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Objective: Individuals with sickle cell disease (SCD) are at increased risk for complications from their disease during their adolescent and young adult (AYA) years. The risk of morbidity in AYAs with SCD can be decreased with improved self-management. Existing self-management interventions typically focus on one aspect of self-management (e.g., adherence) and do not address factors that activate patients (knowledge, motivation, self-efficacy, and social support) to self-manage. Sickle Cell Thrive (SCThrive) is a mixed in-person/online, technology-enhanced (use of a mobile app), group self-management intervention that targets patient activation. To determine the most clinically significant intervention components, a qualitative study was conducted. Method: Participants were 19 AYAs (Mage = 17.05) with SCD who participated in individual semistructured phone interviews after completing SCThrive. Interview content was coded using a grounded-theory approach to generate themes related to SCThrive’s feasibility, acceptability, and motivation for and impact on self-management. Results: SCThrive was reported to be highly feasible due to the mixed in-person/online format and acceptable because they learned skills to manage SCD in a group of AYAs with SCD. Action planning and pain/mood tracking appeared to be key factors in motivating AYAs for self-management. Participants reported continuing to use self-management skills post-SCThrive (self-efficacy) including applying them to other domains of their lives (e.g., educational/vocational). Conclusions: Study results provide data that can be leveraged to enhance the feasibility, acceptability, and impact of SCThrive and other self-management interventions. Findings can also inform clinical and mobile health interventions to increase self-management in this population. (PsycInfo Database Record (c) 2021 APA, all rights reserved)

Although hydroxyurea (HU) is an effective treatment for sickle cell anemia, uptake remains low. Shared decision making (SDM) is a recommended strategy for HU initiation to elicit family preferences; however, clinicians lack SDM training. We implemented an immersive virtual reality (VR) curriculum at eight pediatric institutions to train clinicians on SDM that included counseling virtual patients. Clinicians’ self-reported confidence significantly improved following the VR simulations on all communication skills assessed, including asking open-ended questions, eliciting specific concerns, and confirming understanding (ps ≤ 0.01 for all). VR may be an effective method for educating clinicians to engage in SDM for HU.

There are many clinically effective outpatient psychosocial treatments for youth with mood disorders, and many of them include engaging caregivers in treatment. Despite the prevalence and severity ...

The assessment of mental health needs and access to appropriate interventions for parents and caregivers is one of 15 evidence-based standards for the psychosocial care of children with cancer and their families. The objectives of this paper are to describe one program's approach to meeting this standard in oncologic, hematologic, and immunologic populations and outline key ethical, regulatory, and logistical considerations in providing mental health services to caregivers in a pediatric medical setting. A description of the Caregiver Mental Health Program (CMHP) is provided along with a case example to illustrate key considerations, including multiple family members needing care, access to psychiatric services, scope of treatment, confidentiality and privacy, and logistics. Challenges in the development of the CMHP as well as the program’s benefits are discussed. Implementation of this standard of care will vary across institutions depending on various factors, such as staffing and programmatic resources and institutional culture.

Children who identify as Black or multiracial report significantly higher exposure to adverse childhood experiences, which places them at greater risk for poor mental and physical health outcomes. These disparities and increasing awareness of racism as an adverse childhood experience has resulted in the American Academy of Pediatrics, American Psychological Association, and other groups declaring racism a public health crisis. To provide high-quality care, providers who engage with patients and families impacted by systemic racism must be aware of its role in health disparities. This requires clinicians to have the knowledge and skills to discuss racism with colleagues, patients, and families. To promote clinicians’ competence to engage in these discussions, this article 1) sensitizes providers to historical and contextual factors that inform experiences with anti-Black racism and health disparities and 2) offers strategies to address anti-Black racism in clinical care.Embracing the process of brave, informed conversations about race represents a pathway for building trust between providers and patients, a key component of various health outcomes. Additionally, these foundational skills of reflection, cultural humility, and bias recognition will be needed to engage in allyship and advocacy both within and beyond the exam room.

