The cost of providing care by family and friends (informal care) in the last year of life: A population observational study.

INTRODUCTION: Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases. AIM: To estimate informal caregiving costs and explore the relationship with carer and decedent characteristics. DESIGN: National observational study of bereaved carers. Questions included informal end-of-life caregiving into the 2017 Health Survey for England including estimated recalled frequency, duration and intensity of care provision. We estimated replacement costs for a decedent's last year of life valuing time at the price of a substitutable activity. Spearman rank correlations and multivariable linear regression were used to explore relationships with last year of life costs. SETTING/PARTICIPANTS: Adult national survey respondents - England. RESULTS: A total of 7997 adults were interviewed from 5767/9612 (60%) of invited households. Estimated replacement costs of personal care and other help were £27,072 and £13,697 per carer and a national cost of £13.2 billion and £15.5 billion respectively. Longer care duration and intensity, older age, death at home (lived together), non-cancer cause of death and greater deprivation were associated with increased costs. Female sex, and not accessing 'other care services' were related to higher costs for other help only. CONCLUSION: We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population.

A pilot examination of the validity of stylus and finger drawing on visuomotor-mediated tests on ACEmobile.

INTRODUCTION: Cognitive assessments, such as the Addenbrooke's Cognitive Examination (ACE-III) and Montreal Cognitive Assessment (MoCA), have been modified for administration using tablet computers. While this offers important advantages for practice, it may also threaten the test validity. The current study sought to test whether administering visuospatial and writing tests using a tablet (finger or stylus drawing), would demonstrate equivalence to traditional pencil and paper administration on ACEmobile. METHOD: This study recruited 26 participants with Alzheimer's disease and 23 healthy older adults. Most participants had low familiarity with using a tablet computer. Participants completed ACEmobile in its entirety, after which they repeated the infinity loops, cube, and clock drawing and sentence writing tests by drawing with a stylus and their finger onto an iPad. Performance on the drawing and writing tests using a stylus, finger, and pencil were compared. RESULTS: Statistically significant differences were observed between the finger and pencil administration on the ACEmobile, with participants performing worse on the finger drawing trials. Differences in scores were most apparent on the sentence writing task. In contrast, no statistical differences were observed between the pencil and stylus administration. DISCUSSION: The findings of this pilot study have important implications for clinical neuropsychology and demonstrate that administering ACEmobile drawing tests with finger drawing is invalid. However, due to the small sample size, a lack of counterbalancing and the narrow range of scores of the dependent variable, we are unable to confidently interpret the validity of stylus drawing. This is an important consideration for future research.

Enhanced analysis of somatosensory evoked potentials at 20-30 milliseconds can predict neurological outcome after cardiac arrest.

OBJECTIVE: This study attempted to test the effectiveness of an enhanced analysis of the 20-30 ms complex of somatosensory evoked potentials, in predicting the short-term outcome of comatose survivors of out of hospital cardiac arrest and compare it with the current clinical practice. METHODS: Single-centre, prospective, observational study. Median nerve SSEP recording performed at 24-36 h post-return of spontaneous circulation. Recording was analysed using amplitude measurements of P25/30 and Peak-To-Trough of 20-30 ms complex and thresholds to decide P25/30 presence. Neurological outcome was dichotomised into favourable and unfavourable. RESULTS: 89 participants were analysed. 43.8% had favourable and 56.2% unfavourable outcome. The sensitivity, specificity, positive and negative predictive values of the present SSEP and favourable outcome were calculated. P25/30 presence and size of PTT improved positive predictive value and specificity, while maintained similar negative predictive value and sensitivity, compared to the current practice. Inter-interpreter agreement was also improved. CONCLUSIONS: Enhanced analysis of the SSEP at 20-30 ms complex could improve the short-term prognostic accuracy for short-term neurological outcome in comatose survivors of cardiac arrest. SIGNIFICANCE: Peak-To-Trough analysis of the 20-30 ms SSEP waveform appears to be the best predictor of neurological outcome following out of hospital cardiac arrest. It is also the easiest and most reliable to analyse.

Motivational support intervention to reduce smoking and increase physical activity in smokers not ready to quit: the TARS RCT.

