An Innovative Online Qualitative Study to Explore the Symptom Experience of Patients with Primary Sjögren’s Syndrome

Gairy, Kerry; Ruark, Keith; Sinclair, Susan M.; Brandwood, Helen Jane; Nelsen, Linda

doi:10.1007/s40744-020-00220-9

Cited by 15 publications

(20 citation statements)

References 21 publications

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“…Another study found fatigue and pain to be the main predictors of poor QoL in patients with pSS regardless of disease activity, age, schooling, marital status, work disability and fibromyalgia (11). Though such complications are not life-threatening, the chronicity can lead to heavy debility and reduced quality of life, affecting not only daily activities and social life, but also career and finances (12).…”

Section: Introductionmentioning

confidence: 99%

Understanding Fatigue in Sjögren’s Syndrome: Outcome Measures, Biomarkers and Possible Interventions

et al. 2021

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Sjögren’s syndrome (SS) is an autoimmune disease affecting the salivary and lacrimal glands. Symptoms range from dryness to severe extra-glandular disease involving manifestations in the skin, lungs, nervous system, and kidney. Fatigue occurs in 70% of patients, characterizing primary SS (pSS) and significantly impacting the patient’s quality of life. There are some generic and specific instruments used to measure fatigue in SS. The mechanisms involved with fatigue in SS are still poorly understood, but it appears fatigue signaling pathways are more associated with cell protection and defense than with pro-inflammatory pathways. There are no established pharmacological treatment options for fatigue in pSS. So far, exercise and neuromodulation techniques have shown positive effects on fatigue in pSS. This study briefly reviews fatigue in pSS, with special attention to outcome measures, biomarkers, and possible treatment options.

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Section: Introductionmentioning

confidence: 99%

Understanding Fatigue in Sjögren’s Syndrome: Outcome Measures, Biomarkers and Possible Interventions

et al. 2021

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“…Furthermore, the online format may prevent participants from in-depth investment in their responses, potentially prompting more shallow-level answers than we were hoping for. Recent studies have reported sufficient quality for qualitative data collected online [ 79 , 80 ], and there is an increasing number of qualitative studies using online platforms [ 81 – 85 ]. In addition, participants responses in the current study all seemed sensible to the coder.…”

Section: Discussionmentioning

confidence: 99%

People’s naïve belief about curiosity and interest: A qualitative study

et al. 2021

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The purpose of this study was to critically examine how people perceive the definitions, differences and similarities of interest and curiosity, and address the subjective boundaries between interest and curiosity. We used a qualitative research approach given the research questions and the goal to develop an in-depth understanding of people’s meaning of interest and curiosity. We used data from a sample of 126 U.S. adults (48.5% male) recruited through Amazon’s Mechanical Turk (Mage = 40.7, SDage = 11.7). Semi-structured questions were used and thematic analysis was applied. The results showed two themes relating to differences between curiosity and interest; active/stable feelings and certainty/uncertainty. Curiosity was defined as an active feeling (more specifically a first, fleeting feeling) and a child-like emotion that often involves a strong urge to think actively and differently, whereas interest was described as stable and sustainable feeling, which is characterized as involved engagement and personal preferences (e.g., hobbies). In addition, participants related curiosity to uncertainty, e.g., trying new things and risk-taking behaviour. Certainty, on the other hand, was deemed as an important component in the definition of interest, which helps individuals acquire deep knowledge. Both curiosity and interest were reported to be innate and positive feelings that support motivation and knowledge-seeking during the learning process.

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“…This is supported by the low pre-index prevalence of malaise/fatigue and/or pain in patients with pSS. Despite being reported as the most bothersome symptom of pSS [ 20 , 21 ], only 1.2% of patients with pSS had a recorded diagnosis for malaise/fatigue in the pre-index period. However, the diagnosis code for malaise/fatigue had limited utility since further clinical data and laboratory data are not captured in the Swedish national patient register.…”

Section: Discussionmentioning

confidence: 99%

“…In addition to dryness, patients with pSS experience significantly more severe pain and fatigue than the general population, resulting in reduced physical functioning, emotional well-being, social functioning, and cognitive impairment [ 18 ]. Fatigue is cited by patients as the most severe symptom and the one they most wish they could change [ 20 , 21 ].…”

Section: Introductionmentioning

confidence: 99%

Primary Sjögren’s Syndrome: A Retrospective Cohort Study of Burden of Illness in Sweden

Westerlund¹,

Kejs²,

Beydogan

et al. 2021

Rheumatol Ther

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Introduction: Primary Sjögren's syndrome (pSS) is an autoimmune disease that affects salivary and lachrymal glands and is associated with complex extraglandular manifestations. This study investigates the clinical and economic burden and disease course of pSS in Sweden. Methods: This retrospective cohort study utilizes data from Swedish national registries and consists of patients at least 18 years of age diagnosed in secondary care with pSS, and matched members of the Swedish general population. Healthcare resource utilization (HRU) and costs were compared. The clinical burden of pSS during follow-up was explored via year-onyear prevalence of and time-to-first extraglandular manifestation. Employment status and retirement rates were used to investigate the impact of pSS on productivity. Results: A total of 8884 patients with pSS and 88,233 general population comparators were included. Patients with pSS had significantly higher rates of HRU and higher healthcare costs than matched comparators, including twice as many outpatient visits. Costs were highest in year 1 post index before reducing in years 2 and 3 and stabilizing thereafter. Almost two-thirds of patients received their index diagnosis during an outpatient visit, and \ 30% of diagnoses were from rheumatology departments. Overall, 41% of patients experienced a healthcare encounter that included a relevant extraglandular manifestation code during follow-up. Patients with pSS had significantly higher odds of early retirement than the general population at 5 years post index. Conclusions: Patients with pSS experience a high clinical and economic disease burden in Sweden.

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An Innovative Online Qualitative Study to Explore the Symptom Experience of Patients with Primary Sjögren’s Syndrome

Abstract: Introduction: Primary Sjögren's syndrome (pSS) is a complex, heterogenous autoimmune disease; no immunomodulatory drug has demonstrated efficacy, and no current treatments target the underlying cause. This study aimed to explore the disease and treatment experiences of patients with pSS.

Cited by 15 publications

References 21 publications

Understanding Fatigue in Sjögren’s Syndrome: Outcome Measures, Biomarkers and Possible Interventions

Understanding Fatigue in Sjögren’s Syndrome: Outcome Measures, Biomarkers and Possible Interventions

People’s naïve belief about curiosity and interest: A qualitative study

Primary Sjögren’s Syndrome: A Retrospective Cohort Study of Burden of Illness in Sweden

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