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Introduction: Understanding the causes of low engagement in healthcare is a pre-requisite for improving health services' contribution to tackling health inequalities. Low engagement includes missing healthcare appointments. Serially (having a pattern of) missing general practice (GP) appointments may provide a risk marker for vulnerability and poorer health outcomes. Methods and analysis: A proof of concept pilot using GP appointment data and a focus group with GPs informed the development of missed appointment categories: patients can be classified based on the number of appointments missed each year. The full study, using a retrospective cohort design, will link routine health service and education data to determine the relationship between GP appointment attendance, health outcomes, healthcare usage, preventive health activity and social circumstances taking a life course approach and using data from the whole journey in the National Health Service (NHS) healthcare. 172 practices will be recruited (∼900 000 patients) across Scotland. The statistical analysis will focus on 2 key areas: factors that predict patients who serially miss appointments, and serial missed appointments as a predictor of future patient outcomes. Regression models will help understand how missed appointment patterns are associated with patient and practice characteristics. We shall identify key factors associated with serial missed appointments and potential interactions that might predict them. Ethics and dissemination: The results of the project will inform debates concerning how best to reduce non-attendance and increase patient engagement within healthcare systems. Significant non-academic beneficiaries include governments, policymakers and medical practitioners. Results will be disseminated via a combination of academic outputs (papers, conferences), social media and through collaborative public health/policy fora.

This study is supported by a Scottish Government Chief Scientist Office research grant (CZH/4/1118) with Safehaven and data linkage costs supported in lieu by the DSLS at Scottish Government. ; Peer reviewed ; Publisher PDF

This study was supported by a Scottish Government Chief Scientist Office research grant (reference number: CZH/4/41118) with Safe Haven and data linkage costs supported in lieu by the Data Sharing and Linkage Service (DSLS) at Scottish Government. These funding bodies had no role in the design of the study, nor in the collection, analysis and interpretation of data, nor in writing the manuscript. ; Peer reviewed ; Publisher PDF

This study was supported by a Scottish Government Chief Scientist Office research grant (CZH/4/41118) with Safehaven and data linkage costs supported in lieu by the DSLS at Scottish Government. These funding bodies had no role in the design of the study, or collection, analysis, and interpretation of data or in writing the manuscript. The authors declare no conflict of interest. ; Peer reviewed ; Publisher PDF

Introduction Understanding the causes of low engagement in health care is a prerequisite for improving health services' contribution to tackling health inequalities. Low engagement includes missing health care appointments. Serially (having a pattern of) missing general practice appointments may provide a risk marker for vulnerability and poorer health outcomes. Methods and analysis A proof of concept pilot utilising general practice (GP) appointment data and a focus group with GPs informed the development of missed appointment categories: patients can be classified based on the number of appointments missed each year. The full study, using a retrospective cohort design, will link routine health service and education data to determine the relationship between general practice appointment attendance, health outcomes, health care utilization, preventive health activity, and social circumstances taking a life course approach and using data from the whole journey in NHS health care. 172 practices will be recruited (approximately 900,000 patients) across Scotland. The statistical analysis will focus on two key areas; factors that predict patients who serially miss appointments, and serial missed appointments as a predictor of future patient outcomes. Regression models will help understand how missed appointment patterns are associated with patient and practice characteristics. We shall identify key factors associated with serial missed appointments and potential interactions that might predict them. Ethics and dissemination The results of the project will inform debates concerning how best to reduce non-attendance and increase patient engagement within health caresystems. Significant non-academic beneficiaries include governments, policy-makers and medical practitioners. Results will be disseminated via a combination of academic outputs (papers, conferences), social media, and through collaborative public health/policy fora.

Background: Co-occurring trauma-related and neurodevelopmental problems are common in maltreated children. In population research and clinical practice, these tend to be considered separately. Overlapping health problems, that is, "multi-morbidity," in adulthood is associated with increased service burden and costs, but this has not been investigated in childhood. Methods: Using well-validated parent-report questionnaires, we examined the overlap between symptoms of the neurodevelopmental disorder autism (autism spectrum disorder, ASD) and symptoms of the trauma- and stressor-related disorders (reactive attachment disorder [RAD] and disinhibited social engagement disorder [DSED]) in a representative general population sample of over 3,300 children aged 5–6 years of age. We investigated sociodemographic factors, service burden, and costs in association with these problems when considered separately and when co-occurring. Results: Nearly 2% of this population had symptoms suggestive of both ASD and RAD/DSED. High symptom scores for ASD were associated with male gender, (younger) age of mother at birth, and being in a single-parent family, while high symptom scores for RAD/DSED were associated with (younger) age of mother at birth, being in a single-parent family, and the number of accidents reported. Service use costs per likely case of both ASD and RAD/DSED in the preschool years were increased by £348.62 (95% confidence interval 121.04–391.11)—nearly double the costs of ASD alone. Conclusions: There is considerable overlap between symptoms of ASD and RAD/DSED in the general population, indicating that multi-morbidity is already present in childhood and is associated with increased service use and costs even in the preschool years.

