The RUDY study: using digital technologies to enable a research partnership.

Patients have extensive experience of their disease that can enhance the design and execution of research leading to significant innovations and efficiencies in the research process. The research community on the whole have been slow to adopt practices that enable patients to become active partners in research. Digital technologies are providing the means to do this more easily and so are increasingly being used to interact with patients and involve them in the design and execution of research. The RUDY (Rare UK Diseases of bone, joints and blood vessels) study's pioneering approach applies a custom-developed electronic platform where patients can contribute information over time about their disease experience, lifestyle and clinical history. This is combined with a state-of-the-art Dynamic Consent model and a commitment to patient-driven research, to further our understanding of rare diseases. This paper describes the RUDY study and the benefits that have been gained from adopting this partnership approach to research.

A longitudinal investigation of repressive coping and ageing.

OBJECTIVES: Two studies investigated the possibility that repressive coping is more prevalent in older adults and that this represents a developmental progression rather than a cohort effect. Study 1 examined repressive coping and mental health cross-sectionally in young and old adults. Study 2 examined whether there was a developmental progression of repressive coping prevalence rates in a longitudinal sample of older adults. METHOD: Study 1 compared younger adults (mean age 27.6 years) with older adults (mean age 74.2 years) on inventories of mental health and well-being and examined the prevalence of repressive coping in both samples. Study 2 re-tested a sample of older adults previously reported following an interval of 7 years. RESULTS AND CONCLUSION: Study 1 - in line with previous research older adults demonstrated greater psychological well-being and had a higher prevalence of repressive coping than younger adults (at 30% vs. 12% respectively). Study 2 - the data indicated that the prevalence of repressive coping rose from 41% at the first time of testing (2002) to 56.4% at the second testing interval (2009). These results suggest that repressive coping may increase across the lifespan in certain individuals and continue to increase throughout older adulthood. Furthermore, this increase in repressive coping with age appears to result in better well-being in those older adults who become repressive copers.

Joint crisis plans for people with borderline personality disorder: feasibility and outcomes in a randomised controlled trial.

BACKGROUND: People with borderline personality disorder frequently experience crises. To date, no randomised controlled trials (RCTs) of crisis interventions for this population have been published. AIMS: To examine the feasibility of recruiting and retaining adults with borderline personality disorder to a pilot RCT investigating the potential efficacy and cost-effectiveness of using a joint crisis plan. METHOD: An RCT of joint crisis plans for community-dwelling adults with borderline personality disorder (trial registration: ISRCTN12440268). The primary outcome measure was the occurrence of self-harming behaviour over the 6-month period following randomisation. Secondary outcomes included depression, anxiety, engagement and satisfaction with services, quality of life, well-being and cost-effectiveness. RESULTS: In total, 88 adults out of the 133 referred were eligible and were randomised to receive a joint crisis plan in addition to treatment as usual (TAU; n = 46) or TAU alone (n = 42). This represented approximately 75% of our target sample size and follow-up data were collected on 73 (83.0%) participants. Intention-to-treat analysis revealed no significant differences in the proportion of participants who reported self-harming (odds ratio (OR) = 1.9, 95% CI 0.53-6.5, P = 0.33) or the frequency of self-harming behaviour (rate ratio (RR) = 0.74, 95% CI 0.34-1.63, P = 0.46) between the two groups at follow-up. No significant differences were observed between the two groups on any of the secondary outcome measures or costs. CONCLUSIONS: It is feasible to recruit and retain people with borderline personality disorder to a trial of joint crisis plans and the intervention appears to have high face validity with this population. However, we found no evidence of clinical efficacy in this feasibility study.

Crisis interventions for people with borderline personality disorder.

