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The burden of OCD in children and adolescents extends to their caregivers. Prior work in other disorders and unaffected youth has found synchrony in psychophysiological arousal for youth-caregiver dyads. This preliminary study explored whether psychophysiological trend synchrony in youth-caregiver dyads (N = 48) occurred and was moderated by youth OCD diagnosis. We also explored whether psychophysiological indices (i.e., electrodermal activity, heart rate, respiratory sinus arrhythmia) were correlated with reported family functioning in the OCD subsample (n = 25). Youth with OCD had higher resting heart rate than unaffected peers; this was not replicated in caregivers. Trend synchrony was found across the full sample of dyads for electrodermal activity and heart rate, with no moderation by diagnostic group. In the OCD group, youth heart rate was correlated with family conflict and caregiver heart rate with expressiveness. Findings provide preliminary support for further examination of heart rate and family factors in OCD-affected youth and their caregivers.

BACKGROUND: Sharing outpatient notes with patients may bring clinically important benefits, but notes may sometimes cause patients to feel judged or offended, and thereby reduce trust. OBJECTIVE: As part of a larger survey examining the effects of open notes, we sought to understand how many patients feel judged or offended due to something they read in outpatient notes, and why. DESIGN: We analyzed responses from a large Internet survey of adult patients who used secure patient portals and had at least 1 visit note available in a 12-month period at 2 large academic medical systems in Boston and Seattle, and in a rural integrated health system in Pennsylvania. PARTICIPANTS: Adult ambulatory patients with portal accounts in health systems that offered open notes for up to 7 years. APPROACH: (1) Quantitative analysis of 2 dichotomous questions, and (2) qualitative thematic analysis of free-text responses on what patients found judgmental or offensive. KEY RESULTS: Among 22,959 patient respondents who had read at least one note and answered the 2 questions, 2,411 (10.5%) reported feeling judged and/or offended by something they read in their note(s). Patients who reported poor health, unemployment, or inability to work were more likely to feel judged or offended. Among the 2,411 patients who felt judged and/or offended, 2,137 (84.5%) wrote about what prompted their feelings. Three thematic domains emerged: (1) errors and surprises, (2) labeling, and (3) disrespect. CONCLUSIONS: One in 10 respondents reported feeling judged/offended by something they read in an outpatient note due to the perception that it contained errors, surprises, labeling, or evidence of disrespect. The content and tone may be particularly important to patients in poor health. Enhanced clinician awareness of the patient perspective may promote an improved medical lexicon, reduce the transmission of bias to other clinicians, and reinforce healing relationships.

The study objective was to perform a confirmatory factor analysis of the SLEEP-50 Questionnaire (SLEEP-50) in Trichotillomania (Hair-Pulling Disorder) and Excoriation (Skin-Picking) Disorder and compare sleep complaints in adults with Trichotillomania, Excoriation Disorder and non-affected controls. Participants were 234 adults with Trichotillomania, 170 with Excoriation Disorder, and 146 non-affected controls. Participants rated sleep using the SLEEP-50 and Pittsburgh Sleep Quality Index (PSQI). Confirmatory factor analysis was used to assess fit of the originally-proposed SLEEP-50 factors within Trichotillomania and Excoriation Disorder. Findings revealed acceptable to good fit of the original factors. Internal consistency was excellent in Trichotillomania and good in Excoriation Disorder for the total score and poor to good for subscales. Convergent validity was strong for the total and weak to strong for subscales in both groups. Findings suggest greater sleep complaints in Trichotillomania and Excoriation Disorder than in the general population. Trichotillomania and Excoriation Disorder groups reported greater rates of sleep apnea, narcolepsy, restless leg syndrome/periodic limb movement disorder, circadian rhythms sleep disorder, and sleep-related affective disorder relative to controls. There were no significant differences for insomnia, sleep state misperception, sleepwalking, nightmares, or hypersomnia. Results underscore the importance of clinical assessment of sleep disorders in Trichotillomania and Excoriation Disorder.

Childhood obsessive-compulsive disorder (OCD) is a heterogeneous, impairing psychiatric disorder that affects 1%–2% of children and adolescents. The suggested first-line treatment for pediatric OCD is exposure and response prevention (ERP), an exposure-based behavioral treatment that focuses on having the child confront the distressing situations and refrain from engaging in the related rituals. This chapter provides a general overview of pediatric OCD (e.g., incidence, phenomenology, etiology), followed by a structured breakdown of the various treatment components in a chronological fashion. Specifically, psychoeducation is presented first, followed by the instruction of coping skills, constructing a fear hierarchy, conducting exposures, and implementing relapse prevention/booster sessions. The chapter concludes with various factors that may complicate ERP for youth with OCD, coupled with ways to problem-solve emergent issues. Practical examples are interwoven throughout the chapter in order to illustrate the treatment in action, and family participation is heavily emphasized throughout treatment. Collectively, the content of this chapter is purposed to provide a basic introduction to ERP in a ready-to-use, practical fashion.

