Resilience and coping: a qualitative analysis of cognitive and behavioral factors in adults with osteogenesis Imperfecta.

PURPOSE: The aim of this qualitative study was to investigate resilience among adults with Osteogenesis Imperfecta (OI). MATERIALS AND METHODS: Semi-structured interviews were conducted with 15 adults with OI. Transcripts were coded and subsequently abstracted, yielding themes specific to resilience and coping. Interview guides covered broad topics including pain challenges specific to OI, mental health issues related to OI, and priorities for future interventions for individuals with OI. RESULTS: Participants described resilience in the context of OI as the ability to grow from adversity, adapt to challenges resulting from OI-related injuries, and find identities apart from their condition. Psychological coping strategies included acceptance, self-efficacy, cognitive reframing, perspective-taking, and positivity. Behavioral factors that helped participants develop resilience included developing new skills, pursuing meaningful goals, practicing spirituality, and seeking external resources such as psychotherapy, education, and connection with community. CONCLUSION: Having identified how adults with OI define resilience and the strategies they use to cope, we can now develop interventions and guide healthcare providers in improving psychological wellbeing in this population.

Adults with Osteogenesis Imperfecta (OI) employ resilience factors to combat mobility and pain-related issues.Adults with OI report developing adaptive skills to cope with their disease, including forming one's identity outside of OI, growing through adversity, overcoming challenges resulting from OI-related injury, employing psychological adaptations, and practicing behavioral coping strategies.Resiliency factors such as behavioral and psychological coping (e.g., exercise, breathing strategies, acceptance) may buffer against OI-related challenges, and treatment modalities that foster these activities may be beneficial for adults with OI.

Obsessive-compulsive disorder among individuals of Hispanic and Latin American ancestry: Cultural considerations for assessment and psychotherapy.

Research specific to obsessive-compulsive disorder (OCD) among individuals of Hispanic and Latin American (H/L) ancestry is limited, as are culturally relevant assessment and treatment recommendations. This article discusses the implications of underrepresentation of H/L populations in OCD research and emphasizes the need to consider issues related to assessment, treatment, and structural barriers that hinder delivery of culturally appropriate first-line psychotherapy. Recommendations for assessment and treatment are provided to aid clinicians in distinguishing culturally normative thoughts and behaviors from OCD, as well as to inform the implementation of psychotherapeutic interventions with cultural humility. This manuscript offers recommendations for future research to tackle health equity concerns with respect to assessment and treatment and structural factors limiting access to culturally appropriate psychotherapy. Wide-scale efforts are needed to comprehensively understand how H/L cultures intersect with various OCD presentations and to further disseminate treatments to populations that have historically lacked access to mental health care.

Cognitive Behavioral Therapy for Anxiety and Depression in Children and Adolescents.

Anxiety and depression are prevalent and impairing psychiatric problems for children and adolescents. In this review, the authors summarize information about their prevalence and impact, the most common assessment methods, the main components of cognitive behavioral therapy (CBT), and research on the effectiveness of CBT for these disorders. Future directions, including improving access to CBT through technology-based approaches and increasing personalization of treatment, are discussed.

Parental Descriptions of Childhood Avoidance Symptoms after Trauma.

Recognizing and diagnosing the avoidance symptom cluster of posttraumatic stress disorder (PTSD) in young children has been challenging. This study examines caregivers' descriptions of young children's avoidance reactions. By describing parents' examples of childhood avoidance, clinicians, researchers, and educators may be able to provide more specific psychoeducation which may improve identification of avoidance behaviors in young children. Caregivers (N=73) of young children (age 3-7 years) participated in a semi-structured diagnostic clinical interview prior to enrolling in a clinical trial for childhood trauma. The assessment regarding the caregiver's description of the child's avoidance was audio recorded and transcribed for a thematic analysis. Most caregivers reported that the child experienced avoidance. Avoidance of conversation and places were the most reported type of child avoidance. Other types of avoidance included avoiding people, things, interpersonal situations, and activities. Some caregivers thought that their child avoided thoughts and feelings, but other caregivers were unsure if their child was avoiding these types of private experiences. Caregiver avoidance and non-avoidance also emerged as a main theme. Diagnosis for PTSD in young children relies on accurate symptom identification. Current results provide insight into how caregivers describe avoidant reactions in their children which may help professionals with accurate diagnoses, as well as help caregivers become better reporters themselves.

