Improving motivation and treatment uptake behaviors of patients with eating disorders using patient narrative videos: study protocol of a pilot randomized controlled trial.

BACKGROUND: Patients with eating disorders (ED) typically report delays between the onset of symptoms and engagement with treatment services. Personal barriers including stigma, shame, and guilt, as well as the availability of social support may influence patients' decisions to engage with treatment services. Patient narratives are personalized stories discussing the illness and recovery of previously affected persons. Such narratives can reduce self-stigma and provide current patients with hope for their own recovery. METHOD: This pilot study will examine the effects of patient narrative videos on the treatment motivation and uptake of treatment services for patients with ED. Three narrative videos were developed from the perspectives of (a) a former patient with an ED, (b) an ED specialist, and (c) the same former patient discussing a somatic condition unrelated to ED. Patients will be randomized into three video viewing and one treatment-as-usual group. Effects on treatment motivation will be assessed using the University of Rhode Island Change Assessment Scale (URICA-S) immediately after viewing the videos, as well as one-week and three-month follow-ups. Treatment uptake will be assessed during follow-up using a questionnaire listing possible treatment interactions. A post-intervention questionnaire and semi-structured interviews will be used to assess the feasibility and acceptability of patient narrative videos for this population. DISCUSSION: There is an urgent need to encourage patients with ED to engage with specialized treatments as soon as possible. Patient narratives may be a pivotal approach to implementing cost effective and easy to disseminate early intervention programs to future patients with ED.

Enriching a randomized controlled treatment trial for anorexia nervosa by lived experience-Chances and effects of a lived experience council in the SUSTAIN study.

BACKGROUND: The development and advancement of treatment and care options is one priority in the field of eating disorders. The inclusion of persons with lived experience with eating disorders into clinical research could enrich and accelerate this endeavor, as they can add different perspectives on the disease and its treatment. Although lived experience perspectives are increasingly part of eating disorder research, they have not been widely or structurally implemented into clinical trials and there is limited information on the practice of participatory research, its framework and consequences. AIMS: The present work outlines the participatory collaboration with a lived experience council in the randomized controlled treatment trial SUSTAIN. MATERIALS & METHODS: The manuscript is a participatory publication co-written by individuals with lived experience with anorexia nervosa and eating disorder researchers. RESULTS: We report on motivations for this approach, our collaboration principles, structures and shared experience of working together in the trial, the potential burdens and benefits related to participation for people with lived experience. DISCUSSION: We outline future directions and perspectives to integrate a participatory framework into clinical eating disorder research. CONCLUSION: The involvement of people with experiential knowledge is complex, but possible in clinical research on ED and bears huge potential for the development of more effective care. PUBLIC SIGNIFICANCE: Incorporating perspectives of people with lived experience into a participatory framework of mental health research bears huge potential on a societal level. This includes more relevant research topics and designs, more tailored and effective interventions, and facilitated implementation, as well as dissemination, higher credibility, destigmatization of mental illness, and patient empowerment. Participatory clinical research, however, needs structural anchorage within science and society.

Barriers and facilitators affecting treatment uptake behaviours for patients with eating disorders: A systematic review synthesising patient, caregiver and clinician perspectives.

OBJECTIVE: A significant treatment gap exists between persons affected by eating disorders (ED), and those engaging with treatment services. This systematic review aims to provide a thorough understanding of the barriers and facilitators affecting eating disorder treatment engagement, including a synthesis of the perspectives of patients, caregivers and healthcare professionals. METHOD: This systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Studies were retrieved from three databases (PubMed, PsycInfo, Web of Science) and were screened and assessed independently by two raters. A thematic analysis was completed to determine the key barriers and facilitators reported by the included studies. RESULTS: A total of 73 studies were included. From these studies, 12 barriers and 13 facilitators were identified. Patients reported stigma, shame and guilt as the most prominent barrier affecting their engagement with treatment services. Meanwhile, caregivers and healthcare professionals reported a lack of eating disorder knowledge of clinicians as the most important barrier. Positive social support was cited as the most prominent facilitator to promote help-seeking. DISCUSSION: Patients, caregivers and healthcare professionals experience a variety of barriers and facilitators to treatment uptake for ED. Interventions addressing barriers and facilitators could increase treatment engagement, including anti-stigma campaigns and positive peer-support interventions.

Informing mHealth and Web-Based Eating Disorder Interventions: Combining Lived Experience Perspectives With Design Thinking Approaches.

BACKGROUND: App-based interventions designed to prevent and treat eating disorders have considerable potential to overcome known barriers to treatment seeking. Existing apps have shown efficacy in terms of symptom reduction; however, uptake and retention issues are common. To ensure that apps meet the needs and preferences of those for whom they were designed, it is critical to understand the lived experience of potential users and involve them in the process of design, development, and delivery. However, few app-based interventions are pretested on and co-designed with end users before randomized controlled trials. OBJECTIVE: To address the issue, this study used a highly novel design thinking approach to provide the context and a lived experience perspective of the end user, thus allowing for a deeper level of understanding. METHODS: In total, 7 young women (mean age 25.83, SD 5.34, range 21-33 years) who self-identified as having a history of body image issues or eating disorders were recruited. Participants were interviewed about their lived experience of body image and eating disorders and reported their needs and preferences for app-based eating disorder interventions. Traditional (thematic analysis) and novel (empathy mapping; visually depicting and empathizing with the user's personal experience) analyses were performed, providing a lived experience perspective of eating disorders and identifying the needs and preferences of this population in relation to app-based interventions for eating disorders. Key challenges and opportunities for app-based eating disorder interventions were also identified. RESULTS: Findings highlighted the importance of understanding and identifying problematic eating disorder symptoms for the user, helpful practices for recovery that identify personal values and goals, the role of social support in facilitating hope, and aspects of usability to promote continued engagement and recovery. CONCLUSIONS: Practical guidance and recommendations are described for those developing app-based eating disorder interventions. These findings have the potential to inform practices to enhance participant uptake and retention in the context of app-based interventions for this population.