Co-producing principles to guide health research: an illustrative case study from an eating disorder research clinic.

BACKGROUND: There is significant value in co-produced health research, however power-imbalances within research teams can pose a barrier to people with lived experience of an illness determining the direction of research in that area. This is especially true in eating disorder research, where the inclusion of co-production approaches lags other research areas. Appealing to principles or values can serve to ground collaborative working. Despite this, there has not been any prior attempt to co-produce principles to guide the work of a research group and serve as a basis for developing future projects. METHODS: The aim of this piece of work was to co-produce a set of principles to guide the conduct of research within our lived experience led research clinic, and to offer an illustrative case for the value of this as a novel co-production methodology. A lived experience panel were recruited to our eating disorder research group. Through an iterative series of workshops with the members of our research clinic (composed of a lived experience panel, clinicians, and researchers) we developed a set of principles which we agreed were important in ensuring both the direction of our research, and the way in which we wanted to work together. RESULTS: Six key principles were developed using this process. They were that research should aim to be: 1) real world-offering a clear and concrete benefit to people with eating disorders, 2) tailored-suitable for marginalised groups and people with atypical diagnoses, 3) hopeful-ensuring that hope for recovery was centred in treatment, 4) experiential-privileging the 'voice' of people with eating disorders, 5) broad-encompassing non-standard therapeutic treatments and 6) democratic-co-produced by people with lived experience of eating disorders. CONCLUSIONS: We reflect on some of the positives as well as limitations of the process, highlighting the importance of adequate funding for longer-term co-production approaches to be taken, and issues around ensuring representation of minority groups. We hope that other health research groups will see the value in co-producing principles to guide research in their own fields, and will adapt, develop, and refine this novel methodology.

It important that when researchers are trying to understand illnesses they do this together with people who have experienced them. This can be difficult, because researchers often take over­even if everyone is meant to be working as a team. We are a group of people trying to understand eating disorders and help people who have them get better. In our group there are some people that have experienced an eating disorder, health workers and researchers.We thought it might be helpful if we could start by working out what things were most important to us as a group, and then try to stick by them. We talked a lot together to come up with a list of principles.The six principles we thought were the most important were that research should make a difference to people's lives, see people as individuals, be hopeful, make sure that people have a voice, look at things that aren't traditional therapies, and always work together as equals.There are some issues with what we did; we found it hard to get a good mix of people in our group, and we were lucky in having enough money to pay people to do what we wanted to do, which is not always true. Despite this, we still hope that other teams might look at what we have done, and see if they could build on it, or change it, so it would work for them.

Should I ask about eating? Patients' disclosure of eating disorder symptoms and help-seeking behaviour.

OBJECTIVE: To retrospectively explore the first disclosure of eating problems and the impact of disclosure factors on subsequent help-seeking amongst women with eating disorders. METHOD: Seventy-one eating disorder service users were interviewed using the newly developed Eating Disorder Disclosure Interview and the Eating Disorder Examination Questionnaire. RESULTS: Faster access to specialist services was associated with being older at first disclosure and with disclosures that involved either a general practitioner, an individual's partner or mother. Patients' appraisals of 'other-initiated' and 'volunteered' disclosures did not differ, although 'other-initiated' disclosures were younger and accessed help more quickly than those who 'volunteered'. The more positively 'other-initiated' disclosures were appraised, the quicker the subsequent help-seeking. CONCLUSION: The findings indicate that initiating a disclosure might lead to earlier access to treatment for individuals with eating disorders.

Anticipating PTSD in severe COVID survivors: the case for screen-and-treat.

Based on research from previous pandemics, studies of critical care survivors, and emerging COVID-19 data, we estimate that up to 30% of survivors of severe COVID will develop PTSD. PTSD is frequently undetected across primary and secondary care settings and the psychological needs of survivors may be overshadowed by a focus on physical recovery. Delayed PTSD diagnosis is associated with poor outcomes. There is a clear case for survivors of severe COVID to be systematically screened for PTSD, and those that develop PTSD should receive timely access to evidence-based treatment for PTSD and other mental health problems by multidisciplinary teams.

