Mental Health Assessment of Youth with Sickle Cell Disease and Their Primary Caregivers During the COVID-19 Pandemic

Youth with sickle cell disease (SCD) and their caregivers are susceptible to stress and depression, perhaps exacerbated by pandemic-associated health and economic concerns. Most of the 50 youth-caregiver dyads enrolled in the multi-site HABIT trial took an on-line survey of self-reported mental health symptoms and food insecurity during the 2020 COVID-19 pandemic. Compared to largely pre-pandemic results, prevalence of mental health symptoms in dyad members appeared to have shifted: fewer youth and more caregivers were affected during the pandemic; many of both groups lacked optimism. Pandemic screening of youth with SCD for mental health symptoms and food insecurity appears warranted.

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The Relationship between Sensory Reactivity Differences and Mental Health Symptoms in Children with Neurodevelopmental Conditions and Their Neurotypical Peers

OBM Neurobiology ◽

10.21926/obm.neurobiol.2104110 ◽

2021 ◽

Vol 5 (4) ◽

pp. 1-1

Author(s):

Timothy Rossow ◽

◽

Elysa J Marco ◽

Molly Gerdes ◽

◽

...

Keyword(s):

Mental Health ◽

Health Assessment ◽

Preliminary Evidence ◽

Typically Developing ◽

Mental Health Symptoms ◽

Health Symptoms ◽

Sensory Reactivity ◽

Mental Health Assessment ◽

Relationship Of ◽

The Relationship

Children with neurodevelopmental conditions (NDC) often have sensory reactivity differences, such as being overwhelmed by sounds, which can elicit distress in their everyday life. Furthermore, children with an NDC often present with a greater frequency of mental health symptoms compared to their typically developing peers. However little research has examined the relationship of these sensory reactivity differences on broader mental health. This study set out to explore the relationship between sensory reactivity and mental health symptoms. Data from parent-reported measures of sensory reactivity and mental health symptoms were collected for 49 children presenting with a neurodevelopmental condition and 42 typically developing (TD) controls. Partial correlational analyses, controlling for IQ, were used to elucidate the relationship between sensory reactivity and mental health symptoms. Children with an NDC were significantly more likely to present with a sensory reactivity difference or mental health symptom. Sensory seeking was found to be the sensory subtype most related to mental health symptoms, especially in externalising conditions. There was evidence also found for a relationship between depression, sensory seeking and sensory hypo-reactivity, and GAD and hyper-reactivity. Findings suggest a relationship between sensory reactivity and mental health symptoms in children with a neurodevelopmental condition. There is also preliminary evidence of unique sensory-based profiles of mental health. Assessment of sensory difficulties as part of more rigorous mental health assessments within mental health services will support more accurate diagnoses and intervention.

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International Olympic Committee (IOC) Sport Mental Health Assessment Tool 1 (SMHAT-1) and Sport Mental Health Recognition Tool 1 (SMHRT-1): towards better support of athletes’ mental health

British Journal of Sports Medicine ◽

10.1136/bjsports-2020-102411 ◽

2020 ◽

Vol 55 (1) ◽

pp. 30-37

Author(s):

Vincent Gouttebarge ◽

Abhinav Bindra ◽

Cheri Blauwet ◽

Niccolo Campriani ◽

Alan Currie ◽

...

Keyword(s):

