Katie L Hackett

Northumbria University · School of Health, Community and Education Studies

Objectives: To identify whether sleep disturbances are more prevalent in primary SS (pSS) patients compared with the general population and to recognize which specific sleep symptoms are particularly problematic in this population. Methods: Electronic searches of the literature were conducted in PubMed, Medline (Ovid), Embase (Ovid), PsychINFO (...

Introduction A significant proportion of patients with primary Sjögren's syndrome (PSS) is functionally impaired and experience difficulties participating in various aspects of everyday life. There is currently no evidence of efficacy for non-pharmacological interventions aimed specifically at supporting the patients with PSS to improve their parti...

Importance: Fatigue is a significant and debilitating symptom affecting 25% of the population. It occurs in those with a range of chronic diseases, can be idiopathic and in 0.2-0.4% of the UK population occurs in combination with other symptoms that together constitute chronic fatigue syndrome (CFS). Until recently, NHS clinical services only focu...

To evaluate the effects of non-pharmacological interventions for primary SS (pSS) on outcomes falling within the World Health Organization International Classification of Functioning Disability and Health domains. We searched the following databases from inception to September 2014: Cochrane Database of Systematic Reviews; Medline; Embase; PsychINF...

Several studies have demonstrated that primary Sjögren's syndrome (SS) is associated with reduced productivity; however, the impact of primary SS on daily function is not fully understood. This study aims to assess the physical function of primary SS patients and determine the relationship between the functional impairment experienced by primary SS...

Introduction Despite growing enthusiasm for quality improvement (QI), the complexities of modern healthcare continue to create gaps in our ability to consistently deliver the most effective and efficient care for patients, and improvement activities often fail to achieve widespread uptake even when there is robust evidence of their benefits. Metho...

Background Women with Sjögren’s syndrome (SS) are more likely to experience vaginal dryness, dyspareunia and reduced sexual function than healthy controls¹. There is limited data investigating relationships with psychosocial influences, such as coping mechanisms, illness perceptions, partners behaviours and relationship satisfaction. Objectives To...

Background Technology-supported self-management of long-term conditions (e.g., through the use of smartphone apps) provides easily accessible support. However, currently there are no systematically developed, evidence-based smartphone apps for Sjogren’s Syndrome. We took an agile approach to developing such an app: instead of starting “from scratch...

Background A health inequalities gap exists between wealthy and deprived areas. Community-level occupation-focused interventions may support citizens and address inequities within their environments. Since the global financial crash of 2008 and fiscal policy changes within the United Kingdom, there has been a rise in food insecurity. Community volu...

Background/Aims People with Sjögren's Syndrome (SS) experience a range of symptoms, including dryness, pain, fatigue, and poor sleep. Pharmacological management is limited, and SS patients may not have timely access to non-pharmacological support with these symptoms. Accessible evidence-based support via an app may benefit some. An evidence-based a...

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 P...

The on-going rise in demand experienced by voluntary and community organisations (VCOs) providing emergency food aid has been described as a sign of a social and public health crisis in the UK (Loopstra, 2018; Lambie-Mumford, 2019), compounded since 2020 by the impact of (and responses to) Covid 19 (Power et al., 2020). In this article we adopted a...

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 t...

Background Individuals with Sjögren’s syndrome (SS) experience significantly higher levels of sexual dysfunction and sexual distress than healthy controls (van Nimwegen et al., 2015). Identifying associated factors may help to identify a subgroup of patients with SS who may benefit from early intervention to maintain sexual wellbeing and avoid unne...

Current treatments for Sjögren’s syndrome (SS) are limited. Pharmacological treatments tend to focus on topical treatments for dryness or oral muscarinic agonists which increase tear production and salivary flow. National treatment guidelines for primary SS incorporating available published evidence and expert opinion include recommendations for sp...

The Oxford Textbook of Sjögren’s Syndrome is an authoritative textbook, rich with valuable illustrations and figures, providing a practical guide to diagnosing and managing all aspects of this condition. Sjögren’s syndrome is a chronic, immune-mediated condition typically presenting in women in their fifth or sixth decade. With increased awareness...

Intervention development is an iterative, recursive process, and involvement of users and stakeholders is of upmost importance to produce interventions that are likely to be acceptable and effective. Health behavior change interventions can be developed using several frameworks. Although different, these focus on the same core set of steps: analyzi...

