Feasibility of home-based exercise training during adjuvant treatment for metastatic castrate-resistant prostate cancer patients treated with an androgen receptor pathway inhibitor (EXACT).

BACKGROUND: Exercise is an effective adjuvant therapy that can alleviate treatment-related toxicities for men with prostate cancer (PC). However, the feasibility of delivering exercise training to men with advanced disease and the wider impact on clinical outcomes remain unknown. The purpose of the EXACT trial was to determine the feasibility and effects of home-based exercise training in men with metastatic castrate-resistant prostate cancer (mCRPC). METHODS: Patients with mCRPC receiving ADT + an androgen receptor pathway inhibitor (ARPI) were prescribed 12 weeks of home-based, remotely monitored, moderate intensity, aerobic and resistance exercise. Feasibility was assessed using recruitment, retention and adherence rates. Safety and adverse events were monitored throughout, with functional and patient-reported outcomes captured at baseline, post-intervention and at 3-month follow-up. RESULTS: From the 117 screened, 49 were deemed eligible and approached, with 30 patients providing informed consent (61% recruitment rate). Of those who consented, 28 patients completed baseline assessments, with 24 patients completing the intervention and 22 completing follow-up (retention rates: 86% and 79% respectively). Task completion was excellent throughout, with no intervention-related adverse events recorded. Self-reported adherence to the overall intervention was 82%. Exercise training decreased mean body mass (-1.5%), improved functional fitness (> 10%) and improved several patient-reported outcomes including clinically meaningful changes in fatigue (p = 0.042), FACT-G (p = 0.054) and FACT-P (p = 0.083), all with moderate effect sizes. CONCLUSION: Home-based exercise training, with weekly remote monitoring, was feasible and safe for men with mCRPC being treated with an ARPI. Given that treatment-related toxicities accumulate throughout the course of treatment, and as a result, negatively impact functional fitness and health-related quality of life (HRQoL), it was positive that exercise training improved or prevented a decline in these clinically important variables and could better equip patients for future treatment. Collectively, these preliminary feasibility findings support the need for a definitive, larger RCT, which downstream may lead to the inclusion of home-based exercise training as part of adjuvant care for mCRPC.

Children and young people's experiences of living with rare diseases: An integrative review.

PROBLEM: Rare diseases are any disease affecting fewer than five people in 10,000. More than 8000 rare diseases and 50-75% of all rare diseases affect children. The purpose of this review was to critically appraise and synthesize existing literature relating to the impact of rare diseases on children's day-to-day lives. ELIGIBILITY CRITERIA: An integrative literature review was conducted using the CINAHL Plus, PsycINFO, and PubMed databases. Studies were included if they were a primary source was published between the years 2005 and 2019 and written in the English language. SAMPLE: Eight primary sources met the inclusion criteria. RESULTS: Seven main themes emerged from the review as follows: (i) the experience of stigmatisations, (ii) self-consciousness, (iii) restrictions in independent living, (iv) developing resilience/coping strategies, (v) psychological and emotional impact, (vi) social impact vs social connectedness and (vii) transition challenges. CONCLUSIONS: The experience of having a rare illness differed across different age groups. Children (typically aged 3-10) with rare diseases generally view themselves and their lives the same way like their healthy peers. They were more likely to report being adaptive and resilient than those aged 12 or older. Young people reported being different compared to young children, and they faced numerous challenges related to their illness. IMPLICATIONS FOR PRACTICE: To provide the best possible level of care for children and families with rare disorders, health services must be informed and equipped to provide the necessary supports specific to the unique needs of children and young people living with rare diseases.

Investigating the physical activity, health, wellbeing, social and environmental effects of a new urban greenway: a natural experiment (the PARC study).