Basados en la investigación de pandemias previas, los estudios de los sobrevivientes a cuidados críticos, y los datos emergentes de COVID-19, estimamos que hasta un 30% de los sobrevivientes del COVID grave desarrollarán TEPT. El TEPT es frecuentemente subdetectado en los servicios de salud primarios y secundarios y las necesidades psicológicas de los sobrevivientes puede verse eclipsadas por un enfoque en la recuperación física. El diagnóstico tardío de TEPT se asocia con pobres resultados. Existe un caso claro para que los sobrevivientes del COVID grave sean evaluados sistemáticamente para detectar el TEPT, y aquellos que desarrollan un TEPT deben tener acceso oportuno a tratamientos basados en la evidencia para el TEPT y para otros problemas de salud mental por equipos multidisciplinarios.

The Maudsley Anorexia Nervosa Treatment for Adults (MANTRA): a feasibility case series of an integrated group based approach.

BACKGROUND: Individuals with Anorexia Nervosa (AN) typically struggle in social and emotional contexts. An Integrated Group Based approach for the delivery of MANTRA - The Maudsley Anorexia Nervosa Treatment for Adults - extends current NICE recommended therapy by augmenting treatment with opportunities for experiential practice in a group context. A feasibility case series, delivered across three NHS community services is presented. METHODS: The design was a case series of four Integrated Group MANTRA treatments delivered across three NHS sites (N = 29). Feasibility data of: retention, acceptability and effectiveness; alongside the qualitative capture of participant experiences of treatment is presented. RESULTS: Primary outcomes suggest treatment acceptability. Participants committed to treatment with only 2 dropouts. There was significant change with medium effect sizes for eating disorder cognitions and symptoms (as measured by the global score on EDEQ) and BMI. Core themes emerging from qualitative analysis captured the value of the relational aspect of the treatment, the incorporation of experiential methods, and the opportunity to draw on the support of the group members to reduce shame and stigma. CONCLUSIONS: An Integrated Group based MANTRA approach is a feasible and effective alternative intervention for community Eating Disorder services.

Treatments for Anorexia Nervosa (AN) are somewhat effective, but there is room for improvement. A core struggle for individuals with Anorexia Nervosa is managing emotions especially in a social context. One of the leading treatments for AN - MANTRA ­ was adapted to be delivered in a group to provide opportunities for individuals to practice experiencing and managing emotions amongst others. We hoped that being in a group could help tackle the shame and isolation that many people with AN endure. Patients seemed to find value in this approach and there are early signs that it may support people on their journey of recovery from Anorexia Nervosa.

Social anxiety and social comparison: differential links with restrictive and bulimic attitudes among nonclinical women.

This study investigated the relationship of two social psychological constructs (social anxiety and social comparison) with bulimic and restrictive eating attitudes among nonclinical women. Eighty young women completed a measure of social anxiety (the Fear of Negative Evaluation Scale, FNE), a measure of social comparison (the Iowa-Netherlands Comparison Orientation Measure, INCOM), the Beck Depression Inventory (BDI), and the Eating Disorders Inventory (EDI). The results indicate a differential link between the two different social processes and the nature of eating psychopathology. Specifically, heightened social anxiety predicted drive for thinness, while levels of social comparison predicted bulimic attitudes. The findings support a model where the two social processes are each associated with different patterns of eating pathology.

Fear of negative evaluation and eating attitudes: a replication and extension study.

OBJECTIVE: Preliminary research has found a link between restrictive eating attitudes and a fear of negative evaluation (FNE). However, such work has focused exclusively on these fears in relation to people in general. The current study sought to replicate and extend these findings by exploring links between restriction and FNE in relation to close friends and relatives. METHOD: Ninety-one young women completed two versions of the short Fear of Negative Evaluation Scale (FNE). First, they completed the standard scale (in relation to people in general), and then an amended version (in relation to close friends and relatives). Next, they completed the three eating-related subscales of the Eating Disorders Inventory (EDI). RESULTS: For the whole group, both general and close FNE were significantly and positively correlated with restrictive (drive for thinness and body dissatisfaction), but not with bulimic attitudes. However, only general FNE had significant individual predictive power on restrictive attitudes when these two forms of FNE were entered into a regression analysis. DISCUSSION: Among nonclinical populations, negative evaluation fears regarding people in general are linked with restrictive but not with bulimic psychopathology.

