Using Personas in the development of eHealth interventions for chronic pain: A scoping review and narrative synthesis.

Objectives: Behavioral eHealth interventions can enhance self-management and improve well-being in people with chronic pain. The development of these interventions calls for a user-centered approach to ensure that patient needs are appreciated. However, it may be challenging to involve patients; particularly during the early stages of the process. Fictional user profiles, known as Personas, can represent needs and guide designing eHealth interventions. This article provides a comprehensive overview of the use of Personas in the development of behavioral eHealth interventions for people with chronic pain with the aim to identify benefits and challenges. Methods: Bibliographic databases (Medline, Web of Science Core Collection, PsycInfo, CINAHL) and registries (PubMed Central, medaRxiv) were systematically searched. In a double-reviewing process, n = 6830 hits and n = 351 full-texts were screened and read. Ten peer-reviewed studies published between 2017 and 2022 were included in the narrative synthesis. Findings: Ten studies reported using "Pain Personas" in the development of eHealth interventions for such purposes as to gain a shared understanding of the user and to discuss solutions in team meetings, or for patients to identify with (if Personas are included in the intervention). Personas were based on qualitative and/or quantitative data. However, the procedure for creating Personas was only described in half of the included studies (n = 5). These five studies provided descriptive details of the Personas (i.e., picture, name, narrative of their pain behavior, technological skills, and motivation). Conclusions: Although Personas have been used by pain researchers in recent projects and were highlighted as an important ingredient in the development process, available design guidelines for the creation and use of Personas are not followed or communicated transparently. Benefits and challenges when using Personas in the development of eHealth interventions for people with chronic pain are discussed to support future eHealth efforts and to improve the quality of eHealth innovation in the field of pain.

A piece of a puzzle-Patient and psychologist experiences of the Affect School as additional treatment in a Swedish eating disorder unit.

BACKGROUND: Emotion dysregulation has been shown to be a transdiagnostic characteristic of eating disorders. The Affect School aims to enhance emotional awareness and the ability to perceive and express emotions. This study was conducted as part of an RCT where patients with various eating disorders were randomised to participation in the Affect School as a supplement to treatment. AIM: To explore Affect School participants' and leaders' experiences of the Affect school at an Eating Disorder outpatient unit in Sweden. METHOD: Nine patients with eating disorder diagnoses and three Affect School leaders at an eating disorder outpatient clinic in Sweden were interviewed for their experiences of the intervention. The interviews were analysed with Thematic Analysis. RESULT: Eight themes were revealed at the analysis, five from the participants: "Worries about group participation", "Not alone anymore and gaining new insights about oneself", "Shared stories can also be painful", "Relationships outside the Affect School as a foundation for affective work", and "A change is coming", and three from the leaders:"Affect awareness is important in eating disorders", "Group meetings create opportunities and challenges", and "The Affect School setup needs more customisation". CONCLUSION: The results suggested that the Affect School provided an acceptance for experiencing all sorts of affects. Both leaders and participants considered working with affects necessary, although participants reported no changes in their life situation or condition after the intervention but considered the intervention as part of a process with gradual results. Being part of a group and sharing experiences was experienced as positive by participants and leaders, but the model could be further developed to better adapt to patients with an eating disorder.

Evaluation of the Affect School as supplementary treatment of Swedish women with eating disorders: a randomized clinical trial.

