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IntroductionFirst-episode psychosis (FEP) affects 3% of the population worldwide, mainly young adults. International guidelines for FEP are based on the principles of intensive case management (CM). To improve the relevance of CM and thus patient engagement and functional outcomes, goals of care must be not solely clinical, but placed within an individualized ’recovery’ perspective, considering the patient‘s point of view. The use of clinical tools co-constructed by end-users and adapted to recovery objectives seems essential.MethodsWe used a ’user-centered design’ iterative co-building methodology. In the first phase, 4 workshops were conducted to develop the application with end-users. A thematic content analysis was carried out after the workshops to optimize the specifications of a beta version of the mobile application. Direct interviews were conducted after testing the beta version of PLAN-e-PSY and a qualitative analysis was carried out.Results2 patients, 2 case managers, a caregiver, a peer-worker, a developer and an ergonomist participated in the workshops. The architecture and contents of the application were defined. Participants also worked together to define the application’s graphics charter and ergonomics. Interviews conducted with 3 CMs, 2 peer workers, a caregiver and a patient at the end of the beta test helped improve the application and revealed that the beta version of PLAN-e-PSY was easy to use (4.5/5) and perceived as useful (3.5/5).DiscussionParticipatory action research carried out in partnership with end-users enabled us to construct an application relevant to patients, their families and professionals. We hypothesized that it would contribute to improving CM and thus patient engagement and functional outcomes.ConclusionA funded randomized controlled trial involving 168 patients will assess the application’s effectiveness in FEP care facilities.

Trauma plays a critical role in psychosis, but the nature of the relationship between specific symptoms and trauma history remains unclear. The aim of the study was to explore the experience of positive symptoms and their association with trauma and life events from the perspective of patients with first-episode psychosis (FEP). Seventeen participants who were enrolled in an FEP programme participated in a qualitative interview examining their life and trauma events, the onset of their symptoms, their experience of positive symptoms and their perceived associations between symptoms and life and trauma events. The interview was based on a semi-structured interview of six main questions and follow-up questions. Participants also completed the Trauma and Life Experiences Checklist (TALE), and were asked about the relevance of the whole interview. Thematic content analysis, exploratory cluster analysis and matrix queries coding were performed. Fifteen participants described the experience of psychotic symptoms as distressing or traumatic. Eleven participants attributed the onset of positive psychotic symptoms to trauma and life events. Ten participants described explicit thematic associations between their symptoms and trauma and life events. Twelve participants evaluated the interview as relevant and helpful. Our findings give insight into the lived experience of positive symptoms and potential psychological interventions valuing causal theories of participants and the association with life and trauma events.

Background During the hospital-to-home transition, stroke survivors and their caregivers face a significant lack of support and information which impacts their psychosocial recovery. We aimed to co-design a program combining individual support by a trained case-manager (dedicated professional providing individual support) and an online information platform to address needs of stroke survivors and caregivers. Methods A two-step methodology was used. The first step followed a “user-centered design” approach during four workshops with stroke survivors, caregivers, and healthcare professionals to develop the platform and define the case-manager profile. The second step was a usability test of the platform following a Think Aloud method with patients and caregivers. The workshops and interviews were analyzed following a qualitative thematic analysis. The analysis of Think Aloud interviews was based on User Experience Honeycomb framework by Morville. Results Eight participants attended the workshops: two patients, two caregivers, three nurses, and a general practitioner. Activities, training, and skills of the case-manager were defined according to stroke survivors and caregivers needs. Name, graphics, navigation, and content of the platform were developed with the participants, a developer and a graphic designer. The usability of the platform was tested with 5 patients and 5 caregivers. The Think Aloud confirmed satisfaction with graphics and content but a need for improvement regarding the navigability. An update of the platform was conducted in order to answer the needs expressed by participants. Conclusion We developed, with a participatory approach, a patient-centered transition program, which will be evaluated in a randomized controlled trial.