Fear of negative evaluation and the development of eating psychopathology: a longitudinal study among nonclinical women.

OBJECTIVE: We replicated the cross-sectional relationship between restrictive eating attitudes and a fear of being negatively evaluated by others and tested whether negative evaluation fears longitudinally predict changes in eating attitudes over a 7-month period. METHOD: During the first week of an academic year, and again during Week 33, 143 female students completed the Fear of Negative Evaluation Scale (FNE), the Rosenberg Self-Esteem Scale (RSE), the Hospital Anxiety and Depression Scale (HADS), and the three eating scales of the Eating Disorders Inventory (EDI). RESULTS: The exclusive link between heightened negative evaluation fears and restrictive eating attitudes was replicated cross-sectionally. However, the longitudinal model predicting the development of restriction was nonsignificant. In contrast, alongside depression, negative evaluation fears predicted an increase in bulimic attitudes, whereas self-esteem predicted an increase in body dissatisfaction. DISCUSSION: The findings support a model whereby individuals with heightened fears of negative evaluation may use restrictive pathology to raise their status among peers. If this mechanism of dealing with negative evaluation fears is not sufficient in the long term, individuals may develop bulimic symptoms to deal with their negative evaluation fears.

Similarity in young women's eating attitudes: self-selected versus artificially constructed groups.

OBJECTIVE: The current study explored similarity (in terms of eating attitudes, depression, and anxiety) among new versus established groups of young women. METHOD: Three hundred and thirty-two female students (living in 80 apartments) participated in the study. They were either living in a newly formed "no-choice" apartment or a "choice" apartment where they had chosen their housemates. All participants completed the Eating Disorders Inventory and the Hospital Anxiety and Depression Scale. The groups were compared using similarity indices (showing attitude spread per apartment). RESULTS: Consistent with our hypothesis, the choice groups held more similar eating-related attitudes and depression levels than the no-choice groups. Specifically, the choice groups were significantly more similar in their levels of ineffectiveness, interpersonal distrust, and social insecurity. DISCUSSION: In a similar way to depression, eating attitudes may be shared among relatively close groups of women.

Evidence for a dynamic host-parasite relationship in e-negative hepatitis B carriers.

Anti-hepatitis Be (HBe) carriers are perceived as having low infectivity, with hepatitis B virus (HBV) DNA levels far below those seen in the HBeAg carrier. However, the temporal stability of HBV DNA in anti-HBe carriers remains poorly characterised. UK Department of Health guidelines use HBV DNA levels to define whether HBV-infected health care workers may perform exposure-prone procedures. Two samples separated by 1-23 years available from 147 carriers were analysed for precore variants and HBV DNA levels. Among 15 HBeAg carriers, HBV DNA was maintained at high levels. There was a 5 log(10) fold reduction in DNA in 11 individuals who developed anti-HBe during follow-up evaluation. Proportional changes in HBV DNA levels in anti-HBe carriers were similar to those in HBeAg carriers, although there was a trend for changes in viral DNA to be more marked in anti-HBe carriers followed up for longer periods. Closer sampling in 20 anti-HBe carriers demonstrated large fluctuations of DNA levels over short periods. Serum transaminases and precore mutant status at the outset failed to predict those in whom HBV DNA levels fluctuated. HBV DNA was below the detection threshold (<400 copies/ml) in 36 anti-HBe carriers at first sampling and remained so in all but 5 of these carriers. Twelve individuals who were previously viraemic lost detectable HBV DNA during follow-up evaluation. While HBV DNA levels are found to fluctuate in carriers, our results indicate that once below the threshold of detectability, levels are unlikely to rise. This is an important factor when assessing health care workers for exposure-prone procedures.