BACKGROUND: Despite solid research there remains a large group of patients with eating disorders who do not recover. Emotion dysregulation has been shown to be a feature in the different eating disorders. A manualized group intervention developed in Sweden, the Affect School, aims to enhance emotional awareness and the ability to perceive and express emotions. AIM: This study aimed to test the hypothesis that participation in the Affect School as a complement to ordinary eating disorder treatment would enhance awareness and regulation of emotions and reduce alexithymia and cognitive eating disorder symptoms in a sample of patients with eating disorders at a Swedish specialized outpatient clinic. METHOD: Forty patients with various eating disorders were randomized to either participation in the Affect School as a supplement to treatment as usual (TAU), or to a TAU control group. Participants were assessed with the Eating Disorder Examination Questionnaire, the Deficits in Emotion Regulation Scale-36, and the Toronto Alexithymia Scale-20 at start, end of intervention, and at the 6- and 12-month follow-ups. RESULTS: No significant differences were observed post-treatment but Affect School participants had improved significantly more than controls on eating disorder cognitions and behaviours and emotion dysregulation at the 6- and 12-month follow-ups and had significantly less alexithymia at the 6-month follow-up. CONCLUSION: Difficulties with emotion recognition and/or regulation can complicate fulfilment of personal needs and obstruct communication and relationships with others. The present study indicates that adding Affect School group sessions to regular treatment enhances emotional awareness and emotion regulation and decreases eating disorder symptoms and alexithymia. Patients with eating disorder diagnoses have described problems with emotional management, for example: lower emotional awareness and difficulties in using adaptive emotional regulatory strategies compared to people without eating disorders. It has been suggested that interventions aiming at enhancing emotional awareness and acceptance would be beneficial in treatment. In the present study we explored whether adding the Affect School to regular treatment would enhance awareness and regulation of emotions and decrease eating disorder symptoms. Forty women with an eating disorder were randomly allocated to either an additional participation in a group treatment for 8 weeks or usual treatment only. The treatment contained education on different affects such as joy, fear, interest, shame, anger, disgust, and worry. The education was followed by discussions on own experiences. Participants filled in self-assessment forms that measured eating disorder symptoms, emotional recognition, and emotion regulation before the start and at the end of the group treatment, and after 6 and 12 months respectively. The results when comparing the two groups suggested that the Affect School could be an effective additional treatment. Participants in the Affect School improved their scorings but the change took time and did not show until at the 6- and 12 months follow-ups.

Development, evaluation and implementation of a digital behavioural health treatment for chronic pain: study protocol of the multiphase DAHLIA project.

INTRODUCTION: Chronic pain affects about 20%-40% of the population and is linked to mental health outcomes and impaired daily functioning. Pharmacological interventions are commonly insufficient for producing relief and recovery of functioning. Behavioural health treatment is key to generate lasting benefits across outcome domains. However, most people with chronic pain cannot easily access evidence-based behavioural interventions. The overall aim of the DAHLIA project is to develop, evaluate and implement a widely accessible digital behavioural health treatment to improve well-being in individuals with chronic pain. METHODS AND ANALYSIS: The project follows the four phases of the mHealth Agile Development and Evaluation Lifecycle: (1) development and pre-implementation surveillance using focus groups, stakeholder interviews and a business model; (2) iterative optimisation studies applying single case experimental design (SCED) method in 4-6 iterations with n=10 patients and their healthcare professionals per iteration; (3) a two-armed clinical randomised controlled trial enhanced with SCED (n=180 patients per arm) and (4) interview-based post-market surveillance. Data analyses include multilevel modelling, cost-utility and indicative analyses.In October 2021, inter-sectorial partners are engaged and funding is secured for four years. The treatment content is compiled and the first treatment prototype is in preparation. Clinical sites in three Swedish regions are informed and recruitment for phase 1 will start in autumn 2021. To facilitate long-term impact and accessibility, the treatment will be integrated into a Swedish health platform (www.1177.se), which is used on a national level as a hub for advice, information, guidance and e-services for health and healthcare. ETHICS AND DISSEMINATION: The study plan has been reviewed and approved by Swedish ethical review authorities. Findings will be actively disseminated through peer-reviewed journals, conference presentations, social media and outreach activities for the wider public. TRIAL REGISTRATION NUMBER: NCT05066087.

Symptom Prevalence of Anxiety and Depression in Older Cardiac Arrest Survivors: A Comparative Nationwide Register Study.