Mental Health ◽

Sports Medicine ◽

Assessment Tool ◽

Elite Athletes ◽

Health Assessment ◽

International Olympic Committee ◽

Mental Health Symptoms ◽

Health Symptoms ◽

Mental Health Assessment ◽

Former Elite Athletes

ObjectivesTo develop an assessment and recognition tool to identify elite athletes at risk for mental health symptoms and disorders.MethodsWe conducted narrative and systematic reviews about mental health symptoms and disorders in active and former elite athletes. The views of active and former elite athletes (N=360) on mental health symptoms in elite sports were retrieved through an electronic questionnaire. Our group identified the objective(s), target group(s) and approach of the mental health tools. For the assessment tool, we undertook a modified Delphi consensus process and used existing validated screening instruments. Both tools were compiled during two 2-day meeting. We also explored the appropriateness and preliminary reliability and validity of the assessment tool.Sport Mental Health Assessment Tool 1 and Sport Mental Health Recognition Tool 1The International Olympic Committee Sport Mental Health Assessment Tool 1 (SMHAT-1) was developed for sports medicine physicians and other licensed/registered health professionals to assess elite athletes (defined as professional, Olympic, Paralympic or collegiate level; aged 16 years and older) potentially at risk for or already experiencing mental health symptoms and disorders. The SMHAT-1 consists of: (i) triage with an athlete-specific screening tool, (ii) six subsequent disorder-specific screening tools and (iii) a clinical assessment (and related management) by a sports medicine physician or licensed/registered mental health professional (eg, psychiatrist and psychologist). The International Olympic Committee Sport Mental Health Recognition Tool 1 (SMHRT-1) was developed for athletes and their entourage (eg, friends, fellow athletes, family and coaches).ConclusionThe SMHAT-1 and SMHRT-1 enable that mental health symptoms and disorders in elite athletes are recognised earlier than they otherwise would. These tools should facilitate the timely referral of those athletes in need for appropriate support and treatment.

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Mental Health Assessment of Youth with Sickle Cell Disease and Their Primary Caretakers: Baseline Depression and COVID-19 Pandemic-Associated Psychosocial Stress in a Multi-Site Study

Blood ◽

10.1182/blood-2020-140866 ◽

2020 ◽

Vol 136 (Supplement 1) ◽

pp. 41-42

Author(s):

Nancy S. Green ◽

Deepa Manwani ◽

Kim Smith-Whitley ◽

Banu Aygun ◽

Abena Appiah-Kubi ◽

...

Keyword(s):

Mental Health ◽

Depressive Symptoms ◽

Food Insecurity ◽

Board Of Directors ◽

Research Funding ◽

Assessment Tools ◽

Mental Health Symptoms ◽

Advisory Committees ◽

Health Symptoms ◽

Work Arrangements

Introduction: Youth with sickle cell disease (SCD) and their families are susceptible to stress and depression associated with chronic illness and social factors disproportionately affecting under-resourced U.S. communities. The COVID-19 pandemic has adversely impacted psychosocial and economic well-being, especially in some of these same communities. Our concurrent HABIT multi-site randomized trial aims to improve hydroxyurea adherence in youth with SCD ages 10-18 years through an intervention led by community health workers(NCT03462511). Subjects enrolled as youth-primary caretaker dyads; adults were mostly parents. We hypothesized that some HABIT subjects had depressive symptoms at baseline, and many had additional stressors during the pandemic. Methods: Two self-reported assessment tools were used, with options of English or Spanish: 1) PROMIS® pediatric (8a, v1.0) or adult (4a, v1.0) depression measures, completed at HABIT enrollment, nearly all between May 2018 - March 2020 ("baseline"); 2) A pandemic-related open-access survey originated by Johns Hopkins University on established core adult mental health assessed risks and behaviors.