Psoriasis today: experiences of healthcare and impact on quality of life in a major UK cohort

Aim: To establish how people with psoriasis in the United Kingdom today experience living with their condition including diagnosis, treatment, healthcare provision and impact on daily life. Background: Psoriasis is a debilitating long-term inflammatory skin disease which can result in severe itching, discomfort and soreness, and may be associated with problems beyond the specific symptoms related to the skin. For many it is accompanied by difficult-to-manage treatment regimes, emotional distress and a negative impact on their quality of life and psychosocial functioning. To date there is little published information about the health experiences of people in the United Kingdom with psoriasis. Methods A postal self-administered questionnaire was completed by members of the Psoriasis Association and the responses analysed (n=1564). Findings The findings suggest some similarities to surveys in other nations, but specifically highlighted that patients feel under-informed and are dissatisfied with current treatment regimes. Responses provided an insight into aspects of the condition that treatments should be targeting. Specific areas of negative impact on psychosocial functioning were identified, including the lack of available support for those experiencing emotional distress. The research provides important information about how the care of patients with psoriasis can be improved, especially at primary care level. This includes: improved training in psoriasis knowledge and awareness at general practitioner level and greater use of dermatology specialist nurses in primary care settings; more effective and manageable treatment regimes that target visible areas and general well-being; greater support for emotional distress and psychosocial functioning.Peer reviewedFinal Accepted Versio

Efficacy of a compulsory homework programme for increasing physical activity and improving nutrition in children: A cluster randomised controlled trial

Background: Most physical activity interventions in children focus on the school setting; however, children typically engage in more sedentary activities and spend more time eating when at home. The primary aim of this cluster randomised controlled trial was to investigate the effects of a compulsory, health-related homework programme on physical activity, dietary patterns, and body size in primary school-aged children. Methods: A total of 675 children aged 7-10 years from 16 New Zealand primary schools participated in the Healthy Homework study. Schools were randomised into intervention and control groups (1:1 allocation). Intervention schools implemented an 8-week applied homework and in-class teaching module designed to increase physical activity and improve dietary patterns. Physical activity was the primary outcome measure, and was assessed using two sealed pedometers that monitored school- and home-based activity separately. Secondary outcome measures included screen-based sedentary time and selected dietary patterns assessed via parental proxy questionnaire. In addition, height, weight, and waist circumference were measured to obtain body mass index (BMI) and waist-to-height ratio (WHtR). All measurements were taken at baseline (T0), immediately post-intervention (T1), and 6-months post-intervention (T2). Changes in outcome measures over time were estimated using generalised linear mixed models (GLMMs) that adjusted for fixed (group, age, sex, group x time) and random (subjects nested within schools) effects. Intervention effects were also quantified using GLMMs adjusted for baseline values. Results: Significant intervention effects were observed for weekday physical activity at home (T1 [P < 0.001] and T2 [P = 0.019]), weekend physical activity (T1 [P < 0.001] and T2 [P < 0.001]), BMI (T2 only [P = 0.020]) and fruit consumption (T1 only [P = 0.036]). Additional analyses revealed that the greatest improvements in physical activity occurred in children from the most socioeconomically deprived schools. No consistent effects on sedentary time, WHtR, or other dietary patterns were observed. Conclusions: A compulsory health-related homework programme resulted in substantial and consistent increases in children's physical activity - particularly outside of school and on weekends - with limited effects on body size and fruit consumption. Overall, our findings support the integration of compulsory home-focused strategies for improving health behaviours into primary education curricula. Trial registration: Australian New Zealand Clinical Trials Registry, ACTRN12618000590268. Registered 17 April 2018. © 2019 The Author(s)

A UK online survey exploring patient perspectives of remote consultations for managing psoriasis and psoriatic arthritis during the SARS-CoV-2 pandemic

The use of remote consultations via telephone or video can contribute to the management of people with psoriasis and has allowed continuity of patient care throughout the SARS-CoV-2 pandemic, though little is known about the patient experience. The present study aimed to provide insights into the views and experiences of people with psoriasis and psoriatic arthritis on their remote consultations during the SARS-CoV-2 pandemic and develop guidance for patients and healthcare professionals on how to optimise future remote consultations. We conducted a cross-sectional, on-line survey of people with psoriasis and psoriatic arthritis. Data were analysed using descriptive statistics and Thematic Analysis. Overall, 126 people reported experiences of telephone (92%) or video (8%) consultations. Most participants were satisfied with (78%), and were happy for, remote consultations to continue (21%); few were not (5%). Others did not always want remote consultations (39%) and preferred alternating with face-to-face consultations (18%). Some wanted remote care during the pandemic only (17%). Five themes were identified: (1) Advantages of Remote Consultations; (2) Disadvantages of Remote Consultations plus sub-themes (2.1) Practical Issues and (2.2) the Absence of Non-Verbal Cues and Emotions; (3) Serving a Purpose; and (4) A ‘Good’ Remote Consultation; and (5) Advice to Other Patients. Remote consultations form an important part of psoriatic disease management, mainly for routine follow-up appointments in patients with stable disease, and in addition to face-to-face consultations. Additional skills training for clinicians could improve the quality of remote consultations

