How best to engage users of forensic services in research: literature review and recommendations

Guidance on service user involvement is available to help researchers working with people with mental health problems, but there is currently no comprehensive guidance relating to forensic settings where additional issues arise. This rapid review aims to summarise the currently available information on how best to engage users of forensic mental health services in the research process, and to make appropriate recommendations. Medline and five other databases were searched to May 2016 using relevant keywords and Medical Subject Headings, supplemented by a general Internet search. Eleven peer-reviewed journal papers and 12 reports or web-based documents were identified, the majority containing information derived using a qualitative methodology. Five areas of particular relevance to forensic settings were identified: power relations & vulnerability issues (including ethical treatment; informed consent; attitudes of staff and other service users; support), practical difficulties (including ‘consultation fatigue’; tokenistic inclusion; tensions over security and risk management; access; payment; co-authoring); confidentiality and transparency; language and communication and training issues. Recommendations on engaging service users in forensic mental health research are presented

Clinical effectiveness, cost-effectiveness and acceptability of low-intensity interventions in the management of obsessive–compulsive disorder: the Obsessive–Compulsive Treatment Efficacy randomised controlled Trial (OCTET)

Background: The Obsessive–Compulsive Treatment Efficacy randomised controlled Trial emerged from a research recommendation in National Institute for Health and Care Excellence obsessive–compulsive disorder (OCD) guidelines, which specified the need to evaluate cognitive–behavioural therapy (CBT) treatment intensity formats. Objectives: To determine the clinical effectiveness and cost-effectiveness of two low-intensity CBT interventions [supported computerised cognitive–behavioural therapy (cCBT) and guided self-help]: (1) compared with waiting list for high-intensity CBT in adults with OCD at 3 months; and (2) plus high-intensity CBT compared with waiting list plus high-intensity CBT in adults with OCD at 12 months. To determine patient and professional acceptability of low-intensity CBT interventions. Design: A three-arm, multicentre, randomised controlled trial. Setting: Improving Access to Psychological Therapies services and primary/secondary care mental health services in 15 NHS trusts. Participants: Patients aged ≥ 18 years meeting Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition criteria for OCD, on a waiting list for high-intensity CBT and scoring ≥ 16 on the Yale–Brown Obsessive Compulsive Scale (indicative of at least moderate severity OCD) and able to read English. Interventions: Participants were randomised to (1) supported cCBT, (2) guided self-help or (3) a waiting list for high-intensity CBT. Main outcome measures: The primary outcome was OCD symptoms using the Yale–Brown Obsessive Compulsive Scale – Observer Rated. Results: Patients were recruited from 14 NHS trusts between February 2011 and May 2014. Follow-up data collection was complete by May 2015. There were 475 patients randomised: supported cCBT (n = 158); guided self-help (n = 158) and waiting list for high-intensity CBT (n = 159). Two patients were excluded post randomisation (one supported cCBT and one waiting list for high-intensity CBT); therefore, data were analysed for 473 patients. In the short term, prior to accessing high-intensity CBT, guided self-help demonstrated statistically significant benefits over waiting list, but these benefits did not meet the prespecified criterion for clinical significance [adjusted mean difference –1.91, 95% confidence interval (CI) –3.27 to –0.55; p = 0.006]. Supported cCBT did not demonstrate any significant benefit (adjusted mean difference –0.71, 95% CI –2.12 to 0.70). In the longer term, access to guided self-help and supported cCBT, prior to high-intensity CBT, did not lead to differences in outcomes compared with access to high-intensity CBT alone. Access to guided self-help and supported cCBT led to significant reductions in the uptake of high-intensity CBT; this did not seem to compromise patient outcomes at 12 months. Taking a decision-making approach, which focuses on which decision has a higher probability of being cost-effective, rather than the statistical significance of the results, there was little evidence that supported cCBT and guided self-help are cost-effective at the 3-month follow-up compared with a waiting list. However, by the 12-month follow-up, data suggested a greater probability of guided self-help being cost-effective than a waiting list from the health- and social-care perspective (60%) and the societal perspective (80%), and of supported cCBT being cost-effective compared with a waiting list from both perspectives (70%). Qualitative interviews found that guided self-help was more acceptable to patients than supported cCBT. Professionals acknowledged the advantages of low intensity interventions at a population level. No adverse events occurred during the trial that were deemed to be suspected or unexpected serious events. Limitations: A significant issue in the interpretation of the results concerns the high level of access to high-intensity CBT during the waiting list period. Conclusions: Although low-intensity interventions are not associated with clinically significant improvements in OCD symptoms, economic analysis over 12 months suggests that low-intensity interventions are cost-effective and may have an important role in OCD care pathways. Further research to enhance the clinical effectiveness of these interventions may be warranted, alongside research on how best to incorporate them into care pathways