Study protocol for measuring stigmatization in persistent tic disorders: development and validation of the Tourette discrimination-stigmatization scale.

Introduction: Persistent Tic Disorders such as Tourette Syndrome are common neurodevelopmental disorders that are highly stigmatized. Many individuals with Persistent Tic Disorders experience peer rejection, loneliness, and self-stigma. Experiencing stigmatization during childhood can influence the persistence of moderate-to-severe tics later in life. Additionally, these factors have been associated with increased suicidal ideation, suicide attempts, and psychiatric symptom severity. There is a need for interventions to reduce stigma and stigmatization in Persistent Tic Disorders. Before developing cost-effective interventions to mitigate stigma's profound downstream health impacts, a reliable measure of stigmatization must be created. The overarching goal of this research is to develop and validate the Tourette Discrimination-Stigmatization (TD-STIGMA) Scale. Methods: This paper presents the study protocol for developing and validating the TD-STIGMA Scale. The study is designed as a mixed methods study to develop the TD-STIGMA scale and evaluate its psychometric properties. The study uses a phased approach: (1) collection of narrative and thematic content data through in-depth qualitative interviews of stakeholders, (2) development of a novel TD-STIGMA self-report scale using the Delphi Method based on these results, and (3) completion of analyses to determine the scale's psychometric properties (confirmatory factor analysis, convergent, known-group, criterion validity, and test-retest reliability). Discussion: This project will result in a personalized approach to stigma measurement about youth and young adults with Persistent Tic Disorders, which to date does not exist. There are several limitations. Comorbidities or spiritual or cultural beliefs may affect perceptions of stigma and are not directly assessed in this study. We will utilize institutional resources for community outreach to purposefully sample underrepresented minorities who may be at disproportionate risk of adverse outcomes. However, this may not be fully representative of the generalized tic population. The study team will be purposeful in maintaining participant engagement for study retention. Lastly, participants from a tertiary referral center may not fully represent the generalized tic community. However, we hope our broad recruitment strategy and virtual study visits will facilitate a diverse and inclusive sampling of the patient population.

Adolescent OCD Patient and Caregiver Perspectives on Identity, Authenticity, and Normalcy in Potential Deep Brain Stimulation Treatment.

The ongoing debate within neuroethics concerning the degree to which neuromodulation such as deep brain stimulation (DBS) changes the personality, identity, and agency (PIA) of patients has paid relatively little attention to the perspectives of prospective patients. Even less attention has been given to pediatric populations. To understand patients' views about identity changes due to DBS in obsessive-compulsive disorder (OCD), the authors conducted and analyzed semistructured interviews with adolescent patients with OCD and their parents/caregivers. Patients were asked about projected impacts to PIA generally due to DBS. All patient respondents and half of caregivers reported that DBS would impact patient self-identity in significant ways. For example, many patients expressed how DBS could positively impact identity by allowing them to explore their identities free from OCD. Others voiced concerns that DBS-related resolution of OCD might negatively impact patient agency and authenticity. Half of patients expressed that DBS may positively facilitate social access through relieving symptoms, while half indicated that DBS could increase social stigma. These views give insights into how to approach decision-making and informed consent if DBS for OCD becomes available for adolescents. They also offer insights into adolescent experiences of disability identity and "normalcy" in the context of OCD.

The Impact of Cognitive Behavioral Therapy on Sleep Problems in Autistic Children with Co-occurring Anxiety.

