What do people with intellectual disabilities, their family members and paid carers understand about psychotropic medication? A rapid review.

BACKGROUND: People with intellectual disabilities are more likely to be prescribed psychotropic medication than the general population and are frequently prescribed multiple medications. Understanding people with intellectual disabilities and carer perspectives is essential to improving the quality of psychotropic medication prescribing and usage. METHOD: A rapid review explored people with intellectual disabilities' understanding of psychotropic medications, as well as family members and paid carers, and how this understanding can be improved. RESULTS: Twenty-one journal articles were included. Lack of understanding of medication was universal, with participants often unaware of adverse effects, alternatives, and rights around medication. There was also a lack of involvement in decision making for all participants. Some interventions aimed at people with intellectual disabilities or paid carers helped to improve knowledge. CONCLUSION: Evaluating how best to improve psychotropic medication understanding for people with intellectual disabilities, family members and paid carers should be a focus for future research.

Constipation prevalence and risk from prescribed medications in people with intellectual disability: Findings from an English mortality programme.

Constipation is common in people with intellectual disability, with case reports of associated deaths. Risk factors include lifestyle factors, health conditions, and certain medications. We aimed to explore constipation in a sample of people with intellectual disability who died in 2021. We described prevalence of constipation, causes of death and the risk of secondary constipation from prescribed medications. Medications were scored based on the risk of constipation indicated in the drug profile. Forty-eight percent of the sample had constipation. Half of the sample were prescribed at least two medications that are commonly associated with side effects of constipation. There were high rates of antipsychotic (30%) and laxative (40%) drug prescription. Five people with a history of constipation died of causes of death associated with constipation. Our findings highlight the risk of secondary constipation due to prescribed medication and the seriousness of the condition in people with intellectual disability.

An exploration of lifestyle/obesity programmes for adults with intellectual disabilities through a realist lens: Impact of a 'context, mechanism and outcome' evaluation.

BACKGROUND: Obesity is higher in people with intellectual disabilities. AIMS: There are two aims of this explorative paper. Firstly, using a realist lens, to go beyond 'what works' and examine the 'context, mechanisms and outcomes' (CMO) of lifestyle/obesity programmes for this population. Second, using a logic model framework to inform how these programmes could be implemented within practice. METHOD: We explored six-review papers and the individual lifestyle/obesity programmes that these papers reviewed using the CMO framework. RESULTS: There were few theoretically underpinned, multi-component programmes that were effective in the short to long-term and many failed to explore the 'context and mechanisms'. We developed a logic model and engaged in two co-production workshops to refine this model. DISCUSSION: Using a realist approach, programmes need to be underpinned by both individual and systems change theories, be multi-component, have a closer understanding of the interplay of the 'context and mechanisms', and co-designed using a logic model framework.

Etiologic Workup in Cases of Cryptogenic Stroke: A Systematic Review of International Clinical Practice Guidelines.

Background and Purpose- Identifying the etiology of acute ischemic stroke is essential for effective secondary prevention. However, in at least one third of ischemic strokes, existing investigative protocols fail to determine the underlying cause. Establishing etiology is complicated by variation in clinical practice, often reflecting preferences of treating clinicians and variable availability of investigative techniques. In this review, we systematically assess the extent to which there exists consensus, disagreement, and gaps in clinical practice recommendations on etiologic workup in acute ischemic stroke. Methods- We identified clinical practice guidelines/consensus statements through searches of 4 electronic databases and hand-searching of websites/reference lists. Two reviewers independently assessed reports for eligibility. We extracted data on report characteristics and recommendations relating to etiologic workup in acute ischemic stroke and in cases of cryptogenic stroke. Quality was assessed using the AGREE II tool (Appraisal of Guidelines for Research & Evaluation). Recommendations were synthesized according to a published algorithm for diagnostic evaluation in cryptogenic stroke. Results- We retrieved 16 clinical practice guidelines and 7 consensus statements addressing acute stroke management (n=12), atrial fibrillation (n=5), imaging (n=5), and secondary prevention (n=1). Five reports were of overall high quality. For all patients, guidelines recommended routine brain imaging, noninvasive vascular imaging, a 12-lead ECG, and routine blood tests/laboratory investigations. Additionally, ECG monitoring (>24 hours) was recommended for patients with suspected embolic stroke and echocardiography for patients with suspected cardiac source. Three reports recommended investigations for rarer causes of stroke. None of the reports provided guidance on the extent of investigation needed before classifying a stroke as cryptogenic. Conclusions- While consensus exists surrounding standard etiologic workup, there is little agreement on more advanced investigations for rarer causes of acute ischemic stroke. This gap in guidance, and in the underpinning evidence, demonstrates missed opportunities to better understand and protect against ongoing stroke risk. Registration- URL: https://www.crd.york.ac.uk/PROSPERO/; Unique identifier: CRD42019127822.