BACKGROUND: Evidence for the health benefits of urban green space tends to stem from small, short-term quasi-experimental or cross-sectional observational research, whilst evidence from intervention studies is sparse. The development of an urban greenway (9 km running along 3 rivers) in Northern Ireland provided the opportunity to conduct a natural experiment. This study investigated the public health impact of the urban greenway on a range of physical activity, health, wellbeing, social, and perceptions of the environment outcomes. METHODS: A repeated cross-sectional household survey of adult residents (aged ≥16 years) who lived ≤1-mile radius of the greenway (intervention sample) and > 1-mile radius of the greenway (control sample) was conducted pre (2010/2011) and 6-months post implementation (2016/2017). We assessed changes in outcomes pre- and post-intervention follow-up including physical activity behaviour (primary outcome measure: Global Physical Activity Questionnaire), quality of life, mental wellbeing, social capital and perceptions of the built environment. Linear regression was used to calculate the mean difference between post-intervention and baseline measures adjusting for age, season, education, car ownership and deprivation. Multi-level models were fitted using a random intercept at the super output area (smallest geographical unit) to account for clustering within areas. The analyses were stratified by distance from the greenway and deprivation. We assessed change in the social patterning of outcomes over time using an ordered logit to make model-based outcome predictions across strata. RESULTS: The mean ages of intervention samples were 50.3 (SD 18.9) years at baseline (n = 1037) and 51.7 (SD 19.1) years at follow-up (n = 968). Post-intervention, 65% (adjusted OR 0.60, 95% CI 0.35 to 1.00) of residents who lived closest to the greenway (i.e., ≤400 m) and 60% (adjusted OR, 0.64 95% CI 0.41 to 0.99) who lived furthest from the greenway (i.e.,≥1200 m) met the physical activity guidelines - 68% of the intervention sample met the physical activity guidelines before the intervention. Residents in the most deprived quintiles had a similar reduction in physical activity behaviour as residents in less deprived quintiles. Quality of life at follow-up compared to baseline declined and this decline was significantly less than in the control area (adjusted differences in mean EQ5D: -11.0 (95% CI - 14.5 to - 7.4); - 30.5 (95% CI - 37.9 to - 23.2). Significant change in mental wellbeing was not observed despite improvements in some indicators of social capital. Positive perceptions of the local environment in relation to its attractiveness, traffic and safety increased. CONCLUSIONS: Our findings illustrate the major challenge of evaluating complex urban interventions and the difficulty of capturing and measuring the network of potential variables that influence or hinder meaningful outcomes. The results indicate at this stage no intervention effect for improvements in population-level physical activity behaviour or mental wellbeing. However, they show some modest improvements for secondary outcomes including positive perceptions of the environment and social capital constructs. The public health impact of urban greenways may take a longer period of time to be realised and there is a need to improve evaluation methodology that captures the complex systems nature of urban regeneration.

Exploring the impact of ineligibility on individuals expressing interest in a trial aimed at improving daily functioning regarding perceptions of self, research and likelihood of future participation.

BACKGROUND: Eligibility guidelines in research trials are necessary to minimise confounds and reduce bias in the interpretation of potential treatment effects. There is limited extant research investigating how being deemed ineligible for such trials might impact patients' perceptions of themselves and of research. Better understanding of the impact of patient ineligibility could enhance design and implementation of future research studies. METHODS: Eight semi-structured telephone interviews were conducted to explore the impact of ineligibility on self-perceptions; perceptions regarding the nature of research; and the likelihood of expressing interest in future research. Data were collected and analysed thematically through inductive, interpretive phenomenological analysis (IPA). RESULTS: Five themes emerged regarding the experience of being deemed ineligible: (1) Being deemed ineligible is emotion and reaction evoking; (2) 'Doing your bit': Helping others and increasing the value of research; (3) Communication of ineligibility; (4) Appreciation for those who express interest; and (5) Subsequent perceptions and attitudes towards research. CONCLUSIONS: The results suggest that being deemed ineligible can elicit negative emotional outcomes but is not likely to change perceptions of or attitudes towards research, possibly due to a desire to help similar others. Ineligibility can impact future participation in some cases, thus reducing the recruitment pool for subsequent research studies. Recommendations are provided to help minimise this risk. Advising of ineligibility in a personal way is recommended: with enhanced clarity regarding the reasoning behind the decision; providing opportunities to ask questions; and ensuring that appreciation for the patient's time and interest are communicated.

A Randomized Noninferiority Trial of Wearing Adjustable Glasses versus Standard and Ready-made Spectacles among Chinese Schoolchildren: Wearability and Evaluation of Adjustable Refraction III.

