It’s more than dryness and fatigue: The patient perspective on health-related quality of life in Primary Sjögren’s Syndrome - A qualitative study

Lackner, Angelika; Ficjan, Anja; Stradner, Martin; Hermann, Josef; Unger, Julia; Stamm, Tanja; Stummvoll, Georg; Dür, Mona; Graninger, Winfried; Dejaco, Christian

doi:10.1371/journal.pone.0172056

Cited by 51 publications

(56 citation statements)

References 32 publications

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“…Hence, it is important to strengthen the assessment of the swallowing function of the pSS patient. Educational programs might help an early identification of the disease and lessen the emotional burden of patients during the initial course of disease [ 41 ]. In addition, lacking of knowledge about pSS may lead to anxiety/depression, so patient education about pSS may relieve anxiety and depression.…”

Section: Discussionmentioning

confidence: 99%

Anxiety and depression in primary Sjögren’s syndrome: a cross-sectional study

Cui

Xia

et al. 2018

BMC Psychiatry

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BackgroundPrevalence of anxiety and depression is high in people with Primary Sjögren’s syndrome (pSS). However, there are currently no known reported studies about anxiety/depression in pSS patients from China. Our aim was to compare anxiety/depression in pSS patients and healthy controls; to investigate the prevalence of anxiety and/or depression among pSS patients in China; to evaluate its relationship with the disease activity, fatigue, pain, education, ocular surface disease, oral health, swallowing disorders, employment status, European League Against Rheumatism Sjögren’s Syndrome Patient Reported Index(ESSPRI) as well as to analyze potential determinants of anxiety and depression.MethodsIn this study, 160 pSS patients and 170 age- and sex- matched healthy controls were included. Participants completed self-administered questionnaires, Hospital Anxiety and Depression Scale (HADS) and so on. Independent samples t-tests, χ2 analyses and multivariable stepwise logistic regression modeling were used to analyze the data.ResultsWe found 33.8% pSS patients were anxiety, and 36.9% had depression, which were significantly higher than controls. And there were significant correlations among education, employment status, disease activity, fatigue, ocular surface disease, ESSPRI, oral health, swallowing disorders and anxiety/depression. Meanwhile, logistic regression analysis revealed that oral health and swallowing disorders were significantly associated with anxiety in pSS patients; as well as fatigue was significantly associated with depression.ConclusionsThe prevalence of depression and anxiety was high in adult pSS patients. Interestingly, oral health and swallowing disorders were the most important predictors of anxiety in pSS patients. Therefore, rheumatologists should pay attention to the potential mental comorbidities while managing patients with pSS and provide the basis for mental health providers in order to identify effective strategies for preventing and treating depression and anxiety among adult pSS patients. Simultaneously, rheumatologists should also focus on the oral health and swallowing disorders in pSS patients.

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Section: Discussionmentioning

confidence: 99%

Anxiety and depression in primary Sjögren’s syndrome: a cross-sectional study

Cui

Xia

et al. 2018

BMC Psychiatry

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“…To our knowledge, only 1 published study has explored patients’ viewpoints on determinants they consider to interfere with their performance of daily activities and quality of life . In this qualitative focus group study, the authors found 3 broad domains containing 86 concepts.…”

Section: Discussionmentioning

confidence: 99%

“…These domains were the physical dimension, psychological and emotional challenges, and social life and daily living. The most commonly reported factors were from the physical domain, and specific factors within this domain included pain, dryness, shortness of breath and constipation . However, only a small number of patients were involved (n = 20), consequently, additional concepts may have been missed.…”

Section: Discussionmentioning

confidence: 99%

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Mixed‐Methods Study Identifying Key Intervention Targets to Improve Participation in Daily Living Activities in Primary Sjögren's Syndrome Patients