OBJECTIVE: This study examined the relationship between caregivers’ and youths’ treatment expectations and characteristics of exposure tasks (quantity, mastery, compliance) in cognitive-behavioral therapy (CBT) for childhood anxiety. Additionally, compliance with exposure tasks was tested as a mediator of the relationship between treatment expectations and symptom improvement. METHOD: Data were from youth (N= 279; 7–17 years old) enrolled in the Child/Adolescent Anxiety Multimodal Study (CAMS) and randomized to cognitive-behavioral therapy (CBT) or the combination of CBT and sertraline for the treatment of separation anxiety disorder, generalized anxiety disorder, and social phobia. Caregivers and youth independently reported treatment expectations prior to randomization, anxiety was assessed at pre- and post-treatment by independent evaluators blind to treatment condition, and exposure characteristics were recorded by the cognitive-behavioral therapists following each session. RESULTS: For both caregivers and youths, more positive expectations that anxiety would improve with treatment were associated with greater compliance with exposure tasks, and compliance mediated the relationship between treatment expectations and change in anxiety symptoms following treatment. Additionally, more positive parent treatment expectations were related to a greater number and percentage of sessions with exposure. More positive youth treatment expectations were associated with greater mastery during sessions focused on exposure. CONCLUSIONS: Findings underscore the importance of addressing parents’ and youths’ treatment expectations at the outset of therapy to facilitate engagement in exposure and maximization of therapeutic gains.

Objective This study examined predictors and moderators of treatment outcome in a randomized controlled trial (RCT) comparing two active interventions for pediatric obsessive compulsive disorder that differed with respect to the focus and format of family intervention. We had a particular interest in the role of race/ethnicity in shaping outcomes given our relatively diverse sample composition and the limited prior work in this area. Method A total of 62 youths (Mean age = 12.71 years; 57 % male; 34 % non-white) were assigned to either a standard cognitive behavioral therapy (CBT) family intervention (ST) or to a tailored intervention designed for cases of OCD complicated by poor family functioning (Enhanced Family Therapy; ET). Treatment in both arms involved 12 sessions of exposure therapy; the family interventions differed. Predictor and moderator variables were chosen based on the extant literature. Results Minority status did not predict outcome, suggesting that overall, white and non-white youth had comparable treatment response. Race/ethnicity did, however, moderate response with non-white youth faring better in the ET arm of the study. In particular, minority youth in ET had, on average, post-treatment CYBOCS scores consistent with clinical remission whereas their ST counterparts were left with symptoms considered moderately severe. There were no predictors of treatment outcome. Conclusions Minority status predicts poorer response to standard CBT across disorders, suggesting the need for possible treatment adaptations. The present findings highlight one avenue for matching patients to treatments that might optimize outcomes and underscore the value of family involvement in OCD treatment.

Background Following a 2010-2011 pilot intervention in which a limited sample of primary care doctors offered their patients secure Web-based portal access to their office visit notes, the participating sites expanded OpenNotes to nearly all clinicians in primary care, medical, and surgical specialty practices. Objective The aim of this study was to examine the ongoing experiences and perceptions of patients who read ambulatory visit notes written by a broad range of doctors, nurses, and other clinicians. Methods A total of 3 large US health systems in Boston, Seattle, and rural Pennsylvania conducted a Web-based survey of adult patients who used portal accounts and had at least 1 visit note available in a recent 12-month period. The main outcome measures included patient-reported behaviors and their perceptions concerning benefits versus risks. Results Among 136,815 patients who received invitations, 21.68% (29,656/136,815) responded. Of the 28,782 patient respondents, 62.82% (18,081/28,782) were female, 72.90% (20,982/28,782) were aged 45 years or older, 76.94% (22,146/28,782) were white, and 14.30% (4115/28,782) reported fair or poor health. Among the 22,947 who reported reading 1 or more notes, 3 out of 4 reported reading them for 1 year or longer, half reported reading at least 4 notes, and 37.74% (8588/22,753) shared a note with someone else. Patients rated note reading as very important for helping take care of their health (16,354/22,520, 72.62%), feeling in control of their care (15,726/22,515, 69.85%), and remembering the plan of care (14,821/22,516, 65.82%). Few were very confused (737/22,304, 3.3%) or more worried (1078/22,303, 4.83%) after reading notes. About a third reported being encouraged by their clinicians to read notes and a third told their clinicians they had read them. Less educated, nonwhite, older, and Hispanic patients, and individuals who usually did not speak English at home, were those most likely to report major benefits from note reading. Nearly all respondents (22,593/22,947, 98.46%) thought Web-based access to visit notes a good idea, and 62.38% (13,427/21,525) rated this practice as very important for choosing a future provider. Conclusions In this first large-scale survey of patient experiences with a broad range of clinicians working in practices in which shared notes are well established, patients find note reading very important for their health management and share their notes frequently with others. Patients are rarely troubled by what they read, and those traditionally underserved in the United States report particular benefit. However, fewer than half of clinicians and patients actively address their shared notes during visits. As the practice continues to spread rapidly in the United States and internationally, our findings indicate that OpenNotes brings benefits to patients that largely outweigh the risks.