Healthcare practitioners' views and experiences of barriers and facilitators to weight management interventions for adults with intellectual disabilities.

BACKGROUND: Obesity is common in adults with intellectual disabilities, yet little is known about how weight management interventions are provided for this population. METHODS: Semi-structured interviews were held with 14 healthcare practitioners involved in weight management interventions in an English county. A study topic guide was developed to elicit practitioners' views and experiences of barriers and facilitators to weight management for adults with intellectual disabilities. Responses were analysed using thematic analysis. RESULTS: Several barriers are involved in weight management for people with intellectual disabilities including communication challenges, general practitioners' lack of knowledge and awareness of weight management services, inconsistencies in caring support, resource constraints, wider external circumstances surrounding the individuals and motivational issues. Facilitators include reasonable adjustments to existing weight management services. However, there is a need for specialist weight management provision for people with intellectual disabilities. CONCLUSIONS: This study provides suggestions for future research, policy and practice consideration.

An integrative review of multicomponent weight management interventions for adults with intellectual disabilities.

BACKGROUND: Obesity is more prevalent in people with intellectual disabilities and increases the risk of developing serious medical conditions. UK guidance recommends multicomponent weight management interventions (MCIs), tailored for different population groups. METHODS: An integrative review utilizing systematic review methodology was conducted to identify the types of MCIs delivered to adults with intellectual disabilities. FINDINGS: Five studies were identified. All of the studies' MCIs were tailored for adults with intellectual disabilities. Tailoring included measures such as simplified communication tools, individualized sessions, and the presence of carers where appropriate. CONCLUSIONS: Emerging evidence suggests ways in which MCIs can be tailored for adults with intellectual disabilities but, given the few studies identified, it is not possible to recommend how they can be routinely tailored. Further studies are justified for adults with intellectual disabilities at risk of obesity-related conditions.

Socio-epidemiological determinants of 2002 plague outbreak in Himachal Pradesh, India: a qualitative study.

BACKGROUND: This qualitative investigation was conducted to determine the socio-epidemiological factors related to the plague outbreak (2002) in Himachal Pradesh (HP), India. METHODS: The data for socio-epidemiological factors related to the plague outbreak (2002) in HP was obtained from residents through 150 in-depth Interviews (IDI) and 30 Focus Group Discussions (FGD) during six visits (from May 2011 to April 2012) by the research team. Natives, health officials and the nomadic population were interviewed. According to their opinion and viewpoints data was collected and their lifestyle and hunting practices were studied in detail. Tape recorders were used during various FGDs and IDIs. The interviews and FGDs were later transcribed and coded. In-depth analysis of the recorded data was done using an inductive thematic analysis approach. RESULTS: The study reports that the outbreak in 2002 in a few villages of Himachal Pradesh was that of plague and it occurred by the contact of an index case with wild animals after hunting and de-skinning. The first wave of plague transmission which took 16 lives of residents was followed by a second wave of transmission in a ward of a tertiary care hospital where one visitor acquired it from relatives of the index case and succumbed. The life-style practices of residents (hunting behavior, long stay in caves and jungles, overcrowding in houses, poor hygiene and sanitation, belief in 'God' and faith healers for cure of diseases) was optimal for the occurrence and rapid spread of such a communicable disease. The man-rodent contact is intensified due to the practice of hunting in such a rodent-ridden environment. The residents harbor a strong belief that plague occurs due to the wrath of gods. Various un-reported outbreaks of plague were also observed by officials, residents and old folk. The persistence of plague in HP is favoured by its hilly terrain, inaccessible areas, inclement weather (snow) in winters, unhygienic lifestyle, hunting practices of residents, and treatment practices through faith healers. CONCLUSIONS: This study suggests that the lifestyle of the natives of HP and other socio-epidemiological factors played a role in the outbreak of plague in that area.

