Promoting good mental health over the menopause transition.

The potential risk for mental health conditions over the menopause transition shapes women's expectations and informs putative physiological mechanisms regulating women's mental health. We review evidence from prospective studies reporting on associations between mental health conditions and the menopause transition. Major depressive disorder and the more prevalent subthreshold depressive symptoms are the most common conditions studied. We reviewed 12 prospective studies reporting depressive symptoms, major depressive disorder, or both over the menopause transition and found no compelling evidence for a universal increased risk for either condition. However, specific subgroups of participants, primarily defined by menopause-related risk factors (ie, vasomotor symptoms that are severe or disturb sleep, a long duration of the transition, or reproductive hormone dynamics) and psychosocial risk factors (eg, stressful life events), were vulnerable to depressive symptoms. The increased risk of major depressive disorder over the menopause transition appears predominantly in individuals with previous major depressive disorder. Greater focus on recognising risk factors in primary care is warranted. On the basis of scarce data, we found no compelling evidence that risk of anxiety, bipolar disorder, or psychosis is universally elevated over the menopause transition. Potential misattribution of psychological distress and psychiatric disorders to menopause could harm women by delaying accurate diagnosis and the initiation of effective psychotropic treatments, and by creating negative expectations for people approaching menopause. A paradigm shift is needed. We conclude with recommendations for the detection and treatment of depressive symptoms or major depressive disorder and strategies to promote good mental health over the menopause transition, while responsibly preparing and supporting those at risk.

Gratitude, optimism, and satisfaction with life and patient-reported outcomes in patients undergoing hematopoietic stem cell transplantation.

OBJECTIVE: Associations between positive psychological well-being (PPWB) and patient-reported outcomes (PROs, e.g., quality of life [QOL]) have yet to be studied extensively in patients with hematologic malignancies who are allogeneic hematopoietic stem cell transplant (HSCT) survivors, despite substantial evidence that PPWB impacts PROs of other medical populations. METHODS: We conducted a secondary analysis of cross-sectional data examining the association of PPWB and PROs at day 100 post-transplant among 158 allogeneic HSCT recipients. Optimism, gratitude, life satisfaction, and PROs (i.e., QOL, anxiety, depression, and PTSD symptoms) were assessed using the Life Orientation Test-Revised, Gratitude Questionnaire, Satisfaction with Life Scale, Functional Assessment of Cancer Therapy-Bone Marrow Transplant, Hospital Anxiety and Depression Scale, and Post-Traumatic Stress Disorder (PTSD) Checklist-Civilian Version, respectively. We used linear and multivariate regressions for all analyses and controlled for patient factors. RESULTS: Optimism was associated with better QOL (ß = 1.46; p < 0.001) and lower levels of anxiety (ß = -0.28; p < 0.001), depression (ß = -0.31; p < 0.001), and PTSD (ß = -0.58; p < 0.001). Gratitude was associated with better QOL (ß = 1.11; p < 0.001) and lower levels of anxiety (ß = -0.21; p = 0.001), depression (ß = -0.14; p = 0.021), and PTSD (ß = -0.32; p = 0.032). Finally, satisfaction with life was associated with better QOL (ß = 1.26; p < 0.001) and lower levels of anxiety (ß = -0.18; p < 0.001), depression (ß = -0.21; p < 0.001), and PTSD (ß = -0.49; p < 0.001). CONCLUSION: Optimism, gratitude, and satisfaction with life were all associated with better QOL and lower levels of psychological distress in allogeneic HSCT survivors. These data support studies to harness PPWB as a therapeutic intervention for this population throughout HSCT recovery.

The Effects of Mindfulness and Meditation on Vagally Mediated Heart Rate Variability: A Meta-Analysis.