BACKGROUND: People with borderline personality disorder (BPD) frequently present to health services in crisis, often involving suicidal thoughts or actions. Despite this, little is known about what constitutes effective management of acute crises in this population. OBJECTIVES: To review the evidence for the effectiveness of crisis interventions for adults with BPD in any setting. For the purposes of the review, we defined crisis intervention as 'an immediate response by one or more individuals to the acute distress experienced by another individual, which is designed to ensure safety and recovery and lasts no longer than one month.' SEARCH METHODS: We searched the following databases in September 2011: CENTRAL (The Cochrane Library 2011, Issue 3), MEDLINE (1948 to August Week 5 2011), MEDLINE In Process & Other Non-indexed Citations (8 September 2011), EMBASE (1980 to Week 36 2011), PsycINFO (1806 to September Week 1 2011), CINAHL (1937 to current), Social Services Abstracts (1979 to current), Social Care Online (12 September 2011), Science Citation Index (1970 to current), Social Science Citation Index (1970 to current), Conference Proceedings Citation Index - Science (1990 to current), Conference Proceedings Citation Index - Social Science and Humanities (1990 to current) and ZETOC Conference proceedings (12 September 2011). We searched for dissertations in WorldCat (12 September 2011), Australasian Digital Theses Program (ADTP; 12 September 2011), Networked Digital Library of Theses and Dissertations (NDLTD), 12 September 2011 and Theses Canada Portal (12 September 2011). We searched for trials in the International Clinical Trials Registry Platform (ICTRP) and searched reference lists from relevant literature. We contacted the 10 most published researchers in the field of BPD (as indexed by BioMed Experts), in addition to contacting topic experts, Marsha Linehan, Arnoud Arntz and Paul Links, about ongoing trials and unpublished data. SELECTION CRITERIA: Randomised controlled trials (RCTs) comparing crisis interventions with usual care or no intervention or a waiting list control for adults of any age with BPD. DATA COLLECTION AND ANALYSIS: Two authors independently screened titles, abstracts and full-text articles and assessed these against the inclusion criteria. MAIN RESULTS: The search identified 15 studies, 13 of which we excluded. Reasons for exclusion were: lack of randomisation (N = 8); retrospective design (N = 2); or the intervention was a complex psychological therapy lasting longer than one month (N = 3). We identified two ongoing RCTs that met the inclusion criteria, with a combined predicted sample size of 688. These trials are ongoing and the results are therefore not included in the review, although they will be incorporated into future updates. AUTHORS' CONCLUSIONS: A comprehensive search of the literature showed that currently there is no RCT-based evidence for the management of acute crises in people with BPD and therefore we could not reach any conclusions about the effectiveness of any single crisis intervention. High-quality, large-scale, adequately powered RCTs in this area are urgently needed.

The effectiveness of joint crisis plans for people with borderline personality disorder: protocol for an exploratory randomised controlled trial.

BACKGROUND: Borderline personality disorder (BPD) is a common mental disorder associated with raised mortality, morbidity and substantial economic costs. Although complex psychological interventions have been shown to be useful in the treatment of BPD, such treatments are expensive to deliver and therefore have limited availability and questionable cost-effectiveness. Less complex interventions are required for the management of BPD. A joint crisis plan (JCP) is a record containing a service user's treatment preferences for the management of future crises and is created by the service user with the help of their treating mental health team. These plans have been shown to to be an effective way of reducing compulsory treatment in people with psychosis. However, to date they have not been used with individuals with BPD. This exploratory trial will examine whether use of a JCP is an effective and cost-effective intervention for people with BPD for reducing self-harm. METHODS/DESIGN: In this single blind exploratory randomized controlled trial, a total of 120 participants (age >18 years with a primary diagnosis of DSM-IV borderline personality disorder) will be recruited from community mental health teams and, after completing a baseline assessment, will be assigned to one of two conditions: (1) a joint crisis plan, or (2) treatment as usual. Those allocated to the JCP condition will take part in a facilitated meeting, the purpose of which will be to agree the contents of the plan. Following the meeting, a typed version of the JCP will be sent to the patient and to any other individuals specified by the participant. All participants will be followed-up at 6 months. The primary outcome measures are: any self-harm event, time to first episode of self-harm and number of self-harm events over the follow-up period. Secondary outcome measures are length of time from contemplation to act of self-harm, help-seeking behaviour after self-harm, cost, working alliance, engagement with services and perceived coercion. Other outcome variables are quality of life, social impairment and satisfaction with treatment. DISCUSSION: Results of this trial will help to clarify the potential beneficial effects of JCPs for people with BPD and provide information to design a definitive trial. TRIAL REGISTRATION: Current Controlled Trials ISRCTN12440268.