Linking lifestyle of marginalized Gujjar population in Himachal Pradesh with plague outbreaks: a qualitative enquiry.

It was a qualitative enquiry conducted amongst Gujjar population of Shimla district, Himachal Pradesh (HP). The study was carried out to link various lifestyle factors of the Gujjar population with the 2002 outbreak of plague in HP. Focus Group discussions guide was prepared beforehand which had information about education, livelihood, dietary pattern, relationships, personal hygiene and habits and health care utilization. It was emerged out of the study that the population has poor literacy levels, poor personal hygiene, overcrowding in hutments, closely-knit social structure, lack of awareness about common diseases, and frequent visits to forests and living in caves during their visits. Further, government health care facilities are not routinely utilized by the Gujjar community. These factors might lead to increased proximity and exposure to wild rats among Gujjar population, thus increasing their susceptibility to plague. They are, therefore a potential link between any source of infection in forests and in native population of HP and other states. The government agencies should take various measures to increase health care access of such vulnerable population through outreach health care programs.

Learning from new colorectal cancers: a qualitative synthesis of significant event reports.

BACKGROUND: Colorectal cancer is the second leading cause of cancer-related mortality in the UK and a significant contributor to morbidity and mortality worldwide. Early diagnosis provides opportunities for intervention and improved survival. Significant event analysis (SEA) is a well-established quality improvement method for learning from new cancer diagnoses. AIM: To provide additional insights into diagnostic processes for colorectal cancer and to identify areas for improvement in patient care pathways. DESIGN & SETTING: Fifty-three general practices across Pennine Lancashire, England, submitted one or more SEA reports as part of an incentivised scheme. METHOD: A standardised data collection form was used to collate learning points and recommendations for improvements. In total, 161 reports were analysed using an inductive framework analysis approach. RESULTS: There was an overarching theme of building vigilance and collaboration between and within general practices and secondary care. The following four main sub-themes were also identified: education; individualised and flexible care; ownership and continuity; and communication. CONCLUSION: These findings provide additional insights into colorectal cancer pathways from a primary care perspective. Practices should be supported in developing protocols for assessment and follow-up of patients with varying presentations. Screening and access to investigations are paramount for improving early diagnosis; however, a flexible diagnostic approach is required according to the individual circumstances of each patient.

Complex interventions for aggressive challenging behaviour in adults with intellectual disability: A rapid realist review informed by multiple populations.

OBJECTIVES: Approximately 10% of people with intellectual disability display aggressive challenging behaviour, usually due to unmet needs. There are a variety of interventions available, yet a scarcity of understanding about what mechanisms contribute to successful interventions. We explored how complex interventions for aggressive challenging behaviour work in practice and what works for whom by developing programme theories through contexts-mechanism-outcome configurations. METHODS: This review followed modified rapid realist review methodology and RAMESES-II standards. Eligible papers reported on a range of population groups (intellectual disability, mental health, dementia, young people and adults) and settings (community and inpatient) to broaden the scope and available data for review. RESULTS: Five databases and grey literature were searched and a total of 59 studies were included. We developed three overarching domains comprising of 11 contexts-mechanism-outcome configurations; 1. Working with the person displaying aggressive challenging behaviour, 2. Relationships and team focused approaches and 3. Sustaining and embedding facilitating factors at team and systems levels. Mechanisms underlying the successful application of interventions included improving understanding, addressing unmet need, developing positive skills, enhancing carer compassion, and boosting staff self-efficacy and motivation. CONCLUSION: The review emphasises how interventions for aggressive challenging behaviour should be personalised and tailored to suit individual needs. Effective communication and trusting relationships between service users, carers, professionals, and within staff teams is essential to facilitate effective intervention delivery. Carer inclusion and service level buy-in supports the attainment of desired outcomes. Implications for policy, clinical practice and future directions are discussed. PROSPERO REGISTRATION NUMBER: CRD42020203055.

