Title: A feasibility trial of Power Up: A smartphone and tablet app to support young people to make shared decisions in therapy
Funder: Department of Health and Social Care

Abstract: The aim of the proposed research is to address the Chief Medical Officer s call to promote shared decision making in services for young people with long-term conditions21. To do so, there are three objectives: Investigate whether it is feasible to study the effectiveness of Power Up for increasing young people's shared decision making in mental health services. Develop existing resources1,15 with input from young people, parents, and therapists into Power Up: A smartphone and tablet application (app) to support young people for making shared decisions in therapy. Revise Power Up based on feedback from young people, parents, and therapists. Methods. Study design: feasibility trial. Illustrative milestones (MS) (see Appendix for project plan). MS02.1: Patent filed with United Kingdom Intellectual Property Office MS06.1: Beta testing with interviews with young people, parents, and therapists MS09: Power Up final deployment version Participants: young people (11-18 y/o) with emotional problems (Strengths and Difficulties Questionnaire23 score &ge; 7) without Special Educational Needs in Child and Adolescent Mental Health Services (CAMHS) using Power Up (cluster randomisation in full trial). Intervention: Power Up: An app to support young people for making shared decisions in therapy. Power Up will guide the young person through the 10 steps of shared decision making20. Illustrative steps below (see Appendix for further details). My expectations: What can I expect when going to CAMHS? My plan: What are my next steps? Comparator: young people (as above) in CAMHS receiving Management as Usual (i.e., not using Power Up). Primary outcome: Child Session Rating Scale22 measuring shared decision making (young-person reported). Collect parameters for sample size calculation for full trial: mean cluster size, recruitment/consent rate, attrition rate, standard deviation (for sample size calculation), and intraclass correlation coefficient (for design effect). Secondary outcomes: Patient Activation Measure7 measuring self-management and self-efficacy in healthcare, Experience of Service Questionnaire24 measuring satisfaction, Strengths and Difficulties Questionnaire23 measuring symptoms and functioning (all young person-reported), demographic characteristics, therapy received, service use (e.g., Did Not Attends, length of appointments) (therapists-reported), and Client Service Receipt Inventory25 (parent-reported); all completed at time 1 when offered initial appointment and time 2 three months later; acceptability of Power Up and measures; patient and public involvement planning for full trial. Recent data obtained from the Child Outcomes Research Consortium26 estimates the number of children with a presenting problem of emotional disorder with data reported in 2012 as 240 per service. Over a twelve month trial, we estimate recruitment of 30 participants from each of the four participating services27. With this sample, we will be able to collect the necessary feasibility parameters (see Research plan). Primary challenges: Scientific challenge: evidence-based content. Mitigation: content developed from existing projects1,15 (see Intellectual Property) and evidence20,28. Technical challenge: linking data from Power Up with electronic record systems. Mitigation: public APIs; Power Up complements existing datasets (e.g., CORC29, CYP IAPT30, Payment Systems31) and projects (e.g., CAMHSWeb17); Trial Steering Group has extensive experience of this in CAMHS. Clinical challenge: therapists engage with Power Up. Mitigation: ensure Power Up complements therapeutic work; interview therapists during the design process; ensure therapists are aware of and engage with Power Up throughout the trial. Organisational challenge: staff turnover, communication, and overrunning timelines. Mitigation: clear and up-to-date job descriptions, study protocol; Core Research Group meets weekly; Trial Steering Group meets around milestones; project plan; Project Initiation Documents developed in Trial Set Up phase. Commercial challenge: young people want to use and keep using Power Up. Mitigation: involve young people through the iterative design process (using Agile); continue to update Power Up after the end of the trial so it evolves with young people s needs.

Lay abstract: Young people with long-term mental health difficulties need support to ensure their voice is heard during therapy. Evidence suggests that young people want to be active participants in their care and involved in decisions about their treatment, but we know this is not always realised in practice. The researchers have already developed web-based and paper-based tools to support young people in particular aspects of shared decision making, but there are currently no evidence-based tools that young people can independently use to guide them through all stages of shared decision making. This piece of research will develop a smartphone and tablet app called &ldquo;Power Up&rdquo; to support young people to have their say when accessing Child and Adolescent Mental Health Services (CAMHS). With Power Up, young people will be empowered to make shared decisions about all stages of their care and will be guided through the steps of shared decision making, which may include: My expectations: What can I expect when going to CAMHS? My mood: How am I feeling? My goals: What do I want from therapy? My questions: What do I want to ask? My session: How did the session go? My say: Was I listened to? My options: What are my options? My choice: What are the pros and cons of my options? My scales: How likely are these pros and cons to occur? My plan: What are my next steps? We will work with young people with experience of using services and their advocates to co-produce the design, content, and functions of Power Up so it directly addresses the support young people want when making shared decisions. Young people we have worked with so far described what they thought shared decision making was and how they wanted to be involved in decisions. They thought that shared decision making was being listening to and assisted with things that matter to them. Being heard though two-way communication was essential, as was a flexible style because everyone might not necessarily want to be involved in the same way. Young people thought that having a say in their healthcare made them feel valued and good about themselves, but that shared decision making needed careful thought and support as it might not automatically happen. We will support young people, parents, and therapists to test Power Up through interviews, focus groups, and co-production sessions. This will provide in-depth feedback on the app, which we will use to improve it. We will give Power Up to young people in a small number of services. If at the end of the study we conclude that Power Up is indeed useful to young people for empowering them to make shared decisions in therapy, we will set-up another study with more services so we can continue to improve Power Up. Our ultimate aim is to produce a rigorously evaluated tool to help young people managing long-term mental health issues to understand, structure, and express their preferences and views.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH