Patient Experience of Hepatocellular Carcinoma and Their Treatment Goals: An International Qualitative Study and Patient Journey Map.

INTRODUCTION: Understanding the patient journey of hepatocellular carcinoma (HCC) may inform future clinical decision-making and enhance the patient experience. The objectives of this study were to explore the patient experience of HCC in relation to treatment options, treatment decision-making and treatment goals throughout the disease journey. This study also aimed to determine the symptoms and impacts of HCC across early, intermediate and advanced HCC. METHODS: Semi-structured 60-min interviews were conducted with n = 50 patients with HCC and n = 12 healthcare professionals (HCPs) with experience of treating patients with HCC. Interview data were analyzed using directed content analysis techniques with a hybrid inductive and deductive approach. An assessment of conceptual saturation was conducted for patients' symptom experience. RESULTS: Patients described treatment decisions as mostly HCP-led. In this study, surgery/resection was the most frequently offered treatment option across the HCC journey, and most patients were satisfied with the treatment options presented to them. Overall, patients described extending their overall survival (OS) and preserving quality of life (QoL) as their most important treatment goals, with patients diagnosed with advanced/unresectable HCC prioritizing QoL. HCPs also prioritized OS and progression-free survival (PFS) though reported that QoL became more important as HCC progressed. Patients experienced various symptoms across the HCC journey including fatigue, nausea, appetite loss, diarrhea and pain. CONCLUSION: Overall, HCPs and patients collaborate throughout the treatment journey regarding treatment decisions and shared treatment goals. OS is critically important to patients and HCPs, though treatment goals may change depending on various clinical factors.

Liver cancer is the third leading cause of cancer death worldwide. Very few studies have directly explored how patients experience liver cancer and its treatment. This research was performed to understand the patient experience of liver cancer including treatment decisions and goals, communication dynamics between patients and their treating doctors, the types of treatment offered to patients and symptoms that patients experience while living with liver cancer. Patients and doctors were interviewed to understand their experience of living with and treating liver cancer. Overall, patients and doctors work together to decide on treatment. Patients generally trusted their doctor's knowledge and expertise when selecting the best treatment(s) for them. Treatment decisions are mostly based on how far along the cancer has progressed. Patients described living longer and maintaining a good quality of life as their most important treatment goals, as well as avoiding liver cancer returning or worsening. Doctors identified that patients living longer, time without worsening of liver cancer and managing side effects as important treatment goals.

Development of the ARENA training programme for resilient performance in defense and security settings.

Defense and Security Personnel (DSP) often have to operate in the presence of stressful demands. Prior research has identified factors and processes associated with DSP being able to perform resiliently in demanding situations and settings. The aim of the present study was to develop a resilient performance training programme for UK defense and security operators. An intervention mapping (IM) method was used to guide the development of the programme. Typically, IM follows six sequential phases. In the present work, these phases were shaped by insights from prior research (e.g. systematic review and end user interviews), the input of a dedicated working group (N = 13) and from practitioner focus groups. During the IM process, the importance of programme flexibility was emphasized by practitioners. As such, the enAbling REsilieNt performAnce (ARENA) training programme was designed to be agile and include both face-to-face training and online learning modules. Theoretical behavior change principles, closely aligned to findings of earlier work on resilient defense and security performance, were used to underpin programme content and delivery. Future research should seek to gather data on the impact of the ARENA programme, in the targeted biological, psychological and social factors that previously been associated with resilient performances.

"Make it the done thing": an exploration of attitudes towards rest breaks, productivity and wellbeing while working from home.