The provision and impact of online patient access to their electronic health records (EHR) and transactional services on the quality and safety of health care: systematic review protocol.

BACKGROUND: Innovators have piloted improvements in communication, changed patterns of practice and patient empowerment from online access to electronic health records (EHR). International studies of online services, such as prescription ordering, online appointment booking and secure communications with primary care, show good uptake of email consultations, accessing test results and booking appointments; when technologies and business process are in place. Online access and transactional services are due to be rolled out across England by 2015; this review seeks to explore the impact of online access to health records and other online services on the quality and safety of primary health care. OBJECTIVE: To assess the factors that may affect the provision of online patient access to their EHR and transactional services, and the impact of such access on the quality and safety of health care. METHOD: Two reviewers independently searched 11 international databases during the period 1999-2012. A range of papers including descriptive studies using qualitative or quantitative methods, hypothesis-testing studies and systematic reviews were included. A detailed eligibility criterion will be used to shape study inclusion. A team of experts will review these papers for eligibility, extract data using a customised extraction form and use the Grading of Recommendations Assessment, Development and Evaluation (GRADE) instrument to determine the quality of the evidence and the strengths of any recommendation. Data will then be descriptively summarised and thematically synthesised. Where feasible, we will perform a quantitative meta-analysis. Prospero (International Prospective Register of Systematic Reviews) registration number: crd42012003091.

Can a new role, the (Trainee) Associate Psychological Practitioner (T/APP), add value in General Practice? Results from the pilot year evaluation.

BACKGROUND: The deployment of (Trainee) Associate Psychological Practitioners (T/APPs) to deliver brief psychological interventions focusing on preventing mental health deterioration and promoting emotional wellbeing in General Practice settings is a novel development in the North West of England. As the need and demand for psychological practitioners increases, new workforce supply routes are required to meet this growth. AIMS: To evaluate the clinical impact and efficacy of the mental health prevention and promotion service, provided by the T/APPs and the acceptability of the role from the perspective of the workforce and the role to T/APPs, patients and services. METHODS: A mixed-methods design was used. To evaluate clinical outcomes, patients completed measures of wellbeing (WEMWBS), depression (PHQ-9), anxiety (GAD-7) and resilience (BRS) at the first session, final session and at a 4-6 week follow-up. Paired-samples t-tests were conducted comparing scores from session 1 and session 4, and session 1 and follow-up for each of the four outcome measures. To evaluate acceptability, questionnaires were sent to General Practice staff, T/APPs and patients to gather qualitative and quantitative feedback on their views of the T/APP role. Quantitative responses were collated and summarised. Qualitative responses were analysed using inductive summative content analysis to identify themes. RESULTS: T-test analysis revealed clinically and statistically significant reductions in depression and anxiety and elevations in wellbeing and resiliency between session 1 and session 4, and at follow-up. Moderate-large effect sizes were recorded. Acceptability of the T/APP role was established across General Practice staff, T/APPs and patients. Content analysis revealed two main themes: positive feedback and constructive feedback. Positive sub-themes included accessibility of support, type of support, patient benefit and primary care network benefit. Constructive sub-themes included integration of the role and limitations to the support. CONCLUSIONS: The introduction of T/APPs into General Practice settings to deliver brief mental health prevention and promotion interventions is both clinically effective and acceptable to patients, General Practice staff and psychology graduates.

Estimation of the minimal clinically important difference on the Aberrant Behaviour Checklist-Irritability (ABC-I) for people with intellectual disabilities who display aggressive challenging behaviour: A triangulated approach.

