British Society for Rheumatology guideline on management of adult and juvenile onset Sjögren disease.

Sjögren disease (SD) is a chronic, autoimmune disease of unknown aetiology with significant impact on quality of life. Although dryness (sicca) of the eyes and mouth are the classically described features, dryness of other mucosal surfaces and systemic manifestations are common. The key management aim should be to empower the individual to manage their condition-conserving, replacing and stimulating secretions; and preventing damage and suppressing systemic disease activity. This guideline builds on and widens the recommendations developed for the first guideline published in 2017. We have included advice on the management of children and adolescents where appropriate to provide a comprehensive guideline for UK-based rheumatology teams.

A Smartphone App to Support Self-Management for People Living With Sjögren's Syndrome: Qualitative Co-Design Workshops.

BACKGROUND: Sjögren's syndrome (SS) is the second most common autoimmune rheumatic disease, and the range of symptoms includes fatigue, dryness, sleep disturbances, and pain. Smartphone apps may help deliver a variety of cognitive and behavioral techniques to support self-management in SS. However, app-based interventions must be carefully designed to promote engagement and motivate behavior change. OBJECTIVE: We aimed to explore self-management approaches and challenges experienced by people living with SS and produce a corresponding set of design recommendations that inform the design of an engaging, motivating, and evidence-based self-management app for those living with SS. METHODS: We conducted a series of 8 co-design workshops and an additional 3 interviews with participants who were unable to attend a workshop. These were audio recorded, transcribed, and initially thematically analyzed using an inductive approach. Then, the themes were mapped to the Self-Determination Theory domains of competency, autonomy, and relatedness. RESULTS: Participants experienced a considerable demand in the daily work required in self-managing their SS. The condition demanded unrelenting, fluctuating, and unpredictable mental, physical, and social efforts. Participants used a wide variety of techniques to self-manage their symptoms; however, their sense of competency was undermined by the complexity and interconnected nature of their symptoms and affected by interactions with others. The daily contexts in which this labor was occurring revealed ample opportunities to use digital health aids. The lived experience of participants showed that the constructs of competency, autonomy, and relatedness existed in a complex equilibrium with each other. Sometimes, they were disrupted by tensions, whereas on other occasions, they worked together harmoniously. CONCLUSIONS: An SS self-management app needs to recognize the complexity and overlap of symptoms and the complexities of managing the condition in daily life. Identifying techniques that target several symptoms simultaneously may prevent users from becoming overwhelmed. Including techniques that support assertiveness and communication with others about the condition, its symptoms, and users' limitations may support users in their interactions with others and improve engagement in symptom management strategies. For digital health aids (such as self-management apps) to provide meaningful support, they should be designed according to human needs such as competence, autonomy, and relatedness. However, the complexities among the 3 Self-Determination Theory constructs should be carefully considered, as they present both design difficulties and opportunities.

Self-regulation of effort for a better health-related quality of life: a multidimensional activity pacing model for chronic pain and fatigue management.

PURPOSE: To propose a comprehensive multidimensional model of activity pacing that improves health-related quality of life and promotes sustained physical activity engagement among adults with chronic conditions. MATERIALS AND METHODS: A narrative review was conducted to examine the existing literature on activity pacing, health-related quality of life, pain and fatigue management, and physical activity promotion in chronic conditions. RESULTS: The literature revealed a lack of a cohesive approach towards a multidimensional model for using activity pacing to improve health-related quality of life. A comprehensive multidimensional model of activity pacing was proposed, emphasizing the importance of considering all aspects of pacing for sustained physical activity engagement and improved health-related quality of life. The model incorporates elements such as rest breaks, self-regulatory skills, environmental factors, and effective coping strategies for depression/anxiety. It takes into account physical, psychological, and environmental factors, all of which contribute significantly to the enhancement of health-related quality of life, physical function, and overall well-being, reflecting a holistic approach. CONCLUSIONS: The model offers guidance to researchers and clinicians in effectively educating patients on activity pacing acquisition and in developing effective interventions to enhance physical activity engagement and health outcomes among adults with chronic conditions. Additionally, it serves as a tool towards facilitating discussions on sustained physical activity and a healthy lifestyle for patients, which can eventually lead to improved quality of life.