Acknowledgements: This work was supported by the Chief Scientist Office of the Scottish Government (CZG/2/565) and the Gillberg Neuropsychiatry Centre. We are grateful to all of the participants and to the Growing up in Scotland team for their support with this study. Funding: The author(s) received no financial support for the research, authorship, and/or publication of this article ; Peer reviewed ; Publisher PDF

BackgroundAdults with intellectual disabilities (ID) experience significant inequalities and tend to be more sedentary and less physically active than the wider population. Walking programmes are an effective way to increase physical activity (PA) but have not been used in studies involving adults with intellectual disabilities.MethodNineteen adults with intellectual disabilities participated in semistructured interviews or focus groups exploring their experiences of taking part in a walking programme (Walk Well). Data were coded using thematic analysis.ResultsFour overarching themes emerged: perceived benefits of taking part in the programme, perceived drawbacks/ barriers, walking choices and using the Walk Well resources. While there was not a significant increase in walking for all, the participants reported positive experiences of taking part in the programme. Self‐monitoring proved difficult for some, particularly reading the daily step count recorded on the pedometer and writing it in the diary. Carers also played an important role in facilitating and preventing behaviour change in adults with intellectual disabilities.ConclusionAdditional barriers prevent many adults with intellectual disabilities from participating in PA. Capturing participant experiences provides important information for designing effective and equitable health improvement programmes.

Background: Previous studies have reported a reduction in acute coronary events following smoke-free legislation. Evidence is lacking on whether stroke is also reduced. The aim was to determine whether the incidence of stroke, overalland by sub-type, fell following introduction of smoke-free legislation across Scotland on 26 March 2006. Methods and Findings: A negative binomial regression model was used to determine whether the introduction of smokefree legislation resulted in a step and/or slope change in stroke incidence. The model was adjusted for age-group, sex, socioeconomic deprivation quintile, urban/rural residence and month. Interaction tests were also performed. Routine hospital administrative data and death certificates were used to identify all hospital admissions and pre-hospital deaths due to stroke (ICD10 codes I61, I63 and I64) in Scotland between 2000 and 2010 inclusive. Prior to the legislation, rates of all stroke, intracerebral haemorrhage and unspecified stroke were decreasing, whilst cerebral infarction was increasing at 0.97% per annum. Following the legislation, there was a dramatic fall in cerebral infarctions that persisted for around 20 months. No visible effect was observed for other types of stroke. The model confirmed an 8.90% (95% CI 4.85, 12.77, p,0.001) stepwise reduction in cerebral infarction at the time the legislation was implemented, after adjustment for potential cofounders. Conclusions: Following introduction of national, comprehensive smoke-free legislation there was a selective reduction in cerebral infarction that was not apparent in other types of stroke.

BACKGROUND: Early-onset dementia is common in Down syndrome adults, who have trisomy 21. The amyloid precursor protein gene is on chromosome 21, and so is over-expressed in Down syndrome, leading to amyloid β (Aβ) over-production, a major upstream pathway leading to Alzheimer disease (AD). Statins (microsomal 3-hydroxy-3-methylglutaryl coenzyme A reductase inhibitors), have pleiotropic effects including potentially increasing brain amyloid clearance, making them plausible agents to reduce AD risk. Animal models, human observational studies, and small scale trials support this rationale, however, there are no AD primary prevention trials in Down syndrome adults. In this study we study aim to inform the design of a full-scale primary prevention trial. METHODS/DESIGN: TOP-COG is a feasibility and pilot double-blind randomized controlled trial (RCT), with a nested qualitative study, conducted in the general community. About 60 Down syndrome adults, aged ≥50 will be included. The intervention is oral simvastatin 40 mg at night for 12 months, versus placebo. The primary endpoint is recruitment and retention rates. Secondary endpoints are (1) tolerability and safety; (2) detection of the most sensitive neurocognitive instruments; (3) perceptions of Down syndrome adults and caregivers on whether to participate, and assessment experiences; (4) distributions of cognitive decline, adaptive behavior, general health/quality of life, service use, caregiver strain, and sample size implications; (5) whether Aβ42/Aβ40 is a cognitive decline biomarker. We will describe percentages recruited from each source, the number of contacts to achieve this, plus recruitment rate by general population size. We will calculate summary statistics with 90% confidence limits where appropriate, for each study outcome as a whole, by treatment group and in relation to baseline age, cognitive function, cholesterol and other characteristics. Changes over time will be summarized graphically. The sample size for a definitive RCT will be estimated under alternative assumptions. DISCUSSION: This study is important, as AD is a major problem for Down syndrome adults, for whom there are currently no effective preventions or treatments. It will also delineate the most suitable assessment instruments for this population. Recruitment of intellectually disabled adults is notoriously difficult, and we shall provide valuable information on this, informing future studies. TRIAL REGISTRATION: Current Controlled Trials ISRCTN Register ID: ISRCTN67338640 (17 November 2011). ; This study is funded by the Chief Scientist Office, Scottish Government Health Department (reference: CZH/4/626). JS is funded by the NHS Lothian R&D Directorate. ; This is the final published version. It first appeared at http://www.trialsjournal.com/content/15/1/202.

