'People like me don't get support': Autistic adults' experiences of support and treatment for mental health difficulties, self-injury and suicidality.

Autistic people are at high risk of mental health problems, self-injury and suicidality. However, no studies have explored autistic peoples' experiences of treatment and support for these difficulties. In partnership with a steering group of autistic adults, an online survey was developed to explore these individuals' experiences of treatment and support for mental health problems, self-injury and suicidality for the first time. A total of 200 autistic adults (122 females, 77 males and 1 unreported) aged 18-67 (mean = 38.9 years, standard deviation = 11.5), without co-occurring intellectual disability, completed the online survey. Thematic analysis of open-ended questions resulted in an overarching theme that individually tailored treatment and support was both beneficial and desirable, which consisted of three underlying themes: (1) difficulties in accessing treatment and support; (2) lack of understanding and knowledge of autistic people with co-occurring mental health difficulties and (3) appropriate treatment and support, or lack of, impacted autistic people's well-being and likelihood of seeing suicide as their future. Findings demonstrate an urgent need for autism treatment pathways in mental health services.

Predictors of fever-related admissions to a paediatric assessment unit, ward and reattendances in a South London emergency department: the CABIN 2 study.

OBJECTIVE: To explore the risk factors for ward and paediatric assessment unit (PAU) admissions from the emergency department (ED). DESIGN: Prospective observational study. SETTING AND PATIENTS: Febrile children attending a large tertiary care ED during the winter of 2014-2015. MAIN OUTCOME MEASURES: Ward and PAU admissions, National Institute for Health and Care Excellence (NICE) guidelines classification, reattendance to the ED within 28 days and antibiotic use. RESULTS: A total of 1097 children attending the children's ED with fever were analysed. Risk factors for PAU admission were tachycardia (RR=1.1, 95% CI (1 to 1.1)), ill-appearance (RR=2.2, 95% CI (1.2 to 4.2)), abnormal chest findings (RR=2.1, 95% CI (1.2 to 4.3)), categorised as NICE amber (RR 1.7 95% CI (1.2 to 2.5)). There was a 30% discordance between NICE categorisation at triage and statistical internal validation. Predictors of ward admission were a systemic (RR=6.9, 95% CI (2.4 to 19.8)) or gastrointestinal illness (RR=3.8, 95% (1.4 to 10.4)) and categorised as NICE Red (RR=5.9, 95% CI (2.2 to 15.3)). Only 51 children had probable bacterial pneumonia (4.6%), 52 children had a proven urinary tract infection (4.2%), with just 2 (0.2%) positive blood cultures out of 485 (44%) children who received an antibiotic. 15% of all children reattended by 28 days and were more likely to have been categorised as Amber and had investigations on initial visit. CONCLUSIONS: Risk factors for PAU and ward admissions are different in this setting with high reattendance rates and very low proportion of confirmed/probable serious bacterial infections. Future studies need to focus on reducing avoidable admissions and antibiotic treatment.

'Pedometers cost buttons': the feasibility of implementing a pedometer based walking programme within the community.

BACKGROUND: Recent studies have suggested that walking interventions may be effective (at least in the short term) at increasing physical activity amongst those people who are the most inactive. This is a leading objective of contemporary public health policy in the UK and worldwide. However, before committing money from limited budgets to implement walking interventions more widely in the community, policymakers will want to know whether similar impacts can be expected and whether any changes will be required to the process to ensure uptake and success. This paper utilises the findings from a recent community-based pedometer study (Walking for Wellbeing in the West - WWW) undertaken in Glasgow, Scotland to address issues of feasibility. METHODS: An economic analysis of the WWW study assessed the costs of the interventions (minimal and maximal) and combined these with the effects to present incremental cost-effectiveness ratios (cost/person achieving the target of an additional 15,000 steps/week). A qualitative evaluation, involving focus group discussions with WWW participants and short interviews with members of the WWW research team, explored perceived benefits and barriers associated with walking, as well as the successful aspects and challenges associated with the interventions. RESULTS: The incremental cost effectiveness associated with the interventions was estimated as £92 and £591 per person achieving the target for the minimal and maximal interventions respectively. The qualitative evaluation gave insight into the process by which the results were achieved, and identified several barriers and facilitators that would need to be addressed before implementing the interventions in the wider community, in order to ensure their effective transfer. These included assessing the impact of the relationship between researchers and participants on the results, and the motivational importance of monitoring and assessing performance. CONCLUSIONS: The results suggest that pedometer based walking interventions may be considered cost-effective and suitable for implementation within the wider community. However, several research gaps remain, including the importance and impact of the researcher/participant relationship, the impact of assessment on motivation and effectiveness, and the longer term impact on physical and mental health, resource utilisation and quality of life.