[1] Questions were closely adapted for use by youth. The pandemic survey assessed recent mental health symptoms and substance or domestic abuse. Two validated food insecurity screening questions were added.[2] Of 92 HABIT subjects, 84 were offered survey participation between May - July, 2020. Participants completed both assessment tools via electronic linkage to REDCap data capture. Analyses used chi square or Fisher exact test. Results: In all, 75% (63 of 84) responded to the pandemic survey; 31 were youth-parent dyads and one unpaired parent. Baseline demographics were: Youth (N=31): mean age 12.9±1.9 years, 48.4% female, 80.6% grade 6-12, 45.3% hospitalized within the prior 12 months; Caretakers (N=32): mean age 44.0±9.6 years, 87.5% Black, 18.8% Latinx, 37.50% married or living with a partner, 59.4% with at least some college education. At baseline, youth mean PROMIS® Depression T-Score was 49.9±10.1 (normal <50), with 64.5% reporting mild, moderate or severe depressive symptoms, compared to Caretaker' mean score 46.6±9.4 (normal <55) with 15.5% symptomatic (p=0.0002) (Table). In contrast, the pandemic survey revealed that 3 (9.7%) youth and 8 (25.0%) caretakers had recently felt depressed and/or anxious (NS). Loneliness (1 in 5) and especially not feeling hope for the future (1 in 2) were common in both groups. More youth than caretakers (89.1% vs.46.9%) had changes made to their school or work arrangements (p=0.008). Four (12.5%) caretakers and 1 (3.2%) youth had histories of mental illness. Substance use/abuse or verbal abuse were reported in <10% of each group. Food insecurity was reported in 6 (18.8%) families. "Red flag" replies to the pandemic survey necessitated referral of 6 dyads (18.8%) to their SCD social workers for support. Conclusions: In this sample of subjects from the HABIT Trial, at baseline a higher proportion of youth had depressive symptoms compare to their primary caretakers. During the initial pandemic peak in the Northeast, disrupted work arrangements and especially school cancellation were widespread. Fewer youth but similar proportions of caretakers reported feeling depressed and/or anxious. Both groups commonly reported loneliness or not feeling hopeful for the future. History of mental health conditions, current substance use/abuse or verbal abuse were uncommon. Concordant with concerns for under-resourced communities, a sizeable minority of families reported food insecurity. Under the limitations of using 2 different assessment tools, in this modest sample the majority of youth with SCD but not caretakers were mildly-moderately depressed at baseline and that, during the pandemic, the 2 groups reported similar proportions of mental health symptoms. These findings suggest that screening for mental health symptoms, social disruption and food insecurity may be warranted in this high-risk group overall and during the pandemic. References: 1) COVID-19 and mental health measurement working group, Johns Hopkins Bloomberg School of Public Health, March 18, 2020 2) Barnidge E., et al., Screening for Food Insecurity in Pediatric Clinical Settings. J. Community Health 42(1):51-57, 2017 The HABIT Trial is supported by 5R01NR017206-04 (Green, Smaldone). The authors have no conflicts to disclose. Disclosures Smith-Whitley: Novartis: Membership on an entity's Board of Directors or advisory committees; Global Blood Therapeutics: Membership on an entity's Board of Directors or advisory committees; Prime: Other: Education material; Celgene: Membership on an entity's Board of Directors or advisory committees. Aygun:bluebird bio: Membership on an entity's Board of Directors or advisory committees, Research Funding; National Institute of Nursing Research: Research Funding; Patient-Centered Outsomes Research Institute: Research Funding; National Heart, Lung, and Blood Institute: Research Funding.