OBJECTIVE: Heart rate variability (HRV) is a marker of autonomic nervous system function associated with both physical and mental health. Many studies have suggested that mindfulness and meditation-based interventions (MBIs) are associated with improvements in HRV, but findings are mixed, and to date, no comprehensive meta-analysis has synthesized results. METHODS: Systematic literature searches were conducted using PsycINFO, Embase, Medline, CINAHL, ERIC, and Scopus to identify randomized controlled trials (RCTs) investigating the effects of predominantly seated MBIs on resting-state vagally mediated HRV. Risk of bias was judged using the Cochrane Risk of Bias tool. RESULTS: Nineteen RCTs met the criteria for inclusion in the meta-analysis. Random-effects meta-analysis found that MBIs were not efficacious in increasing vagally mediated resting-state HRV relative to control conditions (Hedges g = 0.38, 95% confidence interval [CI] = -0.014 to 0.77). When removing an outlier (g = 3.22), the effect size was reduced, CI narrowed, and findings remained nonsignificant (g = 0.19, 95% CI = -0.02 to 0.39). High heterogeneity in results (I2 = 89.12%) could not be explained by a priori-determined moderators including intervention duration, study setting, and control type. CONCLUSIONS: There is currently insufficient evidence to indicate that MBIs lead to improvements in vagally mediated HRV over control conditions. Future large, well-designed RCTs with low risk of methodological bias could help add to the current evidence to elucidate any role MBIs might play in impacting HRV.

Beyond Diversity and Inclusion: Understanding and Addressing Ableism, Heterosexism, and Transmisia in the Legal Profession: Comment on Blanck, Hyseni, and Altunkol Wise's National Study of the Legal Profession.

Far too many-if not most-of us in the legal profession who belong to both the disability and LGBTQ+ communities have known informally, through our own experiences and those of others like us, that workplace bias and discrimination on the basis of disability, sexuality, and gender identity is still widespread. The new study by Blanck et al. on diversity and inclusion in the U.S. legal profession provides empirical proof of this phenomenon, which might otherwise be dismissed as being based on anecdotal evidence.1 Its findings lend credibility to our position that the legal profession must make systemic changes to address workplace ableism, heterosexism, and transmisia.2 They also suggest possibilities as to where and how it might start to do so through providing information on who employers discriminate against most often and in what forms.3.

A role for the ventromedial prefrontal cortex in self-generated episodic social cognition.

The human mind is equally fluent in thoughts that involve self-generated mental content as it is with information in the immediate environment. Previous research has shown that neural systems linked to executive control (i.e. the dorsolateral prefrontal cortex) are recruited when perceptual and self-generated thoughts are balanced in line with the demands imposed by the external world. Contemporary theories (Smallwood and Schooler, 2015) assume that differentiable processes are important for self-generated mental content than for its regulation. The current study used functional magnetic resonance imaging in combination with multidimensional experience sampling to address this possibility. We used a task with minimal demands to maximise our power at identifying correlates of self-generated states. Principal component analysis showed consistent patterns of self-generated thought when participants performed the task in either the lab or in the scanner (ICC ranged from 0.68 to 0.86). In a whole brain analyses we found that neural activity in the ventromedial prefrontal cortex (vMPFC) increases when participants are engaged in experiences which emphasise episodic and socio-cognitive features. Our study suggests that neural activity in the vMPFC is linked to patterns of ongoing thought, particularly those with episodic or social features.

A Positive Psychology-Motivational Interviewing Intervention to Promote Positive Affect and Physical Activity in Type 2 Diabetes: The BEHOLD-8 Controlled Clinical Trial.

OBJECTIVE: Physical activity is associated with superior health outcomes in patients with type 2 diabetes (T2D), but most T2D patients do not follow physical activity recommendations. The objective of this study was to assess the feasibility and impact of a novel combined positive psychology-motivational interviewing (PP-MI) intervention to promote physical activity in T2D. METHODS: This controlled clinical trial compared an 8-week, phone-delivered PP-MI intervention to an attention-matched MI-enhanced behavioral counseling condition among 60 participants with T2D and suboptimal moderate to vigorous physical activity (MVPA; <150 min/wk). The primary study outcome was feasibility (proportion of sessions completed) and acceptability (0-10 ease and utility ratings of each session). Secondary outcomes were between-group differences in changes in positive affect (main psychological outcome) and accelerometer-measured physical activity (MVPA and steps per day), using mixed-effects regression models, at 8 and 16 weeks. RESULTS: Ninety-two percent of PP-MI sessions were completed, and mean participant ratings of ease/utility were 8.5 to 8.8/10, surpassing a priori benchmarks for feasibility and acceptability. PP-MI participants had small-medium effect size (ES) difference improvements in positive affect compared with MI (8 weeks: estimated mean difference [EMD] = 3.07 [SE = 1.41], p = .029, ES = 0.44; 16 weeks: EMD = 2.92 [SE = 1.73], p = .092, ES = 0.42). PP-MI participants also had greater improvements in MVPA (8 weeks: EMD = 13.05 min/d [SE = 5.00], p = .009, ES = 1.24; 16 weeks: EMD = 7.96 [SE = 4.53], p = .079, ES = 0.75), with similar improvements in steps per day. CONCLUSIONS: The PP-MI intervention was feasible and well accepted. Next-step efficacy studies can more rigorously explore the intervention's effects on physical activity and clinical outcomes. TRIAL REGISTRATION: ClinicalTrials.gov Registration No. NCT03150199.

