Tracy Finch’s research while affiliated with Northumbria University and other places

Purpose To provide an overview of existing literature reporting swallowing outcomes beyond two years post- head and neck cancer treatment. Objectives were to establish prevalence of late radiation-associated dysphagia (-RAD); identify risk factors of developing late-RAD and synthesise the dysphagia findings reported. Methods The PRISMA-ScR checklist for conducting scoping reviews was adopted. Searches of PubMed, EMBASE, Scopus, CINAHL, Web of Science, OpenGrey, Google Scholar and Google Advanced were completed by December 2022. Eligibility criteria included studies written in English from 1996 reporting swallowing outcomes from 2 years or more post-treatment. Data was extracted from included studies, tabulated, synthesised and reported as categories. Results Screening 7671 studies resulted in 39 studies included in the review. There was wide variation in dysphagia outcome measures used and timing of collection across studies. Prevalence could not be established. All studies reported a degree of impairment in at least one measure in a proportion of patients. Numerous risk factors were identified (including tumour site, and T-classification, age, radiotherapy dose), but there were conflicting findings and meaningful synthesis was challenging. Characteristics of late-RAD included high aspiration rates; reduced efficiency of swallowing and lower cranial neuropathy. Conclusion Significant gaps exist in the evidence base regarding late-RAD such as who is affected, why and what the trajectory of decline will be. Swallowing safety is often compromised. A consensus on the definition of late-RAD is needed along with increased uniformity in collection of outcome measures, in order to improve understanding and guide future research and service delivery models.

Purpose: Activity pacing is multidimensional and promising for fatigue management and quality of life in chronic conditions. There is a need to develop activity pacing interventions involving healthcare professionals' views on fatigue management and activity pacing. This study explored healthcare professionals' perspectives on activity pacing and its role in fatigue management for individuals with chronic conditions. Materials and methods: Three focus groups and two semi-structured interviews were conducted with ten healthcare professionals. They were audio-recorded, transcribed verbatim, and analyzed using reflexive thematic inductive analysis. Results: Participants described activity pacing as complex. They highlighted barriers experienced by adults with chronic conditions, including fear of overexertion, reluctance disclosing their condition, and lack of understanding their fatigue. Participants underscored the importance of a tailored, holistic activity pacing approach. They viewed activity pacing as essential for improving the quality of life in chronic conditions and discussed physical activity engagement as a strategy to enhance fatigue management. Conclusion: Findings from this study underscore the complexities of activity pacing in chronic conditions and offer insights to inform the development of more effective interventions. Healthcare professionals' perspectives highlight the need to address both practical and psychological aspects of fatigue management through individualized and holistic approaches.

Background: Stroke may pose significant challenges to individuals and healthcare systems worldwide, and there is a clear need to understand ways to provide effective self-management support. This systematic review aims to identify barriers and enablers for the implementation of self-management support for stroke survivors across various settings. Methods : We conducted a mixed-methods systematic review following PRISMA guidelines, searching CINAHL, Embase, Medline, and Scopus for studies on self-management support with long-term follow-up. The Consolidated Framework for Implementation Research (CFIR) guided our narrative synthesis. Results : After screening 7275 studies and rigorous selection criteria, 37 articles were included. The findings revealed that the implementation of self-management support interventions for stroke survivors is influenced by various enablers and barriers, including training for healthcare professionals, participant motivation, and tailored support. Notable barriers included design and compatibility issues, funding constraints, and local context challenges. Conclusions : Effective self-management interventions must be customized to meet the diverse needs of stroke survivors. Enhancing sustainability and impact requires ongoing support, such as booster sessions and community resources, along with robust evaluation methods. Developing objective measures to complement self-reported data is essential for providing reliable insights and meaningful and effective self-management support. Systematic review registration: This review is registered with the International Prospective Register of Systematic Reviews (PROSPERO), registration number CRD42024508432.

Background Fatigue and inactivity are linked to decreased health-related quality of life (HRQoL) in chronic conditions. A multidimensional approach to activity pacing may improve HRQoL by promoting physical activity (PA) and alleviating fatigue. Addressing fatigue across chronic conditions is crucial, especially when underlying causes are unknown. This study aimed to (1) examine associations between HRQoL, fatigue, pacing, risk of overactivity, PA, and self-regulation of PA in adults with chronic conditions and (2) examine if these associations differ across HRQoL domains: physical, social, emotional, and functional well-being. Methods Sixty-six adults with chronic conditions were recruited from UK fatigue clinics and the community. HRQoL, pacing, risk of overactivity, PA, and self-regulation of PA were assessed with standardised questionnaires and Actigraph monitor. Associations were analysed with linear mixed models, correcting for confounders. Results HRQoL was significantly associated with fatigue (B=-7.82), pacing (B=-0.23), and self-regulation of PA (B = 0.11). Interaction effects revealed fatigue’s impact on HRQoL varied significantly in physical (β=-13.49), social (β=-6.81), and emotional (β=-4.10) domains. Pacing showed significant differences in physical (β=-0.49), social (β=-7.12), and emotional (β=-7.45) domains. Perceived overactivity differed in social domain (β=-6.27), while device-based PA differed in physical (β = 0.35) and social (β = 5.73). Conclusion The negative association between fatigue and HRQoL underscores the importance of effective fatigue management. Higher pacing engagement and lower HRQoL may indicate higher fatigue. Positive associations between self-regulation and PA with HRQoL emphasise benefits of appropriate PA behaviours. The stronger impact of decreased fatigue, increased pacing, and PA on physical well-being suggests a multidimensional fatigue management approach.

