and sexual dysfunction, can profoundly impact health-related quality of life (HRQoL) and limit work, leisure, and daily activities. Available therapies effectively manage pain and inflammation in early-stage disease, but patients often continue to experience impaired HRQoL. Thus, there remains a need for new therapies with novel mechanisms that can stop disease progression, potentially reverse damage caused by AxSpA and improve HRQoL in patients with AxSpA. Newer biologic agents, such as those targeting the interleukin 17-interleukin 23 axis, have promising efficacy and may improve HRQoL for patients with AxSpA. The AxSpA has many negative effects on HRQoL. By targeting disease pathways responsible for the development of AxSpA, approved and emerging therapies potentially reduce disease activity and improve the functional status of patients with AxSpA. This narrative review reflects on the findings of studies evaluating HRQoL of individuals with AxSpA and the role of newer therapies.
| S-EPMC5617559 | biostudies-other
Project description:PURPOSE:The ankylosing spondylitis quality of life (ASQoL) instrument is widely used to assess health-related quality of life in patients with ankylosing spondylitis (AS). We assessed the relevance of the ASQoL items in patients with non-radiographic axial spondyloarthritis (nr-axSpA), a distinct subgroup within the axSpA disease spectrum. METHODS:This observational, cross-sectional, qualitative interview study recruited patients from clinic settings. Interviews from patients with axSpA who participated in a prior qualitative study were also used. Patients initially underwent a concept elicitation interview using open-ended questions to evaluate relevance of the concepts measured by the ASQoL. They then completed the ASQoL and underwent a cognitive interview to assess their understanding of the items, instructions and response options. Transcripts from patients who participated in the previous qualitative study (who did not complete the ASQoL or undergo cognitive interview) were evaluated to identify expressions of the concepts in the ASQoL. RESULTS:A total of 18 patients with nr-axSpA participated. The concept elicitation interview findings supported the relevance of the ASQoL items. Cognitive interviews determined that the ASQoL was easily understood; the 13 new patients chose a response for each item that matched their experience with nr-axSpA. Transcripts for the five previously interviewed patients confirmed the concepts presented in the ASQoL items were relevant and important to their experience of living with nr-axSpA. CONCLUSIONS:Our results represent an important first step in confirming the relevance of the concepts in the ASQoL to patients with nr-axSpA, supporting quantitative assessment of ASQoL validity in this population.
| S-EPMC7591417 | biostudies-literature
Project description:BackgroundPeople living with axial Spondyloarthrtis (axSpA) have an increased risk of cardiovascular diseases, which can be reduced by regular physical activity (PA) and its subset of cardiorespiratory training (CRT). To fulfil their crucial role in PA promotion, physiotherapists and other health professionals need to understand the beliefs that people living with axSpA possess concerning general PA and CRT. The aim of this study is to explore these behavioural, normative and control beliefs.MethodsA qualitative descriptive design approach was chosen. Five semi-structured focus group interviews with 24 individuals living with axSpA were performed. Data was analysed using structured thematic qualitative content analysis.ResultsPeople with axSpA possessed multifaceted behavioural, normative and control beliefs concerning general PA and CRT. Behavioural beliefs revealed a positive attitude towards general PA, with participants mentioning numerous physical, psychological, and social benefits and only few risks. However, the conceptual difference between general PA and CRT, and the relevance of CRT, was unclear to some participants. Normative beliefs were expressed as the beliefs of significant others that influenced their motivation to comply with such beliefs, e.g. spouses, other people living with axSpA, rheumatologists. Regarding control beliefs, general PA and CRT were both mentioned as effective self-management strategies to control the disease. From experience, a high level of self-discipline, as well as technology, were shown to be useful.ConclusionsGeneral PA is understood to be an important self-management strategy for people with axSpA and most participants build general PA into their daily routines. They believe that general PA beneficially impacts personal health and wellbeing. However, some participants are unaware of the difference between general PA and CRT and the important impact that this difference could have on their health. The consequences of CRT promotion for people living with axSpA should be the subject of further research.