The current state of quality of care measurement in the California Department of Corrections and Rehabilitation.

The quality of health care in prisons is lacking in many states. In particular, the California Department of Corrections and Rehabilitation (CDCR) is in the midst of an extreme legal remedy to address problems related to access to and quality of care; it now operates under the direction of a federally appointed receiver for medical care. To understand the current state of access and quality measurement and to assess strengths and weaknesses of current activities, the RAND Corporation conducted a series of interviews and site visits in the CDCR and related offices as well as document reviews (December 2008 to February 2009). Findings supported RAND's larger project goals to identify measures for use in a sustainable quality measurement system.

Selecting performance indicators for prison health care.

Improving prison health care requires a robust measurement dashboard that addresses multiple domains of care. We sought to identify tested indicators of clinical quality and access that prison health managers could use to ascertain gaps in performance and guide quality improvement. We used the RAND/UCLA modified Delphi method to select the best indicators for correctional health. An expert panel rated 111 indicators on validity and feasibility. They voted to retain 79 indicators in areas such as access, cardiac conditions, geriatrics, infectious diseases, medication monitoring, metabolic diseases, obstetrics/gynecology, screening/prevention, psychiatric disorders/substance abuse, pulmonary conditions, and urgent conditions. Prison health institutions, like all other large health institutions, need robust measurement systems. The indicators presented here provide a basic library for prison health managers developing such systems.

Quality measures for the diagnosis and non-operative management of carpal tunnel syndrome in occupational settings.

INTRODUCTION: Providing higher quality medical care to workers with occupationally associated carpal tunnel syndrome (CTS) may reduce disability, facilitate return to work, and lower the associated costs. Although many workers' compensation systems have adopted treatment guidelines to reduce the overuse of unnecessary care, limited attention has been paid to ensuring that the care workers do receive is high quality. Further, guidelines are not designed to enable objective assessments of quality of care. This study sought to develop quality measures for the diagnostic evaluation and non-operative management of CTS, including managing occupational activities and functional limitations. METHODS: Using a variation of the well-established RAND/UCLA Appropriateness Method, we developed draft quality measures using guidelines and literature reviews. Next, in a two-round modified-Delphi process, a multidisciplinary panel of 11 U.S. experts in CTS rated the measures on validity and feasibility. RESULTS: Of 40 draft measures, experts rated 31 (78%) valid and feasible. Nine measures pertained to diagnostic evaluation, such as assessing symptoms, signs, and risk factors. Eleven pertain to non-operative treatments, such as the use of splints, steroid injections, and medications. Eleven others address assessing the association between symptoms and work, managing occupational activities, and accommodating functional limitations. CONCLUSIONS: These measures will complement existing treatment guidelines by enabling providers, payers, policymakers, and researchers to assess quality of care for CTS in an objective, structured manner. Given the characteristics of previous measures developed with these methods, greater adherence to these measures will probably lead to improved patient outcomes at a population level.

Overcoming barriers to engaging socio-economically disadvantaged populations in CHD primary prevention: a qualitative study.

BACKGROUND: Preventative medicine has become increasingly important in efforts to reduce the burden of chronic disease in industrialised countries. However, interventions that fail to recruit socio-economically representative samples may widen existing health inequalities. This paper explores the barriers and facilitators to engaging a socio-economically disadvantaged (SED) population in primary prevention for coronary heart disease (CHD). METHODS: The primary prevention element of Have a Heart Paisley (HaHP) offered risk screening to all eligible individuals. The programme employed two approaches to engaging with the community: a) a social marketing campaign and b) a community development project adopting primarily face-to-face canvassing. Individuals living in areas of SED were under-recruited via the social marketing approach, but successfully recruited via face-to-face canvassing. This paper reports on focus group discussions with participants, exploring their perceptions about and experiences of both approaches. RESULTS: Various reasons were identified for low uptake of risk screening amongst individuals living in areas of high SED in response to the social marketing campaign and a number of ways in which the face-to-face canvassing approach overcame these barriers were identified. These have been categorised into four main themes: (1) processes of engagement; (2) issues of understanding; (3) design of the screening service and (4) the priority accorded to screening. The most immediate barriers to recruitment were the invitation letter, which often failed to reach its target, and the general distrust of postal correspondence. In contrast, participants were positive about the face-to-face canvassing approach. Participants expressed a lack of knowledge and understanding about CHD and their risk of developing it and felt there was a lack of clarity in the information provided in the mailing in terms of the process and value of screening. In contrast, direct face-to-face contact meant that outreach workers could explain what to expect. Participants felt that the procedure for uptake of screening was demanding and inflexible, but that the drop-in sessions employed by the community development project had a major impact on recruitment and retention. CONCLUSION: Socio-economically disadvantaged individuals can be hard-to-reach; engagement requires strategies tailored to the needs of the target population rather than a population-wide approach.