Knowledge about psychological distress in older cardiac arrest (CA) survivors is sparse, and the lack of comparisons with general populations make it difficult to draw any strong conclusions about prevalence and potential changes caused by CA. Our aim was to compare psychological distress between older CA survivors and a general population. This study included survivors 65-80 years old and an age- and sex-matched general population. Data on survivors was collected from the Swedish Register of Cardiopulmonary Resuscitation. The Hospital Anxiety and Depression Scale was used to measure psychological distress. Data were analyzed with non-parametric statistics. The final sample included 1027 CA survivors and 1018 persons from the general population. In both groups, the mean age was 72 years (SD = 4) and 28% were women. The prevalence of anxiety was 9.9% for survivors and 9.5% for the general population, while the corresponding prevalence for depression was 11.3% and 11.5% respectively. Using the cut-off scores, no significant differences between the groups were detected. However, CA survivors reported significantly lower symptom levels using the subscale scores (ΔMdn = 1, p < 0.001). In conclusion, the CA survivors did not report higher symptom levels of anxiety and depression than the general population. However, since psychological distress is related to poor quality-of-life and recovery, screening for psychological distress remains important.

Initial self-blame predicts eating disorder remission after 9 years.

BACKGROUND: Research into predictors of outcome in eating disorders (ED) has shown conflicting results, with few studies of long-term predictors and the possible importance of psychological variables that may act as risk- and maintenance factors. AIM: To identify baseline predictors of ED remission nine years after initial clinical assessment using self-report measures of ED psychopathology, psychiatric symptoms, and self-image in a sample of adult ED patients (N = 104) treated at specialist units in Stockholm, Sweden. Sixty patients participated in the follow-up, of whom 41 patients (68%) had achieved remission. RESULTS: Results suggested that the only significant predictor of diagnostic remission after nine years was initial levels of self-blame. CONCLUSION: In order to ensure long-term recovery in ED it may be important for clinicians to widen their therapeutic repertoire and utilise techniques that reduce self-blame and increase self-compassion. It is difficult to predict how an eating disorder will develop, and research has found varying factors that affect the outcome of the condition. Recovery rates vary from nearly nil to over 90%. This variation could be explained by different research factors, but are more likely due to varying definitions of 'recovery', with less stringent definitions yielding high recovery rates and more stringent definitions yielding lower rates. The present study investigated whether the severity of eating disorder symptoms and other psychiatric symptoms could predict recovery nine years from first admission to specialised eating disorder care. Sixty patients at three eating disorder treatment units participated, and their scores on self-report measures of symptoms were used as predictor variables. Forty-one participants had no eating disorder diagnosis at nine-year follow-up. Most participants with binge-eating disorder had recovered, while the poorest outcome was found for anorexia nervosa with slightly over half of patients recovered after nine years. The only predictor for the nine-year outcome was a higher initial rating of self-blame, measured with the Structural Analysis of the Social Behavior. It was concluded that it may be important for clinicians to detect and address self-blame early in the treatment of eating disorders in order to enhance the possibility of recovery. Treatment should focus on reducing self-blame and increasing self-acceptance.

Just like fireworks in my brain - a Swedish interview study on experiences of emotions in female patients with eating disorders.

BACKGROUND: Patients with eating disorders have reported poorer emotional awareness, more emotional suppression, less use of adaptive emotional regulation strategies, and more use of maladaptive emotional regulation strategies compared to people in healthy control groups. AIM: To explore experiences of emotions by a transdiagnostic sample of patients with eating disorders. METHOD: Nine patients with different eating disorder diagnoses at an eating disorder outpatient clinic in Sweden were interviewed for their thoughts on emotions. The interviews were analyzed with Thematic Analysis. RESULT: Four themes were constructed: "Not knowing what one feels", "Switch off, run away, or hide behind a mask", "Emotions in a lifelong perspective", and "Using eating behaviours to regulate emotions". The patients described uncertainty regarding whether they experienced emotions correctly. They described how they tried to avoid difficult emotions through suppressive strategies and eating disorder behaviour. All described strategies were inefficient and all emotions were experienced as problematic, even joy. Since joy was used as a mask, the real experience of happiness was lost and mourned. CONCLUSION: All kinds of emotions were considered problematic to experience, but shame, fear, and sadness were considered worst. It is difficult to know if the emotional difficulties preceded an eating disorder, however such difficulties may have increased as a result of the eating disorder.

Perfectionism in Eating Disorders: Are Long-Term Outcomes Influenced by Extent and Changeability in Initial Perfectionism?