OBJECTIVE: Taking regular rest breaks while working positively impacts productivity and wellbeing. While home and hybrid working styles have become a popular choice for employees, the impact of, and perceptions towards, taking breaks while working at home is poorly understood. The current research aimed to explore attitudes towards taking rest breaks while working from home and capture levels of breaks taken, wellbeing and productivity in a sample of UK white-collar workers. METHODS: A mixed method approach was applied where self-report data from an online survey were gathered from individuals (N = 140) from one organisation. Open-ended questions regarding attitudes and perceptions towards rest break behaviours were obtained. Further quantitative measures included the number of breaks taken while working from home, levels of productivity (measured by the Health and performance Presenteeism subscale) and mental wellbeing (measured by the Short Warwick-Edinburgh Mental wellbeing scale). Both quantitative and qualitative analysis approaches were applied. RESULTS: Qualitative responses indicated two overarching themes (1) Personal and (2) Organisational sat above four further themes including Movement outside, Structure of home working, Home environment and Digital presence. Additionally, quantitative findings indicated that the number of breaks taken outside was associated with positive changes in wellbeing. CONCLUSION: Employers could aim to support employees working from home in taking outside breaks through flexible working patterns, authentic leadership, and a change in company social norms around break behaviours. Such organisational changes could help to improve workforce productivity and wellbeing.

A scalable 12-week exercise and education programme reduces symptoms and improves function and wellbeing in people with hip and knee osteoarthritis.

Introduction: Osteoarthritis is a chronic musculoskeletal condition that impacts more than 300 million people worldwide, with 43 million people experiencing moderate to severe disability due to the disease. This service evaluation provides the results from a tailored blended model of care on joint health, physical function, and personal wellbeing. Methods: 1,593 adult participants with osteoarthritis completed the Nuffield Health Joint Pain Programme between February 2019 and May 2022. The 12-week programme included two 40-min exercise sessions per week. All exercise sessions were conducted face-to-face and were followed by 20 min of education to provide information and advice on managing osteoarthritis. Results: The 12-week joint pain programme significantly improved Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) global scores (Week 0: 37.5 [17.2]; Week 12: 24.0 [16.6]; p < 0.001), as well as subscales for pain (Week 0: 7.6 [3.7]; Week 12: 4.9 [3.7]; p < 0.001), function (Week 0: 26.0 [13.0]; Week 12: 16.3 [12.4]; p < 0.001), and stiffness (Week 0: 3.9 [1.6]; Week 12: 2.8 [1.7]; p < 0.001). Significant improvements in health-related outcomes including systolic and diastolic blood pressure (Week 0: 139 [18] mmHg; Week 12: 134 [17] mmHg, and Week 0: 82 [11] mmHg; Week 12: 79 [19] mmHg; both p < 0.001), body mass index (Week 0: 29.0 [4.5] kg/m2; Week 12: 28.6 [4.4] kg/m2; p < 0.001), waist to hip ratio (Week 0: 0.92 [0.23]; Week 12: 0.90 [0.11], p < 0.01) and timed up and go (Week 0: 10.8 s [2.9]; Week 12: 8.1 s [2.0]; p < 0.001) were also observed. On completion of the joint pain programme, participants also reported significant improvements in all assessed aspects of self-reported wellbeing (all p < 0.001). Discussion: With reductions in physical symptoms of osteoarthritis and improvements in personal wellbeing, the joint pain programme delivered by personal trainers in a gym-setting offers a nationally scalable, non-pharmacological treatment pathway for osteoarthritis.

A systematic review of resilient performance in defence and security settings.

A narrative systematic literature review was conducted to explore resilient performance in defence and security settings. A search strategy was employed across a total of five databases, searching published articles from 2001 onwards that assessed performance and optimal function in relation to resilience, in defence and security personnel. Following narrative synthesis, studies were assessed for quality. Thirty-two articles met inclusion criteria across a range of performance domains, including, but not limited to, course selection, marksmanship, land navigation, and simulated captivity. Some of the key findings included measures of mental toughness, confidence, and a stress-is-enhancing mindset being positively associated with performance outcomes. There was mixed evidence for the predictive value of biomarkers, although there was some support for cortisol, dehydroepiandrosterone sulfate (DHEA-S) and neuropeptide-y (NPY), and vagal reactivity. Interventions to improve resilient performance were focused on mindfulness or general psychological skills, with effects generally clearer on cognitive tasks rather than direct performance outcomes in the field. In sum, no single measure, nor intervention was consistently associated with performance over a range of domains. To inform future work, findings from the present review have been used to develop a framework of resilient performance, with the aim to promote theoretically informed work.

