Emotional Health of Children with Sickle Cell Anemia from a National Cohort

Sickle Cell Anemia (SCA) is the most commonly inherited blood disorder in the United States. Complications of the disease often include spontaneous excruciating pain crises leaving children particularly vulnerable to emotional distress, influencing quality of life and social functioning. The quality of national datasets to evaluate the emotional health of children with SCA is unknown. Robust metrics could help clinicians devise plans to improve treatment and build patient/family engagement in shared decision making, vital to improving health outcomes. This study aims to identify children with SCA from a federal government database, and use this database to characterize their emotional health.

Methods: We performed a secondary data analysis utilizing the National Health Interview Survey (NHIS) to identify children with SCA from 2005-2015.The NHIS is the principal source of information on the health of the civilian noninstitutionalized population of the United States and is one of the major data collection programs of the National Center for Health Statistics (NCHS). It is part of the U.S. Centers for Disease Control and Prevention (CDC). It is conducted annually and interviews several households via multistage sampling techniques. The survey is divided into an adult and child core of each household. Each year approximately 12000 children were assessed. The children's core contained the Strength and Difficulties Questionnaire (SDQ) used in the Child Mental Health Brief Supplement to evaluate emotional health. The SDQ is a validated screening questionnaire used in children 4-17 years of age for behaviors that warrant additional evaluation. Each question is based over a six-month period. Due to inconsistent questions asked per year, we identified six consistent questions asked each year that w. Parents/proxiesanswered the questions for these children.

Results: 222 children ages 4-17 years were identified as having SCA in the NHIS 2005-2015. 0.1-0.24% respondents stated the sample child saw or spoke to a mental health professional. 3.7% of guardians reported the sample child to not be well behaved, 23% as not true and 72% sample children are well behaved. 70.4% of sample children were reported to not have many worries or seem worried within the past six months. 22% sample children were seen to somewhat have many worries or often seem worried within the past six months and 5.9% it was certainly true. For those who are unhappy/depressed or tearful within the past six months, 5.2% of sample children related to this while for 80.7% were reported to not have this and for 12.6% this was somewhat true. 57.8% of children are reported get along better with adult than children or youth within the past six months, 23.7% answered somewhat true to this question while 17% stated that this was certainly true. 15.6% sample children were reported to have good attention/completes chores, homework, 27.4% somewhat true and 55.6% as certainly true. 68.4% of children were reported to have difficulties with emotions, concentration, behavior or getting along with others but 23.4% stated this was somewhat true and 7% stated this was certainly true.

Conclusion: Less than 1% of children assessed in the NHIS 2005-2015 were identified as having SCA. This underestimates the values seen from the CDC to the number of children in the United States with Sickle Cell Anemia. Of these children, 0.9% of families acknowledged their children seeing a mental health professional demonstrating a significant gap in the access and potential utilization of this field. This suggests the need for additional national surveillance efforts that are more representative of the pediatric population affected by Sickle Cell Disease.