Stressors, Appraisal of Stressors, Experienced Stress and Cardiac Response: A Real-Time, Real-Life Investigation of Work Stress in Nurses

Background Stress in health care professionals may reflect both the work and appraisal of work and impacts on the individuals, their patients, colleagues and managers. Purpose The purpose of the present study is to examine physiological and psychological effects of stressors (tasks) and theory-based perceptions of work stressors within and between nurses in real time. Methods During two work shifts, 100 nurses rated experienced stress, affect, fatigue, theory-based measures of work stress and nursing tasks on electronic diaries every 90min, whereas heart rate and activity were measured continuously. Results Heart rate was associated with both demand and effort. Experienced stress was related to demand, control, effort and reward. Effort and reward interacted as predicted (but only within people). Results were unchanged when allowance was made for work tasks. Conclusions Real-time appraisals were more important than actual tasks in predicting both psychological and physiological correlates of stress. At times when effort was high, perceived reward reduced stress

A 12-week, whole-food carbohydrate-restricted feasibility study in overweight children

Background: Childhood obesity is a global health concern. Conventional nutrition guidelines have come under scrutiny in helping to achieve long-term healthy weight. An alternative carbohydrate-restricted, higher fat approach has shown to be effective in adults, but research is limited in youth.   Aim: To assess the feasibility of a 12-week whole-food, carbohydrate-restricted diet on weight loss and metabolic health.   Setting: Overweight children aged 8–13 years.   Methods: In this single-arm study, 25 overweight children were provided with whole-food, carbohydrate-restricted dietary guidelines. Primary outcomes – dietary acceptability, adherence and affordability – were assessed qualitatively weekly (telephone) and post-intervention (focus groups). Secondary outcomes – Body mass index (BMI), waist circumference, lipids and glycaemic control measures – were assessed at 0 and 12 weeks. Change scores were analysed using the t-statistic and interpreted using the statistical significance threshold, p < 0.05.   Results: Overall, dietary acceptability was mostly positive, and reports of affordability by parents were mixed. Attrition rates were high (48%); adherence was influenced, positively and negatively, by levels of support from friends and family. Completing children reduced BMI by 2.1 ± 1.5 kg.m2 (p < 0.05). Key blood parameter changes included a reduction in triglycerides (−0.17 ± 0.48 mmol/L; p = 0.242) and an increase in high-density lipoprotein (HDL) cholesterol (0.24 ± 0.19 mmol/L; p < 0.05).   Conclusion: Children achieved some weight loss and health outcome success using this dietary approach. For sustainable weight loss maintenance, full family and health professional support, particularly on a more intensive level at the start, may be required

The costs of preventing and treating chagas disease in Colombia

Background: The objective of this study is to report the costs of Chagas disease in Colombia, in terms of vector disease control programmes and the costs of providing care to chronic Chagas disease patients with cardiomyopathy. Methods: Data were collected from Colombia in 2004. A retrospective review of costs for vector control programmes carried out in rural areas included 3,084 houses surveyed for infestation with triatomine bugs and 3,305 houses sprayed with insecticide. A total of 63 patient records from 3 different hospitals were selected for a retrospective review of resource use. Consensus methodology with local experts was used to estimate care seeking behaviour and to complement observed data on utilisation. Findings: The mean cost per house per entomological survey was $4.4 (in US$ of 2004), whereas the mean cost of spraying a house with insecticide was $27. The main cost driver of spraying was the price of the insecticide, which varied greatly. Treatment of a chronic Chagas disease patient costs between$46.4 and $7,981 per year in Colombia, depending on severity and the level of care used. Combining cost and utilisation estimates the expected cost of treatment per patient-year is$1,028, whereas lifetime costs averaged $11,619 per patient. Chronic Chagas disease patients have limited access to healthcare, with an estimated 22% of patients never seeking care. Conclusion: Chagas disease is a preventable condition that affects mostly poor populations living in rural areas. The mean costs of surveying houses for infestation and spraying infested houses were low in comparison to other studies and in line with treatment costs. Care seeking behaviour and the type of insurance affiliation seem to play a role in the facilities and type of care that patients use, thus raising concerns about equitable access to care. Preventing Chagas disease in Colombia would be cost-effective and could contribute to prevent inequalities in health and healthcare.Wellcome Trus

Location of care for people with serious mental illness (LOCAPE) : implications for service use and costs using a mixed-methods approach