PURPOSE: This study seeks to examine the relationship between anxiety-symptom severity and sleep behaviors in autistic children receiving cognitive behavioral therapy (CBT). METHODS: We conducted a secondary-data analysis from a sample of 93 autistic youth, 4 to 14 years, participating in 24 weeks of CBT. Clinicians completed the Pediatric Anxiety Rating Scale (PARS) and parents completed the Children's Sleep Habits Questionnaire, Abbreviated/Short Form (CSHQ-SF) at baseline, mid-treatment, post-treatment and 3 months post-treatment. Mediation analysis evaluated the role of anxiety symptoms in mediating the effect of time in treatment on sleep. RESULTS: There was a negative association between time in treatment and scores on the CSHQ-SF (b = - 3.23, SE = 0.493, t = - 6.553, p < 0.001). Increased time in treatment was associated with decreased anxiety (b = - 4.66, SE = 0.405, t = - 11.507, p < 0.001), and anxiety symptoms decreased with CSHQ-SF scores (b = 0.322, SE = 0.112, t = 2.869, p = 0.005). The indirect effect of time in treatment on CSHQ-SF scores through PARS reduction was negative, but not statistically significant. CONCLUSION: Increased time in CBT was associated with decreased anxiety severity and improved sleep behaviors. Reductions in anxiety symptoms may mediate improvements in sleep problems, but larger sample sizes are necessary to explore this further.

An evaluation of treatment response and remission definitions in adult obsessive-compulsive disorder: A systematic review and individual-patient data meta-analysis.

INTRODUCTION: Expert consensus operationalized treatment response and remission in obsessive-compulsive disorder (OCD) as a Yale-Brown Obsessive-Compulsive Scale (Y-BOCS) reduction ≥35% and score ≤12 with ≤2 on Clinical Global Impressions Improvement (CGI-I) and Severity (CGI-S) scales, respectively. However, there has been scant empirical evidence supporting these definitions. METHODS: We conducted a systematic review and an individual participant data meta-analysis of randomized-controlled trials (RCTs) in adults with OCD to determine optimal Y-BOCS thresholds for response and remission. We estimated pooled sensitivity/specificity for each percent reduction threshold (response) or posttreatment score (remission) to determine response and remission defined by a CGI-I and CGI-S ≤ 2, respectively. RESULTS: Individual participant data from 25 of 94 eligible RCTs (1235 participants) were included. The optimal threshold for response was ≥30% Y-BOCS reduction and for remission was ≤15 posttreatment Y-BOCS. However, differences in sensitivity and specificity between the optimal and nearby thresholds for response and remission were small with some uncertainty demonstrated by the confidence ellipses. CONCLUSION: While the empirically derived Y-BOCS thresholds in our meta-analysis differ from expert consensus, given the predominance of data from more recent trials of OCD, which involved more refractory participants and novel treatment modalities as opposed to first-line therapies, we recommend the continued use of the consensus definitions.

Parent-Led Cognitive Behavioral Teletherapy for Anxiety in Autistic Youth: A Randomized Trial Comparing Two Levels of Therapist Support.

Parent-led cognitive behavioral therapy (CBT) is an efficient, promising form of therapy that may be well suited for autistic youth with anxiety disorders, though to date it has been minimally tested. In this study, 87 autistic youth (7 to 13 years old) with anxiety disorders and their parents were randomized to two forms of parent-led CBT in which parents led their child through a guided CBT workbook across 12 weeks: one with low therapist contact (four 30-minute telehealth calls), and one with standard therapist contact (ten 60-minute telehealth calls). Anxiety, functional impairment, and autism features significantly declined across therapy, without differences between groups. High satisfaction was reported in both groups, though significantly higher satisfaction ratings were reported in standard-contact CBT. Responder rates were 69% of completers at posttreatment (70% in standard contact, 68% in low contact) and 86% at 3-month follow-up (86% in standard contact, 87% in low contact). Low-contact CBT was estimated to incur an average cost of $755.70 per family compared with $1,978.34 in standard-contact CBT. Parent-led CBT with minimal or standard therapist contact both appear to be effective CBT delivery formats for autistic youth with anxiety disorders, with significant cost savings for low-contact CBT.

Family Accommodation in Children and Adolescents With Misophonia.