Adolescents and young adults (AYA) with sickle cell disease (SCD) experience health challenges during the move from pediatric to adult care. Self-management (i.e., prioritizing and completing goals) and self-efficacy (i.e., confidence) are needed to manage a chronic disease effectively, but AYA with SCD often lack the skills. Mobile health (mHealth) technology (e.g., smartphones and tablets) present a way for AYA to monitor and track symptoms, change behaviors, and complete goals. We included a mHealth app into a group intervention (SCThrive) to see if using components of the app more frequently increased self-management and self-efficacy for AYA with SCD aged 13–21 years. We found that logging on to the app more often was related to better mood symptoms and lower pain ratings. AYA who logged onto the app more often reported more self-management skills and self-efficacy. Our findings indicate clinical benefits for those AYA with SCD who engaged with the mobile app., Sickle cell disease (SCD) is associated with significant health challenges that often worsen during adolescence. Living with SCD requires a substantial amount of self-management and mobile health (mHealth) holds considerable promise for assessing and changing behaviors to improve health outcomes. We integrated a mobile app as an adjunct to a group intervention (SCThrive) and hypothesized that more engagement with the mHealth app would increase self-management and self-efficacy for adolescents and young adults (AYA) with SCD. Twenty-six AYA ages 13–21 years (54% female; 46% HbSS genotype; all African-American/Black) received six weekly group sessions (three in-person, three online). Participants were provided with the mobile app (iManage for SCD) to record progress on their self-management goals and log pain and mood symptoms. The Transition Readiness Assessment Questionnaire (TRAQ-5) assessed self-management skills and the Patient Activation Measure (PAM-13) assessed self-efficacy at baseline and post-treatment. Logging on to the app more frequently was associated higher mood ratings (r = .54, CI[.18, .77], p = .006) and lower pain ratings (r = −.48, CI[−.77, −.02], p = .04). Regression analyses demonstrated that after controlling for scores at baseline, the number of logins to the app predicted self-management skills (p = .05, η2 = .17) and possibly self-efficacy (p = .08, η2 = .13). Our study findings indicate that it can be challenging to maintain engagement in mHealth for AYA with SCD, but for those who do engage, there are significant benefits related to self-management, self-efficacy, and managing pain and mood.

Objectives Intensive interdisciplinary treatment is emerging as an effective treatment of chronic pain in youth. These programs often include a parental component with the belief that targeting parental distress and responses to a child's pain will improve outcomes. However, few studies have evaluated the impact of a parental intervention in the interdisciplinary treatment of pediatric chronic pain. The present study consists of a nonrandomized pre-post design to evaluate change in psychological and behavioral functioning of parents who participated in intensive parent programming that utilized cognitive-behavioral therapy and acceptance and commitment therapy, delivered within the context of an interdisciplinary intensive 3-week pain treatment program for youth with chronic pain. Materials and methods Two hundred twelve parents and their children participated in the study, with 116 participants completing 3-month follow-up measures. Parents completed measures of depressive symptoms, pain catastrophizing, protective responses, and psychological flexibility at admission, discharge, and 3 months after the program. Child functional disability was assessed at the same time points. We examined change in parent factors over time, while controlling for change in child distress. Results Parents reported significant improvements in all areas of functioning from admission to discharge and improvements were maintained at 3-month follow-up. Discussion This study provides evidence suggesting parent interventions can be effective in reducing parent distress and behaviors known to be associated with child outcomes.

National evidence-based guidelines recommend offering hydroxyurea to patients with sickle cell anemia 9 months of age and older using shared decision making, but offer no strategies to aid implementation. We developed a hydroxyurea multicomponent decision aid via a needs assessment, clinic observations, and iterative feedback to address parent decision needs and promote a discussion between clinicians and parents. A total of 75 parents and 28 clinicians participated across all phases. The decision aid was rated as useful. Hydroxyurea knowledge improved and decisional conflict decreased supporting the potential for use to facilitate shared decision making in pediatric sickle cell anemia.

The assessment of mental health needs and access to appropriate interventions for parents and caregivers is one of 15 evidence-based standards for the psychosocial care of children with cancer and their families. The objectives of this paper are to describe one program's approach to meeting this standard in oncologic, hematologic, and immunologic populations and outline key ethical, regulatory, and logistical considerations in providing mental health services to caregivers in a pediatric medical setting. A description of the Caregiver Mental Health Program (CMHP) is provided along with a case example to illustrate key considerations, including multiple family members needing care, access to psychiatric services, scope of treatment, confidentiality and privacy, and logistics. Challenges in the development of the CMHP as well as the program's benefits are discussed. Implementation of this standard of care will vary across institutions depending on various factors, such as staffing and programmatic resources and institutional culture.

There are many outpatient interventions for treating youth with mood disorders and their families. Despite the severity of impairment related to mood disorders, there is little research on the effe...

Background: Sickle cell disease (SCD) is associated with medical challenges that often worsen for adolescents and young adults (AYA) when caregivers begin to transfer responsibility for care. Living with SCD requires self-management and self-efficacy and is a critical concern for AYA as they navigate complex medical systems. However, previous research indicates that AYA with SCD often lack the ability, confidence, and skills to manage their disease effectively. As most AYA with SCD are now "technology natives," mobile health (mHealth) holds considerable promise for assessing and changing behaviors to improve health outcomes. In a previous feasibility and acceptability study, AYA with SCD provided qualitative feedback that they would use mHealth (a co-designed mobile app) and that it was beneficial for tracking health behaviors. Thus, we integrated the mHealth app into a group intervention (SCThrive) and hypothesized that more engagement with the mHealth app would result in increased self-management and self-efficacy for AYA with SCD. Methods: Our analysis from a single-site, randomized control trial (NCT02851615) assessed data from only AYA in the treatment arm (N = 26) who received the SCThrive intervention and used the mHealth app. The sample included AYA with SCD aged 13 to 21 years (Mage = 16.7 years; 54% female; 46% HbSS genotype; all African American/Black) who received six-weekly group sessions (3 in-person, 3 online). All SCThrive participants were provided with the mobile app (iManage) on an iPad. The Transition Readiness Assessment Questionnaire (TRAQ-5) assessed self-management skills and the Patient Activation Measure (PAM-13) assessed self-efficacy at baseline and posttreatment. We also assessed engagement (logins), confidence and completion of self-management goals (e.g., exercising, take medications), pain diary entries, and mood symptoms recorded on the iManage app (see Figure 1). Results: Preliminary analyses indicated that most AYA with SCD logged on to the iManage app (Mlogins = 7.8, SD = 9.1, range = 1 - 45) and viewed their pain diary (Mviews = 5.7, SD = 9.1, range = 1 - 45) at least once a week. Eighty-eight percent of AYA saved a pain diary entry and the most commonly used strategies for managing pain episodes were resting (22%), drinking water (19%), and using distraction (8%). AYA viewed their self-management goals about once every 11 days (Mdays = 11.24, SD = 13, range = 0 - 57). All AYA created (Mgoals = 5.7, SD = .72, range = 4 - 7), but only 54% of AYA completed at least one self-management goal. Of the 149 self-management goals created by the entire sample, only 37 (25%) were recorded as completed. AYA with a confidence level of 7 or lower were least likely to complete their self-management goals (14%) (see Figure 2). Correlation analyses demonstrated that logging on to the iManage app more frequently was associated with completing more self-management goals (r = .38), documenting pain symptoms more frequently (r = .54), and lower mood ratings (r = .54). Primary analyses demonstrated that after controlling for scores at baseline, the number of logins to the iManage app (p = .08, η2 = .13) predicted self-efficacy (PAM-13) and (p = .05, η2 = .17) self-management skills (TRAQ-5). Completing more self-management goals on the iManage app did not predict scores on the PAM-13, but, surprisingly, predicted lower scores (less self-management) on the TRAQ-5 (p = .08, η2 = .14). Conclusion: Lessons learned from our study indicate that it can be challenging to maintain engagement in mHealth for AYA with SCD, but for those who do engage there are significant benefits related to self-management goals, documenting pain symptoms, and mood. Supporting hypotheses, engaging more with the iManage app was related to higher-reported self-efficacy and self-management skills. Some AYA engaged with the app infrequently and did not create or complete self-management goals; others were "super users" and logged into the app daily. Increasing the frequency of reminder messages, encouraging more interactions with peers, and tailoring the opportunity to earn incentives are potential modifications for future interventions. However, our findings indicate that a mHealth app can be effectively integrated into a clinical trial and is related to positive outcomes. Although there are challenges to address, mHealth has the potential to bring about changes in behavior and improve health in the SCD population. Disclosures No relevant conflicts of interest to declare.

OBJECTIVE To report preliminary psychometric properties of PROMIS® assessments among emerging adults with sickle cell disease (SCD). METHOD Forty-five emerging adults with SCD ages 18-24 (M = 20.81, SD = 1.73) completed PROMIS® Pain Interference and Fatigue short forms and the Pediatric Quality of Life Inventory (PedsQL). Chart review was used to obtain information regarding SCD complications and health care utilization in the 3 years prior to study enrollment. Multivariate path analysis was used to compare PROMIS® scores by disease severity and use of disease-modifying therapies. Cronbach's alpha was used to evaluate internal consistency, and Pearson correlations assessed convergent validity between PROMIS® measures and the PedsQL. RESULTS Internal consistency was excellent for PROMIS® Pain Interference (α = .95) and good for PROMIS® Fatigue (α = .85). Associations between PROMIS® measures and PedsQL subscales were in the expected direction and large in magnitude (all ps < .001). There were no differences in PROMIS® scores based on disease severity or use of disease-modifying therapy (ps = .14-.86). CONCLUSIONS Findings provide preliminary evidence of validity and reliability of the PROMIS® Pain Interference and Fatigue short forms among emerging adults with SCD. Additional research is needed to replicate these findings in larger samples and assess sensitivity to change over time. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

The newest iteration of the Diagnostic and Statistical Manual–fifth edition (DSM-5), is the first to include the diagnosis of disruptive mood dysregulation disorder (DMDD). The assessment and diagnosis of psychopathology in children are complicated, particularly for mood disorders. Practice can be guided by the use of well-validated instruments. However, as this is a new diagnosis existing instruments have not yet been evaluated for the diagnosis of DMDD. This study seeks to provide a method for using existing structured interview instruments to assess for this contemporary diagnosis. The Children’s Interview for Psychiatric Syndromes (ChIPS) and the Mini-International Neuropsychiatric Interview for Children and Adolescents (MINI-KID) are reviewed and existing items consistent with a diagnosis of DMDD are identified. Finally, a case is presented using both measures and applying the theoretical items identified to illustrate how one might use these measures to assess DMDD. Limitations and future directions are discussed.

Background: Although hydroxyurea (HU) is an effective disease modifying treatment for sickle cell disease (SCD), uptake remains low in pediatric populations in part due to parental concerns such as side-effects and safety. NHLBI Guidelines recommend shared decision making for HU initiation to elicit family preferences and values; however, clinicians lack specific training. A HU shared decision-making (H-SDM) toolkit was developed to facilitate such discussions (NCT03442114). It includes: 1) decision aids to support parents (brochure, booklet, video narratives, and an in-visit issue card [featuring issues parents reported as key to decision-making about HU]); 2) quality improvement tools to monitor shared decision-making performance; and 3) a curriculum to train clinicians in advanced communication skills to engage parents in shared decision-making. This abstract describes the development and preliminary evaluation of the virtual reality (VR) component of the clinician curriculum. Objectives: The goals are to: 1) describe the development of a VR simulation for training clinicians in advanced communication skills, and 2) present preliminary data about its tolerability, acceptability, and impact. Methods: Immersive VR simulations administered via a VR headset were created. The VR environment was designed to replicate a patient room, and graphical character representatives (avatars) of parents and patients were designed based on common demographics of patients with SCD (Figure 1). During simulations, the provider verbally counseled the avatars around HU initiation with avatars' verbal and non-verbal responses matched appropriately. The H-SDM in-visit issue card was incorporated into the virtual environment to reinforce practice with this tool. The VR curriculum was piloted for initial acceptability with parents of a child with SCD and clinicians at a children's hospital. Evaluation: Hematology providers participated in the workshop training that included information on facilitating shared decision-making with subsequent deliberate practice of skills through VR simulations. Each provider completed at least one VR simulation. The view through the VR headset was displayed on to a projector screen so others could view the virtual interaction. Debriefing occurred regarding use of communication skills and utilization of the issue card. To assess tolerability, providers reported side effects related to participation. To assess acceptability, providers completed a modified version of the Spatial Presence Questionnaire and described their experience. Impact was assessed by self-report on a retrospective pre-post survey of confidence in specific communication skills using a 5-point scale (from not confident at all to very confident). Differences in confidence were assessed using Wilcoxon Signed-ranks tests. Results: Nine providers (5 pediatric hematologists and 4 nurse practitioners at 3 children's hospitals) participated. Tolerability: The VR experience was well tolerated with most providers reporting no side effects (Table 1). Acceptability: All providers agreed or strongly agreed that the VR experience captured their senses and that they felt physically present in the VR environment. Providers described the experience as "enjoyable", "immersive", and "fun". One provider noted, "It (the VR simulation) put me in clinic to experience what it felt like to discuss HU and use the tool." Impact: Providers' self-reported confidence significantly improved after VR simulations on 4 of 5 communication skills: confirming understanding, Z =1.98, p = .05, r = .44, eliciting parent concerns/values, Z = 2.22, p = .03, r = .50, using an elicit-provide-elicit approach, Z =1.8, p = .02, r = .50, minimizing medical jargon, Z = 1.8, p = .07, r = .40, and using open-ended questions, Z =1.98, p = .05, r = .44. Median scores changed by one-point for all responses and effects were medium to large (see Figure 2). Discussion: The VR curriculum was rated as immersive, realistic, and well-tolerated. Providers endorsed it as a desirable training method. Self-report of confidence in shared decision making-related communication skills improved following completion of VR simulation. Thus, initial data support that VR may be an effective method for educating providers to engage parents in shared decision making for HU. Disclosures Quinn: Amgen: Other: Research Support; Celgene: Membership on an entity's Board of Directors or advisory committees.