Facilitating mental health research for patients, clinicians and researchers: a mixed-method study.

OBJECTIVES: Research registers using Consent for Contact (C4C) can facilitate recruitment into mental health research studies, allowing investigators to contact patients based on clinical records information. We investigated whether such a register was useful for mental health research, seeking the perspectives of patients and research investigators. SETTING AND DESIGN: In 2012, a C4C register was developed in a large secondary mental health provider within the UK; almost 9000 patients have joined. This mixed-method study audited the effectiveness of the register. PARTICIPANTS: A 'mystery shopper' exercise was conducted, and patients (n=21) were recruited to ask clinicians about the availability of research opportunities. Structured interviews were conducted with patients (n=52) about their experiences of being on the register. Similar interviews were conducted with 18 investigators from 19 studies, who had attempted to use the register to recruit participants. OUTCOME MEASURES: The impact of C4C on study recruitment, and whether it helped patients learn about research. RESULTS: So far, the register has provided 928 individuals with 1085 research opportunities (in 60% of cases, the individual agreed to participate in the study). Clinicians were willing to link patients to research opportunities, but often lacked information about studies. For patients, the register provided opportunities which they may not otherwise have; 27 of 52 had participated in studies since joining the register (18 participating for the first time). Most investigators used the register to supplement recruitment to their studies, but described problems in prescreening potential participants from a clinical record for complex studies. CONCLUSIONS: Although the register helped investigators recruit for studies, and provided patients with research opportunities, clinicians' input is still useful for identifying suitable participants. C4C registers should be adapted to provide clinicians with automatically updated information on local studies allowing them to match patients on their caseload with active studies.

Brief report: impact of applied behaviour analysis (ABA) on carer burden and community participation in challenging behaviour: results from a randomised controlled trial.

BACKGROUND: Applied behaviour analysis (ABA) reduces challenging behaviour in people with intellectual disability. There is interest, however, in whether such interventions reduce carer burden and increase community participation in this group. METHODS: A 6-month randomised controlled trial was followed by a longer-term naturalistic follow-up of participants. We studied the impact of the challenging behaviour on the carers and on the daily activities of the participants measured by the Carer Uplift and Burden Scale and Guernsey Community Participation and Leisure Assessment respectively. RESULTS: Both community participation and carer burden improved at 6 and 24 months. Burden showed significant reduction in family carers compared with paid carers. There was no significant intervention effect on the variables under consideration. CONCLUSIONS: ABA appears to be no more effective than standard care in improving social outcomes in people with intellectual disabilities and challenging behaviour but this requires further examination in a larger trial.

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. METHODS: Clinical data were abstracted from the records of 2099 patients at 26 general practices in South London. Cross-sectional data for 2005 were obtained for all general practices in England, including characteristics of registered populations, practice organizational characteristics and 'Quality and Outcomes Framework' (QOF) metabolic targets. RESULTS: Among 26 practices in South London, the median practice-specific proportion of patients achieving HbA(1c) < or = 7.4% each year increased: 2000, 22%; 2001, 32%; 2002, 37%; 2003, 38% and in 2005 from QOF, 57%. In 8484 general practices in England in 2005, the median proportion of diabetic patients with HbA(1c) < or = 7.4% was 59.0%; the highest and lowest centiles ranged from 27.7 to 89.8% among general practices, from 46.9 to 71.0% among 303 primary care trusts and from 49.9 to 67.1.% among 28 health authorities. Comparing the highest and lowest tertiles of deprivation, the per cent achieving HbA(1c) < or = 7.4% was 2.96% (95% confidence interval 2.23-3.69%) lower in the most deprived areas. In areas with the highest proportion of ethnic minorities, the per cent achieving HbA(1c) < or = 7.4% was 2.73% (1.85-3.61%) lower than where there were few ethnic minorities. Practices with the highest total QOF organization scores had more patients achieving the HbA(1c) target (difference 5.03%, 4.43-5.64%). CONCLUSIONS: Intermediate outcomes are improving but deprived areas with less organized services achieve worse glycaemic control. Financial incentives may contribute to improved services and better clinical outcomes.