Daniel Robotham

Achievement of metabolic targets for diabetes by English primary care practices under a new system of incentives

Objective  To analyse achievement of metabolic targets by English general practices following the introduction of a new system of incentives.

Randomized, single-blind, controlled trial of a specialist behavior therapy team for challenging behavior in adults with intellectual disabilities.

OBJECTIVE Community-based specialist behavior therapy teams may be helpful in managing challenging behavior, but evidence of their effectiveness is limited. This study was designed to examine the effectiveness and costs associated with treatment by a specialist behavior therapy team. METHOD This was a parallel-group, randomized, single-blind controlled trial carried out in an intellectual disabilities service in England. Participants were 63 male and female service users with mild to severe intellectual disability who presented with challenging behavior. The interventions were standard treatment plus applied behavioral analysis (N=32) and standard treatment only (N=31). The primary outcome measure was challenging behavior, as measured by total and subscale scores on the Aberrant Behavior Checklist 3 and 6 months after randomization. Secondary outcome measures were psychiatric comorbidity assessed at 3 and 6 months using the Psychiatric Assessment Schedule for Adults With a Developmental Disability Checklist (PAS-ADD) and total costs recorded at 6 months. Multilevel modeling was used to compare square root transformations of Aberrant Behavior Checklist scores. RESULTS Significant differences were found in the transformed total scores on the Aberrant Behavior Checklist (difference=-0.89, 95% CI=-1.74 to -0.04) and transformed lethargy and hyperactivity subscale scores (common intervention effect=-0.56, 95% CI=-0.97 to -0.15). Standard care participants fared worse on the PAS-ADD comorbid organic disorder subscale. There was a clear trend for lower overall costs of the intervention. CONCLUSIONS Use of a specialist behavior therapy team in addition to standard treatment appears to be more effective in improving challenging behavior and may have financial advantages over standard treatment.

Collaborative development of an electronic Personal Health Record for people with severe and enduring mental health problems

BackgroundPrevious attempts to implement electronic Personal Health Records (ePHRs) underline the importance of stakeholder involvement. We describe the development of an ePHR for people with severe and enduring mental health problems, and provide a model of involving stakeholders throughout.MethodsThere were three stages to the development of the ePHR. These were 1) identifying and responding to user and clinical needs; 2) preliminary testing; and 3) preliminary implementation. Stakeholder involvement was pervasive in all stages. We collaborated with 133 stakeholders in the first stage, 13 in the second, and 26 in the third. On the micro-level, a service user researcher conducted much of the data collection and analysis. On the macro-level, a service user advisory group guided decisions throughout the project, and a service user was an active member of the project executive board and the implementation team.ResultsService users and clinicians preferred an interactive ePHR with features such as access to care plans and care notes, a mood tracker, patient reported outcomes feeding into the clinical record, and social networking features. Many of the above were constructed following consultation with the relevant professionals, however further consultation is required before building a social networking function or providing access to full care notes. Service users positively rated the usability of the ePHR. Drop-in sessions helped service users access technology and learn how to use the ePHR.ConclusionsWe outline four considerations for future developers of ePHRs: appeal, construction, ease of use, and implementation. Success rests on implementation in routine practice, so ePHRs must be intuitive and useful for both service users and staff. Continued involvement of end users throughout the design and testing process can help to achieve this goal.

Applied behaviour analysis and standard treatment in intellectual disability: 2-year outcomes

Applied behaviour analysis by a specialist team plus standard treatment for adults with intellectual disability displaying challenging behaviour was reported to be clinically and cost-effective after 6 months. In a 2-year follow-up of the same trial cohort, participants receiving the specialist intervention had significantly lower total and subdomain Aberrant Behavior Checklist scores than those receiving usual care alone. After adjustment for baseline covariates there was no significant difference in costs between the trial arms.