Background Stroke affects many aspects of life in stroke survivors and their family, and returning home after hospital discharge is a key step for the patient and his or her relatives. Patients and caregivers report a significant need for advice and information during this transition period. Our hypothesis is that, through a comprehensive, individualised and flexible support for patients and their caregivers, a patient-centred post-stroke hospital/home transition programme, combining an Internet information platform and telephone follow-up by a case manager, could improve patients’ level of participation and quality of life. Methods An open parallel-group randomized trial will be conducted in two centres in France. We will recruit 170 adult patients who have had a first confirmed stroke, and were directly discharged home from the stroke unit with a modified Rankin score ≤3. Intervention content will be defined using a user-centred approach involving patients, caregivers, health-care professionals and social workers. Patients randomized to the intervention group will receive telephonic support by a trained case manager and access to an interactive Internet information platform during the 12 months following their return home. Patients randomized to the control group will receive usual care. The primary outcome is patient participation, measured by the “participation” dimension score of the Stroke Impact Scale 6 months after discharge. Secondary outcomes will include, for patients, quality of life, activation, care consumption, as well as physical, mental and social outcomes; and for caregivers, quality of life and burden. Patients will be contacted within one week after discharge, at 6 and 12 months for the outcomes collection. A process evaluation alongside the study is planned. Discussion Our patient-centred programme will empower patients and their carers, through individualised and progressive follow-up, to find their way around the range of available healthcare and social services, to better understand them and to use them more effectively. The action of a centralised case manager by telephone and the online platform will make it possible to disseminate this intervention to a large number of patients, over a wide area and even in cases of geographical isolation. Trial registration: ClinicalTrials NCT03956160 , Posted: May-2019 and Update: September-2021.

IntroductionThe decisions of withholding or withdrawing life-sustaining treatments are difficult to make in the context of emergency departments (EDs) because most patients are unable to communicate. Relatives are thus asked to participate in the decision‐making process, although they are unprepared to face such situations. We therefore aimed to develop a standardised intervention for announcing decisions of withholding or withdrawing life-sustaining treatments in EDs and assess the efficacy of the intervention on the stress of relatives.Methods and analysisThe DISCUSS trial is a multicentre stepped-wedge cluster randomised study and will be conducted at nine EDs in France. A standardised intervention based on human simulation will be codesigned with partner families and implemented at three levels: the relatives, the healthcare professionals (HCP) and the EDs. The intervention will be compared with a control based on treatment as usual. A total of 538 families are planned to be included: 269 in the intervention group and 269 in the control group. The primary endpoint will be the symptoms of post-traumatic stress disorder (PTSD) at 90 days. The secondary endpoints will be symptoms of PTSD at 7 and 30 days, diagnosis of PTSD at 90 days and anxiety and depression scores at 7, 30 and 90 days. Satisfaction regarding the training, the assertiveness in communication and real-life stress of HCPs will be measured at 90 days.Ethics and disseminationThis study was approved by the ethics committee Est III from Nancy and the French national data protection authority. All relatives and HCPs will be informed regarding the study objectives and data confidentiality. Written informed consent will be obtained from participants, as required by French law for this study type. The results from this study will be disseminated at conferences and in a peer-reviewed journal.Trial registration numberNCT06071078.

IntroductionDue to the brutality of stroke and increasingly shorter in-hospital lengths of stay, patients and their families must adapt quickly after acute stroke to the patient‘s new health functioning and the new caregiving role for family members. Peer support, ie support of patient by another patient who previously experienced the same situation, could be an innovative approach to address these issues. We aim to codesign a peer-helper intervention to support patients discharge and improve their community reintegration after stroke.MethodsA participatory action research was conducted following Bandura’s social learning theory and based on the results of a previous needs assessment study. For this, 3 workshops lasting 2h30 were conducted. Participants were patients and health professionals working with stroke survivors. In order to develop the profile of the peer helper, a qualitative analysis was conducted iteratively based on participant observation and workshops vocal recordings.ResultsWe recruited 8 participants: 3 patients, a rehabilitation physician, a social worker, a physiotherapist, 2 occupational therapists. During the first workshop, patients reported psychosocial and informational needs after discharge and proposed tasks and positioning of a peer helper. During the following two workshops, patients and health professionals defined the skills, tasks, tools, training and supervision of the peer-helper. Barriers and facilitators to implement peer-helper intervention were identified.DiscussionParticipatory action research carried out in partnership with patients and healthcare professionals involved in the care of stroke survivors has enabled us to build this intervention to improve patients community reintegration after stroke.ConclusionWe developed, with a participatory approach, our peer support intervention by defining the status, profile, training, activity and interactions with patients. The next step will be to assess the intervention within a randomized study.