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Mental Health Symptoms, Quality of Life and Barriers to Accessing Health Care in Sickle Cell Disease

Blood ◽

10.1182/blood.v118.21.337.337 ◽

2011 ◽

Vol 118 (21) ◽

pp. 337-337

Author(s):

Marsha J Treadwell ◽

Fernando Barreda ◽

Kimberly Major ◽

Valentino Walker ◽

Wanda Payton ◽

...

Keyword(s):

Quality Of Life ◽

Mental Health ◽

Health Care ◽

African American ◽

Pediatric Patients ◽

Cell Disease ◽

Mental Health Symptoms ◽

Health Symptoms ◽

Hemoglobin Type

Abstract Abstract 337 Background: Individuals with sickle cell disease (SCD) face a number of barriers as they attempt to access timely and appropriate health care. We previously reported that adult and pediatric patients with SCD differed on some barriers reported, with adults citing more barriers related to insurance and provider knowledge and attitudes. Patients' emotional status, including worry, frustration and anger, were also reported barriers to accessing health care. However, there has been limited research formally assessing mental health symptoms as potential barriers to accessing health care in SCD. Objective: To investigate the relation between mental health symptoms, quality of life and reported barriers to accessing healthcare. We hypothesized that 1) mental health symptoms would be predictive of reported barriers, for adults with SCD compared with children, and 2) quality of life would be inversely related to the number of reported barriers, for adults and children. Methods: 112 patients with SCD were enrolled in a cross sectional study. Pediatric patients and their parents, and adults with SCD completed screening measures of depression (Patient Health Questionnaire-9 or Children's Depression Inventory) and anxiety (Generalized Anxiety Disorder- 7 or Multidimensional Anxiety Scale for Children-10) and were categorized with no, mild, moderate or severe symptoms. They also completed quality of life measures (SF 36v2® or PedsQL®) and a validated checklist of barriers to accessing healthcare for SCD. Results: Participants were 35 children (M age 9.5, 1– 17 years) and their parents, and 77 adults (M age 31.2, 18 – 68 years); 53% female; 75% African American; 71% diagnosed with Hgb SS. Sixty one percent of adults reported moderate to severe depressive symptoms, compared with 4% of children (p <.001). Thirty-six percent of adults reported moderate to severe symptoms of anxiety, compared with 12% of children (p <.05). Adults reported significantly worse quality of life in the Physical (M =53.0, SD =23.7) and Mental Health (M =49.4, SD =23.2) domains compared with children (Physical M =65.6, SD =21.4, p <.05 and Mental Health M =66.0, SD =17.9, p <.01). In regression analyses, we found that, with gender and hemoglobin type controlled for, depression was predictive of number of barriers faced for adult (R2 =.27, β = 3.57 ±.88, n = 74) but not pediatric patients (R2 =.26, β = 5.68 ± 2.54, n = 26). Anxiety was predictive of number of barriers faced for adults (R2 =.28, β = 3.99 ±.94, n = 75) but not pediatric patients (R2 =.13, β = 2.13 ± 1.96, n = 26). Greater number of barriers faced was predictive of worse quality of life in the Mental Health domain for both adults and pediatrics, controlling for gender and hemoglobin type (R2 =.19, β = −.98 ±.26, n = 73 for adults and R2 =.28, β = −1.06 ±.36, n = 33 for pediatrics). In the Physical domain, greater number of barriers faced was predictive of worse quality of life for adults but not pediatrics, controlling for gender and hemoglobin type (R2 =.18, β = −.97 ±.26, n = 73 for adults and R2 =.15, β = −1.03 ±.46, n = 33 for pediatrics). Conclusion: Adults with SCD reported a higher prevalence of moderate to severe symptoms of depression and anxiety, compared with children with SCD and the general African American population. Mental health symptoms were predictive of difficulties with accessing health care for adult more so than pediatric patients. There is an urgent need to address barriers to health care for patients with SCD; to prevent morbidity in pediatrics that may contribute to impaired quality of life in adulthood; and to improve mental health services available to adults in particular. Disclosures: No relevant conflicts of interest to declare.

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The Relationship between Mental Health, Educational Attainment, Employment Outcomes, and Pain in Sickle Cell Disease

Blood ◽

10.1182/blood-2019-129874 ◽

2019 ◽

Vol 134 (Supplement_1) ◽

pp. 419-419

Author(s):

Kelly M Harris ◽

Taniya Varughese ◽

Anna Bauer ◽

Seth Howdeshell ◽

Cecelia Calhoun ◽

...

Keyword(s):