Background: Physical activity can support smoking cessation for smokers wanting to quit, but there have been no studies on supporting smokers wanting only to reduce. More broadly, the effect of motivational support for such smokers is unclear. Objectives: The objectives were to determine if motivational support to increase physical activity and reduce smoking for smokers not wanting to immediately quit helps reduce smoking and increase abstinence and physical activity, and to determine if this intervention is cost-effective. Design: This was a multicentred, two-arm, parallel-group, randomised (1 : 1) controlled superiority trial with accompanying trial-based and model-based economic evaluations, and a process evaluation. Setting and participants: Participants from health and other community settings in four English cities received either the intervention (n = 457) or usual support (n = 458). Intervention: The intervention consisted of up to eight face-to-face or telephone behavioural support sessions to reduce smoking and increase physical activity. Main outcome measures: The main outcome measures were carbon monoxide-verified 6- and 12-month floating prolonged abstinence (primary outcome), self-reported number of cigarettes smoked per day, number of quit attempts and carbon monoxide-verified abstinence at 3 and 9 months. Furthermore, self-reported (3 and 9 months) and accelerometer-recorded (3 months) physical activity data were gathered. Process items, intervention costs and cost-effectiveness were also assessed. Results: The average age of the sample was 49.8 years, and participants were predominantly from areas with socioeconomic deprivation and were moderately heavy smokers. The intervention was delivered with good fidelity. Few participants achieved carbon monoxide-verified 6-month prolonged abstinence [nine (2.0%) in the intervention group and four (0.9%) in the control group; adjusted odds ratio 2.30 (95% confidence interval 0.70 to 7.56)] or 12-month prolonged abstinence [six (1.3%) in the intervention group and one (0.2%) in the control group; adjusted odds ratio 6.33 (95% confidence interval 0.76 to 53.10)]. At 3 months, the intervention participants smoked fewer cigarettes than the control participants (21.1 vs. 26.8 per day). Intervention participants were more likely to reduce cigarettes by ≥ 50% by 3 months [18.9% vs. 10.5%; adjusted odds ratio 1.98 (95% confidence interval 1.35 to 2.90] and 9 months [14.4% vs. 10.0%; adjusted odds ratio 1.52 (95% confidence interval 1.01 to 2.29)], and reported more moderate-to-vigorous physical activity at 3 months [adjusted weekly mean difference of 81.61 minutes (95% confidence interval 28.75 to 134.47 minutes)], but not at 9 months. Increased physical activity did not mediate intervention effects on smoking. The intervention positively influenced most smoking and physical activity beliefs, with some intervention effects mediating changes in smoking and physical activity outcomes. The average intervention cost was estimated to be £239.18 per person, with an overall additional cost of £173.50 (95% confidence interval -£353.82 to £513.77) when considering intervention and health-care costs. The 1.1% absolute between-group difference in carbon monoxide-verified 6-month prolonged abstinence provided a small gain in lifetime quality-adjusted life-years (0.006), and a minimal saving in lifetime health-care costs (net saving £236). Conclusions: There was no evidence that behavioural support for smoking reduction and increased physical activity led to meaningful increases in prolonged abstinence among smokers with no immediate plans to quit smoking. The intervention is not cost-effective. Limitations: Prolonged abstinence rates were much lower than expected, meaning that the trial was underpowered to provide confidence that the intervention doubled prolonged abstinence. Future work: Further research should explore the effects of the present intervention to support smokers who want to reduce prior to quitting, and/or extend the support available for prolonged reduction and abstinence. Trial registration: This trial is registered as ISRCTN47776579. Funding: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 27, No. 4. See the NIHR Journals Library website for further project information.

NHS pharmacological and behavioural support helps smokers wanting to quit, and physical activity may also help. It is unclear if behavioural support for those not ready to quit may lead to more quit attempts and abstinence from smoking. A total of 915 smokers who wanted to reduce their smoking, but who had not yet quit, were recruited and randomised to receive an intervention or brief support as usual (brief advice to quit), in Plymouth, London, Oxford and Nottingham. The intervention involved up to eight sessions (by telephone or in person) of motivational support to reduce smoking and increase physical activity (and more sessions to support a quit attempt). Participants self-reported smoking and physical activity information at the start of the trial and after 3 and 9 months. Self-reported quitters confirmed their abstinence with a biochemical test of expired air or saliva. Our main interest was in whether or not the groups differed in the proportion who remained abstinent for at least 6 months. Overall, only 1­2% remained abstinent for 6 months. Although it appeared that a greater proportion did so after receiving the intervention, because few participants were abstinent, the results are not conclusive. However, the intervention had beneficial effects on less rigorous outcomes, including a reduction in the self-reported number of cigarettes smoked, and a greater proportion of intervention than control participants with self-reported and biochemically verified abstinence at 3 months. The intervention also helped participants to reduce, by at least half, the number of cigarettes they smoked at 3 and 9 months, and to report more physical activity, but only at 3 months. Despite reasonable intervention engagement and some short-term changes in smoking and physical activity, the trial does not provide evidence that this intervention would help smokers to quit for at least 6 months nor would it be cost-effective, with an average cost of £239 per smoker.

