Power up: patient and public involvement in developing a shared decision-making app for mental health

Background The importance of patient and public involvement (PPI) in designing interventions to support young people’s mental health is becoming a central tenet of the research process. Existing research has indicated that co-design with service users may help to engender multiple improvements in research projects, from design through to applications of study findings. Aims The aim of this study is to examine our experience of making the involvement of young people an ongoing part of the research process. We report on PPI in relation to a feasibility trial of the development of an app called Power Up, which is designed to support shared decision-making in mental health. Method Young people, carers, and clinicians were involved in each aspect of the project from governance, needs and environment analysis, to development and revisions of the Power Up smartphone app intended for use within child and adolescent mental health services. Involvement was achieved through ongoing contributions to steering groups, co-design workshops, and interviews. The project model was approached as a cyclical multidirectional process of ideas, PPI input, reflection, and alterations. Conclusion PPI was embedded into the project model from the outset, to be iterative and cyclical informing the development and direction of the digital tool at each stage. Involving service users resulted in the identification and implementation of multiple changes to the app, both conceptual and tangible. Several challenges associated with PPI were also encountered, warranting future research and discussion

A Feasibility Trial of Power Up: Smartphone App to Support Patient Activation and Shared Decision Making for Mental Health in Young People

Background: Digital tools have the potential to support patient activation and shared decision making in the face of increasing levels of mental health problems in young people. There is a need for feasibility trials of digital interventions to determine the usage and acceptability of interventions. In addition, there is a need to determine the ability to recruit and retain research participants to plan rigorous effectiveness trials and therefore, develop evidence-based recommendations for practice.Objective: To determine the feasibility of undertaking a cluster randomized control trial to test the effectiveness of a smartphone app, Power Up, co-designed with young people to support patient activation and shared decision making for mental health.Methods: Overall, 270 young people were screened for participation and 53% (N = 142) were recruited and completed baseline measures across eight specialist child mental health services (n = 62, mean (SD) age = 14.66 (1.99) years, 52% female) and two mainstream secondary schools (n = 80; mean (SD) age = 16.88 (0.68) years, 46% female). Young people received Power Up in addition to management as usual or received management as usual only. Post-trial interviews were conducted with 11 young people from the intervention arms (specialist services n = 6; schools n = 5).Results: Usage data showed that there were an estimated 50 (out of 64) users of Power Up in the intervention arms. Findings from the interviews indicated that young people found Power Up to be acceptable. Young people reported: 1) their motivation for use of Power Up, 2) the impact of use, and 3) barriers to use. Out of the 142 recruited participants, 45% (64/142) completed follow up measures, and the approaches to increase retention agreed by the steering group are discussed.Conclusions: The findings of the present research indicate that the app is acceptable and it is feasible to examine the effectiveness of Power Up in a prospective cluster randomized control trial

Patient and Public Involvement in Youth Mental Health Research: Protocol for a Systematic Review of Practices and Impact

Various health settings have advocated for involving patients and members of the public (PPI) in research as a means to increase quality and relevance of the produced knowledge. However, youth PPI has been an understudied area. This protocol paper describes a new project that aims to summarize what is known about PPI with young people in mental health research. In line with the Preferred Reporting Items for Systematic reviews and Meta-Analyses Statement guidelines we will identify and appraise suitable articles and extract and synthesize relevant information including at least two reviewers at each stage of the process. Results will be presented in two systematic reviews that will describe (a) how youth PPI has been conducted (Review1) and (b) what impact youth PPI had on the subsequent research and on stakeholders (Review2). To our knowledge, this is the first set of reviews that uses a critical appraisal tool, which is co-developed with children and young people. Findings from this project will provide valuable insights and set out the key steps to adopting adequate PPI methods when involving children and young people in mental health research

Emotion regulation in children (ERiC): A protocol for a randomised clinical trial to evaluate the clinical and cost effectiveness of mentalization based treatment (MBT) vs treatment as usual for school-age children with mixed emotional and behavioural difficulties

Background: The majority of children referred to Child and Adolescent Mental Health Services (CAMHS) in the UK will present with mixed emotional and behavioural difficulties, but most mental health treatments are developed for single disorders. There is a need for research on treatments that are helpful for these mixed difficulties, especially for school-age children. Emotion Regulation (ER) difficulties present across a wide range of mental health disorders and mentalizing may help with regulation. The ability to mentalize one’s own experiences and those of others plays a key role in coping with stress, regulation of emotions, and the formation of stable relationships. Mentalization Based Therapy (MBT) is a well-evidenced therapy that aims to promote mentalization, which in turn increases ER capacities, leading to decreased emotional and behavioural difficulties. The aim of this study is to test the clinical- and cost-effectiveness of MBT compared to treatment as usual for school age children with emotional and behavioural difficulties. If effective, we hope this approach can become available to the growing number of children presenting to mental health services with a mix of emotional and behavioural difficulties. Materials and methods: Children referred to CAMHS aged 6–12 with mixed mental health problems (emotional and behavioural) as primary problem can take part with their parent/carers. Children will be randomly allocated to receive either MBT or treatment as usual (TAU) within the CAMHS clinic they have been referred to. MBT will be 6–8 sessions offered fortnightly and can flexibly include different family members. TAU is likely to include CBT, parenting groups, and/or children’s social skills groups. Parent/carers and children will be asked to complete outcome assessments (questionnaires and tasks) online at the start of treatment, mid treatment (8 weeks), end of treatment (16 weeks) and at follow up (40 weeks)