A qualitative exploration of internet forum discussions surrounding female sexual function for individuals with Sjögren's syndrome.

Sexual dysfunction is a common experience for women with the autoimmune rheumatic disease, Sjögren's syndrome (SS); however, the lived experience of how the disease affects sexual functioning and the sexual environment remains unexplored. This qualitative study explores the conversations pertaining to female sexual function and the sexual environment that individuals with SS have on an internet forum. Qualitative data posted on one publicly accessible, worldwide, internet forum was extracted using an automated web scraping tool. A total of 247,694 posts across 23,382 threads were scraped from the forum in July 2019 and June 2022 (from the United Kingdom). A predetermined and theoretically informed keyword search strategy was used to screen the captured data for content relevant to the study aim. The dataset was cleaned to remove duplication and identifying information and screened for topic relevance. The Computer-Assisted Qualitative Data Analysis software tool, ATLAS.ti, was used to facilitate the data analysis process. Thematic analysis was conducted on 1443 female-oriented posts, and four key themes were identified: the symptoms of SS and their impact on the sexual environment; the emotional responses that are commonly evoked in response to sexual difficulties; the strategies that users have implemented to manage sexual problems; and the impact that a partner's behavior may have on the sexual environment. Together these themes provide an insight into the nature of sexual difficulties for females with SS. Our findings provide novel insights to inform clinical discussions between practitioners and patients whilst further outlining the importance of undertaking qualitative research with this population.

Effectiveness of physical activity interventions on reducing perceived fatigue among adults with chronic conditions: a systematic review and meta-analysis of randomised controlled trials.

Fatigue is barrier of physical activity participation in adults with chronic conditions. However, physical activity alleviates fatigue symptoms. This systematic review and meta-analysis aimed to (1) synthesise evidence from randomised controlled trials (RCTs) exploring the effects of physical activity interventions on fatigue reduction and (2) evaluate their effectiveness. Medline/CINAHL/EMBASE/Web of Science and Scopus were searched up to June 24th, 2023. Two reviewers independently conducted study screening and selection (RCTs), extracted data and assessed risk of bias (RoB2). Outcome was the standardised mean difference (SMD) with 95% confidence intervals in fatigue between experimental and control groups. 38 articles met the inclusion criteria. Overall, physical activity interventions moderately reduced fatigue (SMD = 0.54, p < 0.0001). Interventions lasting 2-6 weeks demonstrated a larger effect on fatigue reduction (SMD = 0.86, p < 0.00001). Interventions with 18-24 sessions showed a large effect on fatigue reduction (SMD = 0.97, p < 0.00001). Aerobic cycling and combination training interventions had a large to moderate effect (SMD = 0.66, p = 0.0005; SMD = 0.60, p = 0.0010, respectively). No long-term effects were found during follow-up. Physical activity interventions moderately reduced fatigue among adults with chronic conditions. Duration, total sessions, and mode of physical activity were identified as key factors in intervention effectiveness. Further research is needed to explore the impact of physical activity interventions on fatigue.

Coping strategies, illness perceptions, and relationship dynamics contribute to female sexual function and sexual distress in Sjögren's syndrome.