Family accommodation (e.g., reassurance, modifying routines, assisting avoidance) has not been explored among youth with misophonia but may have important clinical and intervention implications. We examined family accommodation in 102 children and adolescents with interview-confirmed misophonia and compared its frequency and content to family accommodation in 95 children and adolescents with anxiety disorders. Findings showed that family accommodation was ubiquitous in pediatric misophonia and may be even more frequent than in youth with anxiety disorders. Assisting the child, participating in misophonia-related behaviors, and modifying family routines were endorsed by more than 70% of parents of children with misophonia. Further, compared to parents of children with anxiety disorders, parents of children with misophonia more frequently reported child distress and anger when they did not accommodate. Family accommodation was moderately to strongly associated with misophonia severity even when accounting for co-occurring internalizing and externalizing symptoms and sociodemographic factors. This first study of family accommodation in pediatric misophonia suggests accommodation may be an important clinical feature. A notable study limitation is that the measure of misophonia did not delineate between adaptive versus maladaptive accommodations. Excessive and maladaptive accommodation may be one potential candidate to target in interventions when considered within a broader treatment plan. Importantly, adaptive accommodations should also be considered in day-to-day management if they improve functioning and quality of life.

Exploring latent clusters in pediatric OCD based on symptoms, severity, age, gender, and comorbidity.

Given diverse symptom expression and high rates of comorbid conditions, the present study explored underlying commonalities among OCD-affected children and adolescents to better conceptualize disorder presentation and associated features. Data from 830 OCD-affected participants presenting to OCD specialty centers was aggregated. Dependent mixture modeling was used to examine latent clusters based on their age- and gender adjusted symptom severity (as measured by the Children's Yale-Brown Obsessive-Compulsive Scale; CY-BOCS), symptom type (as measured by factor scores calculated from the CY-BOCS symptom checklist), and comorbid diagnoses (as assessed via diagnostic interviews). Fit statistics favored a four-cluster model with groups distinguished primarily by symptom expression and comorbidity type. Fit indices for 3-7 cluster models were only marginally different and characteristics of the clusters remained largely stable between solutions with small clusters of distinct presentations added in more complex models. Rather than identifying a single classification system, the findings support the utility of integrating dimensional, developmental, and transdiagnostic information in the conceptualization of OCD-affected children and adolescents. Identified clusters point to the centrality of contamination concerns to OCD, relationships between broader symptom expression and higher levels of comorbidity, and the potential for complex/neurodevelopmental presentations.

Perceived worsening of obsessive-compulsive disorder symptoms after childbirth in women and men: An understudied phenomenon.

The aim of this study was to examine worsening of OCD symptoms after childbirth in individuals seeking assessment or treatment of OCD. The postpartum period may make parents biologically and psychologically vulnerable to OCD symptoms. Participants included 222 parents with OCD who completed surveys through a self-help website. Most women and almost half of men with self-reported OCD reported an increase in OCD symptoms following childbirth. Retrospective report of perceived worsening of OCD symptoms after childbirth was associated with more aggressive obsessions for both men and women, in comparison to individuals whose OCD symptoms did not worsen around childbirth. Women whose OCD symptoms worsened after childbirth reported more impairment in social functioning than individuals whose symptoms did not worsen. These results highlight the need to develop a better understanding of aggressive obsessions in parents, and improve education about prevalence, content, assessment, and intervention for aggression-focused intrusive thoughts.

Co-occurring PTSD in intensive OCD treatment: Impact on treatment trajectory vs. response.