PURPOSE: To compare wear of standard, adjustable, and ready-made glasses among children. DESIGN: Randomized, controlled, open-label, noninferiority trial. PARTICIPANTS: Students aged 11 to 16 years with presenting visual acuity (VA) ≤6/12 in both eyes, correctable to ≥6/7.5, subjective spherical equivalent refractive error (SER) ≤-1.0 diopters (D), astigmatism and anisometropia both <2.00 D, and no other ocular abnormalities. METHODS: Participants were randomly allocated (1:1:1) to standard glasses, ready-made glasses, or adjustable glasses based on self-refraction. We recorded glasses wear on twice-weekly covert evaluation by head teachers (primary outcome), self-reported and investigator-observed wear, best-corrected visual acuity (BCVA) (not prespecified), children's satisfaction, and value attributed to glasses. MAIN OUTCOME MEASURE: Proportion of glasses wear on twice-weekly covert evaluation by head teachers over 2 months. RESULTS: Among 379 eligible participants, 127 were allocated to standard glasses (mean age, 13.7 years; standard deviation [SD], 1.0 years; 54.3% were male), 125 to ready-made (mean age, 13.6; SD, 0.83; 45.6%), and 127 to adjustable (mean age, 13.4 years; SD, 0.85; 54.3%). Mean wear proportion of adjustable glasses was significantly lower than for standard glasses (45% vs. 58%; P = 0.01), although the adjusted difference (90% confidence interval [CI], -19.0% to -3.0%) did not meet the prespecified inferiority threshold of 20%. Self-reported (90.2% vs. 84.8%, P = 0.64) and investigator-observed (44.1% vs. 33.9%, P = 0.89) wear did not differ between standard and adjustable glasses, nor did satisfaction with (P = 0.97) or value attributed to study glasses (P = 0.55) or increase in quality of life (5.53 [SD, 4.47] vs. 5.68 [SD, 4.34] on a 100-point scale, P > 0.30). Best-corrected visual acuity with adjustable glasses was better (P < 0.001) than with standard glasses. Change in power of study lenses at the end of the study (adjustable: 0.65 D, 95% CI, 0.52-0.79; standard, 0.01 D; 95% CI, -0.006 to 0.03, P < 0.001) was greater for adjustable glasses, although interobserver variation in power measurements may explain this. Lens scratches and frame damage were more common with adjustable glasses, whereas lens breakage was less common than for standard glasses. CONCLUSIONS: Proportion of wear was lower with adjustable glasses, although VA was better and measures of satisfaction and quality of life were not inferior to standard glasses.

Rinse-free hand wash for reducing absenteeism among preschool and school children.

BACKGROUND: Illness-related absenteeism is an important problem among preschool and school children for low-, middle- and high- income countries. Appropriate hand hygiene is one commonly investigated and implemented strategy to reduce the spread of illness and subsequently the number of days spent absent. Most hand hygiene strategies involve washing hands with soap and water, however this is associated with a number of factors that act as a barrier to its use, such as requiring running water, and the need to dry hands after cleaning. An alternative method involves washing hands using rinse-free hand wash. This technique has a number of benefits over traditional hand hygiene strategies and may prove to be beneficial in reducing illness-related absenteeism in preschool and school children. OBJECTIVES: 1. To assess the effectiveness of rinse-free hand washing for reducing absenteeism due to illness in preschool and school children compared to no hand washing, conventional hand washing with soap and water or other hand hygiene strategies. 2. To determine which rinse-free hand washing products are the most effective (if head-to-head comparisons exist), and what effect additional strategies in combination with rinse-free hand washing have on the outcomes of interest. SEARCH METHODS: In February 2020 we searched CENTRAL, MEDLINE, Embase, CINAHL, 12 other databases and three clinical trial registries. We also reviewed the reference lists of included studies and made direct contact with lead authors of studies to collect additional information as required. No date or language restrictions were applied. SELECTION CRITERIA: Randomized controlled trials (RCTs), irrespective of publication status, comparing rinse-free hand wash in any form (hand rub, hand sanitizer, gel, foam etc.) with conventional hand washing using soap and water, other hand hygiene programs (such as education alone), or no intervention. The population of interest was children aged between two and 18 years attending preschool (childcare, day care, kindergarten, etc.) or school (primary, secondary, elementary, etc.). Primary outcomes included child or student absenteeism for any reason, absenteeism due to any illness and adverse skin reactions. DATA COLLECTION AND ANALYSIS: Following standard Cochrane methods, two review authors (out of ZM, CT, CL, CS, TB), independently selected studies for inclusion, assessed risk of bias and extracted relevant data. Absences were extracted as the number of student days absent out of total days. This was sometimes reported with the raw numbers and other times as an incidence rate ratio (IRR), which we also extracted. For adverse event data, we calculated effect sizes as risk ratios (RRs) and present these with 95% confidence intervals (CIs). We used standard methodological procedures expected by Cochrane for data analysis and followed the GRADE approach to establish certainty in the findings. MAIN RESULTS: This review includes 19 studies with 30,747 participants. Most studies were conducted in the USA (eight studies), two were conducted in Spain, and one each in China, Colombia, Finland, France, Kenya, Bangladesh, New Zealand, Sweden, and Thailand. Six studies were conducted in preschools or day-care centres (children aged from birth to < five years), with the remaining 13 conducted in elementary or primary schools (children aged five to 14 years). The included studies were judged to be at high risk of bias in several domains, most-notably across the domains of performance and detection bias due to the difficulty to blind those delivering the intervention or those assessing the outcome. Additionally, every outcome of interest was graded as low or very low certainty of evidence, primarily due to high risk of bias, as well as imprecision of the effect estimates and inconsistency between pooled data. For the outcome of absenteeism for any reason, the pooled estimate for rinse-free hand washing was an IRR of 0.91 (95% CI 0.82 to 1.01; 2 studies; very low-certainty evidence), which indicates there may be little to no difference between groups. For absenteeism for any illness, the pooled IRR was 0.82 (95% CI 0.69 to 0.97; 6 studies; very low-certainty evidence), which indicates that rinse-free hand washing may reduce absenteeism (13 days absent per 1000) compared to those in the 'no rinse-free' group (16 days absent per 1000). For the outcome of absenteeism for acute respiratory illness, the pooled IRR was 0.79 (95% CI 0.68 to 0.92; 6 studies; very low-certainty evidence), which indicates that rinse-free hand washing may reduce absenteeism (33 days absent per 1000) compared to those in the 'no rinse-free' group (42 days absent per 1000). When evaluating absenteeism for acute gastrointestinal illness, the pooled estimate found an IRR of 0.79 (95% CI 0.73 to 0.85; 4 studies; low-certainty evidence), which indicates rinse-free hand washing may reduce absenteeism (six days absent per 1000) compared to those in the 'no rinse-free' group (eight days absent per 1000). There may be little to no difference between rinse-free hand washing and 'no rinse-free' group regarding adverse skin reactions with a RR of 1.03 (95% CI 0.8 to 1.32; 3 studies, 4365 participants; very low-certainty evidence). Broadly, compliance with the intervention appeared to range from moderate to high compliance (9 studies, 10,749 participants; very-low certainty evidence); narrativley, no authors reported substantial issues with compliance. Overall, most studies that included data on perception reported that teachers and students perceived rinse-free hand wash positively and were willing to continue its use (3 studies, 1229 participants; very-low certainty evidence). AUTHORS' CONCLUSIONS: The findings of this review may have identified a small yet potentially beneficial effect of rinse-free hand washing regimes on illness-related absenteeism. However, the certainty of the evidence that contributed to this conclusion was low or very low according to the GRADE approach and is therefore uncertain. Further research is required at all levels of schooling to evaluate rinse-free hand washing regimens in order to provide more conclusive, higher-certainty evidence regarding its impact. When considering the use of a rinse-free hand washing program in a local setting, there needs to be consideration of the current rates of illness-related absenteeism and whether the small beneficial effects seen here will translate into a meaningful reduction across their settings.