BACKGROUND: Sexual dysfunction and sexual distress are common complaints for women with the autoimmune rheumatic disease Sjögren's syndrome (SS); however, the role of psychosocial and interpersonal factors has not previously been explored in SS. AIM: This study investigated whether psychosocial variables, such as coping strategies, illness perceptions, and relationship dynamics, contributed to sexual function and sexual distress for women with SS. METHODS: Participants with SS completed an online cross-sectional survey that included prevalidated questionnaires assessing sexual function, sexual distress, disease-related symptom experiences, cognitive coping strategies, illness perceptions, relationship satisfaction, and partners' behavioral responses. Multiple linear regression was used to identify factors significantly associated with sexual function (total Female Sexual Function Index [FSFI] score) and sexual distress (total Female Sexual Distress Scale score) for women with SS. OUTCOMES: Study outcome measures were the FSFI, Female Sexual Distress Scale, EULAR SjÓ§gren's Syndrome Patient Reported Index, numeric rating scale for vaginal dryness (0-10), Profile of Fatigue and Discomfort, Cognitive Emotion Regulation Questionnaire (CERQ), Brief Illness Perceptions Questionnaire (B-IPQ), West Haven-Yale Multidimensional Pain Inventory (WHYMPI), and Maudsley Marital Questionnaire. RESULTS: A total of 98 cisgender women with SS participated in the study (mean age = 48.13 years, SD = 13.26). Vaginal dryness was reported by 92.9% of participants, and clinical levels of sexual dysfunction (total FSFI score <26.55) were observed in 85.2% (n = 69/81) of cases. More vaginal dryness, lower CERQ positive reappraisal, and higher CERQ catastrophizing were significantly associated with poorer self-rated sexual function (R2 = 0.420, F3,72 = 17.394, P < .001). Higher CERQ rumination, lower CERQ perspective, lower WHYMPI distracting responses, and higher B-IPQ identity were significantly associated with higher sexual distress (R2 = 0.631, F5,83 = 28.376, P < .001). CLINICAL IMPLICATIONS: This study suggests that interpersonal and psychosocial factors are important contributors to sexual function and distress in women with SS and that the development of psychosocial interventions for this population is warranted. STRENGTHS AND LIMITATIONS: This study is one of the first to explore the impacts of coping strategies, illness perceptions, and relationship dynamics on sexual function and sexual distress for women with SS. Limitations of our study include its cross-sectional nature and narrow sample demographic, which limit the generalizability of our results to other population groups. CONCLUSION: Women with SS who utilized adaptive coping strategies had better sexual function and lower levels of sexual distress than women who utilized maladaptive coping strategies.

Intuitive Eating Intervention and Diet Quality in Adults: A Systematic Literature Review.

INTRODUCTION: Intuitive eating interventions aim to improve individual health and promote sustainable changes to one's relationship with food. However, there is no evidence-based consensus on the impact of intuitive eating interventions on diet quality. This systematic review aimed to investigate intuitive eating interventions and their impact on diet quality. METHOD: PubMed, Embase, CINAHL, PsycInfo, and Cochrane databases were systematically searched to October 2021 for studies reporting interventions that encompassed the principles of intuitive eating and measured diet quality. Other health outcomes were used for secondary analysis. Findings were synthesized narratively. RESULTS: Seventeen papers reporting 14 intervention studies (n = 3,960) were included in the review. All studies found a positive or neutral effect on diet quality following an intuitive eating intervention. A favorable change in eating behavior following these interventions was also observed. DISCUSSION: Intuitive eating promotes an attunement to the body, which aids in improving diet quality because of increased awareness of physiological cues. The reduction of emotional and binge eating may also increase diet quality. IMPLICATIONS FOR RESEARCH AND PRACTICE: Findings from the current review suggest that intuitive eating interventions are most effective face-to-face, in a group setting, and sustained for at least 3 months.

Activity interference in patients with Sjögren's syndrome: a cross-sectional study of 149 patients in the UK.

OBJECTIVES: To investigate which five activity interference categories out of pain, fatigue, mood, dryness and brain fog/mental fatigue scored highest in patients with primary Sjögren's syndrome (pSS) and to investigate the association between activity interference and mood and physical functioning in these patients. METHODS: The Comprehensive Pain Evaluation Questionnaire (CPEQ) assessed activity interference (actions performed in daily life that are hindered) in 149 UK pSS patients. This was modified to include four additional symptoms (fatigue, mood, dryness and brainfog/mental fatigue). Functional impairment was measured using the Hospital Anxiety and Depression Scale (HADS) and the Improved Health Assessment Questionnaire (Improved HAQ). Univariable linear regression models were estimated to investigate the association between CPEQ results and the outcome scores obtained from the HADS and Improved HAQ. Multivariable linear regression models were estimated adjusting for patient age and length of disease. RESULTS: Fatigue had the biggest impact on seven activity domains: physical exercise (mean score of 3.49 out of 5 [s.d. 1.26]), performing household chores (mean 3.14 [s.d. 1.18]), gardening or shopping (mean 3.18 [s.d. 1.20]), socializing with others (mean 2.62 [s.d. 1.24]), recreation/hobbies (mean 2.88 [s.d. 1.20]), sexual relations (mean 3.00 [s.d. 1.52]), and mental efficacy (mean 2.69 [s.d. 1.17]). Regression analysis showed a positive correlation in which every point increase in an activity interference category saw the overall mood and physical functioning scores increase. CONCLUSION: Fatigue has the largest impact on pSS patients' daily activities in this cohort. Length of disease reduced the impact of activity interference on patients' overall health score.