BACKGROUND: Obsessive-compulsive disorder (OCD) and co-occurring posttraumatic stress disorder (PTSD) is associated with more severe and chronic OCD. However, findings regarding treatment effectiveness of cognitive behavioral treatment (CBT) with exposure and response prevention (ERP) with this comorbidity are mixed. Research aimed at understanding the precise barriers to OCD treatment effectiveness for individuals with co-occurring PTSD may help elucidate unique treatment needs. METHODS: The current study used linear regression and latent growth curve analysis comparing treatment response and trajectory from patients with OCD (n = 3083, 94.2 %) and OCD + PTSD (n = 191, 5.2 %) who received CBT with ERP in two major intensive OCD treatment programs. RESULTS: Although patients with OCD + PTSD evidenced similar trajectories of overall severity change, patients at one site required nearly 11 additional treatment days to achieve comparable reduction in OCD severity. Further, at the dimensional level, those with OCD + PTSD had poorer treatment response for unacceptable thoughts and symmetry symptoms. The moderate effect for unacceptable thoughts, indicating the widest gap in treatment response, suggests these symptoms may be particularly relevant to PTSD. LIMITATIONS: Findings are limited by a naturalistic treatment sample with variation in treatment provision. CONCLUSIONS: Findings emphasize caution in using a one-size-fits-all approach for patients with co-occurring OCD + PTSD within intensive OCD treatment programs, as broadly defined outcomes (e.g., reduction in overall severity) may not translate to reduction in the nuanced symptom dimensions likely to intersect with trauma. Unacceptable thoughts and symmetry symptoms, when co-occurring with PTSD, may require a trauma-focused treatment approach within intensive OCD treatment.

Ethical considerations for integrating multimodal computer perception and neurotechnology.

Background: Artificial intelligence (AI)-based computer perception technologies (e.g., digital phenotyping and affective computing) promise to transform clinical approaches to personalized care in psychiatry and beyond by offering more objective measures of emotional states and behavior, enabling precision treatment, diagnosis, and symptom monitoring. At the same time, passive and continuous nature by which they often collect data from patients in non-clinical settings raises ethical issues related to privacy and self-determination. Little is known about how such concerns may be exacerbated by the integration of neural data, as parallel advances in computer perception, AI, and neurotechnology enable new insights into subjective states. Here, we present findings from a multi-site NCATS-funded study of ethical considerations for translating computer perception into clinical care and contextualize them within the neuroethics and neurorights literatures. Methods: We conducted qualitative interviews with patients (n = 20), caregivers (n = 20), clinicians (n = 12), developers (n = 12), and clinician developers (n = 2) regarding their perspective toward using PC in clinical care. Transcripts were analyzed in MAXQDA using Thematic Content Analysis. Results: Stakeholder groups voiced concerns related to (1) perceived invasiveness of passive and continuous data collection in private settings; (2) data protection and security and the potential for negative downstream/future impacts on patients of unintended disclosure; and (3) ethical issues related to patients' limited versus hyper awareness of passive and continuous data collection and monitoring. Clinicians and developers highlighted that these concerns may be exacerbated by the integration of neural data with other computer perception data. Discussion: Our findings suggest that the integration of neurotechnologies with existing computer perception technologies raises novel concerns around dignity-related and other harms (e.g., stigma, discrimination) that stem from data security threats and the growing potential for reidentification of sensitive data. Further, our findings suggest that patients' awareness and preoccupation with feeling monitored via computer sensors ranges from hypo- to hyper-awareness, with either extreme accompanied by ethical concerns (consent vs. anxiety and preoccupation). These results highlight the need for systematic research into how best to implement these technologies into clinical care in ways that reduce disruption, maximize patient benefits, and mitigate long-term risks associated with the passive collection of sensitive emotional, behavioral and neural data.

Editorial: The Durable Long-Term Benefits of Evidence-Based Care for Children and Adolescents With Obsessive-Compulsive Disorder.