AbstractBackgroundIn the UK, general practitioners/family physicians receive pay for performance on management of long‐term conditions, according to best‐practice indicators.MethodManagement of long‐term conditions was compared between 721 adults with intellectual disabilities and the general population (n = 764,672). Prevalence of long‐term conditions was determined, and associated factors were investigated via logistic regression analyses.ResultsAdults with intellectual disabilities received significantly poorer management of all long‐term conditions on 38/57 (66.7%) indicators. Achievement was high (75.1%–100%) for only 19.6% of adults with intellectual disabilities, compared with 76.8% of the general population. Adults with intellectual disabilities had higher rates of epilepsy, psychosis, hypothyroidism, asthma, diabetes and heart failure. There were no clear associations with neighbourhood deprivation.ConclusionsAdults with intellectual disabilities receive poorer care, despite conditions being more prevalent. The imperative now is to find practical, implementable means of supporting the challenges that general practices face in delivering equitable care.

IntroductionPopulation-based screening has been shown to reduce cancer specific mortality. Within Scotland, three national screening programmes exist: breast, cervical and bowel. Despite being a common and preventable form of cancer, the uptake for bowel cancer screening among women lags behind that for breast and cervical cancer.
Objectives and ApproachSince the benefits of screening accrue with participation, it is important to understand why differences in screening uptake exist. In this study, data on women aged 24-74 in the Greater Glasgow and Clyde Health Board, invited to take part in one or more screening programme during the period 2009-2013, were linked to demographic and medical data. Uptake was determined based on the presence of a screening attendance or result; the impact of age, deprivation and co-morbidity on uptake was determined using logistic regression for each individual programme, and for the cohort of women invited to participate in all three programmes.
ResultsOverall, 430,591 women were invited to take part in one or more screening programme during the study period. The uptake for bowel screening was, at 61.7%, lower than that seen in either the breast (72.6%) or cervical (80.7%) programme. Despite these differences, the same demographic factors were associated with uptake of each individual screening programme: older women and those living in affluent areas were most likely to attend. Medical factors did differentially influence uptake, those with multi-morbid illness being less likely to participate in breast and bowel, but not the cervical programme. For the 68,324 women invited to participate in all programmes, 52.1% took part in all three while 7.2% participated in none.
Conclusion/ImplicationsUptake of bowel screening was confirmed as lower than uptake of other programmes, although all were similarly impacted by demographic, clinical and socioeconomic factors. Individuals were more likely to complete bowel screening if they participate in another programme, suggesting these may serve as a vehicle for improving bowel screening uptake.