Identifying Occupational Therapy Research Priorities in Trinidad and Tobago: A Group Concept Mapping Study.

In Trinidad and Tobago, occupational therapy is an emerging profession with limitations in the number of practitioners and the scope of practice. With the development of a new Master of Science Occupational Therapy programme in the country, the profession is continuously growing. There has been an increased demand for culturally relevant research to build the occupational therapy evidence base locally. However, the narrow range of occupational therapy literature in the country makes it difficult to highlight research gaps and decipher what research areas should be prioritised to best impact occupational therapy practice at present. This group concept mapping study is aimed at identifying priority areas for occupational therapy research in Trinidad and Tobago from the perspectives of occupational therapy students and practitioners. Participants brainstormed and contributed specific research ideas they would like to see developed in the country. Individually, participants sorted these ideas into themes and rated each idea based on perceived importance and feasibility. Using the GroupWisdom™ software, multidimensional scaling and hierarchical cluster analyses were applied to the sort data to create idea clusters within a concept map. Rating values were analysed to determine priority research themes within the concept map. The resulting concept map illustrated seven research priorities: Contextualising Practitioner Development, The Realities of Emerging OT Practice, Localising Mental Health OT, Occupation and Participation of Children and Youth, School-based OT in the Local Context, OT with Special Populations, and OT Contributions to the Public Health Sector. These findings represent the research needs of the occupational therapy profession in Trinidad and Tobago and will help to focus future researchers' efforts to expand the local evidence base.

Conceptualizing the benefits of a group exercise program developed for those with chronic fatigue: a mixed methods clinical evaluation.

PURPOSE: Fatigue is a disabling and prevalent feature of many long-term conditions. Orthostatic dizziness is a commonly experienced by those with fatigue. The purpose was; to evaluate factors contributing to successful delivery of a novel group exercise program designed for people with chronic fatigue and orthostatic symptoms and identify targets to improve future program content and delivery. RESEARCH METHODS: We used group concept mapping methodology. Participants of the exercise program with a long-term physical health condition and chronic fatigue- contributed ideas in response to a focus question. They sorted these ideas into themed piles and rated them for importance and success of the program delivery. Multidimensional scaling and cluster analysis were applied to the sort data to produce ideas clusters within a concept map. Value ratings were compared to evaluate the success of the program. RESULTS: The resulting concept map depicted seven key themed clusters of ideas: Exercises, Group atmosphere, Physical benefits, Self-management of symptoms, Acceptance and Education. Value plots of the rating data identified important and successful conceptual ideas. CONCLUSIONS: The concept maps have depicted key concepts relating to the successful delivery of a novel exercise program for people with fatigue and identified specific targets for future program enhancements.Implications for rehabilitationOrthostatic symptoms are common in those with fatigue and might be a target for group-based exercise programs.People with fatigue value a group-based exercise program that targets orthostatic symptoms.The key concepts of a group-based exercise program valued by those with fatigue are the exercises, group atmosphere, physical benefits, self-management support, acceptance, education and support with looking forwards following the program.

The management of Sjögren's syndrome: British Society for Rheumatology guideline scope.

The guideline will be developed using the methods and processes outlined in Creating Clinical Guidelines: Our Protocol [1]. This development process to produce guidance, advice and recommendations for practice has National Institute for Health and Care Excellence (NICE) accreditation.

Exploring medicines reconciliation in the emergency assessment unit: staff perceptions and actual waiting times.