Beyond depression, anxiety and post-traumatic stress disorder symptoms: Qualitative study of negative emotional experiences in hematopoietic stem cell transplant patients.

OBJECTIVE: Psychological distress impacts a variety of health outcomes in hematopoietic stem cell transplantation (HSCT). Focused qualitative studies on a wider range of psychological distress in HSCT patients are lacking. However, understanding the subtleties of psychological distress (e.g. fear, guilt, loss of control) in HSCT patients is imperative to optimising the psychological well-being of this vulnerable population. To explore psychological distress after transplantation, we conducted semi-structured interviews with 25 HSCT patients. METHODS: Interviews were completed in the first 100 days after transplantation. Interview modules explored psychological distress symptoms in the hospital and during the first 100 days after HSCT, along with the perceived impact of these symptoms on their recovery. RESULTS: Of the negative emotional experiences reported, feeling trapped, fear, guilt, discouragement and powerlessness were frequently expressed. Patients reported that negative emotional states interfered with their motivation to participate in health behaviours important to the transplant recovery. CONCLUSION: As one of the few qualitative studies broadly characterising the nature of negative emotional experiences after HSCT, these findings add to our understanding of the specific psychological challenges in this growing patient population and can inform development of targeted interventions and overall management of psychological distress during HSCT recovery.

The Effects of Positive Psychological Interventions on Medical Patients' Anxiety: A Meta-analysis.

OBJECTIVE: Positive psychology interventions, which involve systematic completion of activities designed to promote well-being, are being increasingly studied in medically ill patients. However, the extent to which these interventions ameliorate patient anxiety remains unclear. Therefore, the aim of the study was to conduct a meta-analysis to determine the efficacy of positive psychology interventions in reducing anxiety in medical patients. METHODS: Electronic databases Medline, PsycINFO, SciELO, Cochrane (Central), and ClinicalTrials.gov were searched from inception to June 18, 2018, to identify studies of positive psychology interventions that included a validated measure of anxiety as an outcome measure. RESULTS: The search generated a total of 1024 studies. Twelve randomized controlled trials (n = 1131) delivered to medical patients were included in the review, and a further 11 nonrandomized trials (n = 300) were included in a secondary analysis. Positive psychology interventions were effective at reducing patient anxiety relative to a control with a small to medium effect size (g = -0.34, 95% confidence interval = -0.50 to -0.18), and results were maintained at a mean of 8-week follow-up (g = -0.31, 95% confidence interval = -0.54 to -0.08). Clinician-led interventions seemed to be more effective than self-administered interventions, and longer interventions were more effective than shorter interventions. Secondary analysis of nonrandomized trials also found that positive psychology interventions are associated with reduced anxiety. CONCLUSIONS: Positive psychology interventions seem to be effective at reducing medical patient anxiety. Future research is needed to determine optimal intervention characteristics, including dose and intervention content, that maximize the observed treatment effects.

Positive psychological experiences in allogeneic hematopoietic stem cell transplantation.

OBJECTIVE: Positive psychological constructs (e.g., optimism and hope) have been associated with superior health outcomes in the recovery from hematopoietic stem cell transplantation (HSCT) in prior work. However, such studies have not examined a broad range of positive psychological constructs, their sources or evolution over time, or their connections with key health behaviors. We used semistructured qualitative interviews in 25 HSCT patients to explore the nature and sources of positive psychological experiences during the first 100 days after transplantation. METHODS: Participants completed interviews during their HSCT hospitalization and approximately 100 days after transplantation. Transcribed interviews were organized and analyzed using NVivo 12 software by two coders (κ = 0.92). Interviews focused on the breadth of positive psychological experiences, their sources and evolution during the 100 days, and participants' perceived impact of positive constructs on health behaviors. RESULTS: Several positive psychological constructs especially gratitude, determination, and optimism were frequently expressed. Family support and deliberate participation in pleasant and meaningful activities were the two primary sources of positive psychological experiences after HSCT. At baseline, participants consistently reported gratitude for their donors while follow-up was consistently characterized by hope for cure and return to baseline level of functioning. Additionally, participants related bidirectional relationships between positive psychological well-being experiences and completion of health behaviors over time. CONCLUSIONS: As one of the first qualitative studies characterizing the breadth, sources, and evolution of positive psychological experiences in HSCT patients, these findings add to the literature aimed at understanding psychological well-being in this complex and growing patient population.