BACKGROUND: Dementia is very common in Down syndrome (trisomy 21) adults. Statins may slow brain amyloid β (Aβ, coded on chromosome 21) deposition and, therefore, delay Alzheimer disease onset. One prospective cohort study with Down syndrome adults found participants on statins had reduced risk of incident dementia, but there are no randomised controlled trials (RCTs) on this issue. Evidence is sparse on the best instruments to detect longitudinal cognitive decline in older Down syndrome adults. METHODS: TOP-COG was a feasibility/pilot, double-blind RCT of 12 months simvastatin 40 mg versus placebo for the primary prevention of dementia in Alzheimer disease in Down syndrome adults aged 50 years or older. Group allocation was stratified by age, apolipoprotein E (APOE) ε4 allele status, and cholesterol level. Recruitment was from multiple general community sources over 12 months. Adults with dementia, or simvastatin contraindications, were excluded. Main outcomes were recruitment and retention rates. Cognitive decline was measured with a battery of tests; secondary measures were adaptive behaviour skills, general health, and quality of life. Assessments were conducted pre randomisation and at 12 months post randomisation. Blood Aβ40/Aβ42 levels were investigated as a putative biomarker. Results were analysed on an intention-to-treat basis. A qualitative sub-study was conducted and analysed using the Framework Approach to determine recruitment motivators/barriers, and participation experience. RESULTS: We identified 181 (78 %) of the likely eligible Down syndrome population, and recruited 21 (11.6 %), from an area with a general population size of 3,135,974. Recruitment was highly labour-intensive. Thirteen (62 %) participants completed the full year. Results favoured the simvastatin group. The most appropriate cognitive instrument (regarding ease of completion and detecting change over time) was the Memory for Objects test from the Neuropsychological Assessment of Dementia in Individuals with Intellectual Disabilities battery. Cognitive testing appeared more sensitive than proxy-rated adaptive behaviour, quality of life, or general health scores. Aβ40 levels changed less for the simvastatin group (not statistically significant). People mostly declined to participate because of not wanting to take medication, and not knowing if they would receive simvastatin or placebo. Participants reported enjoying taking part. CONCLUSION: A full-scale RCT is feasible. It will need 37 % UK population coverage to recruit the required 160 participants. Information/education about the importance of RCT participation is needed for this population. TRIAL REGISTRATION: ISRCTN67338640 . ; This study was funded by the Chief Scientist Office, Scottish Government Health Department (reference: CZH/4/626). JS is funded by the NHS Lothian R&D Directorate. The study was supported by Down Syndrome Scotland, and we thank them, and all members of the Trial Steering Committee and Data Management and Ethics Committee. ; This is the final version of the article. It first appeared from BioMed Central via https://doi.org/10.1186/s13063-016-1370-9

Background: Growing evidence suggests that experiences in the early years play a major role in children's development in terms of health, wellbeing and educational attainment. The Trial of healthy relationship initiatives for the very early years (THRIVE) aims to evaluate two antenatal group interventions, Enhanced Triple P for Baby and Mellow Bumps, designed for those with additional health or social care needs in pregnancy. As both interventions aim to improve maternal mental health and parenting skills, we hypothesise that in the longer term, participation may lead to an improvement in children's life trajectories. Methods: THRIVE is a three-arm, longitudinal, randomised controlled trial aiming to recruit 500 pregnant women with additional health or social care needs. Participants will be referred by health and social care professionals, predominately midwives. Consenting participants will be block randomised to one of the three arms: Enhanced Triple P for Baby plus care as usual, Mellow Bumps plus care as usual or care as usual. Groups will commence when participants are between 20 and 34 weeks pregnant. Discussion: The population we aim to recruit are traditionally referred to as "hard to reach", therefore we will monitor referrals received from maternity and social care pathways and will be open to innovation to boost referral rates. We will set geographically acceptable group locations for participants, to limit challenges we foresee for group participation and retention. We anticipate the results of the trial will help inform policy and practice in supporting women with additional health and social care needs during antenatal and early postnatal periods. This is currently a high priority for the Scottish and UK Governments. Trial registration: International Standard Randomised Controlled Trials Number (ISRCTN) Registry, ISRCTN:21656568. Registered on 28 February 2014 (registered retrospectively (by 3 months)).

Background: Growing evidence suggests that experiences in the early years play a major role in children's development in terms of health, wellbeing and educational attainment. The Trial of healthy relationship initiatives for the very early years (THRIVE) aims to evaluate two antenatal group interventions, Enhanced Triple P for Baby and Mellow Bumps, designed for those with additional health or social care needs in pregnancy. As both interventions aim to improve maternal mental health and parenting skills, we hypothesise that in the longer term, participation may lead to an improvement in children's life trajectories. Methods: THRIVE is a three-arm, longitudinal, randomised controlled trial aiming to recruit 500 pregnant women with additional health or social care needs. Participants will be referred by health and social care professionals, predominately midwives. Consenting participants will be block randomised to one of the three arms: Enhanced Triple P for Baby plus care as usual, Mellow Bumps plus care as usual or care as usual. Groups will commence when participants are between 20 and 34 weeks pregnant. Discussion: The population we aim to recruit are traditionally referred to as "hard to reach", therefore we will monitor referrals received from maternity and social care pathways and will be open to innovation to boost referral rates. We will set geographically acceptable group locations for participants, to limit challenges we foresee for group participation and retention. We anticipate the results of the trial will help inform policy and practice in supporting women with additional health and social care needs during antenatal and early postnatal periods. This is currently a high priority for the Scottish and UK Governments. Trial registration: International Standard Randomised Controlled Trials Number (ISRCTN) Registry, ISRCTN:21656568. Registered on 28 February 2014 (registered retrospectively (by 3 months)).