“An Art, Not a Science” : how do experienced clinicians differentiate autism from psychiatric conditions in adult women?

Introduction. Les femmes autistes sans déficience intellectuelle ni retard du langage ont une meilleure motivation sociale et des capacités langagières plus typiques que leurs homologues masculins. Ceci pourrait expliquer le sous-diagnostic des femmes autistes. Paradoxalement, l’autisme pourrait être surdiagnostiqué chez des populations psychiatriques avec des difficultés sociales. En effet, les critères de diagnostic demeurent assez larges, et cette condition relativement moins stigmatisée que plusieurs troubles psychiatriques. Il existe peu de directives pour les cliniciens hésitant à attribuer les difficultés adaptatives des femmes à (1) de l’autisme, (2) une condition psychiatrique, ou (3) les deux. Les aspects qualitatifs de cette condition, absents des manuels de diagnostic, sont systématiquement identifiés par les cliniciens rompus à l’exercice du diagnostic de l’autisme. Ainsi, notre étude vise à mieux caractériser les difficultés liées à l’évaluation des femmes adultes pour un diagnostic d’autisme, ainsi que les traits, comportements et outils spécifiques utilisés pour différencier l’autisme de conditions psychiatriques. Méthodes. Des entretiens semi-dirigés ont été effectués avec 20 psychiatres et psychologues experts en diagnostic de l’autisme chez les femmes, dans 7 pays différents. La méthode Framework a permis de révéler des thèmes adressant nos objectifs de recherche. Résultats. Selon nos participants, les femmes autistes semblaient avoir appris certaines contingences sociales leur permettant de paraître plus typique, et la question du diagnostic différentiel se posait souvent. Les cliniciens effectuaient donc des entretiens flexibles et longs, et validaient les informations apportées par la personne. Plusieurs des traits cités comme indicatifs de l’autisme reflétaient une connaissance clinique de l’autisme. Le trauma, ainsi que le trouble de personnalité limite, étaient considérés comme particulièrement difficiles à départager de l’autisme. Conclusion. L’évaluation pour autisme chez les femmes adultes présente des problématiques particulières que les cliniciens adressent en utilisant des boites à outils individuelles. Chez cette population, une capacité à proposer des pistes alternatives chez les personnes non-autistes s’étant auto-identifiées au spectre est primordiale.Introduction. Autistic women present with greater social motivation and more typical language abilities than their male counterparts, leaving them vulnerable to misdiagnosis or late diagnosis. Paradoxically, there is concern about potential overdiagnosis of autism in psychiatric populations presenting with social difficulties, as diagnostic criteria remain relatively vague and autism less stigmatizing than many psychiatric conditions. Little guidance exists to guide clinicians when deciding whether to attribute adaptative difficulties in adult women to (1) autism, (2) a psychiatric condition, or (3) both. Research suggests that autism is best reliably identified by expert clinicians having been exposed to a high number of autism cases, who notice qualitative aspects of the condition not included in diagnostic manuals. Thus, we aimed to better characterize the difficulties faced by clinicians in assessing adult women for autism, and the traits, behaviors and tools used to differentiate between autism and psychiatric conditions. Methods. Semi-structured interviews were conducted with 20 psychiatrists and psychologists from 7 different countries, experienced in autism diagnosis of adult women. The Framework Method was used to reveal themes relevant to our research goals. Results. According to participants, autistic women had learned certain social contingencies allowing them to appear more typical, which made differential diagnosis a frequent question. Clinicians recommended long, flexible assessments, and validating the information volunteered by the person. Many traits cited as indicative of autism reflected a clinical knowledge of autism. Trauma and Borderline Personality Disorder were cited as particularly difficult to differentiate from autism. Conclusion. Evaluating for autism in adult women presents with singular challenges which clinicians address using individual toolboxes. In this population, it may be crucial to have the capacity to offer alternative avenues for non-autistic people having self-identified with the spectrum

Engaging Ethical Issues Associated with Research and Public Health Interventions During Humanitarian Crises: Review of a Dialogic Workshop