A mixed-methods feasibility study of an arts-based intervention for patients receiving maintenance haemodialysis.

BACKGROUND: Haemodialysis can negatively impact quality of life and mental health. Arts-based interventions used successfully in other settings to improve health and well-being, could help address the impact of haemodialysis. This study aimed to evaluate the feasibility and acceptability of conducting a randomised controlled trial (RCT) of an arts-based intervention for patients receiving haemodialysis. METHODS: A parallel convergent mixed-methods design was used, including a pilot cluster RCT and qualitative process evaluation. Phase 1 evaluated recruitment and retention rates through a pilot cluster RCT at a single haemodialysis unit in Northern Ireland. Participants included patients who received haemodialysis for ESKD, were over the age of 18 and had the capacity to consent. These participants were randomised to the intervention or control group according to their haemodialysis shift. The intervention involved six one-hour, one-to-one facilitated arts sessions during haemodialysis. Phase 2 explored intervention and trial acceptability through a qualitative process evaluation using semi-structured interviews based on the RE-AIM framework. Participants included 13 patients who participated in phase 1 of the study, including 9 participants from the experimental group and four participants from the control group, and nine healthcare professionals who were present on the unit during implementation. RESULTS: Out of 122 outpatient haemodialysis patients, 94 were assessed as eligible for participation. Twenty-four participants were randomised, meaning 80% of the target sample size was recruited and the attrition rate at 3 months was 12.5% (n = 3). Participants viewed the arts as more accessible and enjoyable than anticipated following implementation. All participants who started the intervention (n = 11) completed the full six sessions. Qualitative benefits of the intervention suggest improvements in mental well-being. Patient choice and facilitation were important factors for successful implementation. CONCLUSION: An arts-based intervention for patients receiving haemodialysis is acceptable for both patients and healthcare professionals, and a definitive trial is feasible. The intervention may help improve mental-wellbeing in patients receiving haemodialysis, but this requires further investigation in a definitive trial. TRIAL REGISTRATION: The trial was prospectively registered on clinicaltrials.gov on 14/8/2018, registration number NCT03629496 .

An exploration of symptom burden and its management, in Saudi Arabian patients receiving haemodialysis, and their caregivers: a mixed methods study protocol.

