Melissa Jade Pehlivan

Background: There has been growing interest in developing a clinical staging model for eating disorders (EDs). The aim of this scoping review is to investigate the extent, range, and nature of research that can inform clinical staging approaches for EDs. Methods: This review was conducted following the Joanna Briggs Institute methodology for scoping reviews and the PRISMA extension for Scoping Reviews. A search of PubMed, PsycINFO, MEDLINE and Web of Science databases was conducted. Sixty studies were included for review, and data were extracted according to revised pre-published criteria. Studies were summarized using narrative synthesis. Results: Thirty-six of the included manuscripts were quantitative, 18 were qualitative, and six were conceptual/review papers. The included studies primarily focused on anorexia nervosa in white, female samples and compared only two stages of illness, equating to “early” and “longstanding” or “severe and enduring” EDs. “Middle” stages or transitions between stages were not well-defined. Stages have mostly been conceptualized using duration of illness or other behavioral or clinical parameters, with few (neuro) biological studies identified. Factors that may modify illness stage have not yet been integrated into ED staging literature. Conclusions: There is growing consensus that early- and later-stage EDs have distinct characteristics and treatment requirements; however, these distinctions require clearer definition. Recommendations for future research are outlined, emphasizing integration of psychosocial and biological research, focused investigation of illness phases outside of early and longstanding phases, and evaluation of personalized, stage-based treatments. A tentative staging model for EDs is proposed.

Difficulties in cognitive functioning (e.g., memory, attention) are common in chronic conditions characterized by physical pain, fatigue and depression. Yet investigations in endometriosis are lacking. We aimed to assess: (1) perceived cognitive functioning, (2) the association of cognitive functioning with fatigue, pain and depressive symptoms, and (3) whether endometriosis treatments moderated these relationships. Participants ( n = 1239) with diagnosed endometriosis completed an online survey assessing perceived cognitive functioning [Functional Assessment of Cancer Therapy-Cognitive Function (FACT-Cog)], pain, fatigue and depression. FACT-Cog scores indicated cognitive impairments in 80% of participants. Hierarchical regression analyses demonstrated that greater pain, fatigue, and depressive symptoms were associated with poorer perceived cognitive functioning. Moderation analyses indicated that taking hormonal treatments or pain medications diminished the adverse effects of depression, but exacerbated the adverse effects of pain, on cognitive functioning. The extensive perceived cognitive difficulties evident in this sample suggests that supportive interventions to enhance cognitive functioning may be warranted.

Research is only beginning to shape our understanding of eating disorders as metabolic-psychiatric illnesses. How eating disorders (EDs) are classified is essential to future research for understanding the etiology of these severe illnesses and both developing and tailoring effective treatments. The gold standard for classification for research and diagnostic purposes has primarily been and continues to be the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). With the reconceptualization of EDs comes new challenges of considering how EDs are classified to reflect clinical reality, prognosis and lived experience. In this article, we explore the DSM-5 method of categorical classification and how it may not accurately represent the fluidity in which EDs present themselves. We discuss alternative methods of conceptualizing EDs, and their relevance and implications for genetic research.

Objective: To investigate the acceptability, feasibility, and preliminary effectiveness of “SupportED,” a novel, online, self‐paced skills‐based program for carers/support people of those with lived and/or living experience of an eating disorder (ED).Method: Carers of a loved one with an ED were invited to undertake a five‐module skills‐based (one core module, four optional modules) online program at their own pace. Modules cover general information about EDs, communication, practical skills, treatment engagement, and recovery. Participants completed demographics and were assessed using EDSIS, CASK, and DASS‐21 for caregiver burden, skills, and distress, respectively, at program completion and 3‐month follow‐up. Feedback on the program and modules was also collected.Results: Most carers (65%; 82/126) completed the core module of the program, which is on par with other online learning programs. Nearly half of program completers responded to the 3‐month follow‐up (n = 39). On average, carers rated the program as relevant and useful and found the information validating and easy to understand, albeit a few carers found the program time‐consuming and technically challenging. Intent‐to‐treat (ITT) linear mixed models demonstrated the preliminary effectiveness of the program for improving carer burden and skills, although the change in carer distress was non‐significant.Conclusions: Results of this case series evaluation suggest SupportED is an acceptable and feasible program for carers and may improve burden and support skill development. Although the online, self‐paced format was highly rated, small improvements to improve acceptability were suggested. Reasons for a lack of impact on carer distress are discussed.Public significance: This article describes a case series evaluation of “SupportED,” an online skills‐based support program for families, carers, and supporters of people with lived experience of an eating disorder. This is the first online carer support program that is designed to be inclusive of all carer types (e.g., partners, siblings) for all eating disorder presentations. Findings suggest the program's suitability and helpfulness for reducing carers’ load and bolstering skills and knowledge.