BACKGROUND: The minimal clinically important difference (MCID) is relevant in the estimation of improvement in a patient outcome. AIM: To determine the MCID on the Aberrant Behaviour Checklist-Irritability (ABC-I), widely used to measure the effects of intervention for aggressive challenging behaviour in people with intellectual disabilities. METHOD AND PROCEDURES: We utilised distribution and anchor based methods to estimate the ABC-I MCID. We extracted data from 15 randomised controlled trials (RCTs) for meta-analysis. We conducted three online workshops with family carers and professionals to consider meaningful change in case vignettes of increasing severity of aggressive challenging behaviour. OUTCOMES AND RESULTS: We did not find overlap in the range of values between the two approaches. The meta-analysis indicated a range of MCID on the ABC-I (0.05, 4.94) whilst the anchor-based estimation indicated a larger change (6.6, 16.6). CONCLUSIONS AND IMPLICATIONS: The MCID is essential in interpreting the results from intervention studies. The present work was undertaken as part of a wider programme on the development and testing of a psychosocial intervention for aggressive challenging behaviour, and it is of interest to researchers in justifying how they choose and determine the MCID on the outcome of interest.

GP perceptions of community-based children's mental health services in Pennine Lancashire: a qualitative study.

BACKGROUND: GP satisfaction with specialist Child & Adolescent Mental Health Services (CAMHS) is often reported as low in the UK, and internationally. AIM: To explore GP perceptions of local children's mental health services and to understand their experiences of a novel GP-attached Primary Mental Health Worker (PMHW) service. DESIGN & SETTING: Qualitative research involving GPs in Pennine Lancashire. METHOD: Semi-structured face-to-face interviews of GPs (n = 9) were carried out. Thematic analysis was undertaken. RESULTS: Themes identified included: 1) The role of the GP: most GPs perceived their role to be signposting and referring patients with mental health issues to specialist services, rather than offering care directly; 2) Clarity on help available: GPs were unclear about specialist CAMHS referral criteria and alternative resources available. GPs experienced communication challenges with specialist CAMHS; 3) Getting advice and support: PMHWs enabled GPs to have informal discussions, and to seek advice about children. Some GPs felt they could recognise problems earlier and were able to access help more quickly; and 4) Development needs: some GPs felt they required increased training in supporting children with mental health problems, and identified a need for further collaboration with schools and specialist CAMHS. CONCLUSION: The study identified challenges that GPs face with accessing and utilising specialist CAMHS. GPs who had PMHWs based in their practices expressed increased satisfaction with these services. GP-attached PMHWs can potentially reduce the challenges faced by GPs in primary care by offering timely and accessible advice, and improving access to specialist CAMHS.

A scoping review of community holistic interventions for older people with multimorbidity.

BACKGROUND: In many areas, new regional community-based services have been established to provide holistic care to patients with high physical, mental and social needs. Older people represent a group with multimorbidity and high healthcare needs that may benefit from holistic care, although uncertainty remains whether such an approach is effective. AIM: To review evidence for community holistic interventions in older people with multimorbidity. METHOD: The authors screened studies referenced by an earlier Cochrane Review and Academy of Medical Sciences report, both of which looked at interventions and populations more broadly, and their own searches of Medline, EMBASE, trial registration databases and hand-searching of journals since 2015. The authors included controlled community-based studies of holistic interventions with data for people aged at least 60 years. RESULTS: Studies found (five published, two ongoing) were heterogeneous. The only significant improvement relating to physical or mental outcomes occurred in self-rated health scores, seen in two studies. One consisting entirely of diabetics showed developing a self-management plan improved self-rated health (P = 0.023), and Mental Component Summary (P = 0.03). The other used a multidisciplinary-team-guided personal care plan and found self-rated overall health improved (P = 0.02). Three studies looked at service usage, only one seeing a benefit, and only in the second year. CONCLUSION: Community-based holistic interventions for people with multimorbidity tended to focus on disease management or medication modification, and resulted in few significant benefits, almost entirely in self-rated health measures. Research into interventions focused on those with the highest needs, for example, multimorbidity with frailty; high number of comorbidities may be more likely to demonstrate meaningful benefits.

Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review.