BACKGROUND: Globally 10% of the population worldwide are affected by chronic kidney disease (CKD), making it one of the most prevalent chronic diseases. Several studies have highlighted that the symptoms of CKD have a significant impact on patients. A number of symptoms, including fatigue and depression, are associated with poor patient health, increased risk of hospitalisation and mortality. Physical and emotional symptoms often remain under-recognised and largely untreated; however, patients often create a variety of self-management strategies to meet the challenges of these symptoms. There is a lack of knowledge regarding symptom burden and the experiences of patients receiving haemodialysis (HD) and their caregivers, particularly in Saudi Arabia, therefore, this study aims to explore symptom burden and its management amongst patients receiving HD in addition to caregiver burden. METHOD: A mixed methods, sequential, explanatory design consisting of two phases: phase 1 involves a cross-sectional study design with a planned convenience sample size of 141 patients who will be recruited from King Khaled hospital, Saudi Arabia. Thirty-two physical and psychological symptoms will be measured using the Chronic Kidney Disease-Symptom Burden Index (CKD-SBI). Additionally, 130 caregivers will complete the Arabic version of the Zarit Burden Interview (ZBI-22) to identify the level of burden in the caregivers of patients on maintenance HD. Phase 2 of the study is a qualitative descriptive design involving semi-structural interviews with 15 eligible patients currently receiving HD. The selection of participants for interviews will be based on the patients' total CKD-SBI scores with five individuals recruited from the lowest, median and highest percentiles. Additionally, 15 caregivers of the patients to be interviewed, will also be recruited and interviewed. DISCUSSION: This study focuses on a wide number of physical and psychological symptoms experienced by patients receiving HD. It will also focus on the effective management strategies patients employ to help reduce their perceived symptoms. Burden in caregivers of patients receiving HD will also be explored. Furthermore, the association between symptom burden and caregiver burden will be investigated. Findings from this study will provide evidence to help health care providers to develop effective interventions to assess and manage symptoms in patients receiving HD.

Differential methylation as a diagnostic biomarker of rare renal diseases: a systematic review.

BACKGROUND: The challenges in diagnosis of rare renal conditions can negatively impact patient prognosis, quality of life and result in significant healthcare costs. Differential methylation is emerging as an important biomarker for rare diseases and should be evaluated for rare renal conditions. METHODS: A comprehensive systematic review of methylation and rare renal disorders was conducted by searching the electronic databases MEDLINE, EMBASE, PubMed, Cochrane Library, alongside grey literature from GreyLit and OpenGrey databases, for publications published before September 2018. Additionally, the reference lists of the included papers were searched. Data was extracted and appraised including the primary focus, measurement and methodological rigour of the source. Eligibility criteria were adapted using the inclusion criteria from 'The 100,000 Genomes Project' and The National Registry of Rare Kidney Diseases, with additional focus on methylation. RESULTS: Thirteen full text articles were included in the review. Diseases analysed for differential methylation included glomerular disease, IgA nephropathy, ADPKD, rare causes of proteinuria, congenital renal agenesis, and membranous nephropathy. CONCLUSIONS: Differential methylation has been observed for several rare renal diseases, highlighting its potential for improving molecular characterisation of these disorders. Further investigation of methylation following a standardised reporting structure is necessary to improve research quality. Multi-omic data will provide insights for improved diagnosis, prognosis and support for individuals living and working with rare renal diseases.

The importance of social environment in preventing smoking: an analysis of the Dead Cool intervention.

BACKGROUND: An adolescent's perceptions of their family's and friends' smoking attitudes and behaviour can influence their own uptake of smoking. There are two broad sources of such social influence: observing the behaviour directly, and assimilating attitudes. METHODS: We analysed data collected for the evaluation of Dead Cool, a school based smoking prevention intervention in Northern Ireland (n=480 in 20 clusters). The main analysis fits three nested logistic regression models predicting pre-intervention susceptibility to taking up smoking, as reflected in responses to three attitudinal questions. Model 1 includes only personal characteristics as explanatory factors. Model 2 adds the behaviour of friends and family that would provide an opportunity for social influence through observational learning. Model 3 adds the susceptibility of friends. RESULTS: Each additional group of variables improved the model fit (with reduced AIC and BIC). However, in the final model, only three variables were found to be statistically significant (p<0.05) in predicting susceptibility to smoking initiation: rebelliousness (OR [1.1,1.3]) from the personal characteristics group; and, in the observational learning group, being friends with a smoker (OR [1.0,2.9]) and frequency of being in the same room or car with someone smoking (OR [2.0,9.0] for most frequent). Adding the two measures of diffusion of susceptibility through the friendship network improved the model fit, but neither was found to be statistically significant. CONCLUSIONS: The analysis provides additional evidence to support policies that could reduce children's exposure to smoking behaviour, and potential subsequent smoking initiation. No conclusions could be drawn about the diffusion of smoking attitudes through the school friendship networks of children.