Service user and carer priorities in a Biomedical Research Centre for mental health

The term “service user involvement in research” implies that service users are stakeholders in the research process, rather than mere participants. The principles of involvement have long been recognised in this journal (Callard & Rose, 2012; Callard et al. 2012; Evans et al., 2012; MacInnes et al., 2011; Rush, 2008; Thornicroft et al., 2002; Townend et al., 2008; Trujols et al., 2013; Ward & Bailey, 2013). Involvement helps prioritise research questions and direct funding into research areas valued by service users (Trivedi & Wykes 2002). One example of this process in action is the recent Roadmap for Mental Health Research in Europe (ROAMER), funded by the European Commission. This exercise included service users, carers and their organisations alongside scientific experts developing mental health research priorities (Fiorillo et al., 2013; Wykes et al., 2015). Nonetheless, service user voices are not always present in setting research agendas. Discussions about “important research areas” can become dominated by the voices of researchers, who may have vested interests in perpetuating their own funding rather than prioritising areas valued by service users.

Staff and service users’ views on a ‘Consent for Contact’ research register within psychosis services: a qualitative study

BackgroundRecruitment to mental health research can be challenging. ‘Consent for Contact’ (C4C) is a novel framework which may expedite recruitment and contribute to equitable access to research. This paper discusses stakeholder perspectives on using a C4C model in services for people with psychosis.MethodThis is a cross sectional study investigating the views of service users and staff using qualitative methods. Eight focus groups were recruited: five with service users (n = 26) and three with clinicians (n = 17). Purposive sampling was applied in order to reflect the local population in terms of ethnicity, experience of psychiatric services and attitudes towards research.ResultsStaff and service users alike associated the principle of ‘consent for contact’ with greater service user autonomy and favourable conditions for research recruitment. Fears around coercion and inappropriate uses of clinical records were common and most marked in service users identifying as having a negative view to research participation. Staff working in inpatient services reported that consenting for future contact might contribute to paranoid ideation. All groups agreed that implementation should highlight safeguards and the opt-in nature of the register.ConclusionsStaff and service users responded positively to C4C. Clinicians explaining C4C to service users should allay anxieties around coercion, degree of commitment, and use of records. For some service users, researcher access to records is likely to be the most challenging aspect of the consultation.

Social validity of randomised controlled trials in health services research and intellectual disabilities: a qualitative exploration of stakeholder views

BackgroundRandomised controlled trials (RCTs) are the gold standard of evidence-based practice in medicine but they have had limited influence in the field of intellectual disabilities. Previous literature suggests that participants and professionals have limited tolerance for this type of research methodology. However, it is not known how well service users, carers and other health professionals understand and accept the need for RCTs, and why it is important for individuals with intellectual disabilities to be included in this kind of research.MethodsWe examined individual perceptions of RCTs in 51 participants (18 carers, 6 service users and 27 professionals) using semi-structured interviews. A framework approach was adopted in the analysis of data.ResultsWe found that participants had concerns about capacity and resource allocation but held positive views towards this type of research methodology. Understanding of the principles behind RCTs was poor amongst service users and a minority of carers, but mediated by previous exposure to research for professionals.ConclusionsThe social validity of RCTs in intellectual disabilities may be compromised by lack of understanding of the design and the on-going concerns about obtaining informed consent especially in incapacitated adults. However, the overall finding that the need for this form of research was seen in a positive light suggests that there is a turning point in the perceptions of stakeholders working in intellectual disabilities services. We recommend that researchers include on-going education on RCT design during trials, tailoring it to all stakeholders with emphasis on strong service user and care involvement. This could be a pivotal element in improving acceptability of, and recruitment to RCTs.