Hypoglycaemia in type 2 Diabetes: Impact, burden and management

The overall aim of the programme of work was to contribute to the current body of knowledge around the impact and burden of hypoglycaemia in people with type 2 diabetes. An additional aim was to consider how hypoglycaemia in type 2 diabetes is currently managed from the patient’s perspective. A systematic review and meta-analysis was carried out to estimate the prevalence and incidence of hypoglycaemia within population based studies of type 2 diabetes. A qualitative study was also carried out to explore the views and experiences of people with type 2 diabetes who have experienced hypoglycaemia. Key findings: • Hypoglycaemia is prevalent within the type 2 diabetes population. The prevalence of hypoglycaemia is 45% for mild/moderate and 6% for severe, and on average an individual with type 2 diabetes experiences 19 mild/moderate episodes and 0.8 severe episodes per year. • Hypoglycaemia is particularly prevalent amongst those on insulin (mild/moderate: prevalence = 52%; severe: prevalence = 21%, yet still fairly common for treatment regimens that include sulphonylureas (mild/moderate: prevalence = 33%; severe: prevalence = 5%. Severe hypoglycaemia prevalence was the same 5% for those on treatment regimens that did or did not include sulphonylureas. • Hypoglycaemic episodes often interrupt daily life and activities, with symptoms, causes and overall experience varying between individuals and ethnicity. • Management of hypoglycaemia is influenced by an individual’s degree of empowerment and engagement with their healthcare practitioner Based on the findings from this programme of work, recommendations are provided for clinical practice and future research to improve management of hypoglycaemia in type 2 diabetes

Prevalence and incidence of hypoglycaemia in 532,542 people with Type 2 diabetes on oral therapies and insulin: a systematic review and meta-analysis of population based studies

Objective: To collate and evaluate the current literature reporting the prevalence and incidence of hypoglycaemia in population based studies of type 2 diabetes. Research design and methods: Medline, Embase and Cochrane were searched up to February 2014 to identify population based studies reporting the proportion of people with type 2 diabetes experiencing hypoglycaemia or rate of events experienced. Two reviewers independently screened studies for eligibility and extracted data for included studies. Random effects meta-analyses were carried out to calculate the prevalence and incidence of hypoglycaemia. Results: 46 studies (n=532,542) met the inclusion criteria. Prevalence of hypoglycaemia was 45% (95%CI 0.34,0.57) for mild/moderate and 6% (95%CI, 0.05,0.07) for severe. Incidence of hypoglycaemic episodes per person-year for mild/moderate and for severe was 19 (95%CI 0.00, 51.08) and 0.80 (95%CI 0.00,2.15), respectively. Hypoglycaemia was prevalent amongst those on insulin; for mild/moderate episodes the prevalence was 50% and incidence 23 events per person-year, and for severe episodes the prevalence was 21% and incidence 1 event per person-year. For treatment regimes that included a sulphonylurea, mild/moderate prevalence was 30% and incidence 2 events per person-year, and severe prevalence was 5% and incidence 0.01 events per person-year. A similar prevalence of 5% was found for treatment regimes that did not include sulphonylureas. Conclusions: Current evidence shows hypoglycaemia is considerably prevalent amongst people with type 2 diabetes, particularly for those on insulin, yet still fairly common for other treatment regimens. This highlights the subsequent need for educational interventions and individualisation of therapies to reduce the risk of hypoglycaemia

Forest plot showing the proportion of people experiencing severe hypoglycaemia in each study and the overall pooled estimate.

<p>Boxes and horizontal lines represent proportion if people experiencing severe hypoglycaemia and 95% CI for each study. Size of box is proportional to weight of that study result. Diamonds represent the 95% CI for pooled estimates of effect and are centred on pooled hypoglycaemia incidence.</p

Meta-regression results showing the effect of study-level variables on the proportion of people experiencing each severity of hypoglycaemia.

<p>Abbreviations: CI, Confidence Interval; HbA1c, glycated haemoglobin.</p><p>Meta-regression results showing the effect of study-level variables on the proportion of people experiencing each severity of hypoglycaemia.</p