Late preterm birth: a new nursing issue.

Late preterm infants are those born between 34 and 36 6/7 completed weeks' gestation. In the last decade, late preterm infants have become the fastest growing subset of preterm infants and now account for 74% of all preterm births. They are at greater risk for feeding problems, dehydration, hypothermia, jaundice, and hypoglycemia and are more likely to be readmitted to the hospital in the first weeks after birth and accrue greater healthcare costs as a result. Despite the alarming growth of this population and the acknowledgment of increased risk in the literature, there is limited information available to the clinical nurse and few evidence-based guidelines to direct the care of these infants specifically. This article describes what is known to date about this issue and what nurses need to do to appropriately care for late preterm infants.

The 'Walking for Wellbeing in the West' randomised controlled trial of a pedometer-based walking programme in combination with physical activity consultation with 12 month follow-up: rationale and study design.

BACKGROUND: Scotland has a policy aimed at increasing physical activity levels in the population, but evidence on how to achieve this is still developing. Studies that focus on encouraging real world participants to start physical activity in their settings are needed. The Walking for Well-being in the West study was designed to assess the effectiveness of a pedometer-based walking programme in combination with physical activity consultation. The study was multi-disciplinary and based in the community. Walking for Well-being in the West investigated whether Scottish men and women, who were not achieving the current physical activity recommendation, increased and maintained walking behaviour over a 12 month period. This paper outlines the rationale and design of this innovative and pragmatic study. METHODS: Participants were randomised into two groups: Group 1: Intervention (pedometer-based walking programme combined with a series of physical activity consultations); Group 2: Waiting list control for 12 weeks (followed by minimal pedometer-based intervention). Physical activity (primary outcome) was measured using pedometer step counts (7 day) and the International Physical Activity Questionnaire (long version). Psychological processes were measured using questionnaires relating to the Transtheoretical Model of Behaviour Change, mood (Positive and Negative Affect Schedule) and quality of life (Euroqol EQ-5D instrument). Physiological measures included anthropometric and metabolic outcomes. Environmental influences were assessed subjectively (Neighbourhood Quality of Life Survey) and objectively (neighbourhood audit tool and GIS mapping). The qualitative evaluation employed observation, semi-structured interviews and focus groups. A supplementary study undertook an economic evaluation. DISCUSSION: Data analysis is on-going. Walking for Well-being in the West will demonstrate if a pedometer based walking programme, in combination with physical activity consultation results in a sustainable increase in walking behaviour in this sample of Scottish adults over a 12 month period. The study will examine the complex relationships between behavioural change, health consequences and the role of the environment, in conjunction with the cost effectiveness of this approach and a detailed insight into the participants' experiences of the intervention. TRIAL REGISTRATION: Current Controlled Trials ISRCTN88907382.

Disenrollment information and Medicare plan choice: is more information better?

To help Medicare beneficiaries and their intermediaries select the best health plan, CMS publicly reports comparative plan information. Using a laboratory version of Medicare Health Plan Compare that involved a simulated plan choice by 359 Medicare intermediaries, we experimentally investigated plan recommendations with and without disenrollment information and time constraints for viewing materials. Results indicated that the presence of disenrollment information reduced time spent on other measures of plan performance. It also reduced decision quality for less educated intermediaries. Designers and sponsors of consumer-oriented materials should recognize that more information is not always better.

QALY maximisation and people's preferences: a methodological review of the literature.

In cost-utility analysis, the numbers of quality-adjusted life years (QALYs) gained are aggregated according to the sum-ranking (or QALY maximisation) rule. This requires that the social value from health improvements is a simple product of gains in quality of life, length of life and the number of persons treated. The results from a systematic review of the literature suggest that QALY maximisation is descriptively flawed. Rather than being linear in quality and length of life, it would seem that social value diminishes in marginal increments of both. And rather than being neutral to the characteristics of people other than their propensity to generate QALYs, the social value of a health improvement seems to be higher if the person has worse lifetime health prospects and higher if that person has dependents. In addition, there is a desire to reduce inequalities in health. However, there are some uncertainties surrounding the results, particularly in relation to what might be affecting the responses, and there is the need for more studies of the general public that attempt to highlight the relative importance of various key factors.