Objective: Carers, vital in the care of individuals with an eating disorder (ED), experience substantial caregiving burden and unmet needs. This study aims to identify factors which contribute to the burden experienced by carers of a loved one with an ED and their support service usage.Method: Carers (N = 245) completed an online questionnaire assessing demographic, carer‐specific, individual and ED factors. Multivariate relationships with caregiving burden were examined using forwards elimination to produce a parsimonious model of carer burden.Results: The final model, consisting of caregiving factors (e.g., relationship type, skills), carer mental health) and loved one wellbeing (i.e., purging symptoms, depression/self‐harm/suicidality) explained a large proportion (62%) of the variance in carers' burden. Carer mental health, caregiving skills and relationship type (e.g., parent, spouse, sibling) were key predictors of carers' burden. Nearly a third of carers had not used any carer support services, yet most carers expressed an interest in such services.Conclusion: Caregiving burden is determined by experiences and skills of the carer as well as the person they are caring for. Carer support services should continue to address the general wellbeing of carers and caregiver skills. Research into the barriers to carer support uptake is needed.

Background: Endometriosis, which affects 1 in 10 people assigned female at birth, is a chronic systemic inflammatory disease with a high symptom burden and adverse socioemotional impacts. There is a need for an accessible, cost-effective, and low-burden intervention to support individuals in managing their endometriosis condition. Objective: This study aimed to co-design and evaluate the acceptability, readability, and quality of a bank of supportive SMS text messages (EndoSMS) for individuals with endometriosis. Methods: In phase 1 of this mixed method design, 17 consumer representatives (individuals with endometriosis) participated across three 3-hour web-based (Zoom, Zoom Video Communications, Inc) focus groups. The transcripts were encoded and analyzed thematically. In phase 2, consumer representatives (n=14) and health care professionals (n=9) quantitatively rated the acceptability, readability, and appropriateness of the developed text messages in a web-based survey. All the participants initially completed a background survey assessing sociodemographic and medical factors. Results: Consumer representatives demonstrated diverse sociodemographic characteristics (Mage=33.29), varying in location (metropolitan vs rural or regional), employment, and relationship and educational statuses. Participants reached a consensus regarding the delivery of 4 SMS text messages per week, delivered randomly throughout the week and in one direction (ie, no reply), with customization for the time of day and use of personal names. Seven main areas of unmet need for which participants required assistance were identified, which subsequently became the topic areas for the developed SMS text messages: emotional health, social support, looking after and caring for your body, patient empowerment, interpersonal issues, general endometriosis information, and physical health. Through a web-based survey, 371 co-designed SMS text messages were highly rated by consumers and health care professionals as clear, useful, and appropriate for individuals with endometriosis. Readability indices (Flesch-Kincaid scale) indicated that the SMS text messages were accessible to individuals with a minimum of 7th grade high school education. Conclusions: On the basis of the needs and preferences of a diverse consumer representative group, we co-designed EndoSMS, a supportive SMS text message program for individuals with endometriosis. The initial evaluation of the SMS text messages by consumer representatives and health professionals suggested the high acceptability and suitability of the developed SMS text messages. Future studies should further evaluate the acceptability and effectiveness of EndoSMS in a broader population of individuals with endometriosis.

BACKGROUND Background: Endometriosis, affecting 1 in 10 people assigned female at birth, is a chronic systemic inflammatory disease, with high symptom burden and adverse socio-emotional impacts. There is a need for an accessible, cost-effective and low burden intervention to support individuals in managing their endometriosis condition. OBJECTIVE To co-design and evaluate the acceptability, readability and quality of a bank of supportive text messages (EndoText) for individuals with endometriosis. METHODS In Phase 1 of this mixed method design, 17 consumer representatives (individuals with endometriosis) participated across three x 3-hour online (Zoom) focus groups. Transcripts were encoded and analysed thematically. In Phase 2, consumer representatives (n = 14) and healthcare professionals (n=9) were then invited to provide feedback on the acceptability, readability and appropriateness of the developed text messages in an online survey. All participants completed a background survey assessing sociodemographic and medical factors prior to participation. RESULTS Consumer representatives demonstrated diverse sociodemographic characteristics (Mage = 33.29), varying in location (metropolitan vs. rural/regional), employment, relationship and education status. Participants agreed on a frequency of four text messages per week, delivered randomly throughout the week and in one direction (i.e., no reply), with customisation for the time of day and use of personal names. There were seven main areas with which individuals required assistance and became the main topic areas for the developed text messages: general endometriosis information; physical health; emotional health; social support; looking after and caring for your body, patient empowerment and interpersonal issues. Via an online survey, 371 co-designed text messages were highly rated by consumers and healthcare professionals as clear, useful and appropriate for individuals with endometriosis. Further, readability indices (Flesch-Kincaid scale) indicated the text messages were accessible to individuals with a minimum of 7th grade high education. CONCLUSIONS Based on the needs and preferences of a diverse consumer representative group, we co-designed EndoText, a supportive text message program for individuals with endometriosis. Initial evaluation of the text messages by consumer representatives and health professionals suggests high acceptability and suitability of the developed text messages. Future studies should further evaluate the acceptability and effectiveness of EndoText for a broader population of individuals with endometriosis.

The majority of breast cancer survivors (BCSs) experience body image concerns following treatment. Body Image distress (BID) is associated with psychological distress and diminished quality of life...