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.

Background Sjögren’s Syndrome (SS) is an autoimmune rheumatic disease that targets secretion glands throughout the body, causing symptoms of oral, ocular and genital dryness (van de Merwe, 2010). A small body of literature has investigated the impact of SS on women’s sexual functioning, however, no research currently exists that has explored this t...

Background Sjögren’s syndrome (SS) is a rheumatic disease requiring self-management which may be delivered through smartphones. When developing digital interventions it is important to review what is already available (market segmentation) ¹ to identify unique selling points and aid uptake and adoption. While there are no dedicated SS apps, many ar...

Background Sjögren’s syndrome (SS) is an autoimmune rheumatic disease with diverse symptoms including mental and physical fatigue, dryness, pain and sleep disturbances. These symptoms are interconnected and rarely occur in isolation. Improving symptoms and quality of life requires people with SS to navigate multiple interventions and engage in self...

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...

Fatigue is highly prevalent in inflammatory arthritis, and people living with the symptom have described it as overwhelming and a challenge to manage. In this article, we explore the experience, impact and non-pharmacological management of fatigue from a multi-disciplinary perspective. We start by presenting qualitative evidence from people living...

Background Sjögren’s syndrome (SS) is an autoimmune disease that predominantly affects women (by a ratio of 9:1), and age at onset is typically between 40-60 years. Symptoms of dryness of the vagina and vulva can cause painful sexual intercourse and can result in diminished levels of sexual arousal and desire. This can lead to a lack of understandi...

Failure to speedily reconcile regular medications in the emergency assessment unit (EAU) of a hospital can cause delays to treatment leading to deterioration of patient conditions, contribute to patient distress and lead to complaints. In this service evaluation, we surveyed 30 staff within the EAU of a busy teaching hospital on their perceptions o...

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.

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 ana...

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...

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...

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 t...

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 (...

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 tr...

Objectives To report on fatigue in patients from the United Kingdom Primary Sjögren’s Syndrome Registry identifying factors associated with fatigue and robust to assignable causes such as comorbidities and medications associated with drowsiness. Methods From our cohort (n=608) we identified those with comorbidities associated with fatigue, and tho...

Objective: Functional ability and participation in life situations are compromised in many primary Sjögren's syndrome (PSS) patients. This study aims to identify the key barriers and priorities to participation in daily living activities, in order to develop potential future interventions. Methods: Group concept mapping (GCM), a semi-quantitativ...

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 disturbanc...

BSR and BHPR Guideline for the Management of Adults with Primary Sjögren’s Syndrome Elizabeth Price1, Saaeha Rauz2, Anwar Tappuni3, Nurhan Sutcliffe4, Katie L. Hackett 5, Francesca Barone6, Guido Granata6, Wan-Fai Ng5, Benjamin A. Fisher6, Michele Bombardieri7, Elisa Astorri7, Ben Empson8, Genevieve Larkin9, Bridget Crampton10 and Simon Bowman11 o...

Fatigue, sleep disturbances and pain, are symptoms of primary Sjögren’s syndrome (PSS), and autoimmune disease. Current interventions predominantly focus on treating dryness symptoms (Hackett et al 2015). The aims were to explore the lived experience of fatigue, sleep disturbances and discomfort in people with PSS and to investigate their impact....

Background: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) affects 0.4% of the population. It is characterised by disabling fatigue and a combination of self-reported symptoms which include impairments in concentration, short-term memory, sleep disturbances, post-exertional malaise and musculoskeletal pain. There are four categories of...

Fatigue, sleep disturbances and pain, are symptoms of primary Sjögren’s syndrome (PSS). However, current clinical interventions predominantly focus on treating patients’ dryness symptoms. To explore the experience of fatigue, sleep disturbances and discomfort in people with PSS, to investigate the impact of these symptoms on patients’ daily lives a...

Background: Patients with primary Sjögren’s syndrome (PSS) experience a range of symptoms including dryness, fatigue, pain and low mood. The impact of these symptoms upon the people with whom they live, is unknown. The caregiver strain index (CSI) is a thirteen item questionnaire which measures strain in caregivers (Robinson 1983). Objectives: To d...

Background Increased patient activation has been associated with reduced costs of treatment¹ and improved patient outcomes². The effect of primary Sjögren's syndrome (pSS) on patient activation however has not been established. Objectives This study aims to identify how activated patients with pSS are, and to ascertain whether factors such as ESSP...