IntroductionThe context for an announcement of withholding and withdrawing life-sustaining treatments in emergency departments (ED) is complex. Indeed, the lack of time and places in these units may increase the stress and anxiety of families who are unprepared for this announcement. To improve the experience of families and shift towards patients and family centered practices, we co- construct a new announcement protocol with partner families.MethodsA participatory action research was conducted. Semi-structured interviews were carried out to enable families to share their experiences and have a personal space to express themselves, given the emotional charge. Then 3 workshops were conducted to work on elements borrowed from their experience, to be included in a training course on the announcement of limitation and cessation of therapies in the ED, aimed at healthcare professionnal. The workshops were audio recorded and a qualitative analysis was conducted.ResultsWe conducted 8 interviews and recruited 11 families passing through various ED to participate in workshops. In the interviews, participants were able to share their experiences. During the workshops, families were able to retrace their loved one’s care pathway and the difficulties encountered. Scenarios were drawn up based on the announcements to these partner families, for role-playing during the training course, as well as 3 testimonial videos for healthcare professionnals. The booklet to be distributed to families in ED has been reread and modified.DiscussionThe participatory action research conducted in partnership with families enabled us to construct an intervention to improve ED professionals’ skills for a family centered announcement of the decision of withholding or withdrawing life-sustaining treatments through training.ConclusionWe identified the obstacles and facilitating factors for implementing the intervention and validated the formation. The next step will be to assess the intervention within a randomized study.

IntroductionDuring the hospital-to-home transition, stroke survivors and their caregivers face a significant lack of support and information that accentuates their psychosocial burden and impair their ability to be actor of their psychosocial recovery. We aimed to co-design a program combining case- management and an online information platform to address psychosocial needs of stroke survivors and caregivers.MethodsA two-step methodology was used. The first step followed a ‘user-centered design’ approach during 4 workshops with end-users to develop the platform and define the case-manager profile. The second step was a usability test of the platform following a Think Aloud method with patients and caregivers. The workshops and interviews were audio recorded and a qualitative thematic analysis was conducted. The analysis of Think Aloud interviews was based on User Experience Honeycomb framework.ResultsEight participants attended the workshops: 2 patients, 2 caregivers, 3 nurses and a general practitioner. Activities, training and skills of the case-manager were defined according to stroke survivors and caregivers needs. Name, graphics, navigation, and content of the platform were developed with the participants, a developer and a graphic designer. The usability of the platform was tested with 5 patients and 5 caregivers. The Think Aloud confirmed satisfaction with graphics and content but a need for improvement regarding the navigability.DiscussionThe co-design approach, conducted in partnership with end-users (patients, caregivers, and health professionals), and web designers, enabled us to construct the Navistroke transition recovery program based both on theory and on the needs of stroke survivors and their caregivers. We hypothesized the program will improve psychosocial recovery of stroke survivors and caregivers.ConclusionWe developed, with a participatory approach, a patient centered transition program, which will be evaluated in a randomized controlled trial.

IntroductionIn a previous study we found half of heart failure (HF) patients had a low level of health literacy (low-HL) which increases difficulty to understand their disease, and the risk of medication non- adherence and re-hospitalization. To improve self-care management of low-HL patients with HF, we involved HF patients to co-construct an intervention aiming at empowering them by providing access to adapted and personalized information and improving self-confidence.MethodsA participatory action research was conducted following the Ophelia method, which aims to help building and implementing interventions and solutions to improve access to appropriate health information. Two workshops were conducted to develop an intervention combining follow-up with a health consultant and an individualized information binder for each patient. The workshops were audio recorded and a qualitative analysis was conducted.ResultsWe recruited 6 patients with different levels of HL, 4 men and 2 women. The follow-up with the health consultant was defined. The patients insisted on the crucial importance of establishing a real relationship of trust between healthcare professional and patient and shared with us some ideas for improving trust. The various information sheets (diet, warning signs and medication) in the binder were worked on with the patients and they highlighted the positive and negative points of the various sheets. Patients explained what they needed when they returned home.DiscussionParticipatory action research carried out in partnership with patients and healthcare professionals involved in the care of HF patients has enabled us to build this intervention to improve self-care management of low HL patients with HF.ConclusionWe identified the barriers and facilitators to implementing implementing the intervention and validated all the sheets. The next step will be to assess the intervention within a randomized study.

The G-protein-coupled receptor accessory protein MRAP2 is implicated in energy control in rodents, notably via the melanocortin-4 receptor1. Although some MRAP2 mutations have been described in people with obesity1–3, their functional consequences on adiposity remain elusive. Using large-scale sequencing of MRAP2 in 9,418 people, we identified 23 rare heterozygous variants associated with increased obesity risk in both adults and children. Functional assessment of each variant shows that loss-of-function MRAP2 variants are pathogenic for monogenic hyperphagic obesity, hyperglycemia and hypertension. This contrasts with other monogenic forms of obesity characterized by excessive hunger, including melanocortin-4 receptor deficiency, that present with low blood pressure and normal glucose tolerance4. The pleiotropic metabolic effect of loss-of-function mutations in MRAP2 might be due to the failure of different MRAP2-regulated G-protein-coupled receptors in various tissues including pancreatic islets.