Using digital notifications to improve attendance in clinic: systematic review and meta-analysis

Objectives Assess the impact of text-based electronic notifications on improving clinic attendance, in relation to study quality (according to risk of bias), and to assess simple ways in which notifications can be optimised (ie, impact of multiple notifications). Design Systematic review, study quality appraisal assessing risk of bias, data synthesised in meta-analyses. Data sources MEDLINE, EMBASE, PsycINFO, Web of Science and Cochrane Database of Systematic Reviews (01.01.05 until 25.4.15). A systematic search to discover all studies containing quantitative data for synthesis into meta-analyses. Eligibility criteria Studies examining the effect of text-based electronic notifications on prescheduled appointment attendance in healthcare settings. Primary analysis included experimental studies where randomisation was used to define allocation to intervention and where a control group consisting of ‘no reminders’ was used. Secondary meta-analysis included studies comparing text reminders with voice reminders. Studies lacking sufficient information for inclusion (after attempting to contact study authors) were excluded. Outcome measures Primary outcomes were rate of attendance/non-attendance at healthcare appointments. Secondary outcome was rate of rescheduled and cancelled appointments. Results 26 articles were included. 21 included in the primary meta-analysis (8345 patients receiving electronic text notifications, 7731 patients receiving no notifications). Studies were included from Europe (9), Asia (7), Africa (2), Australia (2) and America (1). Patients who received notifications were 23% more likely to attend clinic than those who received no notification (risk ratio=1.23, 67% vs 54%). Those receiving notifications were 25% less likely to ‘no show’ for appointments (risk ratio=.75, 15% vs 21%). Results were similar when accounting for risk of bias, region and publication year. Multiple notifications were significantly more effective at improving attendance than single notifications. Voice notifications appeared more effective than text notifications at improving attendance. Conclusions Electronic text notifications improve attendance and reduce no shows across healthcare settings. Sending multiple notifications could improve attendance further.

Electronic personal health records for people with severe mental illness; a feasibility study.

BackgroundElectronic Patient Health Records (ePHRs) contain information created, accessed, monitored and maintained by patients. This paper describes how an ePHR called myhealthlocker™ was used by people with severe mental illness to monitor and input their own health-related outcomes, and whether they derived any benefit from it.MethodIndividuals using local secondary mental health services were provided with access to myhealthlocker, an ePHR which allowed them to monitor their health and input information from Patient Reported Outcome Measures (PROMs) across to their clinical record. Participants were given support to use myhealthlocker through drop-in sessions facilitated by an Occupational Therapist. Usage of the site was monitored over time. Surveys and interviews were used to investigate what participants thought about the intervention.Results32 of 58 participants used the ePHR (where usage was defined by logging in at least twice and completing a PROM). Almost all participants who used the site had been referred from community rather than inpatient services. Of those who used the site, 26 out of 32 used it primarily or exclusively through supported drop-in sessions. Almost half of those participants who used the site had used it outside the drop-in sessions. Those who used the site found it useful (n = 32), and most said they would continue to use it (n = 27). There were no apparent differences in usage across gender, diagnosis, and length of service use history. Suggestions for improvement included a social networking component, and finding ways to engage clinicians. In particular, users valued the ability to monitor health outcomes over time.ConclusionsPeople with severe mental illness were able to use an ePHR and derive benefit from monitoring and inputting PROMs. Those who use the site are more likely to have been referred from community mental health services, and then supported to access the ePHR.

Beginning to explore the experience of managing a direct payment for someone with dementia: The perspectives of suitable people and adult social care practitioners

Following legal improvements made around mental capacity together with the Health and Social Care Act, it is now possible for a direct payment to be paid to a ‘Suitable Person’ to manage on someone’s behalf to purchase directly care and support services. People with dementia are a key group affected by this change in England of adult social care. We interviewed nine social care practitioners and seven Suitable People for people with dementia across five English local authorities to begin to examine their experiences of this new method of social care provision. Findings from thematic analyses suggest positive outcomes and multiple beneficiaries, but some challenges: potentially inappropriate processes, support planning, divergence in attitudes towards care and support outcomes. Implications for practice include obfuscation of recipients’ and Suitable People’s best interests and supporting practitioners to explore fully clients’ aspirations for care and support.