Influence of presbyopia on smartphone usage among Chinese adults: A population study.

IMPORTANCE: Presbyopia, an essentially universal, age-related loss of the ability to focus un-aided on near objects, is the world's leading cause of visual impairment. BACKGROUND: Smartphone use is widespread in China, but little is known about the prevalence, determinants and correction of difficulties with smartphone use in the setting of presbyopia. DESIGN: Cross-sectional data from a population-based longitudinal cohort study. PARTICIPANTS: A total of 1817 persons aged ≥35 years in Guangzhou, Southern China. METHODS: Participants underwent near visual acuity (NVA) testing and completed questionnaires on smartphone usage detailing knowledge of their own presbyopia status, frequency (hours/day) and subjective difficulties with use of mobile and smartphones. Presbyopia was defined as uncorrected bilateral NVA ≤6/12 with best-corrected bilateral NVA >6/12. MAIN OUTCOME MEASURES: Difficulty in smartphone use associated with uncorrected presbyopia. RESULTS: Among 1427 respondents (78.5%) undergoing examination, 1191 (83.5%) completed questionnaires (mean age 52.3 ± 11.6 years; 54.9% women). Among 451 persons (37.8%) with presbyopia owning smartphones, 290 (64.3%) reported difficulty using them. Multiple ordinal logistic regression modelling showed difficulty in smartphone use due to presbyopia was associated with higher educational level (P = .013), worse NVA (P < .001) and more time spent using smartphones (P = .002 for 1-3 hours/day). Among persons with presbyopia owning smartphones, 353 (78.0%) said they would pay >US$15 (median US$45) for innovations making smartphone use easier. CONCLUSIONS AND RELEVANCE: Difficulty in using smartphones in the presence of presbyopia is common and affected persons are willing to pay for useful solutions to the problem.

"Hidden" social networks in behavior change interventions.

We investigated whether "hidden" (or unobserved) social networks were evident in a 2011 physical activity behavior change intervention in Belfast, Northern Ireland. Results showed evidence of unobserved social networks in the intervention and illustrated how the network evolved over short periods and affected behavior. Behavior change interventions should account for the interaction among participants (i.e., social networks) and how such interactions affect intervention outcome.

Individual factors and perceived community characteristics in relation to mental health and mental well-being.

BACKGROUND: It has been argued that though correlated with mental health, mental well-being is a distinct entity. Despite the wealth of literature on mental health, less is known about mental well-being. Mental health is something experienced by individuals, whereas mental well-being can be assessed at the population level. Accordingly it is important to differentiate the individual and population level factors (environmental and social) that could be associated with mental health and well-being, and as people living in deprived areas have a higher prevalence of poor mental health, these relationships should be compared across different levels of neighbourhood deprivation. METHODS: A cross-sectional representative random sample of 1,209 adults from 62 Super Output Areas (SOAs) in Belfast, Northern Ireland (Feb 2010 - Jan 2011) were recruited in the PARC Study. Interview-administered questionnaires recorded data on socio-demographic characteristics, health-related behaviours, individual social capital, self-rated health, mental health (SF-8) and mental well-being (WEMWBS). Multi-variable linear regression analyses, with inclusion of clustering by SOAs, were used to explore the associations between individual and perceived community characteristics and mental health and mental well-being, and to investigate how these associations differed by the level of neighbourhood deprivation. RESULTS: Thirty-eight and 30 % of variability in the measures of mental well-being and mental health, respectively, could be explained by individual factors and the perceived community characteristics. In the total sample and stratified by neighbourhood deprivation, age, marital status and self-rated health were associated with both mental health and well-being, with the 'social connections' and local area satisfaction elements of social capital also emerging as explanatory variables. An increase of +1 in EQ-5D-3 L was associated with +1SD of the population mean in both mental health and well-being. Similarly, a change from 'very dissatisfied' to 'very satisfied' for local area satisfaction would result in +8.75 for mental well-being, but only in the more affluent of areas. CONCLUSIONS: Self-rated health was associated with both mental health and mental well-being. Of the individual social capital explanatory variables, 'social connections' was more important for mental well-being. Although similarities in the explanatory variables of mental health and mental well-being exist, socio-ecological interventions designed to improve them may not have equivalent impacts in rich and poor neighbourhoods.