BACKGROUND: Medicines reconciliation is the process of creating and maintaining the most accurate list possible of all medicines a patient is taking. If medicines reconciliation cannot be completed in a timely manner in hospital emergency assessment units (EAUs), delays in treatment can occur, potentially leading to deterioration of long-term and acute conditions, patient distress and complaints. AIM: To obtain the perspectives of staff working on an EAU regarding the time patients wait for their medicines to be prescribed, including their awareness of practice and protocols. To determine the time from admission to the EAU until medicines reconciliation, and to identify if there was any time difference in medicines reconciliation according to the day of admission. METHOD: This was a service evaluation in which staff working in one EAU in a teaching hospital in the north east of England were asked to complete a survey in December 2017. The staff survey aimed to ascertain: whether staff were aware of any guidance relating to medicines reconciliation times; how long they thought the average waiting time was for medicines reconciliation; and if they thought there were implications for patients or staff as a result of time spent waiting for medicines reconciliation. In addition, an audit was performed analysing medicines reconciliation times for all patients admitted to the EAU during the month of December 2017. RESULTS: A total of 30 staff members responded to the survey. While 40% ( n =12) of respondents believed that the EAU had an efficient system in place for timely medicines reconciliation, 90% ( n =27) believed the unit could still improve. Almost half the respondents (47%, n =14) perceived a delay in medicines reconciliation could result in exacerbation of patients' physical conditions. The clinical audit identified considerable variation in medicines reconciliation times, ranging from seven minutes to almost 24 hours. However, most medicines (82%) were reconciled within six hours. CONCLUSION: This service evaluation found that the median time after arrival in the EAU until completion of medicines reconciliation was two hours 48 minutes. However, almost one fifth of patients had to wait for more than six hours, and in one instance almost 24 hours. One potential solution could be increasing the involvement of hospital pharmacists or pharmacy technicians in medicines reconciliation.

Conceptualizing the key components of rehabilitation following major musculoskeletal trauma: A mixed methods service evaluation.

RATIONALE, AIMS, AND OBJECTIVES: The reorganization of acute major trauma pathways in England has increased survival following traumatic injury, resulting in an increased patient population with diverse and complex needs requiring specialist rehabilitation. However, national audit data indicate that only 5% of patients with traumatic injuries have access to specialist rehabilitation, and there are limited guidelines or standards to inform the delivery of rehabilitation interventions for individuals following major trauma. This group concept mapping project aimed to identify the clinical service needs of individuals accessing our major trauma rehabilitation service, prioritize these needs, determine whether each of these needs is currently being met, and plan targeted service enhancements. METHODS: Participants contributed towards a statement generation exercise to identify the key components of rehabilitation following major trauma, and individually sorted these statements into themes. Each statement was rated based on importance and current success. Multi-dimensional scaling and hierarchical cluster analysis were applied to the sorted data to produce themed clusters of ideas within concept maps. Priority values were applied to these maps to identify key areas for targeted service enhancement. RESULTS: Fifty-eight patients and health care professionals participated in the ideas generation activity, 34 in the sorting, and 49 in the rating activity. A 7-item cluster map was agreed upon, containing the following named clusters: Communication and Coordination; Emotional and psychological wellbeing; Rehabilitation environment; Early rehabilitation; Structured therapy input; Planning for home; and Long-term support. Areas for targeted service enhancement included access to timely and adequate information provision, collaborative goal setting, and specialist pain management across the rehabilitation pathway. CONCLUSION: The conceptual framework presented in this article illustrates the importance of a continuum of rehabilitation provision across the injury trajectory, and provides a platform to track future service changes and facilitate the codesign of new rehabilitation interventions for individuals following major trauma.

A two-phase cohort study of the sleep phenotype within primary Sjögren's syndrome and its clinical correlates.