Self-compassion, attitudes to ageing and indicators of health and well-being among midlife women.

OBJECTIVES: Attitudes to ageing exert a powerful influence on health and well-being, yet surprisingly little research has examined factors that contribute to the formation of these attitudes. The aim of this study was to consider the potential role of self-compassion in predicting attitudes to ageing, which in turn contribute to positive and negative mental well-being and self-reported health. METHOD: This was a cross-sectional study using data from 517 midlife women aged between 40 and 60. Structural equation modelling was used to examine the relationships between self-compassion, three facets of attitudes to ageing and well-being outcomes. RESULTS: Together, self-compassion and attitudes to ageing explained between 36% and 67% of the variance in well-being. Self-compassion was a strong predictor of attitudes towards psychosocial loss, physical change and psychological growth (ß range: .22-.51). Furthermore, the relationship between self-compassion and well-being outcomes was partially mediated by attitudes to physical change. CONCLUSION: Self-compassion may be a modifiable internal resource to promote healthy attitudes to ageing in midlife, when ageing becomes personally relevant. Moreover, attitudes towards physical change may help explain how self-compassion promotes well-being among midlife women.

Randomized trial in postprandial functional dyspepsia: Reassurance and diagnostic explanation with or without traditional dietary advice.

BACKGROUND: Almost 80% of individuals with functional dyspepsia experience meal-related symptoms and are diagnosed with postprandial distress syndrome (PDS). However, studies evaluating dietary modifications in PDS are sparse. We performed a single-center randomized trial comparing reassurance and diagnostic explanation (RADE) with or without traditional dietary advice (TDA) in PDS. METHODS: Following a normal upper gastrointestinal endoscopy, individuals with PDS were randomized to a leaflet providing RADE ± TDA; the latter recommending small, regular meals and reducing the intake of caffeine/alcohol/fizzy drinks and high-fat/processed/spicy foods. Questionnaires were completed over 4 weeks, including self-reported adequate relief of dyspeptic symptoms, and the validated Leuven Postprandial Distress Scale (LPDS), Gastrointestinal Symptom Rating Scale, and Nepean Dyspepsia Index for quality of life. The primary endpoint(s) to define clinical response were (i) ≥50% adequate relief of dyspeptic symptoms and (ii) >0.5-point reduction in the PDS subscale of the LPDS (calculated as the mean scores for early satiety, postprandial fullness, and upper abdominal bloating). KEY RESULTS: Of the 53 patients with PDS, 27 were assigned RADE-alone and 26 to additional TDA. Baseline characteristics were similar between groups, with a mean age of 39 years, 70% female, 83% white British, and coexistent irritable bowel syndrome in 66%. The primary endpoints of (i) adequate relief of dyspeptic symptoms were met by 33% (n = 9) assigned RADE-alone versus 39% (n = 10) with TDA; p-value = 0.70, while (ii) a reduction of >0.5 points in the PDS subscale was met by 37% (n = 10) assigned RADE-alone versus 27% (n = 7) with TDA; p-value = 0.43. Response rates did not differ according to irritable bowel syndrome status. There were no significant between-group changes in the gastrointestinal symptom rating scale and dyspepsia quality of life. CONCLUSIONS & INFERENCES: This study of predominantly white British patients with PDS found the addition of TDA did not lead to significantly greater symptom reduction compared with RADE alone. Alternate dietary strategies should be explored in this cohort.

Self-compassion improves emotion regulation and mental health outcomes: A pilot study of an online self-compassion program for autistic adults.