Compte-rendu / ReviewLe 7 novembre 2014, l’atelier intitulé Humanitarian Health Ethics Workshop a été tenu à l’Université McGill, à Montréal. Hébergé conjointement par le Consortium de recherche sur l’équité en santé de Montréal et le Humanitarian Health Ethics Network, l’événement comprenait six présentations et une discussion extensive entre les participants, incluant des chercheurs du Canada, de Haïti, de l’Inde, de la Suisse et des États-Unis. Les participants étaient de diverses disciplines, soit l’anthropologie, la bioéthique, la médecine, l’ergothérapie, la philosophie, la physiothérapie, les sciences politiques, l’administration et la santé publique. L’objectif de l’atelier était de créer un forum de discussion entre experts et praticiens qui s’intéressent à l’éthique dans la prestation de soins de santé, en recherche et dans les interventions de santé publique en cours de crise humanitaire. Ce compte rendu résume les présentations, les thèmes clés qui ont émergé des discussions de la journée et identifie des pistes de recherches futures.On November 7th, 2014 the Humanitarian Health Ethics Workshop was held at McGill University, in Montreal. Co-hosted by the Montreal Health Equity Research Consortium and the Humanitarian Health Ethics Network, the event included six presentations and extensive discussion amongst participants, including researchers from Canada, Haiti, India, Switzerland and the US. Participants had training in disciplines including anthropology, bioethics, medicine, occupational therapy, philosophy, physical therapy, political science, public administration and public health. The objective of the workshop was to create a forum for discussion amongst scholars and practitioners interested in the ethics of healthcare delivery, research and public health interventions during humanitarian crises. This review is a summary of the presentations given, key themes that emerged during the day’s discussions, and avenues for future research that were identified

What can we learn by including autistic people in the scientific process?

International audienc

Exploration of the French version of the Q-ASC: a tool for investigating the female autistic profile

International audienc

Factors associated with symptoms of depression among informal caregivers of people with systemic sclerosis:a cross-sectional study

Purpose: Our study aimed to identify caregiver characteristics (gender, age, occupational status, educational attainment, relation to care recipient), care recipient characteristics (age, disease subtype), and caregiving factors (hours of care, perceived caregiving burden) associated with symptoms of depression among informal caregivers of persons with systemic sclerosis (also known scleroderma). as Materials and methods: A questionnaire was developed and administered online from December 2016 to June 2017 to informal caregivers of people with scleroderma, including the Patient Health Questionnaire-9 to assess depressive symptoms. Multiple linear regression was used to identify factors associated with depressive symptoms. Results: Caregivers (n = 202) were 60.9% male. Average age was 57.2 years (standard deviation = 14.4 years). Most caregivers were partners (72.3%), children (11.9%), or parents (7.4%), of care recipients. Self-reported caregiving burden (standardized regression coefficient b = 0.54, p < 0.001) and hours of care per week ((Formula presented.) = 0.17, p = 0.005) were significantly associated with greater symptoms of depression. Conclusions: Depressive symptoms were primarily associated with caregiving burden among a sample of scleroderma caregivers. There is need to develop interventions targeting caregivers in scleroderma. Rehabilitation professionals should consider the specific needs of scleroderma caregivers and should provide or refer to support services as appropriate.Implications for Rehabilitation Most people diagnosed with scleroderma are cared for by an informal caregiver and the majority of these caregivers experience mild symptoms of depression. For caregivers that experience moderate to severe symptoms of depression, the ability to provide care to a loved one with scleroderma may be more difficult. Rehabilitation professionals should be aware of the burden faced by caregivers of persons with scleroderma and provide support services or referrals as appropriate

Challenges and support service preferences of informal caregivers of people with systemic sclerosis: a cross-sectional survey

PURPOSE: To evaluate the importance of different challenges experienced by informal caregivers to persons with systemic sclerosis (SSc) and identify priorities for support services that could be developed. MATERIALS AND METHODS: Caregivers of people with SSc from three continents completed an online questionnaire to rate the importance of possible caregiver challenges and likelihood of using different forms of support services. Importance of challenges and likelihood of using support services were rated from 1 (not important; not likely to use) to 4 (very important; very likely to use). RESULTS: Two hundred and two informal caregivers completed the survey (79 women, 123 men). Mean age was 58 years (standard deviation = 13). The most important challenges were related to supporting the care recipient with emotional difficulties and physical discomfort. Caregivers indicated that they would be more likely to use support services that involved online or hard-copy information resources, including those provided soon after diagnosis, compared to support that involved interacting with others. CONCLUSIONS: Supporting the care recipient in managing emotional difficulties and physical discomfort were important challenges among caregivers. Interventions delivered through hardcopy or online resources, including those delivered soon after the care recipient's diagnosis, were rated as being most likely to be used by caregivers. Implications for rehabilitation Many caregivers for individuals with systemic sclerosis report struggling to support their care recipient with emotional difficulties and physical discomfort. Rehabilitation professionals can aid in the development of support services that caregivers have identified as being likely to use and can refer caregivers to resources that they have identified as being helpful, such as educational information about the disease. The development of support services should focus on aspects of caring that caregivers found most challenging and be delivered in a format that considers caregiver preferences

Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network hand exercise program (SPIN-HAND)

Purpose: The Scleroderma Patient-centered Intervention Network (SPIN) online hand exercise program (SPIN-HAND), is an online self-help program of hand exercises designed to improve hand function for people with scleroderma. The objective of this feasibility trial was to evaluate aspects of feasibility for conducting a full-scale randomized controlled trial of the SPIN-HAND program. Materials and Methods: The feasibility trial was embedded in the SPIN cohort and utilized the cohort multiple randomized controlled trial (cmRCT) design. In the cmRCT design, at the time of cohort enrollment, cohort participants consent to be assessed for trial eligibility and randomized prior to being informed about trials conducted using the cohort. When trials were conducted in the cohort, participants randomized to the intervention were informed and consented to access the intervention. Participants randomized to control were not informed that they have not received an intervention. All participants eligible and randomized to participate in the trial were included in analyses on an intent-to-treat basis. Cohort participants with a Cochin Hand Function Scale score ≥ 3/90 and an interest in using an online hand-exercise intervention were randomized (1:1 ratio) to be offered as usual care plus the SPIN-HAND Program or usual care for 3 months. User satisfaction was assessed with semi-structured interviews. Results: Of the 40 randomized participants, 24 were allocated to SPIN-HAND and 16 to usual care. Of 24 participants randomized to be offered SPIN-HAND, 15 (63%) consented to use the program. Usage of SPIN-HAND content among the 15 participants who consented to use the program was low; only five (33%) logged in more than twice. Participants found the content relevant and easy to understand (satisfaction rating 8.5/10, N = 6). Automated eligibility and randomization procedures via the SPIN Cohort platform functioned properly. The required technical support was minimal. Conclusions: Trial methodology functioned as designed, and the SPIN-HAND Program was feasibly delivered; however, the acceptance of the offer and use of program content among accepters were low. Adjustments to information provided to potential participants will be implemented in the full-scale SPIN-HAND trial to attempt to increase offer acceptance

Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program

Background The Scleroderma Patient-centered Intervention Network (SPIN) developed an online self-management program (SPIN-SELF) designed to improve disease-management self-efficacy in people with systemic sclerosis (SSc, or scleroderma). The aim of this study was to evaluate feasibility aspects for conducting a full-scale randomized controlled trial (RCT) of the SPIN-SELF Program. Methods This feasibility trial was embedded in the SPIN Cohort and utilized the cohort multiple RCT design. In this design, at the time of cohort enrollment, cohort participants consent to be assessed for trial eligibility and randomized prior to being informed about the trial. Participants in the intervention arm are informed and provide consent, but not the control group. Forty English-speaking SPIN Cohort participants from Canada, the USA, or the UK with low disease-management self-efficacy (Self-Efficacy for Managing Chronic Disease Scale [SEMCD] score ≤ 7) who were interested in using an online self-management program were randomized (3:2 ratio) to be offered the SPIN-SELF Program or usual care for 3 months. Program usage was examined via automated usage logs. User satisfaction was assessed with semi-structured interviews. Trial personnel time requirements and implementation challenges were logged. Results Of 40 SPIN Cohort participants randomized, 26 were allocated to SPIN-SELF and 14 to usual care. Automated eligibility and randomization procedures via the SPIN Cohort platform functioned properly, except that two participants with SEMCD scores > 7 (scores of 7.2 and 7.3, respectively) were included, which was caused by a system programming error that rounded SEMCD scores. Of 26 SPIN Cohort participants offered the SPIN-SELF Program, only 9 (35%) consented to use the program. Usage logs showed that use of the SPIN-SELF Program was low: 2 of 9 users (22%) logged into the program only once (median = 3), and 4 of 9 (44%) accessed none or only 1 of the 9 program’s modules (median = 2). Conclusions The results of this study will lead to substantial changes for the planned full-scale RCT of the SPIN-SELF Program that we will incorporate into a planned additional feasibility trial with progression to a full-scale trial. These changes include transitioning to a conventional RCT design with pre-randomization consent and supplementing the online self-help with peer-facilitated videoconference-based groups to enhance engagement. Trial registration clinicaltrials.gov , NCT03914781 . Registered 16 April 2019.Medicine, Faculty ofNon UBCPsychiatry, Department ofReviewedFacultyResearcherOthe