OBJECTIVES: To characterise the sleep profile of patients with primary Sjögren's syndrome (pSS) and its relationship between hyper-somnolence and other clinical parameters. METHODS: In phase one of the study, we utilised cross-sectional data on daytime hyper-somnolence from the United Kingdom Primary Sjögren's Syndrome Registry (UKPSSR) cohort (n=857, female=92.7%). Phase two relied on clinical data from a cohort of patients (n=30) with PSS, utilising symptom assessment questionnaires and sleep diaries. RESULTS: Within the UKPSSR, daytime hyper-somnolence was prevalent (ESS, 8.2±5.1) amongst pSS patients with a positive correlation between daytime hyper-somnolence and fatigue (Spearman's rs = 0.42, p<0.0001). Amongst the clinical cohort, 100% of patients had problematic sleep. Participants with pSS awoke frequently (NWAK, 2.2±1.3), had difficulty in returning back to sleep (WASO, 59.9±50.2 min vs. normal of <30min) and a reduced sleep efficiency (SE, 65.7±18.5% vs. >85%). Fatigue (FIS, 82.4 ±33.5) and orthostatic symptoms (OGS, 6.7 ±3.7) remained high in these patients. CONCLUSIONS: Sleep disturbances are a problem in pSS, comprising difficulty in maintaining sleep, frequent awakenings throughout the night and difficulties in returning back to sleep. As such, the total time in bed without sleep is much greater and sleep efficiency greatly reduced. These patients in addition have a high symptomatic burden possibly contributing to and/or contributed by poor and disordered sleep.

Managing fatigue in patients with primary Sjögren's syndrome: challenges and solutions.

Primary Sjögren's syndrome (pSS) patients identify fatigue as their most important symptom and the one most difficult to cope with, but there are still many challenges and few solutions to manage this debilitating symptom. Promising pharmacological treatments, such as rituximab, have failed in more stringent tests including randomized controlled trials (RCTs) and meta-analysis. While non-pharmacological interventions may be safer, less costly, and address other common comorbidities, to date only aerobic exercise seems to be effective at reducing fatigue in pSS. All interventions, pharmacological or not, need to be tested in high-quality RCTs. The aim of this review is to provide an overview of fatigue management in pSS and discuss potential opportunities for future research.

Symptom-based stratification of patients with primary Sjögren's syndrome: multi-dimensional characterisation of international observational cohorts and reanalyses of randomised clinical trials.

BACKGROUND: Heterogeneity is a major obstacle to developing effective treatments for patients with primary Sjögren's syndrome. We aimed to develop a robust method for stratification, exploiting heterogeneity in patient-reported symptoms, and to relate these differences to pathobiology and therapeutic response. METHODS: We did hierarchical cluster analysis using five common symptoms associated with primary Sjögren's syndrome (pain, fatigue, dryness, anxiety, and depression), followed by multinomial logistic regression to identify subgroups in the UK Primary Sjögren's Syndrome Registry (UKPSSR). We assessed clinical and biological differences between these subgroups, including transcriptional differences in peripheral blood. Patients from two independent validation cohorts in Norway and France were used to confirm patient stratification. Data from two phase 3 clinical trials were similarly stratified to assess the differences between subgroups in treatment response to hydroxychloroquine and rituximab. FINDINGS: In the UKPSSR cohort (n=608), we identified four subgroups: Low symptom burden (LSB), high symptom burden (HSB), dryness dominant with fatigue (DDF), and pain dominant with fatigue (PDF). Significant differences in peripheral blood lymphocyte counts, anti-SSA and anti-SSB antibody positivity, as well as serum IgG, κ-free light chain, ß2-microglobulin, and CXCL13 concentrations were observed between these subgroups, along with differentially expressed transcriptomic modules in peripheral blood. Similar findings were observed in the independent validation cohorts (n=396). Reanalysis of trial data stratifying patients into these subgroups suggested a treatment effect with hydroxychloroquine in the HSB subgroup and with rituximab in the DDF subgroup compared with placebo. INTERPRETATION: Stratification on the basis of patient-reported symptoms of patients with primary Sjögren's syndrome revealed distinct pathobiological endotypes with distinct responses to immunomodulatory treatments. Our data have important implications for clinical management, trial design, and therapeutic development. Similar stratification approaches might be useful for patients with other chronic immune-mediated diseases. FUNDING: UK Medical Research Council, British Sjogren's Syndrome Association, French Ministry of Health, Arthritis Research UK, Foundation for Research in Rheumatology. VIDEO ABSTRACT.

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

INTRODUCTION: Primary 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. METHOD: We 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. RESULTS: Five 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. CONCLUSION: Primary 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.

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

OBJECTIVE: Functional 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. METHODS: Group 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. RESULTS: A 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. CONCLUSION: Our 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.