BACKGROUND: Globally, people with intellectual disabilities and/or autism experience health inequalities. Death occurs at a younger age and the prevalence of long-term morbidities is higher than in the general population. Despite this, their primary healthcare access rates are lower than the general population, their health needs are often unmet, and their views and experiences are frequently overlooked in research, policy, and practice. AIM: To investigate the barriers and facilitators reported by individuals with intellectual disabilities, autism, or both, and/or their carers, to accessing and utilising primary health care for their physical and mental health needs. DESIGN & SETTING: An integrative review was undertaken, which used systematic review methodology. METHOD: Electronic databases MEDLINE, Embase, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and Cochrane were searched for relevant studies (all languages) using a search strategy. Two researchers independently screened the results and assessed the quality of the studies. RESULTS: Sixty-three international studies were identified. Six main themes relating to barriers and facilitators emerged from an analysis of these studies. The main themes were: training; knowledge and awareness; communication; fear and embarrassment; involvement in healthcare decision-making; and time. All the themes were underpinned by the need for greater care, dignity, respect, collaborative relationships, and reasonable adjustments. Opposing barriers and facilitators were identified within each of the main themes. CONCLUSION: Adolescents and adults with intellectual disabilities and/or autism experience several barriers to accessing and utilising primary health care. The findings highlight the reasonable adjustments and facilitators that can be implemented to ensure that these individuals are not excluded from primary health care.

GP incentives to design hypertension and atrial fibrillation local quality-improvement schemes: a controlled before-after study in UK primary care.

BACKGROUND: Financial incentives in the UK such as the Quality and Outcomes Framework (QOF) reward GP surgeries for achievement of nationally defined targets. These have shown mixed results, with weak evidence for some measures, but also possible unintended negative effects. AIM: To look at the effects of a local intervention for atrial fibrillation (AF) and hypertension, with surgeries rewarded financially for work, including appointing designated practice leads, attendance at peer review workshops, and producing their own protocols. DESIGN AND SETTING: A controlled before-after study comparing surgery performance measures in UK primary care. METHOD: This study used published QOF data to analyse changes from baseline in mean scores per surgery relating to AF and hypertension prevalence and management at T1 (12 months) and T2 (24 months) for the intervention group, which consisted of all 58 surgeries in East Lancashire Clinical Commissioning Group (CCG), compared to the control group, which consisted of all other surgeries in north-west England. RESULTS: There was a small acceleration between T0 (baseline) and T2 in recorded prevalence of hypertension in the intervention group compared to the controls, difference 0.29% (95% confidence interval [CI] = 0.05 to 0.53), P = 0.017, but AF prevalence did not increase more in the intervention group. Improvement in quality of management of AF was significantly better in the intervention group, difference 3.24% (95% CI = 1.37 to 5.12), P = 0.001. CONCLUSION: This intervention improved diagnosis rates of hypertension but not AF, though it did improve quality of AF management. It indicates that funded time to develop quality-improvement measures targeted at a local population and involving peer support can engage staff and have the potential to improve quality.

Etiologic workup in cases of cryptogenic stroke: protocol for a systematic review and comparison of international clinical practice guidelines.

BACKGROUND: Stroke is a leading cause of death and disability worldwide. Identifying the aetiology of ischaemic stroke is essential in order to initiate appropriate and timely secondary prevention measures to reduce the risk of recurrence. For the majority of ischaemic strokes, the aetiology can be readily identified, but in at least 30% of cases, the exact aetiology cannot be determined using existing investigative protocols. Such strokes are classed as 'cryptogenic' or as a stroke of unknown origin. However, there exists substantial variation in clinical practice when investigating cases of seemingly cryptogenic stroke, often reflecting local service availability and the preferences of treating clinicians. This variation in practice is compounded by the lack of international consensus as to the optimum level and timing of investigations required following a stroke. To address this gap, we aim to systematically review and compare recommendations in evidence-based clinical practice guidelines (CPGs) that relate to the assessment and investigation of the aetiology of ischaemic stroke, and any subsequent diagnosis of cryptogenic stroke. METHOD: We will search for CPGs using electronic databases (MEDLINE, Health Management Information Consortium (HMIC), EMBASE, and CINAHL), relevant websites and search engines (e.g. guideline specific websites, governmental, charitable, and professional practice organisations) and hand-searching of bibliographies and reference lists. Two reviewers will independently screen titles, abstracts and CPGs using a pre-defined relevance criteria form. From each included CPG, we will extract definitions and terms for cryptogenic stroke; recommendations related to assessment and investigation of the aetiology of stroke, including the grade of recommendations and underpinning evidence. The quality of the included CPGs will be assessed using the AGREE II (Appraisal of Guidelines for Research and Evaluation) tool. Recommendations across the CPGs will be summarised descriptively highlighting areas of convergence and divergence between CPGs. DISCUSSION: To our knowledge, this will be the first review to systematically compare recommendations of international CPGs on investigating the aetiology of ischaemic stroke. The findings will allow for a better understanding of international perspectives on the optimum level of investigations required following a stroke and thus contribute to achieving greater international consensus on best practice in this important and complex area. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42019127822.