Objective: To describe how the effects of gravity may adversely affect the neuro-cardiovascular physiology of individuals with severe Chronic Fatigue Syndrome (CFS). Design: A narrative review of the literature relating to microgravity, orthostatic intolerance and severe CFS. Emphasis is placed on the clinical significance and implications for the...

Background: Pain is a major determinant of poor quality of life in primary Sjögren's syndrome (PSS) and a priority symptom for United Kingdom Primary Sjögren's Syndrome Registry (UKPSSR) patients. Although neuropathic and chronic pain phenotypes have previously been identified, little is really known about this symptom in PSS. In order to further e...

Objectives: Although fatigue is a common symptom for people with rheumatic diseases, limited support is available. This study explored the impact of written information about fatigue, focusing on a booklet, Fatigue and arthritis. Methods: Thirteen patients with rheumatic disease and fatigue were recruited purposively from a rheumatology outpatie...

Background/Purpose: Primary Sjögren’s syndrome (PSS) is an autoimmune disease which targets secretary glands resulting in dry eyes and mouth. Approximately 70% of PSS patients experience chronic fatigue. The Newcastle Fatigue CRESTA clinic was recently established in the north east of England to offer multidisciplinary care for people with the sym...

OBJECTIVES: This article reports relationships between serum cytokine levels and patient-reported levels of fatigue, in the chronic immunological condition primary Sjögren's syndrome (pSS). METHODS: Blood levels of 24 cytokines were measured in 159 patients with pSS from the United Kingdom Primary Sjögren's Syndrome Registry and 28 healthy non-fati...

Objectives This article reports relationships between serum cytokine levels and patient-reported levels of fatigue, in the chronic immunological condition primary Sjögren's syndrome (pSS). Methods Blood levels of 24 cytokines were measured in 159 patients with pSS from the United Kingdom Primary Sjögren's Syndrome Registry and 28 healthy non-fatig...

Background Primary Sjögren's Syndrome (pSS) is a chronic multi-system disease causing a wide-range of symptoms including dryness, pain and fatigue.1,2 Individual experiences of pSS differ considerably resulting in a heterogeneous patient population.³ These differences in disease-manifestation have not yet been characterised and the biological basis...

Background/Purpose: Primary Sjögren’s Syndrome (pSS) is an autoimmune disease which targets secretory glands and results in dryness. In addition pSS patients frequently experience symptoms of fatigue, pain, low mood and have difficulty performing daily activities and subsequently have poor quality of life. There is currently no curative treatment a...

Background/Purpose: Fatigue is a common symptom for people with inflammatory arthritis and associated auto-immune conditions. Its impact is wide-ranging and significantly reduces health-related quality of life. Research evidence, however, suggests that neither clinicians nor patients consistently raise the issue in clinic. In-depth discussion of fa...

Background: Many people with primary Sjögren's syndrome (PSS) experience difficulty with participation1. There are currently few published studies of non-pharmacological therapy interventions aiming to improve participation in PSS patients. Group concept mapping is a robust, equitable, and systematic approach which has been successfully utilised to...

Importance Fatigue is a significant and debilitating symptom affecting 25% of the population. It occurs in those with a range of chronic diseases, can be idiopathic and in 0.2–0.4% of the UK population occurs in combination with other symptoms that together constitute chronic fatigue syndrome (CFS). Until recently, NHS clinical services only focuss...

Background: Several small studies have investigated cognitive impairment in primary SS (PSS) using self-reported measures. We sought to quantify cognitive impairment symptoms in a large cohort of 150 PSS patients compared with controls and to explore the relationship between cognitive impairment with fatigue, pain and mood symptoms. Methods: PSS p...

Background/objectives The CRESTA Fatigue interdisciplinary clinic was established for patients referred to a chronic fatigue syndrome service who did not fit the Fukuda CFS diagnosis criteria and for CFS/ME patients with suspected autonomic dysfunction. We sought to identify the service needs of this heterogeneous group of patients; prioritise thes...

Objective: This study sets out to investigate the relationship between health status [EuroQol five-dimensions questionnaire (EQ-5D)] in primary SS and three of the European League Against Rheumatism (EULAR) SS outcome measures-the disease activity index (ESSDAI), the patient reported index (ESSPRI) and the sicca score. In particular, the goal was...