Hackett

Deane

Newton

et al. 2018

Arthritis Care & Research

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ObjectiveFunctional ability and participation in life situations are compromised in many primary Sjögren's syndrome (SS) patients. This study aimed to identify the key barriers and priorities to participation in daily living activities, in order to develop potential future interventions.MethodsGroup concept mapping, a semiquantitative, mixed‐methods approach was used to identify and structure ideas from UK primary SS patients, adult household members living with a primary SS patient, and health care professionals. Brainstorming generated ideas, which were summarized into a final set of statements. Participants individually arranged these statements into themes and rated each statement for importance. Multidimensional scaling and hierarchical cluster analysis were applied to sorted and rated data to produce visual representations of the ideas (concept maps), enabling identification of agreed priority areas for interventions.ResultsA total of 121 patients, 43 adult household members, and 67 health care professionals took part. In sum, 463 ideas were distilled down to 94 statements. These statements were grouped into 7 clusters: Patient Empowerment, Symptoms, Wellbeing, Access and Coordination of Health Care, Knowledge and Support, Public Awareness and Support, and Friends and Family. Patient Empowerment and Symptoms were rated as priority conceptual themes. Important statements within priority clusters indicate patients should be taken seriously and supported to self‐manage symptoms of oral and ocular dryness, fatigue, pain, and poor sleep.ConclusionOur data highlighted the fact that in addition to managing primary SS symptoms, interventions aiming to improve patient empowerment, general wellbeing, access to health care, patient education, and social support are important to facilitate improved participation in daily living activities.

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“…Another group found that discomfort during the evening would often result in a disturbed night’s sleep ( Goodchild et al., 2010 ). Another recent qualitative study found that discomfort associated with oral dryness could result in disturbed sleep ( Lackner et al., 2017 ) in PSS patients.…”

Section: Introductionmentioning

confidence: 99%

Experience of sleep disruption in primary Sjögren’s syndrome: A focus group study

Hackett

Deary

Deane

et al. 2018

British Journal of Occupational Therapy

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IntroductionPrimary Sjögren’s syndrome is the third most common systemic autoimmune rheumatic disease, following rheumatoid arthritis and systemic lupus erythematosus, and results in dryness, fatigue, discomfort and sleep disturbances. Sleep is relatively unexplored in primary Sjögren’s syndrome. We investigated the experiences of sleep disturbances from the viewpoint of primary Sjögren’s syndrome patients and their partners and explored the acceptability of cognitive behavioural therapy for insomnia.MethodWe used focus groups to collect qualitative data from 10 patients with primary Sjögren’s syndrome and three partners of patients. The data were recorded, transcribed verbatim and analysed using thematic analysis.ResultsFive themes emerged from the data: (a) Experience of sleep disturbances; (b) variation and inconsistency in sleep disturbances; (c) the domino effect of primary Sjögren’s syndrome symptoms; (d) strategies to manage sleep; (e) acceptability of evidence-based techniques. Sleep disturbances were problematic for all patients, but specific disturbances varied between participants. These included prolonged sleep onset time and frequent night awakenings and were aggravated by pain and discomfort. Patients deployed a range of strategies to try and self-manage. Cognitive behavioural therapy for insomnia was seen as an acceptable intervention, as long as a rationale for its use is given and it is tailored for primary Sjögren’s syndrome.ConclusionPrimary Sjögren’s syndrome patients described a range of sleep disturbances. Applying tailored, evidence-based sleep therapy interventions may improve sleep, severity of other primary Sjögren’s syndrome symptoms and functional ability.

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It’s more than dryness and fatigue: The patient perspective on health-related quality of life in Primary Sjögren’s Syndrome - A qualitative study

Cited by 51 publications

References 32 publications

Anxiety and depression in primary Sjögren’s syndrome: a cross-sectional study

Anxiety and depression in primary Sjögren’s syndrome: a cross-sectional study

Mixed‐Methods Study Identifying Key Intervention Targets to Improve Participation in Daily Living Activities in Primary Sjögren's Syndrome Patients

Experience of sleep disruption in primary Sjögren’s syndrome: A focus group study

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