PURPOSE: Perfectionism has been found to predict outcomes in the treatment of eating disorders (ED). In the present study, we took advantage of longitudinal data to: a) investigate whether there are different patterns of perfectionism during the first six months after admission in a clinical sample of patients with ED, and b) describe how these patterns are related to long-term outcome. METHODS: A sample of patients (N=294) from the Coordinated Evaluation and Research at Specialized Units for Eating Disorders database was divided into clusters according to perfectionism patterns measured with the EDI-2 perfectionism scale at baseline, and six months in treatment. Cluster analysis was performed on the extent and perseverance/changeability of self-oriented and socially described perfectionism. Outcome was measured with the EDI-2 and the SCL-63. Frequencies of eating disorder diagnoses were investigated. RESULTS: Five clusters were identified. Low perfectionism was associated with lower levels of ED and psychiatric symptomatology at baseline. There were no significant differences between clusters on outcome variables at 36-month follow-up. CONCLUSIONS: Results indicated better psychiatric and psychological health three years after the initial measure. Patterns of relations between the extent and possible changes of perfectionism, measured with the EDI-P at baseline and after six months, did not appear to be associated with long-term outcomes on psychiatric health ratings.

A Sisyphean task: experiences of perfectionism in patients with eating disorders.

BACKGROUND: Despite the theoretical links between eating disorders and perfectionism, the definition of perfectionism in practice is complicated. The present study explored descriptions and experiences of perfectionism described by a transdiagnostic sample of patients. METHODS: In-depth, semi-structured interviews were carried out with 15 patients. The interviews were analyzed by Thematic Analysis. A comparison between the patients' scorings on the Eating Disorder Inventory-Perfectionism scale was also performed. RESULTS: Seven themes were found: The origins of perfectionism, Top performance, Order and self-control, A perfect body, Looking good in the eyes of others, A double-edged coping strategy, and A Sisyphean task. The women in this study did not emphasize weight and body as the main perfectionistic strivings. Core descriptions were instead order, self-control and top performances. All of the participants described the awareness of reaching perfectionism as impossible. Scorings of self-oriented perfectionism was significantly higher compared to socially prescribed perfectionism. No differences in the narratives related to perfectionism scores or eating disorder diagnoses were found. CONCLUSIONS: The results showed that psychometric measures do not always capture the patients' definitions of perfectionism, but regarding that perfectionism serves as a means to regulate affects and may lead into an exacerbation of the eating disorder, and the development of obsessive-compulsive symptoms, it is important to investigate the personal definitions of perfectionism.

Perfectionism and sense of coherence among patients with eating disorders.

BACKGROUND: There is a substantial body of research on eating disorders and perfectionism. Also there are several studies on eating disorders and sense of coherence (SOC), but studies regarding all three subjects are sparse. Perfectionism and the degree of SOC are considered central and aggravating aspects of psychiatric conditions, not least in relation to eating disorders. AIMS: The present study aimed to describe the relationship between perfectionism as operationalized by Garner in the Eating Disorder Inventory-2 and SOC as defined by Antonovsky in the SOC-29 scale. The hypothesis was that SOC should be negatively associated with perfectionism. METHODS: Data from the two self-measuring instruments collected from 95 consecutively recruited eating disorder outpatients were analysed with descriptive and inferential statistics. RESULTS: The patients in the present study scored consistently with other Swedish eating disorder samples on the Perfectionism subscale in the Eating Disorder Inventory-2 (EDI-P) and on the SOC-29, indicating a higher degree of perfectionism and weaker SOC than normal population groups. Perfectionism was significantly correlated to SOC. The correlation was negative, confirming the study hypothesis. The hypothesis was further confirmed in a subgroup analysis comparing patients with different degrees of SOC related to their EDI-P scores. CONCLUSIONS: Perfectionism is associated with SOC in patients with eating disorders. CLINICAL IMPLICATIONS: The clinical implications derived from the study could be a recommendation to focus on the SOC in patients with an eating disorder with the hope of lowering the patients' perfectionism as well.