Pediatric obsessive-compulsive disorder (OCD) can be enormously taxing for affected youth and their families; the distress, impairment, and family upheaval that it brings are well documented.1 Both exposure-based cognitive-behavioral therapy (CBT) and pharmacological interventions are efficacious for reducing symptoms and functional impairment, producing mean effect sizes of g = 1.21 and g = 0.50 respectively.2 These treatments-whether administered alone or in combination-form the backbone of our current suite of interventions. They have helped countless young people to restore functioning and lead healthy, productive lives. Despite this encouraging picture, long-term outcomes for children and adolescents with OCD remain poorly understood. Even for youth who receive high-quality evidence-based care, it is unclear what to expect down the road, and this gap in understanding creates challenges for clinical decision making as well as angst for parents who, quite understandably, want to know what the future holds for their children. Although CBT often is recommended as the frontline intervention for pediatric OCD3 and parents routinely report preferring to begin with nonmedication options,4 data to help patients and families make fully informed treatment decisions are scarce. Most would like to know the long-term outcomes associated with various treatment options, and this is a challenge given that the typical length of follow-up in CBT trials for pediatric OCD is 3 to 6 months-well short of a typical school year. The study by Ivarsson et al.5 is therefore a much-needed advance for the field, offering a first view of long-term outcomes for youth with OCD treated with evidence-based treatments.

Characterizing Measurement-Based Care in the Texas Youth Depression and Suicide Research Network (TX-YDSRN).

Integration of measurement-based care (MBC) into clinical practice has shown promise in improving treatment outcomes for depression. Yet, without a gold standard measure of MBC, assessing fidelity to the MBC model across various clinical settings is difficult. A central goal of the Texas Youth Depression and Suicide Research Network (TX-YDSRN) was to characterize MBC across the state of Texas through the development of a standardized tool to assess the use of MBC strategies when assessing depression, anxiety, side effects, and treatment adherence. A chart review of clinical visits indicated standardized depression measures (71.2%) and anxiety measures (64%) were being utilized across sites. The use of standardized measures to assess medication adherence and side effects was limited to less than six percent for both, with the majority utilizing clinical interviews to assess adherence and side effects; yet medication was changed in nearly half. Rates of utilization of standardized measures for participants with multiple MBC forms were similar to those who only provided one form.

Efficacy and acceptability of cognitive-behavioral therapy and serotonin reuptake inhibitors for pediatric obsessive-compulsive disorder: a network meta-analysis.

BACKGROUND: Cognitive-behavioral therapy (CBT) and serotonin reuptake inhibitors (SRIs) are recommended treatments for pediatric obsessive-compulsive disorder (OCD), but their relative efficacy and acceptability have not been comprehensively examined. Further, it remains unclear whether the efficacy of in-person CBT is conserved when delivered in other formats, such as over telephone/webcam or as Internet-delivered CBT (ICBT). METHODS: PubMed, PsycINFO, trial registries, and previous systematic reviews were searched for randomized controlled trials (RCTs) comparing CBT (in-person, webcam/telephone-delivered, or ICBT) or SRIs with control conditions or each other. Network meta-analyses were conducted to examine efficacy (post-treatment Children's Yale-Brown Obsessive Compulsive Scale) and acceptability (treatment discontinuation). Confidence in effect estimates was evaluated with CINeMA (Confidence in Network Meta-Analysis). RESULTS: Thirty eligible RCTs and 35 contrasts comprising 2,057 youth with OCD were identified. In-person CBT was significantly more efficacious than ICBT, waitlist, relaxation training, and pill placebo (MD range: 3.95-11.10; CINeMA estimate of confidence: moderate) but did not differ significantly from CBT delivered via webcam/telephone (MD: 0.85 [-2.51, 4.21]; moderate), SRIs (MD: 3.07 [-0.07, 6.20]; low), or the combination of in-person CBT and SRIs (MD: -1.20 [-5.29, 2.91]; low). SRIs were significantly more efficacious than pill placebo (MD: 4.59 [2.70, 6.48]; low) and waitlist (MD: 8.03 [4.24, 11.82]; moderate). No significant differences for acceptability emerged, but confidence in estimates was low. CONCLUSIONS: In-person CBT and SRIs produce clear benefits compared to waitlist and pill placebo and should be integral parts of the clinical management of pediatric OCD, with in-person CBT overall having a stronger evidence base. The combination of in-person CBT and SRIs may be most efficacious, but few studies hinder firm conclusions. The efficacy of CBT appears conserved when delivered via webcam/telephone, while more trials evaluating ICBT are needed.