LAY ABSTRACT: Self-compassion is when we are aware of our feelings and thoughts, are friendly toward ourselves, and realize everyone feels pain and makes mistakes. Self-compassion is associated with having better mental health and well-being in autistic and non-autistic people. But we do not know if autistic people's self-compassion can be improved through psychoeducation and self-compassion practices. We co-produced an online self-guided self-compassion program based on evidence-based self-compassion practices for autistic adults called the Self-compassion Program for Autistic Adults. This program included live-experiences videos of autistic adults reflecting on their self-compassion and self-critical experiences. This study piloted the program with 39 autistic adults. We wanted to see if these autistic adults' self-compassion, emotion regulation, mental health, and psychological well-being improved after completing this program. We found that the autistic participants' self-compassion, emotion regulation, mental health, and psychological well-being improved significantly after completing the program over 5 weeks. We also found that just over half of the participants reported experiencing negative reactions associated with self-compassion practices. We suggested some clinical implications, including a recommendation for emotion regulation interventions to incorporate self-compassion to help promote access to the affiliative system. In addition, autistic adults who are psychologically vulnerable may need to work with mental health professionals while developing self-compassion to help manage the possible negative reactions associated with some self-compassion practices.

A qualitative exploration of an autism-specific self-compassion program: The ASPAA.

LAY ABSTRACT: Autistic people often struggle to find the right support for their mental health. We wanted to change that by trying a new approach to help autistic adults with their emotions and well-being. We focused on something called "self-compassion," which is a way of being kind and understanding toward ourselves. This approach has worked well for many people, but we didn't know if it would work for autistic individuals. We invited 39 autistic adults to join an online program that taught them about self-compassion. The program lasted 5 weeks and included educational materials, meditation exercises, and self-reflection activities. We asked the participants for feedback each week and at the end of the program. From their responses, we discovered four important things. First, self-compassion had a big positive impact on the well-being of autistic adults. Second, they faced some challenges during the program. Third, they saw self-compassion as a journey that takes time and practice. Finally, they described how they valued changes to help autistic people engage with the program. Our findings show that self-compassion can really help autistic adults. We learned about the benefits they experienced and the difficulties they faced. Most importantly, we found that personalized support is crucial for autistic individuals. By creating programs that consider their specific needs, we can improve their mental health and make their lives better.

"Self-compassion changed my life": The self-compassion experiences of autistic and non-autistic adults and its relationship with mental health and psychological wellbeing.

Self-compassion is a gentle way of relating to oneself, linked to a host of mental health benefits in non-autistic people. Although many autistic individuals report high anxiety and depression symptoms, no research to-date has examined the self-compassion experiences of autistic individuals and determined if self-compassion is associated with psychopathology. Therefore, the purpose of the current study was to address this research gap. The participants (153 autistic and 93 non-autistic adults) completed on online survey and 11 autistic participants were also interviewed. Autistic participants reported significantly lower self-compassion than non-autistic adults, and in both groups, those with higher self-compassion reported higher psychological wellbeing and lower depression symptoms. Demographic predictors of self-compassion were identified. These findings have both clinical and research implications.

Does self-compassion explain variance in sleep quality in women experiencing hot flushes?

OBJECTIVES: With poor sleep highly prevalent during the menopause transition, there is a need to better understand modifiable psychological resources that may be associated with improved sleep. Hence, we investigated whether self-compassion can explain variance in self-reported sleep quality in midlife women, over and above vasomotor symptoms. METHODS: This cross-sectional study (N = 274) used questionnaire data from self-report measures of sleep, hot flushes and night sweats, hot flush interference, and self-compassion, with analyses conducted using sequential (hierarchical) regression. RESULTS: Poor sleep, as measured by the Pittsburgh Sleep Quality Index, was prevalent and significantly worse in the subsample of women with hot flushes and night sweats, g = 0.28, 95 % CI [0.04, 0.53]. The interference of hot flushes in everyday life (ß = 0.35, p < .01), but not their frequency, predicted self-reported sleep quality. Once self-compassion was added to the model it was the only predictor of poor sleep (ß = -0.32, p < .01). When positive self-compassion and self-coldness were considered separately, the effect on sleep quality appeared to be attributable to self-coldness scores alone (ß = 0.29, p < .05). CONCLUSIONS: Self-compassion may have a stronger relationship with self-reported sleep quality in midlife women than vasomotor symptoms. Future intervention-based research could test the efficacy of self-compassion training for midlife women experiencing sleep disturbances, as this may be an important and modifiable psychological resilience factor.

Dancing for Parkinson's Disease Online: Clinical Trial Process Evaluation.