Effectiveness and cost-effectiveness of behavioural support for prolonged abstinence for smokers wishing to reduce but not quit: Randomised controlled trial of physical activity assisted reduction of smoking (TARS).

AIMS: For smokers unmotivated to quit, we assessed the effectiveness and cost-effectiveness of behavioural support to reduce smoking and increase physical activity on prolonged abstinence and related outcomes. DESIGN: A multi-centred pragmatic two-arm parallel randomised controlled trial. SETTING: Primary care and the community across four United Kingdom sites. PARTICIPANTS: Nine hundred and fifteen adult smokers (55% female, 85% White), recruited via primary and secondary care and the community, who wished to reduce their smoking but not quit. INTERVENTIONS: Participants were randomised to support as usual (SAU) (n = 458) versus multi-component community-based behavioural support (n = 457), involving up to eight weekly person-centred face-to-face or phone sessions with additional 6-week support for those wishing to quit. MEASUREMENTS: Ideally, cessation follows smoking reduction so the primary pre-defined outcome was biochemically verified 6-month prolonged abstinence (from 3-9 months, with a secondary endpoint also considering abstinence between 9 and 15 months). Secondary outcomes included biochemically verified 12-month prolonged abstinence and point prevalent biochemically verified and self-reported abstinence, quit attempts, number of cigarettes smoked, pharmacological aids used, SF12, EQ-5D and moderate-to-vigorous physical activity (MVPA) at 3 and 9 months. Intervention costs were assessed for a cost-effectiveness analysis. FINDINGS: Assuming missing data at follow-up implied continued smoking, nine (2.0%) intervention participants and four (0.9%) SAU participants achieved the primary outcome (adjusted odds ratio, 2.30; 95% confidence interval [CI] = 0.70-7.56, P = 0.169). At 3 and 9 months, the proportions self-reporting reducing cigarettes smoked from baseline by ≥50%, for intervention versus SAU, were 18.9% versus 10.5% (P = 0.009) and 14.4% versus 10% (P = 0.044), respectively. Mean difference in weekly MVPA at 3 months was 81.6 minutes in favour of the intervention group (95% CI = 28.75, 134.47: P = 0.003), but there was no significant difference at 9 months (23.70, 95% CI = -33.07, 80.47: P = 0.143). Changes in MVPA did not mediate changes in smoking outcomes. The intervention cost was £239.18 per person, with no evidence of cost-effectiveness. CONCLUSIONS: For United Kingdom smokers wanting to reduce but not quit smoking, behavioural support to reduce smoking and increase physical activity improved some short-term smoking cessation and reduction outcomes and moderate-to-vigorous physical activity, but had no long-term effects on smoking cessation or physical activity.

Parents' experiences with a sick or injured child during the COVID-19 lockdown: an online survey in the Netherlands.

OBJECTIVE: To assess the impact of the COVID-19 lockdown on parents' health-seeking behaviour and care for a sick or injured child in the Netherlands. DESIGN AND SETTING: An online survey on parents' experiences with a sick or injured child during the COVID-19 lockdown periods was disseminated through social media. PARTICIPANTS: Parents living in the Netherlands with a sick or injured child during the lockdown periods from March to June 2020 and from December 2020 to February 2021 were eligible to participate. OUTCOME MEASURES: Descriptive statistics and thematic analysis were used to analyse family and children's characteristics, parents' response to a sick or injured child, and the perceived impact of the lockdown on child's severity of illness and treatment reported by parents. Analyses were stratified for children with and without chronic conditions. RESULTS: Of the 105 parents who completed the survey, 83% reported they would have sought medical help before lockdown compared with 88% who did seek help during lockdown for the same specific medical problem. Parents reported that changes in health services affected their child's severity of illness (31%) and their treatment (39%), especially for children with chronic conditions. These changes included less availability of healthcare services and long waiting lists, which mostly led to worsening of the child's illness. During lockdown, there was no change in health-seeking behaviour by parents of children with a chronic condition (N=51) compared with parents of children without a chronic condition. CONCLUSION: Parents in the Netherlands who completed the survey were not deterred from seeking medical help for their sick or injured child during the COVID-19 lockdown periods. However, changes in health services affected child's severity of illness and treatment, especially for children with chronic conditions.