Heart rate variability biofeedback to reduce anxiety in autism spectrum disorder - a mini review.

There is a reported high prevalence of anxiety in people with autism spectrum disorder. This mini review appraises existing research investigating heart rate variability biofeedback to help manage symptoms of anxiety in people with autism spectrum disorder. A thorough search of electronic databases was conducted to find relevant literature. Consultation with experts and a librarian helped develop search terms following the PICO framework. Five databases were searched, and screening was undertaken using Covidence software, with the process outlined in a PRISMA flowchart. The latest review showed positive short-term effects but there is a need for long-term follow-up. Future investigations should consider device type, training settings, and control interventions. Accurate heart rate variability assessment independent of biofeedback devices is crucial. Additional measures like cortisol assessment and user feedback are recommended for comprehensive evaluation. The findings highlight progress in the evidence base and offer insight to future directions.

Physical activity and the rejuvenation of Connswater (PARC study): protocol for a natural experiment investigating the impact of urban regeneration on public health.

BACKGROUND: There is a dearth of evidence regarding the impact of urban regeneration projects on public health, particularly the nature and degree to which urban regeneration impacts upon health-related behaviour change. Natural experiment methodology enables comprehensive large-scale evaluations of such interventions. The Connswater Community Greenway in Belfast is a major urban regeneration project involving the development of a 9 km linear park, including the provision of new cycle paths and walkways. In addition to the environmental improvements, this complex intervention involves a number of programmes to promote physical activity in the regenerated area. The project affords a unique opportunity to investigate the public health impact of urban regeneration. METHODS/DESIGN: The evaluation framework was informed by the socio-ecological model and guided by the RE-AIM Framework. Key components include: (1) a quasi-experimental before-and-after survey of the Greenway population (repeated cross-sectional design), in tandem with data from a parallel Northern Ireland-wide survey for comparison; (2) an assessment of changes in the local built environment and of walkability using geographic information systems; (3) semi-structured interviews with a purposive sample of survey respondents, and a range of community stakeholders, before and after the regeneration project; and (4) a cost-effectiveness analysis. The primary outcome is change in proportion of individuals identified as being regularly physically active, according to the current UK recommendations. The RE-AIM Framework will be used to make an overall assessment of the impact of the Greenway on the physical activity behaviour of local residents. DISCUSSION: The Connswater Community Greenway provides a significant opportunity to achieve long-term, population level behaviour change. We argue that urban regeneration may be conceptualised meaningfully as a complex intervention comprising multiple components with the potential, individually and interactively, to affect the behaviour of a diverse population. The development and implementation of our comprehensive evaluation framework reflects this complexity and illuminates an approach to the empirical, rigorous evaluation of urban regeneration. More specifically, this study will add to the much needed evidence-base about the impact of urban regeneration on public health as well as having important implications for the development of natural experiment methodology.

Caregiver Burden in Informal Caregivers of Patients in Saudi Arabia Receiving Hemodialysis: A Mixed-Methods Study.

(1) Background: Long-term caregiving for patients receiving hemodialysis (HD), is associated with physical and psychological stress, which may impact on the well-being and quality of life of caregivers. Due to a lack of understanding of the experiences of informal caregivers of patients receiving HD, especially in Saudi Arabia, this study aimed to measure burden in informal caregivers of patients receiving HD, examine the factors that predict caregiver burden (CB), and explore the experience of burden in caregivers of patients receiving HD. (2) Methods: This study used a mixed-methods, sequential, explanatory design, which consisted of two phases. Phase 1 involved a cross-sectional study design, with a convenience sample of 61 caregivers of patients on maintenance HD for at least 3 months. All caregivers in the study completed the Arabic version of the Zarit Burden Interview to identify caregiver burden. Phase 2 of the study involved a qualitative descriptive design involving semi-structured interviews with nine caregivers. (3) Results: Study findings indicate that caregivers did not experience severe burden. Being older, a female caregiver and having comorbidities was positively associated with increased levels of caregiver burden. In the qualitative phase of the study, a number of important factors emerged that may contribute to a reduction in caregiver burden, including social support, cultural acceptance, and religious influences. (4) Conclusion and impact: CB was found to be low when a comparison was made with other studies using similar populations. Understanding the factors that influence caregiver burden will contribute to the accurate assessment of caregiver burden and help reduce burden in informal caregivers, patients with renal failure, and others with chronic illnesses worldwide.

Stakeholder perceptions of complementary and alternative medicine from people living with rare diseases in Northern Ireland.