Background: Dancing is an engaging physical activity for people living with Parkinson's disease (PD). We conducted a process evaluation for a PD trial on online dancing. Methods: "ParkinDANCE Online" was co-produced by people with PD, healthcare professionals, dance instructors, and a PD organisation. The evaluation mapped the following inputs: (i) stakeholder steering group to oversee program design, processes, and outcomes; (ii) co-design of online classes, based on a research evidence synthesis, expert advice, and stakeholder recommendations; (iii) trial fidelity. The key activities were (i) the co-design of classes and instruction manuals, (ii) the education of dance teachers, (iii) fidelity checking, (iv) online surveys, (v) and post-trial focus groups and interviews with participants. The outputs pertained to: (i) recruitment, (ii) retention, (iii) adverse events, (iv) fidelity, (v) protocol variations, and (vi) participant feedback. Results: Twelve people with PD, four dance instructors and two physiotherapists, participated in a 6-week online dance program. There was no attrition, nor were there any adverse events. Program fidelity was strong with few protocol variations. Classes were delivered as planned, with 100% attendance. Dancers valued skills mastery. Dance teachers found digital delivery to be engaging and practical. The safety of online testing was facilitated by careful screening and a home safety checklist. Conclusions: It is feasible to deliver online dancing to people with early PD.

Centering the Inner Experience of Autism: Development of the Self-Assessment of Autistic Traits.

Current tools for identifying autism are critiqued for their lack of specificity and sensitivity, especially in autistic people who are older, have higher verbal ability or significant compensatory skills, and are not cisgender boys. This may reflect the following: the historical focus of autism research on White (cisgender) male, upper and middle class children; limited interest in the inner, lived experience of autism; and the predominance of a deficit-based model of autism. We report here on the first attempt of which we are aware to develop a clinical self-report measure of autistic traits as described by autistic people. We believe this is an advance in methodology because prior work in the development of autistic trait/diagnostic measures has prioritized the perspectives of nonautistic clinicians and scientists. The measure was developed under the leadership of two autistic researchers and constructed by leveraging descriptions of autism by autistic people to generate items designed to encompass the range of the autistic experience, using strength-based, accessible language. The team utilized iterative feedback from a panel of autistic experts to refine and enhance the measure, called the Self Assessment of Autistic Traits (SAAT). It is intended for people 16 years or older and uses a format that is designed to increase its accessibility and acceptability for autistic respondents. Future work will report on the preliminary psychometrics of the SAAT, with a long-term goal of advancing our understanding of the inner autistic experience and enhancing the clinical and scientific assessment of autism.

Why is this topic important?: Some people, especially older people, and those who can "mask" their autism, are missed by the current autism assessment tools. This can keep them from getting supports or getting connected to autistic communities. This can harm their well-being and independence. The tools we currently have to assess autism are important, but they were not developed with people who represent the full range of genders, ages, abilities, and cultural identities that characterize autism. Furthermore, current tools emphasize behaviors that other people observe, for example, making eye contact, and do not fully explore the lived or inner experience of autism. What is the purpose of this article?: This article describes the first attempt we know of to begin developing a self-report measure of autistic traits as described by autistic people. What did the authors do?: The authors started by reading what autistic people had to say about autism. They used those readings to come up with initial ideas about autistic experience. Then they used those ideas to write questions for a questionnaire about autistic traits. They asked autistic experts to review the questionnaire and made changes based on what they said. How did the authors work together?: This project was led by two autistic researchers who worked with a team of nonautistic researchers experienced in different research methods. A panel of autistic experts, including both autistic scientist and community leaders, also provided important input. Some of those methods were community-based research, Delphi panels, cognitive interviewing, and measure development. The research team made decisions together. The autistic researchers made the final decisions if there was disagreement. What did they produce?: They produced a preliminary version of the Self Assessment of Autistic Traits (SAAT). The SAAT is a questionnaire that asks if a person has common autistic experiences and traits. It has 58 items that are written with the aim of being respectful and using accessible language. The questionnaire is designed to work with common autistic thinking styles. How will this help autistic adults now or in the future?: The long-term goal is to create a reliable and valid self-report questionnaire that people 16 years old and older can complete to measure their autistic traits. We believe that this could be an important tool for advancing our understanding of the inner autistic experience of autism. This could improve how we assess autistic adults and how we research and think about autism.

The Gender-Diversity and Autism Questionnaire: A Community-Developed Clinical, Research, and Self-Advocacy Tool for Autistic Transgender and Gender-Diverse Young Adults.

