Arkansas Adolescent Eating Disorders 1998-2009 Protocol

Adolescent Eating Disorders in Arkansas: 1998 to present

Tracie Pasold, PhD Principal Investigator [email protected] Susan Goolsby, MS, RD, CSSD, LD Co-investigator [email protected] 501-364-1261 Maria Portilla, MD Co-investigator [email protected]

Sponsors: University of Arkansas for Medical Sciences Department of Adolescent Medicine Arkansas Children's Hospital, Department of Clinical Nutrition

Introduction and Background Adolescents with eating disorders face numerous medical complications that can severely impact their future health and/or result in death. Cardiac problems, amenorrhea and osteoporosis are commonly seen in patients with Anorexia Nervosa. Patients with Bulimia Nervosa are at risk for electrolyte abnormalities which can result in cardiac complications, which could be fatal. More prominently are the existing emotional and behavioral correlates associated with eating disorders and the comorbidities. Little is known about Arkansas’ specific data on adolescents and children and if it differs significantly from national data. More research is needed to define this patient population so that prevention may be designed and treatment improved. Objectives of the Study The objectives of this study are: • To examine the incidence and prevalence of adolescent eating disorders among adolescents in Arkansas treated at Arkansas Children’s Hospital (ACH) Eating Disorder (ED) Clinic from 1998-2009 and compare that to national data • To describe the patient population of adolescents with eating disorders treated at ACH ED Clinic • To compare multiple medical conditions and how they relate to weight and Body Mass Index (BMI), more specifically, percent of reference weight • To determine emotional and behavioral correlates of this population • Determine if there are particular geographic areas of Arkansas with higher incidence of ED Methods The methodology for this research project will simply entail a review of the medical record data for each patient evaluated in the eating disorder program since 1998. Data will be summarized into an Excel spreadsheet by members of the research team, all of whom are certified by UAMS as having completed relevant HIPPA trainings. All identifying information will be separated from the patient data and replaced with a non−identifying research subject number. All identifying information will be removed and stored separately in an encrypted linked table on a separate computer in compliance with HIPPA regulations. When the database is compiled and all medical data

are linked appropriately, the identifying data kept by the PI will be destroyed, prior to any analyses of patient data occurring. Specific data to be collected: Patients: Race, Gender, Date of Birth, City, State, Zip Code, Type of insurance (Private, Medicaid or ARKids), Diagnosis at first visit to Eating disorder clinic, Date of first visit to ED clinic, Date of last visit to ED clinic, Weight, Height, BMI at first and last visit to ED clinic, Hospital admission dates, Dates and results of Bone density, Dates and results of Metabolic studies, Status of menses, and BMI when menses resumed. Medical information obtained at the initial evaluation of the patient in the eating disorder clinic including complete history and physical examination (weight, height, pulse, blood pressure) and the following tests which are ordered by the physician per patient at intake in keeping with the best practices of this clinic population (electrocardiogram (EKG), resting energy expenditure, bone mineral density, basic metabolic panel, plus magnesium, phosphorus and calcium, thyroid panel, CVC (red, white, platelet counts), also psychological data obtained from the evaluation including the clinical interview and the Eating Disorder Inventory, children's depression inventory, and revised children's manifest anxiety self report measures. Initial statistical design and plan: SPSS will be utilized to perform analyses on that data. Descriptive and spearman corelational statistics will be run on all variables to explore and identify important relationships between variables. Analysis of variance will be run on related variables to determine significance of the relationship between the variables. Specific elements of the PHI: Patients: Race, Gender, Date of Birth, City, State, Zip Code, Type of insurance (Private, Medicaid or ARKids), Diagnosis at first visit to Eating disorder clinic, Date of first visit to ED clinic, Date of last visit to ED clinic, Weight, Height, BMI at first and last visit to ED clinic, Hospital admission dates, Dates and results of Bone density, Dates and results of Metabolic studies, Status of menses, and BMI when menses resumed. Medical information obtained at the initial evaluation of the patient in the eating disorder clinic including complete history and physical examination (weight, height, pulse, blood pressure) and the following tests which are ordered by the physician per patient at intake in keeping with the best practices of this clinic population (electrocardiogram (EKG), resting energy expenditure, bone mineral density, basic metabolic panel, plus magnesium, phosphorus and calcium, thyroid panel, CVC (red, white, platelet counts), also psychological data obtained from the evaluation including the clinical interview and the Eating Disorder Inventory, children's depression inventory, and revised children's manifest anxiety self report measures. The plan to protect the identifiers from improper use or disclosure: PHI will be abstracted from medical records. The medical record will contain patient identifiers. As the information is abstracted from the medical record, a unique number not

associated with the patient identity will be assigned to that subject's data, and the identifying information of the patient will be kept separately in an encrypted linked table on a separate computer from the patient data being examined for this research study. The plan will be to destroy the identifiers at the earliest opportunity consistent with the conduct of research, unless there is a health or research justification for retaining the identifiers or retentions is required by law: All patient identifiers will be destroyed once the patient data from the medical records are linked by a unique non-identifying number. No analysis of patient data will occur until all patient information is de-identified.