INTRODUCTION: Only five percent of rare diseases have an orthodox modern medicine treatment available, therefore patients often utilise complementary and alternative medicines (CAMs) to help manage their condition. Several CAMs are supported by scientific evidence as effective for aiding management of rare diseases, however the methodological rigour of published literature may be sub-optimal and it can be difficult to show that an outcome is a direct result of the CAM intervention. Patients and healthcare professionals must weigh up the safety, efficacy, practical logistics, and financial implications of utilising CAMs for rare diseases. This study aimed to elucidate perspectives of stakeholders, (individuals with rare diseases, carers, family members, CAMs practitioners and healthcare professionals) on the usage of CAMs for rare diseases across Northern Ireland. METHODS: An online survey was open January - February 2019 (n = 29 responses). Themes identified from the survey were then discussed with stakeholders in a semi-structured discussion workshop in March, 2019. RESULTS: Patients with rare diseases reported CAMs as effective in the management of their condition, in particular acupuncture, dietary supplements, herbal medicines, homeopathy, hydrotherapy / swimming, kinesiology, mindfulness, pilates, reflexology, tai chi, and yoga. In this study, seven survey respondents experienced a negative side effect from CAMs. Workshop participants raised the lack of information available about CAMs and rare disease. Both the survey and workshop identified inequality of access with participants reporting CAMs to be expensive and expressing a desire for more therapies to be available within the United Kingdom (UK) National Healthcare Service (NHS). CONCLUSIONS: Many patients with rare diseases report that CAMs are helpful in the management of their condition. More information, high quality research, and education about CAMs is required for patients and healthcare professionals to help make informed decisions about the usage of CAMs for rare diseases. Improved communication, information, and health and social care in general would help individuals be more confident and knowledgeable about therapeutic options in relation to their rare disease(s).

Carer reported experiences: Supporting someone with a rare disease.

This exploratory study aimed to gain an understanding of carer reported experiences derived specifically from persons caring for someone with a rare disease. The survey took place online on the SmartSurvey platform from November 2019 to January 2020. The facilitated workshop took place in Bangor Carnegie Library, Northern Ireland. To be eligible to participate in the online survey respondents had to be adults caring for someone with a rare disease. Fifty-seven respondents took part, 15.8% male, 84.2% female. Thirty-two attendees were part of the facilitated workshop. While carers reported several positive aspects of their caring role, the majority of comments highlighted challenges such as sub-optimal interactions with healthcare professionals, insufficient (or absent) emotional, psychological and social support, lack of financial support and lack of awareness of existing support services. It is important that strategies are put in place to ensure that carers are given the time they need to care for themselves, and that awareness is raised of what support options are available for carers of people with a rare disease(s) from health and social care providers, charities or support groups.

Factors Associated with Burden in Caregivers of Patients with End-Stage Kidney Disease (A Systematic Review).

BACKGROUND: Caring for a patient with end-stage kidney disease (ESKD) is highly stressful and can impact negatively on the physical and psychological well-being of caregivers. To accurately assess caregiver burden (CB), health care providers (HCPs) need to identify characteristics associated with an increase in CB. AIM: The aim of this review is to explore CB in caregivers of adult patients with ESKD and to identify characteristics associated with any increase in CB. METHOD: A comprehensive literature search was completed using five electronic databases. Medline, Embase, CINHAL, PsycINFO, and Scopus. The Joanna Briggs Institute checklist (JBI) was used to quality appraise full text papers included in the review. No time limit for the date of publication of studies was employed, to enable the inclusion of more extensive literature. RESULTS: A total of 38 relevant studies from 18 countries were identified and included in the review. A variety of patient and caregiver factors can impact positively or negatively on CB, including socio-demographic factors of patients and caregivers, disease-related factors, situational and relational factors, environmental factors, and psychological factors. CONCLUSION: This review provides awareness to HCPs of the important factors associated with CB, when assessing or targeting interventions for caregivers experiencing burden.

Complex arts-based interventions for patients receiving haemodialysis: A realist review.

Many patients with end-stage kidney disease require haemodialysis, a treatment that requires attending hospital three times a week for four hours each visit. This treatment impacts profoundly on mental health. Arts-based interventions for patients receiving haemodialysis could address the impact of this treatment; however, there is no consensus on methods of implementation and mechanisms underlying these interventions in specific clinical contexts. Using a realist approach, relevant articles were synthesised to inform theory relating to the mechanism and implementation of complex arts-based interventions for haemodialysis patients. The theoretical framework includes two implementation phases, firstly delivery of person-centred art activities during haemodialysis and secondly, display of completed artwork. This intervention triggers mechanisms including flow and social capital. Implementation is hindered by constraints of the haemodialysis unit and patients' lack of confidence in their artistic skills. These issues can be addressed through aflexible approach to implementation and support from healthcare professionals.