Caring for a sick or injured child during the COVID-19 pandemic lockdown in 2020 in the UK: An online survey of parents' experiences.

BACKGROUND: During the COVID-19 pandemic, the first UK lockdown (March to May 2020) witnessed a dramatic reduction in children presenting to primary/emergency care, creating concern that fear of the virus was resulting in children presenting late. METHODS: An online survey was co-developed with UK parents to understand the impact of the lockdown on parents' help-seeking for, and care of, their sick/injured child(ren). The survey was advertised through social media and snowballing to parents whose children had been ill/injured during the lockdown. Analysis used descriptive statistics, SPSSv25 and thematic analysis. RESULTS: The survey was fully completed by 198 UK parents. The majority asked for help (144/198): from their family doctor (78), national helplines (48) or an Emergency Department (23). Most reported that their decision-making had not changed, although how they sought help had changed. A few parents reported that the severity and duration of illness had increased because of uncertainty about and/or difficulty accessing services. Parents did not always report seeking help for symptoms rated red or amber by the Royal College of Paediatrics and Child Health. Parents reported accessing information through the internet or using information that they already had. PARENT CONTRIBUTION: This was a collaboration with parents from survey development to dissemination, with two parents being integral members of our research team. CONCLUSIONS: Our questionnaire was completed by parents who were not deterred from seeking help for their sick or injured children. Even for these parents, the lockdown changes to services created uncertainty about, and barriers to, accessing medical help for their children.

Randomised controlled trial of tailored support to increase physical activity and reduce smoking in smokers not immediately ready to quit: protocol for the Trial of physical Activity-assisted Reduction of Smoking (TARS) Study.

INTRODUCTION: Smoking reduction can lead to increased success in quitting. This study aims to determine if a client-focused motivational support package for smoking reduction (and quitting) and increasing (or otherwise using) physical activity (PA) can help smokers who do not wish to quit immediately to reduce the amount they smoke, and ultimately quit. This paper reports the study design and methods. METHODS AND ANALYSIS: A pragmatic, multicentred, parallel, two group, randomised controlled superiority clinical trial, with embedded process evaluation and economics evaluation. Participants who wished to reduce smoking with no immediate plans to quit were randomised 1:1 to receive either (1) tailored individual health trainer face-to-face and/or telephone support to reduce smoking and increase PA as an aid to smoking reduction (intervention) or (2) brief written/electronic advice to reduce or quit smoking (control). Participants in both arms of the trial were also signposted to usual local support for smoking reduction and quitting. The primary outcome measure is 6-month carbon monoxide-confirmed floating prolonged abstinence following participant self-reported quitting on a mailed questionnaire at 3 and 9 months post-baseline. Participants confirmed as abstinent at 9 months will be followed up at 15 months. ETHICS AND DISSEMINATION: Approved by SW Bristol National Health Service Research Committee (17/SW/0223). Dissemination will include publication of findings for the stated outcomes, parallel process evaluation and economic evaluation in peer-reviewed journals. Results will be disseminated to trial participants and healthcare providers. TRIAL REGISTRATION NUMBER: ISRCTN47776579; Pre-results.

Contrasting impact of androgens on male and female adiposity, fat distribution and insulin resistance in childhood and adolescence (EarlyBird 75).

OBJECTIVES: To investigate associations between androgens (testosterone, dehydroepiandrosterone sulphate [DHEAS] and androstenedione), adiposity, fat distribution and insulin resistance (IR) during childhood and adolescence. METHODS: Three hundred and seven children (170 [55.4%] boys; 137 [44.6%] girls) recruited at age 5 and studied annually until age 16: androgens (liquid chromatography tandem-mass spectrometry), anthropometry, body composition (dual-energy x-ray absorptiometry) and IR (homeostasis model assessment). RESULTS: Early adiposity was associated with earlier detection of androstenedione in both sexes, and DHEAS in boys. At puberty, higher androgen levels were associated with favourable metabolic changes in boys, but adverse metabolic effects in girls. In boys, higher free testosterone (FT) was associated with lower body fat and android/gynoid fat ratio (AGR) (both P < .001), but in girls higher total testosterone was associated with higher AGR. In girls only, higher androstenedione (P = .02) and FT (P = .01) was associated with higher IR during puberty. CONCLUSIONS: In pre-pubertal children, adiposity is associated with higher secretion of androgen precursors. After pubertal onset, higher testosterone is associated with lower adiposity and AGR in boys, but higher AGR and IR in girls. Therefore, androgens have modest sex-specific associations with children's total body fat, fat distribution and IR.