BACKGROUND Following a 2010-2011 pilot intervention in which a limited sample of primary care doctors offered their patients secure Web-based portal access to their office visit notes, the participating sites expanded OpenNotes to nearly all clinicians in primary care, medical, and surgical specialty practices. OBJECTIVE The aim of this study was to examine the ongoing experiences and perceptions of patients who read ambulatory visit notes written by a broad range of doctors, nurses, and other clinicians. METHODS A total of 3 large US health systems in Boston, Seattle, and rural Pennsylvania conducted a Web-based survey of adult patients who used portal accounts and had at least 1 visit note available in a recent 12-month period. The main outcome measures included patient-reported behaviors and their perceptions concerning benefits versus risks. RESULTS Among 136,815 patients who received invitations, 21.68% (29,656/136,815) responded. Of the 28,782 patient respondents, 62.82% (18,081/28,782) were female, 72.90% (20,982/28,782) were aged 45 years or older, 76.94% (22,146/28,782) were white, and 14.30% (4115/28,782) reported fair or poor health. Among the 22,947 who reported reading 1 or more notes, 3 out of 4 reported reading them for 1 year or longer, half reported reading at least 4 notes, and 37.74% (8588/22,753) shared a note with someone else. Patients rated note reading as very important for helping take care of their health (16,354/22,520, 72.62%), feeling in control of their care (15,726/22,515, 69.85%), and remembering the plan of care (14,821/22,516, 65.82%). Few were very confused (737/22,304, 3.3%) or more worried (1078/22,303, 4.83%) after reading notes. About a third reported being encouraged by their clinicians to read notes and a third told their clinicians they had read them. Less educated, nonwhite, older, and Hispanic patients, and individuals who usually did not speak English at home, were those most likely to report major benefits from note reading. Nearly all respondents (22,593/22,947, 98.46%) thought Web-based access to visit notes a good idea, and 62.38% (13,427/21,525) rated this practice as very important for choosing a future provider. CONCLUSIONS In this first large-scale survey of patient experiences with a broad range of clinicians working in practices in which shared notes are well established, patients find note reading very important for their health management and share their notes frequently with others. Patients are rarely troubled by what they read, and those traditionally underserved in the United States report particular benefit. However, fewer than half of clinicians and patients actively address their shared notes during visits. As the practice continues to spread rapidly in the United States and internationally, our findings indicate that OpenNotes brings benefits to patients that largely outweigh the risks.

Background Little is known about the neural underpinnings of pediatric trichotillomania (TTM). We examined error-related negativity (ERN)-amplitude and theta-EEG power differences among youth with TTM, OCD, and healthy controls (HC). Methods Forty channel EEG was recorded from 63 pediatric participants (22 with TTM, 22 with OCD, and 19 HC) during the Eriksen Flanker Task. EEG data from inhibitory control were used to derive estimates of ERN amplitude and event-related spectral power associated with motor inhibition. Results TTM and HC were similar in brain activity patterns in frontal and central regions and TTM and OCD were similar in the parietal region. Frontal ERN-amplitude was significantly larger in OCD relative to TTM and HC, who did not differ from each other. The TTM group had higher theta power compared to OCD in frontal and central regions, and higher theta than both comparison groups in right motor cortex and superior parietal regions. Within TTM, flanker task performance was correlated with EEG activity in frontal, central, and motor cortices whereas global functioning and impairment were associated with EEG power in bilateral motor and parietal cortices. Conclusions Findings are discussed in terms of shared and unique neural mechanisms in TTM and OCD and treatment implications.