| S-EPMC9310396 | biostudies-literature
Project description:Experiencing the death of a close person, especially in emerging adults and students, can have profound effects on the bereaved individual's life. As most research in this field has focused on negative effects of a loss, little is known about potential positive effects experienced by bereaved university students. This study investigated the experience of grief and personal growth in a sample of students from The University of Melbourne, Australia. Semi-structured interviews via Zoom/telephone with bereaved students (n = 14), who were invited to reflect on their loss and any personal growth potentially experienced. Thematic analysis of the data was based on a deductive and inductive approach. The analysis identified four themes: (i) sharing of grief as a coping mechanism, (ii) balance between grief reactions and moving forward in life, (iii) lessons learned and personal growth, and (iv) adopting values from the deceased person and continuing bonds. Participants emphasized personal growth regarding self-perception and philosophical views on life. Following the loss, they preferred peer support, and used formal services only when they had a specific need. The findings indicate the importance of social support for bereaved students, and the complimentary role of peer and professional support. Hence, academic institutions should offer supportive services tailored to both students and professionals to help bereaved students.
| S-EPMC7920249 | biostudies-literature
Project description:Current studies concentrate on the cytokine network and its role in the pathogenesis of spondyloarthritis (SpA). In this study, we analyzed whether the serum cytokine profile (interleukins: IL-10, IL-11, IL-12, IL-15, IL-17, IL-23 and IL-33) correlates with demographic data, clinical manifestations, disease activity and treatment outcome in a group of patients with axial spondyloarthritis.Forty-nine patients with an established diagnosis of axial spondyloarthritis (aSpA) and 19 healthy volunteers as controls were enrolled in the study. Clinical evaluation included patient's medical history, 44 joint count, back pain intensity and global disease activity in the preceding week (VAS), the duration of morning stiffness and blood tests. Disease activity was assessed using BASDAI and ASDAS-CRP. Serum concentration of IL-10, IL-11, IL-12, IL-15, IL-17, IL-23 and IL-33 was determined.In patients with aSpA, elevated serum concentration of IL-10, IL-15, IL-17 and IL-23 was detected. In the aSpA group we detected higher values of serum concentration of IL-23 and IL-33 in the subgroup with anterior uveitis (83.1 ±184.0 pg/ml vs. 14.0 ±17.1 pg/ml, p < 0.0001 and 45.5 ±71.9 pg/ml vs. 18.4 ±14.3 pg/ml, p < 0.0001, respectively). Additionally, in the subgroup with peripheral arthritis, elevation of serum concentration of IL-12 (249.3 ±246.9 pg/ml vs. 99.9 ±105.9 pg/ml, p = 0.0001) was detected. Patients with preradiological SpA had higher serum concentration of IL-17 than patients with established diagnosis of AS (6.37 ±8.50 pg/ml vs. 2.04 ±2.98 pg/ml, p = 0.0295). No differences in serum concentration of analyzed cytokines were found between the subgroup with low to moderate disease activity and the subgroup with high to very high disease activity.We report that in aSpA patients, compared to controls, elevated serum concentrations of IL-10, IL-15, IL-17 and IL-23 were observed. Some cytokines may predispose to a more severe course of aSpA.
| S-EPMC4847310 | biostudies-literature
Project description:ObjectiveNonadherence to disease-modifying antirheumatic drugs (DMARDS) in rheumatoid arthritis (RA) and spondyloarthritis (SpA) results in increased disease activity and symptoms and poorer quality of life. We aimed to describe patients' attitudes and experiences of DMARDs in RA and SpA to inform strategies to improve medication adherence.MethodsDatabases (MEDLINE, Embase, PsycINFO, and CINAHL) were searched to January 2016. Thematic synthesis was used to analyze the findings.ResultsFrom 56 studies involving 1,383 adult patients (RA [n = 1,149], SpA [n = 191], not specified [n = 43]), we identified 6 themes (with subthemes): intensifying disease identity (severity of sudden pharmacotherapy, signifying deteriorating health, daunting lifelong therapy), distressing uncertainties and consequences (poisoning the body, doubting efficacy, conflicting and confusing advice, prognostic uncertainty with changing treatment regimens), powerful social influences (swayed by others' experiences, partnering with physicians, maintaining roles, confidence in comprehensive and ongoing care, valuing peer support), privilege and right of access to biologic agents (expensive medications must be better, right to receive a biologic agent, fearing dispossession), maintaining control (complete ownership of decision, taking extreme risks, minimizing lifestyle intrusion), and negotiating treatment expectations (miraculous recovery, mediocre benefit, reaching the end of the line).ConclusionPatients perceive DMARDs as strong medications with alarming side effects that intensify their disease identity. Trust and confidence in medical care, positive experiences with DMARDS among other patients, and an expectation that medications will help maintain participation in life can motivate patients to use DMARDs. Creating a supportive environment for patients to voice their concerns may improve treatment satisfaction, adherence, and health outcomes.
| S-EPMC5901029 | biostudies-literature