Interventions for mental health problems in children and adults with severe intellectual disabilities: a systematic review.

OBJECTIVE: Mental health problems are more prevalent in people with than without intellectual disabilities, yet treatment options have received little attention. The aim of this study was to identify and evaluate the effectiveness of pharmacological and psychological interventions in the treatment of mental health problems in children and adults with severe and profound intellectual disabilities, given their difficulties in accessing standard mental health interventions, particularly talking therapies, and difficulties reporting drug side effects. DESIGN: A systematic review using electronic searches of PsycINFO, PsycTESTS, EMBASE, MEDLINE, CINAHL, ERIC, ASSIA, Science Citation Index, Social Science Citation Index and CENTRAL was conducted to identify eligible intervention studies. Study selection, data extraction and quality appraisal were performed by two independent reviewers. PARTICIPANTS: Study samples included at least 70% children and/or adults with severe or profound intellectual disabilities or reported the outcomes of this subpopulation separate from participants with other levels of intellectual disabilities. INTERVENTIONS: Eligible intervention studies evaluated a psychological or pharmacological intervention using a control condition or pre-post design. OUTCOMES: Symptom severity, frequency or other quantitative dimension (e.g., impact), as assessed with standardised measures of mental health problems. RESULTS: We retrieved 41 232 records, reviewed 573 full-text articles and identified five studies eligible for inclusion: three studies evaluating pharmacological interventions, and two studies evaluating psychological interventions. Study designs ranged from double-blind placebo controlled crossover trials to single-case experimental reversal designs. Quality appraisals of this very limited literature base revealed good experimental control, poor reporting standards and a lack of follow-up data. CONCLUSIONS: Mental ill health requires vigorous treatment, yet the current evidence base is too limited to identify with precision effective treatments specifically for children or adults with severe and profound intellectual disabilities. Clinicians therefore must work on the basis of general population evidence, while researchers work to generate more precise evidence for people with severe and profound intellectual disabilities. PROSPERO REGISTRATION NUMBER: CRD 42015024469.

Patients' online access to their electronic health records and linked online services: a systematic review in primary care.

BACKGROUND: Online access to medical records by patients can potentially enhance provision of patient-centred care and improve satisfaction. However, online access and services may also prove to be an additional burden for the healthcare provider. AIM: To assess the impact of providing patients with access to their general practice electronic health records (EHR) and other EHR-linked online services on the provision, quality, and safety of health care. DESIGN AND SETTING: A systematic review was conducted that focused on all studies about online record access and transactional services in primary care. METHOD: Data sources included MEDLINE, Embase, CINAHL, Cochrane Library, EPOC, DARE, King's Fund, Nuffield Health, PsycINFO, OpenGrey (1999-2012). The literature was independently screened against detailed inclusion and exclusion criteria; independent dual data extraction was conducted, the risk of bias (RoB) assessed, and a narrative synthesis of the evidence conducted. RESULTS: A total of 176 studies were identified, 17 of which were randomised controlled trials, cohort, or cluster studies. Patients reported improved satisfaction with online access and services compared with standard provision, improved self-care, and better communication and engagement with clinicians. Safety improvements were patient-led through identifying medication errors and facilitating more use of preventive services. Provision of online record access and services resulted in a moderate increase of e-mail, no change on telephone contact, but there were variable effects on face-to-face contact. However, other tasks were necessary to sustain these services, which impacted on clinician time. There were no reports of harm or breaches in privacy. CONCLUSION: While the RoB scores suggest many of the studies were of low quality, patients using online services reported increased convenience and satisfaction. These services positively impacted on patient safety, although there were variations of record access and use by specific ethnic and socioeconomic groups. Professional concerns about privacy were unrealised and those about workload were only partly so.