SAFE, a new therapeutic intervention for families of children with autism: a randomised controlled feasibility trial.

OBJECTIVES: To establish the feasibility of a definitive randomised controlled trial of Systemic Autism-related Family Enabling (SAFE), an intervention for families of children with autism. DESIGN: A randomised, controlled, multicentred feasibility study. SETTING: Participants were identified from three National Health Service (NHS) diagnosing centres in Plymouth and Cornwall and a community pathway. PARTICIPANTS: 34 families of a child with a diagnosis of autism severity level 1 or 2 between 3 and 16 years. Four families were lost to follow-up. INTERVENTIONS: SAFE is a manualised five-session family therapy-based intervention delivered over 16 weeks and designed for families of children with autism. SAFE involves families attending five 3-hour sessions led by systemic practitioners. PRIMARY AND SECONDARY OUTCOME MEASURES: The proposed primary outcome measure was the Systemic CORE 15 (SCORE-15). Proposed secondary outcome measures: Patient Health Questionnaire-Somatic Anxiety Depressive Symptoms, the Coding of Attachment-Related Parenting for use with children with Autism, the Child Behaviour Checklist (CBCL), the Reflective Functioning Questionnaire (RFQ) and the Caregiving Helplessness Questionnaire. Outcome measures were collected at baseline and 24 weeks post randomisation. RESULTS: All primary caregivers retained in the study completed the SCORE-15 at both time points. 34 of the target of 36 families were recruited and 88% of families were retained. Training for therapists was effective. Feedback revealed willingness to undergo randomisation. There was 100% attendance at appropriate sessions for core family members. The SCORE-15 showed reduction in scores for families receiving SAFE compared with controls suggesting positive change. Qualitative data also revealed that families found the study acceptable and families receiving SAFE experienced positive change. Feedback indicated that the SCORE-15 should be retained as a primary measure in a future trial, but secondary measures should be reduced. CONCLUSIONS: This study indicates that a larger trial of SAFE is feasible. Findings suggest that SAFE can address current gaps in recommended care, can be confidently delivered by NHS staff and has potential as a beneficial treatment. TRIAL REGISTRATION NUMBERS: ISCTRN83964946 and IRAS213527.

What Is the Longitudinal Profile of Impairments and Can We Predict Difficulty Caring for the Profoundly Affected Arm in the First Year Poststroke?

OBJECTIVES: To establish the longitudinal profile of impairments of body functions and activity limitations of the arm, and to evaluate potential predictors of difficulty caring for the profoundly affected arm poststroke. DESIGN: Prospective cohort study. SETTING: Stroke services. PARTICIPANTS: People unlikely to regain functional use of the arm (N=155) were recruited at 2 to 4 weeks poststroke, and followed up at 3, 6, and 12 months. Potential predictors at baseline were hypertonicity, pain, motor control, mood, sensation/perception, age, and stroke severity. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Difficulty caring for the arm (Leeds Arm Spasticity Impact Scale), pain, hypertonicity, range of movement, arm function, and skin integrity. Multivariable linear regression identified the best fitting model for predicting Leeds Arm Spasticity Impact Scale score at 12 months. RESULTS: There were 110 participants (71%) reviewed at 1 year. There was a large variation in the profile of arm functions and activity limitations. Inability or severe difficulty caring for the arm affected 29% of participants. Hypertonicity developed in 77%, with severe hypertonicity present in 25%. Pain was reported by 65%, 94% developed shoulder contracture, and 6% had macerated skin. Difficulty caring for the arm increased with age, greater level of hypertonicity, and stroke classification; collectively, these factors accounted for 33% of the variance in Leeds Arm Spasticity Impact Scale scores. CONCLUSIONS: At 1 year poststroke, there was a high incidence of impairments of body functions and activity limitations in people with a profoundly affected arm. Individual profiles were very variable and although some predisposing factors have been identified, it remains difficult to predict who is at greatest risk.