Publications by authors named "Clare Pain"

Introduction: Autologous stem cell transplantation (ASCT) and cellular therapies (CTs) are emerging therapeutic options for both adult and juvenile-onset systemic sclerosis (jSSc) patients. However, most efficacy data are derived from adult studies, and it remains unclear whether adult stem cell transplant criteria are fully applicable to pediatric patients with jSSc. Given pediatric patients' unique potential for recovery and tissue remodeling, the stringent criteria used in adults need adaptation for children.

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Objective: To explore experiences, benefits and concerns associated with remote (telephone/video) consultations from the perspectives of children and young people with juvenile idiopathic arthritis (JIA), their parents, and health professionals (HPs) who were members of a multidisciplinary team in a paediatric rheumatology setting.

Methods: Qualitative design (Interpretive Description) utilising observation of remote (telephone/video) consultations and remote follow-up interviews with children and young people (7-18 years) with JIA, their parents, and HPs. The setting was a tertiary paediatric rheumatology clinic in a hospital in Northwest England.

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Article Synopsis
  • - Juvenile localized scleroderma leads to skin and soft tissue fibrosis, often resulting in more severe forms like linear and craniofacial scleroderma in children.
  • - About 50% of affected children experience extracutaneous symptoms, which can worsen treatment outcomes and overall quality of life.
  • - The review aims to tackle the management challenges of these severe cases by presenting case studies, available evidence, and current treatment recommendations.
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This guideline was developed according to the British Society for Rheumatology Guidelines Protocol by a Guideline Development Group comprising healthcare professionals with expertise in SSc and people with lived experience, as well as patient organization representatives. It is an update of the previous 2015 SSc guideline. The recommendations were developed and agreed by the group and are underpinned by published evidence, assessed by systematic literature review and reinforced by collective expert opinion of the group.

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This guideline was developed according to the British Society for Rheumatology Guidelines Protocol by a Guideline Development Group comprising healthcare professionals with expertise in SSc and people with lived experience, as well as patient organization representatives. It is an update of the previous 2015 SSc guideline. The recommendations were developed and agreed by the group and are underpinned by published evidence, assessed by systematic literature review and reinforced by collective expert opinion of the group.

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Introduction: Juvenile systemic sclerosis (jSSc) is an orphan disease with a prevalence of 3 in 1,000,000 children. Currently there is only one consensus treatment guideline concerning skin, pulmonary and vascular involvement for jSSc, the jSSc SHARE (Single Hub and Access point for pediatric Rheumatology in Europe) initiative, which was based on data procured up to 2014. Therefore, an update of these guidelines, with a more recent literature and expert experience, and extension of the guidance to more aspects of the disease is needed.

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Background: Paediatric symptomatic SARS-CoV-2 infections associate with two presentations, acute COVID-19 and paediatric inflammatory multisystem syndrome temporally associated with SARS-CoV-2 (PIMS-TS). Phenotypic comparisons, and reports on predictive markers for disease courses are sparse and preliminary.

Methods: A chart review of COVID-19 and PIMS-TS patients (≤19 years) admitted to Alder Hey Children's NHS Foundation Trust, a tertiary centre in the North-West of England, was performed (02/2020-09/2022).

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Mesenchymal stem cells (MSCs) modulate immune responses and maintain self-tolerance. Their trophic activities and regenerative properties make them potential immunosuppressants for treating autoimmune and autoinflammatory diseases. MSCs are drawn to sites of injury and inflammation where they can both reduce inflammation and contribute to tissue regeneration.

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In 2001, the WHO launched The World Health Report most specifically addressing low-income and middle-income countries (LAMICs). It highlighted the importance of mental health (MH), identifying the severe public health impacts of mental ill health and made 10 recommendations. In 2022, the WHO launched another world MH report and reaffirmed the 10 recommendations, while concluding that 'business as usual for MH will simply not do' without higher infusions of money.

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Background: IgA vasculitis (IgAV) is a small vessel vasculitis that is more common in childhood. Very limited evidence exists on patients who experience an atypical disease course. The aim of this study was to describe a cohort of children diagnosed with recurrent or persisting IgAV to identify any themes associated with their disease course and areas of unmet needs.

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Objectives: To evaluate whether in juvenile localized scleroderma (JLS), non-invasive imaging can differentiate affected from non-affected skin and whether imaging correlates with a validated skin score [Localised Scleroderma Cutaneous Assessment Tool (LoSCAT)].