Indicators of Health-Related Quality of Life in Cats With Degenerative Joint Disease: Systematic Review and Proposal of a Conceptual Framework.

Objectives: The assessment of health-related quality of life (HRQoL) is becoming increasingly important in companion animals. This study describes a systematic review and development of a proposed conceptual framework to assess HRQoL in cats with osteoarthritis (OA). Methods: The conceptual framework was developed according to published guidelines. A comprehensive search of the CAB Direct, Scopus, PubMed, and Web of Science databases was carried out for publications in English from inception to November 12, 2019. Search words used were "cat", "feline", "chronic pain", "pain", and "quality of life". Publications were selected if they were full-text and peer-reviewed, based on primary data, and identified or measured behavioral symptoms of chronic musculoskeletal pain in cats. A systematic review was conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. A data extraction form was developed from categories identified in the literature review and piloted on a small number of studies to ascertain the appropriateness for relevant data extraction. Categories were then finalized, and key domains were identified. The domains were then synthesized to develop a conceptual framework. Results: A total of 454 studies were identified, of which 14 met the eligibility criteria and were included in the meta-synthesis. All 14 were assessed to be of good quality. Seven domains related to HRQoL in cats with OA were thematically identified from the data: mobility, physical appearance, energy and vitality, mood, pain expression, sociability, and physical and mental wellbeing. The three main HRQoL domains were pain expression, mobility, and physical and mental wellbeing, which impacted all the others. Pain and mobility impacted all six other domains, with increased pain and decreased mobility negatively impacting physical appearance, energy and vitality, mood, sociability, and physical and mental wellbeing. Conclusions and Relevance: This is the first study to develop an evidence-based conceptual framework for the assessment of HRQoL in cats with OA. The proposed conceptual framework suggests that effective management of chronic pain in cats may improve their overall HRQoL.

The burden of pharmacological treatment on health-related quality of life in people with a urea cycle disorder: a qualitative study.

BACKGROUND: Urea cycle disorders (UCD) are inborn errors of metabolism, typically presenting neonatally. Excess ammonia builds rapidly within the body risking hyperammonemic episodes and potentially death. Long-term management of the condition includes restrictive protein consumption, pharmacological interventions and, in extreme cases, liver transplantation. Pharmacological treatments such as sodium benzoate and sodium phenylbutyrate have proven effective but not without a multitude of negative attributes including poor taste, higher dosage and associated gastrointestinal discomfort that impacts health-related quality of life. Glycerol phenylbutyrate (GPB) has recently become a widely available pharmacological treatment with early reports of improved qualities, including taste and administration method. The following study aims to explore the burden of pharmacological treatment and the effects of the transition to GPB on health-related quality of life in people with a UCD. RESULTS: Nine carers of children living with a UCD (mean age = 12.44, SD = 10.26) were interviewed regarding their experiences of pharmacological treatment in relation to their, and their child's, health-related quality of life after transitioning to GPB. Three main themes were identified: psychological health, physical health and social participation. Carers struggled with anxiety surrounding their child's condition and the battle of administering medication. Medication administration was perceived to have improved since the transition to GPB, alleviating distress for both carer and child. Issues involving school were described, ranging from difficulties integrating their child into mainstream schooling and the impact of treatment on participation in school and extracurricular activities. Carers encountered issues sourcing syringes to administer GPB, which induced stress. It could be suggested that some burden had been relieved by the transition to GPB. However, it appeared that difficulties associated with the illness would persist despite treatment, owing to the continuing nature of the condition. CONCLUSIONS: Adhering to a strict pharmacological regime caused immense stress for both carers and children, severely impacting on typical social activities such as eating at a restaurant or going on holiday. GPB was perceived to have alleviated some burden in terms of administration given improved characteristics concerning taste and dosage, important characteristics for both carers and children living with UCD. Practitioners should consider these findings when making clinical decisions for children with UCD and the effect of pharmacological treatment on carer's health-related quality of life. Outreach work to facilitate greater understanding of the condition should be conducted with key locations, such as children's schools. This would also help to alleviate carer burden.