Mental Health ◽

Sickle Cell Disease ◽

Educational Attainment ◽

Sickle Cell ◽

Employment Status ◽

Severe Pain ◽

Cell Disease ◽

Annual Household Income ◽

Significant Relationships ◽

Pain Outcomes

Sickle cell disease (SCD) is the most common genetic condition in the world and disproportionately affects African Americans in families with lower household incomes. SCD is characterized by a variety of complications including episodes of severe pain, chronic anemia, and end-organ damage. Morbidity from SCD begins in infancy and increases in frequency and severity with age. Complications during childhood and adolescence, both critical learning periods for youth, substantially impact educational attainment and life outcomes. SCD-related hospitalizations are associated with social determinants of health, such as socioeconomic status (SES), depression, health literacy, and educational outcomes. In youth with SCD, family and neighborhood SES are predictors of pain level, pain frequency, and overall quality of life. In addition to the physiological impacts of SCD, individuals with SCD experience emotional and stress related effects of the disease that may impact daily quality of life and frequency and severity of pain. Studies have found that hospital admission frequency has limited or no impact on academic outcomes in youth with SCD. Few studies have explicitly examined the relationship between SCD-related pain and educational, socioeconomic, and mental health outcomes. This is a cross-sectional study of patient survey data from a single site in the Sickle Cell Disease Implementation Science Consortium (SCDIC). The primary objective was to identify a relationship between educational attainment, employment status, mental health, and the frequency, severity, or length of pain crises for individuals with SCD. Multivariate analysis was used to assess the impact of patients' educational attainment, employment status, annual household income (low = less than $25,000, high = $75,001 and above), and self-reported depression on the frequency, length, and severity of SCD-related pain. Our central hypothesis was that individuals with a history of depression, lower educational attainment, periods of unemployment, and lower incomes experience more frequent, more severe, and longer pain crises. A total of 307 participants were included. The mean age was 27.4 years (range 15 to 45), 58.3% were female, and 99% were African American. Sixty-two percent had Hgb SS, the most severe form of SCD. About half of all patients (50.5%) reported they take pain medication every day for SCD and majority were on some form of disease modification (64.2% on hydroxyurea (HU), 20.2% on chronic blood transfusion). Slightly less than half (48.9%) reported their highest level of education as a high school diploma or lower. Most were unemployed (15.3%), students (22.8%), or disabled (21.5%), and 59.2% reported an average annual household income less than $25,000. Univariate analysis revealed statistically significant associations between employment status as unemployed or disabled and frequency of pain (p < .001), employment status as unemployed or disabled and severity of pain (p < .001), and employment status as disabled and length of pain > 4 days. Relationships between depression and frequency and severity of pain were statistically significant at the p < .001 level, and between depression and length of pain > 1 week at the p < .01 level. Multivariate analysis revealed positive statistically significant relationships between depression and high pain frequency (p < .001), employment status as disabled and severe pain (p < .01), depression and severe pain (p < .01), and employment status as disabled and length of pain >4 days (p < .05), Table 1. Educational attainment did not demonstrate statistically significant relationships with pain outcomes. No variables demonstrated statistically significant relationships with length of pain > 1 week and length of pain > 2 weeks. The only significant association with pain outcomes was that HU users were less likely to take daily opioids. Individuals with SCD who are disabled or have a history of depression are more likely to report more severe and frequent pain. No relationship emerged between educational attainment and pain outcomes. As the results are limited to the cross-sectional design, we cannot make statements of causality. For now, we know that people with SCD and these risk factors need further study for interventions. We plan to further assess study participants across all eight SCDIC sites in the next phase of this work. Disclosures King: Bioline: Consultancy; Amphivena Therapeutics: Research Funding; Incyte: Consultancy; Cell Works: Consultancy; Celgene: Consultancy; Magenta Therapeutics: Membership on an entity's Board of Directors or advisory committees; Novimmune: Research Funding; RiverVest: Consultancy; Tioma Therapeutics (formerly Vasculox, Inc.):: Consultancy; WUGEN: Equity Ownership.

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Identifying barriers to evidence-based care for sickle cell disease: results from the Sickle Cell Disease Implementation Consortium cross-sectional survey of healthcare providers in the USA

BMJ Open ◽

10.1136/bmjopen-2021-050880 ◽

2021 ◽

Vol 11 (11) ◽

pp. e050880

Author(s):

Matthew P Smeltzer ◽

Kristen E Howell ◽

Marsha Treadwell ◽

Liliana Preiss ◽

Allison A King ◽

...

Keyword(s):

Mental Health ◽

Sickle Cell Disease ◽

Sickle Cell ◽

Clinical Care ◽

Evidence Based ◽

Cell Disease ◽

Cross Sectional Survey ◽

Medical Needs ◽

The Usa ◽

Evidence Based Care

ObjectivesSickle cell disease (SCD) leads to chronic and acute complications that require specialised care to manage symptoms and optimise clinical results. The National Heart Lung and Blood Institute (NHLBI) evidence-based guidelines assist providers in caring for individuals with SCD, but adoption of these guidelines by providers has not been optimal. The objective of this study was to identify barriers to treating individuals with SCD.MethodsThe SCD Implementation Consortium aimed to investigate the perception and level of comfort of providers regarding evidence-based care by surveying providers in the regions of six clinical centres across the USA, focusing on non-emergency care from the providers’ perspective.ResultsRespondents included 105 providers delivering clinical care for individuals with SCD. Areas of practice were most frequently paediatrics (24%) or haematology/SCD specialist (24%). The majority (77%) reported that they were comfortable managing acute pain episodes while 63% expressed comfort with managing chronic pain. Haematologists and SCD specialists showed higher comfort levels prescribing opioids (100% vs 67%, p=0.004) and managing care with hydroxyurea (90% vs 51%, p=0.005) compared with non-haematology providers. Approximately 33% of providers were unaware of the 2014 NHLBI guidelines. Nearly 63% of providers felt patients’ medical needs were addressed while only 22% felt their mental health needs were met.ConclusionsA substantial number of providers did not know about NHLBI’s SCD care guidelines. Barriers to providing care for patients with SCD were influenced by providers’ specialty, training and practice setting. Increasing provider knowledge could improve hydroxyurea utilisation, pain management and mental health support.

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