Methods: A total of 25 children with JLS were recruited into a prospective study and a single 'target' lesion was selected. High-frequency ultrasound (HFUS, measuring skin thickness), infrared thermography (IRT, skin temperature), laser Doppler imaging (LDI, skin blood flow) and multispectral imaging (MSI, oxygenation) were performed at four sites: two of affected skin (centre and inner edge of lesion) and two of non-affected skin (1 cm from the edge of the lesion 'outer' and contralateral non-affected side) at four visits at 3 month intervals.

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Objective: Juvenile systemic sclerosis (SSc) is an orphan disease, associated with high morbidity and mortality. New treatment strategies are much needed, but clearly defining appropriate outcomes is necessary if successful therapies are to be developed. Our objective here was to propose such outcomes.

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This guideline will provide a practical roadmap for management of SSc that builds upon the previous treatment guideline to incorporate advances in evidence-based treatment and increased knowledge about assessment, classification and management. General approaches to management as well as treatment of specific complications will be covered, including lung, cardiac, renal and gastrointestinal tract disease, as well as RP, digital vasculopathy, skin manifestations, calcinosis and impact on quality of life. It will include guidance related to emerging approved therapies for interstitial lung disease and account for National Health Service England prescribing policies and national guidance relevant to SSc.

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Standardised sex-adjusted prevalence ratios (SSPRs) have not been published for any autoimmune diseases (ADs) in patients with Postural Orthostatic Tachycardia Syndrome (POTS), who are predominantly young females. We performed a systematic review according to PRISMA guidelines of POTS cohorts reporting the prevalence of at least one AD. Only four studies were found: two providing data on celiac disease; and two with data on 'any AD', Hashimoto's thyroiditis, rheumatoid arthritis, systemic lupus erythematosus (SLE), Sjögren's syndrome and celiac disease and (one study) antiphospholipid syndrome.

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Article Synopsis
  • An international Task Force of specialists convened to develop a 'treat-to-target' (T2T) approach for improving care in childhood-onset systemic lupus erythematosus (cSLE) through expert consensus and systematic literature review.* -
  • The Task Force established four key principles and fourteen important considerations emphasizing shared decision-making with patients and caregivers, aiming for full remission, prevention of flare-ups, and addressing health-related quality of life factors.* -
  • This consensus framework for T2T in cSLE is expected to guide future strategies and research, gaining support from the Paediatric Rheumatology European Society.*
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The goal of this study was to test the efficacy of training community-based psychotherapists who were part of a practice research network to be more attuned to their patients' experiences of the therapeutic relationship. We were particularly interested in the effect of therapist training on the congruence of alliance ratings with their patients. Forty psychotherapists who treated 117 patients were randomly assigned to receive either no training or training, whose learning objectives were to help therapists to develop and maintain a therapeutic alliance.

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Objectives: The objective of this evaluation was to assess the feasibility of implementing a fully integrated, automated, electronic patient-reported outcome measures (ePROM) system into a hospital electronic patient record (EPR; hospital-based clinical record). Additional objectives included evaluating the effect of the system on patient-reported outcome measures (PROM) completion rates and investigating the acceptability of the ePROM.

Methods: The evaluation was conducted in a rheumatology clinic in a specialist children's hospital in the UK.

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The evidence base that underlies the management of children and young people with paediatric rheumatic diseases is deficient. In this field, there are many crucial unanswered questions. The UK Paediatric Rheumatology Clinical Studies Group, supported by UK National Institute for Health Research Clinical Research Network: children and Versus Arthritis, elicited ideas for research priorities from paediatric rheumatologists, trainees, allied health-care professionals, nurse specialists, patients, parents of patients, carers, and charities.

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Interpersonal psychotherapy (IPT) is an evidence-supported, relationally focused treatment for people living with depression and other psychiatric disorders in the context of stressful life events. Mentalizing, also relationally focused, promotes the ability to perceive, understand, and interpret human behavior in terms of intentional mental states of others or oneself, in order to support social leaning. IPT and mentalization-based treatments (MBT) both seek to improve interpersonal effectiveness, albeit with different emphases in the therapeutic process, with IPT promoting interpersonal problem solving and MBT promoting understanding of the obstacles to this outcome.

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Objectives: The primary objective was to define the incidence of JSLE in children <16 years of age in the UK and Republic of Ireland (ROI). The secondary objective was to describe presenting features, classification criteria, initial management and disease damage in newly presenting JSLE patients.

Methods: A prospective JSLE epidemiological study was undertaken between September 2017 and September 2019 with support of the British Paediatric Surveillance Unit and other professional groups involved in diagnosis and management of JSLE patients.

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Background: Socio-culturally determined processes account for how individuals give meanings to health, illness, causal attributions, expectations from treatment, and related outcomes. There is limited evidence of explanatory models for mental distress among higher education institutions in Ethiopia. The objective of this study was to explore the explanatory models for mental distress among Wolaita Sodo University.

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