The challenges and facilitators to successful translation and adaptation of written self-report psychological measures into sign languages: A systematic review.

Deaf people are known to have significantly poorer reading comprehension skills when compared to their hearing counterparts. This poses significant threats to text-based psychological assessments. The plethora of text-based self-report measures available provides ample opportunity to translate/adapt existing tools from text to sign language. This paper systematically reviewed the challenges and facilitators faced in previous translations/adaptations with the view to inform recommendations for future practice. This paper reports the results of a Preferred Reporting Items for Systematic Reviews and Meta-Analyses-informed systematic review of 30 studies that had translated or discussed the translation of a written self-report measure into sign language following screening against inclusion/exclusion criteria. A systematic search (powered by EbscoHost Research Database and using search terms and Boolean operators), was performed in The Allied and Complementary Medicine Database (AMED), Cinahl, Medline, APA PsycInfo, and APA PsycArticles. The Quality Assessment with Diverse Studies tool was used for quality appraisal of the included papers. Challenges/facilitators to effective translation/adaptation were grouped under linguistic, procedural, and cultural. Examples of specific linguistic, procedural, cultural challenges, and facilitators are discussed in the context of previous research and study limitations. Translating/adapting text-based self-report measures to sign language is a linguistically and procedurally demanding endeavor that requires a deep bicultural/bilingual understanding of both deaf and hearing communities. The present results and recommendations can help researchers develop suitably accessible translated/adapted self-report psychological measures and this can have significant implications on healthcare service planning and delivery. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Scalable modEls of Community rehAbilitation for Individuals Recovering From COVID:19 reLated illnEss: A Longitudinal Service Evaluation Protocol-"SeaCole Cohort Evaluation".

Introduction: High levels of physical, cognitive, and psychosocial impairments are anticipated for those recovering from the COVID-19. In the UK, ~50% of survivors will require additional rehabilitation. Despite this, there is currently no evidence-based guideline available in England and Wales that addresses the identification, timing and nature of effective interventions to manage the morbidity associated following COVID-19. It is now timely to accelerate the development and evaluation of a rehabilitation service to support patients and healthcare services. Nuffield Health have responded by configuring a scalable rehabilitation pathway addressing the immediate requirements for those recovering from COVID-19 in the community. Methods and Analysis: This long-term evaluation will examine the effectiveness of a 12-week community rehabilitation programme for COVID-19 patients who have been discharged following in-patient treatment. Consisting of two distinct 6-week phases; Phase 1 is an entirely remote service, delivered via digital applications. Phase 2 sees the same patients transition into a gym-based setting for supervised group-based rehabilitation. Trained rehabilitation specialists will coach patients across areas such as goal setting, exercise prescription, symptom management and emotional well-being. Outcomes will be collected at 0, 6, and 12 weeks and at 6- and 12-months. Primary outcome measures will assess changes in health-related quality of life (HR-QOL) and COVID-19 symptoms using EuroQol Five Dimension Five Level Version (EQ-5D-5L) and Dyspnea-12, respectively. Secondary outcome measures of the Duke Activity Status Questionnaire (DASI), 30 s sit to stand test, General Anxiety Disorder-7 (GAD-7), Patient Health Questionnaire-9 (PHQ-9), Patient Experience Questionnaire (PEQ) and Quality Adjusted Life Years (QALY) will allow for the evaluation of outcomes, mediators and moderators of outcome, and cost-effectiveness of treatment. Discussion: This evaluation will investigate the immediate and long-term impact, as well as the cost effectiveness of a blended rehabilitation programme for COVID-19 survivors. This evaluation will provide a founding contribution to the literature, evaluating one of the first programmes of this type in the UK. The evaluation has international relevance, with the potential to show how a new model of service provision can support health services in the wake of COVID-19. Trial Registration: Current Trials ISRCTN ISRCTN14707226 Web: http://www.isrctn.com/ISRCTN14707226.