BackgroundThis study focuses on health care received by people with serious mental illness (SMI). The aim is to examine the economic implications of different locations of management of care and the views of service users and staff regarding services set up as alternatives to secondary care.ObjectivesSpecific objectives are to (1) identify people with SMI managed in primary or secondary care; (2) identify those who could be potentially transferred to primary care; (3) compare the characteristics of these groups; (4) compare service use and costs; (5) generate models to estimate cost changes following transfer between settings; (6) identify characteristics associated with time to transition to secondary care; (7) investigate experiences of patients receiving support from community-based interventions; and (8) assess the economic impact of interventions to facilitate transfer of care management.Methods(1) Quantitative component – using linked primary and secondary care data we examined differences between those discharged to primary care (n = 1410) and those still in secondary care (n = 1629). Service use and costs were compared and predictors of costs were identified using regression models. (2) Qualitative component – interviews following a topic guide were conducted at two time points with 31 people using and 10 people working in services set up as alternatives to secondary care. (3) Economic modelling – an analysis of the health-care costs of the above services compared with usual care was conducted using decision modelling. Data were obtained from local services where possible, and the time horizon was 12 months.Results(1) Quantitative component – characteristics of those discharged to primary care (n = 1410) were similar to those still in secondary care (n = 1629). Costs for those discharged to primary care were 48% lower than for those remaining in secondary care. Other variables strongly associated with costs were a history of violence and a diagnosis of schizophrenia or bipolar disorder. Few patients in secondary care had a high probability of primary care management and, therefore, excess costs were only around £150,000 across the sample. (2) Qualitative component – service users’ views about a community options team and a primary care support service were positive and compared favourably to services used previously. Views about peer support were slightly less consistent. Staff had concerns with regard to caseload sizes and staff turnover. (3) Economic modelling – services to help transition had costs that were 40% of those for standard care. The results of this showed that triaging patients into these services would save £1578 over a 1-year period and that the results were robust to changes in most parameters.LimitationsAnalysis was hindered by the extent to which data were available. Qualitative analyses were limited by the fact that most of the participants did not have a SMI as usually defined and that many had been out of contact with secondary services for a long period of time.ConclusionsCosts are substantially lower in primary care than secondary care, even after controlling for service-user patient differences. Generally, there is satisfaction with services to help facilitate primary care provision and these appear to be cost saving. Future work should continue the analysis of linked data and involve a more comprehensive evaluation of the specific services investigated here.FundingThe National Institute for Health Research Health Services and Delivery Research programme

Implementation of the PsoWell™ model for the management of people with complex psoriasis

The Psoriasis and Well-being (PsoWell)™ training programme, incorporating motivational interviewing, improves clinicians’ knowledge and skills to manage complex psoriasis, including behaviour change. The aims of this study were to deliver the PsoWell™ training programme to dermatology specialists, and to evaluate the acceptability and feasibility of implementing the PsoWell™ model across dermatology services. Framework analysis of 19 qualitative semi-structured interviews was performed, following delivery of nine, 1-day PsoWell™ training days involving 119 participants. Two themes were identified: “Perceptions and Priorities” and “Awareness”, sub-divided into: “Awareness Not Competence” and “Increasing Awareness”. The PsoWell™ model was found to be acceptable and feasible to implement across dermatology settings. Participants were more skilled and motivated to address psycho­logical issues, including behaviour change, but wanted further training to ensure competency. The trainees claimed that scepticism among some colleagues regarding whole-patient management might prevent uptake. Data show­ing the impact on health outcomes are needed and might overcome scepticism. Remote consultation could adopt the PsoWell™ approach

Serum neurofilament dynamics predicts neurodegeneration and clinical progression in presymptomatic Alzheimer's disease

Neurofilament light chain (NfL) is a promising fluid biomarker of disease progression for various cerebral proteopathies. Here we leverage the unique characteristics of the Dominantly Inherited Alzheimer Network and ultrasensitive immunoassay technology to demonstrate that NfL levels in the cerebrospinal fluid (n = 187) and serum (n = 405) are correlated with one another and are elevated at the presymptomatic stages of familial Alzheimer's disease. Longitudinal, within-person analysis of serum NfL dynamics (n = 196) confirmed this elevation and further revealed that the rate of change of serum NfL could discriminate mutation carriers from non-mutation carriers almost a decade earlier than cross-sectional absolute NfL levels (that is, 16.2 versus 6.8 years before the estimated symptom onset). Serum NfL rate of change peaked in participants converting from the presymptomatic to the symptomatic stage and was associated with cortical thinning assessed by magnetic resonance imaging, but less so with amyloid-β deposition or glucose metabolism (assessed by positron emission tomography). Serum NfL was predictive for both the rate of cortical thinning and cognitive changes assessed by the Mini-Mental State Examination and Logical Memory test. Thus, NfL dynamics in serum predict disease progression and brain neurodegeneration at the early presymptomatic stages of familial Alzheimer's disease, which supports its potential utility as a clinically useful biomarker