Background Late side effects of head and neck cancer treatment commonly affect swallowing function. Late radiation‐associated dysphagia (late‐RAD) often presents years post‐treatment when patients have been discharged from their multidisciplinary team. Timely symptom management may provide important physical and emotional support, potentially reducing the overall healthcare burden. Speech and language therapists (SLTs) are key in the assessment and management of dysphagia but there is no current guidance in the late‐RAD setting. Aims The primary objective was to establish how late‐RAD is assessed in both existing literature and by UK SLT. The study also aimed to explore UK SLT approaches to management. Methods A dual methodology approach was taken. A scoping review (SR) of PubMed, Scopus, CINAHL, Web of Science and Embase databases was conducted between November and December 2022. Eligibility criteria included studies reporting dysphagia outcomes >2 years post‐treatment with narrative data synthesis. Also, a survey of SLTs working in the United Kingdom was conducted between November 2023 and February 2024. Respondents were questioned about their current pathways and service provision for patients with late‐RAD. Main Contribution The SR included 39 studies. Dysphagia was assessed using three different toxicity grades; five patient‐reported outcome measures (PROMs) and five clinical assessments. Five studies were multidimensional in their approach to data collection, whilst nine used PROMs alone and four used a toxicity grade alone. The survey received 56 responses. Only six respondents reported an existing late effect clinic (all tumour sites) in their region. A wide range of measures were used to assess dysphagia including 12 different PROMs. Instrumental assessments were used by most (98% Videofluoroscopy; 82% Fibreoptic Endoscopic Evaluation of Swallowing). Rehabilitation was offered by 86% and this was intensive in 34%. Late‐RAD patient information was routinely provided by 35 respondents and usually within 1 year of treatment completion. Conclusion A wide range of assessment methods and outcome measures were used to report dysphagia in existing literature but often in a unidimensional approach. In the United Kingdom, SLTs also use a variety of assessment tools and regularly offer intensive rehabilitation. Without consensus on how we measure late‐RAD, synthesising evidence to guide service provision is challenging. WHAT THIS PAPER ADDS What is already known on the subject Late‐RAD significantly affects swallowing function, often necessitating enteral feeding which in turn impacts emotional and health‐related quality of life. There is no existing guidance on optimum pathways, assessment methods or effective treatment options. What this paper adds to existing knowledge This study highlights the lack of consensus in the evidence base regarding how to assess and measure late‐RAD. In the United Kingdom, referral pathways are not well defined and there is wide variation on provision of information and specialist assessment and management of late‐RAD. What are the potential or clinical implications of this work? Challenges in synthesising existing studies translate to variations in practice due to a lack of guidelines. Without a robust evidence base, patients will experience geographical variation in how they are supported with their late‐RAD symptoms.

Background Autistic people commonly have physical and mental health conditions. They also frequently experience barriers to accessing healthcare, contributing to problems identifying and treating health conditions. These factors may lead to increased and earlier morbidity and lower average life expectancy for autistic people. Health checks specifically designed for autistic people, incorporating adjustments to healthcare, may help to overcome these barriers and reduce health inequalities. This trial aims to investigate the clinical and cost-effectiveness of a primary care health check for autistic adults and explore factors related to implementation such as acceptability and feasibility of delivery. The trial is co-designed and delivered by health professionals, autistic people, carers and supporters, and researchers. Methods This is a clinical and cost-effectiveness, cluster randomised controlled trial of a primary care health check for autistic adults. Primary care practices will be randomised into one of two groups (intervention or control). Two hundred autistic adults (aged 18 years and over) who provide baseline data will be recruited via participating practices. Data will be collected through quantitative and qualitative methods. The primary outcome will be the incidence of new health needs/conditions detected and met at 9 months (data gathered from participant’s GP records). Secondary outcomes will include the following: cost-effectiveness, measured as incremental cost per quality-adjusted life year gained over 9 months; the extent of health monitoring and health promotion needs met at 9 months; the incidence of social care needs identified at 9 months; changes in participant or carer general health; changes in quality of life; primary and secondary health and social care resource usage and costs. A qualitative study will explore views about the acceptability of the health check, its utility and future use. Discussion This study will examine the effectiveness and cost-effectiveness of a primary care health check for autistic adults in identifying new health conditions and needs. If the intervention is effective, it would provide strong evidence for implementation into routine healthcare, therefore enabling earlier health condition diagnosis and opportunities for treatment, reducing the health inequalities experienced by autistic people. Trial registration ISRCTN, retrospectively registered on 20 July 2023. https://www.isrctn.com/ISRCTN30156776 (ISRCTN registration number: 30156776).