A mixed-methods study exploring the characteristics and needs of long-stay patients in high and medium secure settings in England: implications for service organisation

Background: Forensic psychiatric services provide care for those with mental disorders and offending behaviour. Concerns have been expressed that patients may stay for too long in too high levels of security. The economic burden of these services is high, and they are highly restrictive for patients. There is no agreed standard for ‘long stay’; we defined a length of stay exceeding 5 years in medium secure care, 10 years in high secure care or 15 years in a combination of both settings as long stay. Objectives: To (1) estimate the number of long-stay patients in secure settings; (2) describe patients’ characteristics, needs and care pathways and the reasons for their prolonged stay; (3) identify patients’ perceptions of their treatment and quality of life; and (4) explore stakeholders’ views on long stay. Design: A mixed-methods approach, including a cross-sectional survey (on 1 April 2013) of all patients in participating units to identify long-stay patients [work package (WP) 1], file reviews and consultant questionnaires for long-stay patients (WP2), interviews with patients (WP3) and focus groups with other stakeholders (WP4). Setting: All three high secure hospitals and 23 medium secure units (16 NHS and 9 independent providers) in England. Participants: Information was gathered on all patients in participating units (WP1), from which 401 long-stay patients were identified (WP2), 40 patients (WP3), 17 international and 31 UK experts were interviewed and three focus groups were held (WP4). Results: Approximately 23.5% of high secure patients and 18% of medium secure patients were long-stay patients. We estimated that there are currently about 730 forensic long-stay patients in England. The source of a patient’s admission and the current section of the Mental Health Act [Great Britain. Mental Health Act 1983 (as Amended by the Mental Health Act 2007). London: The Stationery Office; 2007] under which they were admitted predicted long-stay status. Long-stay patients had complex pathways, moving ‘around’ between settings rather than moving forward. They were most likely to be detained under a hospital order with restrictions (section 37/41) and to have disturbed backgrounds with previous psychiatric admissions, self-harm and significant offending histories. The most common diagnosis was schizophrenia, but 47% had been diagnosed with personality disorder. Only 50% had current formal psychological therapies. The rates of violent incidents within institutions and seclusion were high, and a large proportion had unsuccessful referrals to less secure settings. Most patients had some contact with their families. We identified five classes of patients within the long-stay sample with different characteristics. Patients differed in their attribution of reasons for long stay (internal/external), outlook (positive/negative), approach (active/passive) and readiness for change. Other countries have successfully developed specific long-stay services; however, UK experts were reluctant to accept the reality of long stay and that the medical model of ‘cure’ does not work with this group. Limitations: We did not conduct file reviews on non-long-stay patients; therefore, we cannot say which factors differentiate between long-stay patients and non-long-stay patients. Conclusions: The number of long-stay patients in England is high, resulting in high resource use. Significant barriers were identified in developing designated long-stay services. Without a national strategy, these issues are likely to remain. Future work: To compare long-stay patients and non-long-stay patients. To evaluate new service models specifically designed for long-stay patients. Study registration: The National Institute for Health Research (NIHR) Clinical Research Network Portfolio 129376. Funding: The NIHR Health Services and Delivery Research programm

Process and impact of patient involvement in a systematic review of shared decision making in primary care consultations

BACKGROUND: Patient and public involvement and engagement (PPIE) in systematic reviews remains uncommon, despite the policy imperative for patient involvement in research. The aim of this study was to investigate the process and impact of collaborating with members of a patient Research User Group (RUG) on a systematic review about shared decision making around prescribing analgesia in primary care consultations. METHODS: Five members of an established patient RUG collaborated with researchers undertaking a systematic review with narrative synthesis, through workshops held at three time‐points. These addressed the following: designing the protocol, interpreting the results and planning dissemination. Support from a RUG coordinator and user support worker facilitated collaboration throughout the review process. Researchers reflected on how PPIE modified the review at each time‐point. RESULTS: RUG members identified factors important in shared decision making around analgesic prescribing additional to those initially proposed by the research team. Search terms and specific outcomes of interest were amended to reflect these additional factors. Thirty of the 39 patient‐identified factors were absent in the published literature. The categories of factors identified were used as a framework for the narrative synthesis and for reporting results. RUG members prioritized options for disseminating the results. CONCLUSION: PPIE collaboration throughout the systematic review impacted on the scope of the review, highlighting gaps in the literature that were important to patients. Impact on interpretation and dissemination of findings ensured the review directly reflected patient priorities. Challenges and strategies to facilitate PPIE involvement in systematic reviews and suggestions for future researchers are highlighted