Background: Autistic transgender people face unique risks in society, including inequities in accessing needed care and related mental health disparities. Given the need for specific and culturally responsive accommodations/supports, the characterization of key experiences, challenges, needs, and resilience factors within this population is imperative. This study developed a structured self-report tool for autistic transgender young adults to communicate their experiences and needs in a report format attuned to common autistic thinking and communication styles. Methods: This cross-nation project developed and refined the Gender-Diversity and Autism Questionnaire through an iterative community-based approach using Delphi panel methodology. This proof-of-principle project defined "expertise" broadly, employing a multi-input expert search approach to balance academic-, community-, and lived experience-based expertise. Results: The expert collaborators (N = 24 respondents) completed a two-round Delphi study, which developed 85 mostly closed-ended items based on 90% consensus. Final item content falls within six topic areas: the experience of identities; the impact of experienced or anticipated discrimination, bias, and violence toward autistic people and transgender people; tasks and experiences of everyday life; gender diversity- or autism-related care needs and history; the experience of others doubting an individual's gender identity and/or autism; and the experience of community and connectedness. The majority of retained items relate to tasks and experiences of everyday life or the impact of experienced or anticipated discrimination, bias, and violence. Conclusions: This study employed a multipronged multimodal search approach to maximize equity in representation of the expert measure development team. The resulting instrument, designed for clinical, research, and self-advocacy applications, has parallel Dutch and English versions and is available for immediate use. Future cross-cultural research with this instrument could help identify contextual risk and resilience factors to better understand and address inequities faced by this large intersectional population.

Why is this an important issue?: Transgender and gender-diverse are words used to describe people whose gender varies from their assigned sex at birth. Many autistic people identify as being transgender/gender-diverse. Autistic gender-diverse/transgender young adults often describe difficulties getting the care they need, which can increase their chances of experiencing stress and mental health challenges. This study created a self-report questionnaire for autistic transgender/gender-diverse young adults to share about their health care, support needs, and broader experiences. What were the results of the study?: A diverse group of experts in the autism and gender diversity co-occurrence, including autistic transgender people, worked together to develop the questionnaire. The researchers found experts by searching the internet and talking to people in the community and research field. The questionnaire is called the Gender-Diversity and Autism Questionnaire and has 85 questions that are grouped into 6 different areas: the experience of identities; the impact of experienced or anticipated discrimination, bias, and violence toward autistic people and transgender people; tasks and experiences of everyday life; gender diversity- or autism-related care needs and history; the experience of others doubting an individual's gender identity and/or autism; and the experience of community and connectedness. The questionnaire has English and Dutch versions so it can be used for research in different countries. What do the authors recommend for future research on this topic?: Researchers are currently using the new questionnaire to compare the experiences and needs of autistic transgender young adults in the Netherlands and the United States. The results may help explain why some outcomes are different between autistic transgender young people in the two countries and how culture and society play a role. How will these findings help autistic adults now or in the future?: We created the questionnaire to be used in different settings, including clinics and in research. The questionnaire gives autistic transgender young adults a structured way to communicate their experiences, needs, challenges, and areas of strength. The answers that an autistic transgender young adult gives on the questionnaire could help other people understand the clinical and community supports that the young adult wants and needs. Future studies may use the questionnaire to understand obstacles that autistic transgender young adults may face.

Peer support in patients with hematologic malignancies undergoing hematopoietic stem cell transplantation (HSCT): a qualitative study.

Peer support, a distinctive form of social support in which patients share emotional, social, and practical help based on their own lived experience of illness and treatment, positively impacts patient-reported outcomes in cancer populations. However, data on peer support experiences among hematopoietic stem cell transplant (HSCT) recipients are limited. We conducted semi-structured qualitative interviews among 12 allogeneic HSCT recipients who were ≤6 months post transplant without any complications and 13 allogeneic HSCT recipients >6 months post transplant and living with chronic graft-versus-host disease. Interviews explored patients' experiences with peer support and their preferences for a peer support intervention tailored to the needs of HSCT recipients. While the majority (70%) of participants reported no formal experience with peer support, most (83%) articulated themes of potential benefits of peer support (e.g., managing expectations and uncertainty that accompany HSCT). Most participants (60%) reported a preference for a peer support intervention prior to the HSCT hospitalization. Despite the limited data on peer support interventions among HSCT recipients and lack of formal peer support experience in most of our cohort, our study shows that HSCT recipients clearly acknowledge the potential benefits of a peer support intervention, and they prefer that it start prior to transplantation.