Screening for inattention, hyperactivity and impulsivity in children with haemophilia: A quality improvement intervention.

INTRODUCTION: Children with haemophilia have been reported with increased rates of inattention (IN) and hyperactivity/impulsivity (HI) and, therefore, are particularly vulnerable to poor social and academic outcomes. AIM: To examine the benefit of utilizing a formal screening process for IN/HI in children with haemophilia during comprehensive clinic visits using a quality improvement approach. METHODS: At a single haemophilia treatment centre, screening for psychosocial issues was expanded and formalised to include (1) the Conners 3rd Edition (Conners3) screening tool for IN/HI symptoms administered during the standard psychosocial assessment (SPA) by the social worker and school advocacy coordinator, (2) formal pathways to diagnosis and intervention as indicated including psychology consultation, psychological testing, or referral to community-based mental health professionals, and in-person advocacy assistance in the patient's community school. RESULTS: Forty-four patients, age 9.9 ± 4.8 years (range 3-16) were targeted. The initial screening approach was modified to improve the communication with caretakers during assessments and streamline diagnostic pathways if no, moderate or significant behavioural concerns were identified. Eleven patients had pre-existing mental health diagnoses. Thirteen of the remaining 33 patients (39.4%) received a new mental health diagnosis, ADHD in 8/33 (24.2%). Of the total cohort, 54.5% were found to have a mental health diagnosis. The rate of ADHD (29.5%) was significantly higher than reported in the general population. CONCLUSION: The described process, developed through a QI approach, allowed formal and objective screening for IN/HI, streamlined a pathway to diagnosis and intervention, and identified undiagnosed disabilities in children with haemophilia improving their access to services.

Reading intervention targeting phonemic awareness and symbol imagery in children with sickle cell disease.

Children with sickle cell disease (SCD) frequently have diminished academic attainment and are particularly vulnerable to reading dysfunction. We explored the effectiveness of a multisensory reading intervention offered during the summer to children with SCD at our institution. Subjects with reading deficits were identified through parent report, clinical findings, or school meetings. Summer reading programs utilizing Phonemic Awareness and Symbol Imagery were provided. The Lindamood-Bell Auditory Conceptualization/Phonemic Awareness Test, Third Edition (LAC-3), and the Symbol Imagery Test were used as pre- and postintervention examinations to measure progress. Fifteen students (median age 9.4 years, range 6-14 years, eight females, all African American) received the Phonemic Awareness intervention, two times a week for 6 weeks. The subjects showed statistically significant gains in standard scores derived from the LAC-3 (mean change 7.9 points, p < .001), with associated improvements in age equivalency (AE) and grade equivalency (GE). Twenty-nine students (median age 9 years, range 6-17 years, 13 females, all African American) participated in the Symbol Imagery reading program, also two times a week for 6 weeks. These students showed significant gains in overall standard scores (mean change 9.8 points, p < .001). Although results should be interpreted with caution due to small sample sizes, we found that summer reading clinics for children with SCD improved phonological processing and symbol imagery skills, potentially leading to substantial gains in reading capability.

Using Qualitative Perspectives of Adolescents with Sickle Cell Disease and Caregivers to Develop Healthcare Transition Programming.

Youth with sickle cell disease (SCD) are living longer, requiring transition from pediatric to adult health care. Transition programs have been created to improve transition readiness and help patients take responsibility for their health. The aim of this study was to explore the usefulness of current transition materials and identify unmet transition needs from the perspective of adolescents with sickle cell disease (SCD) and caregivers to refine transition programming and interventions. Focus groups were conducted with 14 adolescents with SCD (Mean age = 14.6 years, SD = 1.9) and 20 caregivers (Mean age = 43.2 years, SD = 9.3) to gather perspectives about transition to adult care, current transition program materials and recommendations for future programming. Four themes emerged: (a) transition skills and knowledge needs, (b) change in health care responsibility, (c) concerns with adult SCD care, and (d) useful transition readiness strategies and resources. The findings of this study were used to develop Web based educational modules, experiential transition skills learning, and an adolescent and caregiver hematology support group. Findings highlight the need to conduct periodic readiness assessments, provide opportunities and scaffolding to learn skills based on readiness level, and help build social support networks to encourage and facilitate learning.