A note on a discussion group study of public preferences regarding priorities in the allocation of donor kidneys.

OBJECTIVE: To explore whether and how people wish to give differential priority based on certain characteristics of the potential recipient of a donor kidney. DESIGN: A random sample of people resident in York was invited to attend two focus group meetings each, a fortnight apart. SETTING: The City of York. PARTICIPANTS: Twenty-three randomly chosen people meeting in four groups of five or six. MAIN OUTCOME MEASURES: Those factors that people think should be taken into account when allocating donor kidneys, in addition to the expected benefits from transplantation. RESULTS: People are willing and able to distinguish between potential recipients of a kidney transplantation according to a range of characteristics beyond the expected benefits from treatment. There is a clear consensus across the four groups that one of the most important considerations is what will happen to the patient without treatment, and so priority is given to those with a poor prognosis. There is also a strong view that priority should be given to younger patients and to those with dependants. The time spent waiting for a transplant is also important, but less so. CONCLUSIONS: A sample of the general public, after discussion and debate, wish to take account of a number of patient characteristics when allocating donor kidneys. There is some degree of consensus about what these factors should be and this suggests that it might be possible to develop a set of guidelines for the allocation of donor kidneys.

Measuring people's preferences regarding ageism in health: some methodological issues and some fresh evidence.

In this paper, we outline the three main concepts of 'ageism'; health maximisation ageism, productivity ageism, and fair innings ageism. We provide a methodological overview of the existing empirical literature on people's preferences regarding age and classify these studies according to the types of questions that have been asked. We consider some of the methodological issues involved in eliciting preferences regarding ageism and propose using a fixed duration of benefit rather than, as some studies have done, a benefit that lasts for a full lifetime. Informed by this discussion, we present the results from our own empirical study, carried out in the UK, which combines qualitative and quantitative methods to explore the reasons people have for choosing one age over another. In so doing, we are able to consider the extent to which respondents might bring extraneous factors to bear on their responses and/or disregard relevant information (such as that relating to the fixed nature of the benefit). The results suggest that people are broadly in favour of giving priority to younger over older people, based on arguments relating to both productivity ageism and fair innings ageism. However, respondents appear to assume that a benefit would last for a full lifetime (even if they are told to assume a fixed benefit), unless they are asked to consider a 'full-life' benefit first. This particular framing effect has important implications for preference elicitation studies, suggesting that if you want people to answer the question you have in mind, first ask them the question you think they may have in mind.

A note on the relative importance that people attach to different factors when setting priorities in health care.

OBJECTIVE: To explore whether and to what extent people wish to give differential priority when asked to choose between providing health care treatment for different individuals or groups, on the basis of a range of factors, ranging from health gain to the number of dependants a person has. DESIGN: A sample of people resident in York self-completed a questionnaire. SETTING: The City of York. PARTICIPANTS: Twenty-three members of the general public and 29 undergraduate students. MAIN OUTCOME MEASURES: The relative importance of factors that people think should be taken into account when choosing between providing health care treatment for individuals or groups. RESULTS: The results suggest that health gain and the consequences for health without treatment are two of the most important considerations. CONCLUSIONS: A sample of the general public and undergraduate students wish to take account of a number of personal characteristics when setting priorities in health care.

Reducing avoidable inequalities in health: a new criterion for setting health care capitation payments.

Traditionally, most health care systems which pretend to any sort of rationality and cost control have sought to allocate their limited funds in order to secure equal opportunity of access for equal need. The UK government is implementing a fundamental change of resource allocation philosophy towards 'contributing to the reduction of avoidable health inequalities'. The purpose of this essay is to explore some of the economic issues that arise when seeking to allocate health care resources according to the new criterion. It indicates that health inequalities might arise because of variations in the quality of health services, variations in access to those services, or variations in the way people produce health, and that the resource allocation consequences differ depending on which source is being addressed. The paper shows that an objective of reducing health inequalities is not necessarily compatible with an objective of equity of access, nor with the objective of maximising health gain. The results have profound consequences for approaches towards economic evaluation, the role of clinical guidelines and performance management, as well as for resource allocation methods.