Examples of Successful Proposals

Development of New Database for Medically Complex Pediatric Patients

Brandt Groh, M.D.
Assistant Professor of Pediatrics and Rheumatology
Phone: 717-531-8882
Email: bgroh@psu.edu
CYFC Level I Funding Proposal

Background

Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM) are often debilitating conditions which affect both adults and adolescents. Early descriptions date back to the 18 century, and both are increasingly recognized as prevalent in adolescent populations. The best CFS point prevalence estimate based on HMO data is 75 - 267 cases per 100,000 adolescents (1). Another phone survey study indicated an average age of 11.6 years and an equal sex ratio (1). The morbidity of CFS and FM can be substantial. Patients with the diagnoses of CFS and FM seen in our Pediatric Rheumatology Clinic have far more social dysfunction and longer school absence than age and sex matched patients with Juvenile Rheumatoid Arthritis. Comorbidities in CFS and FMS have lead to involvement of various medical specialists in the care of these patients. Numerous experts in the fields of Infectious Disease, Rheumatology, Gastroenterology, Cardiology and Psychiatry support the concept that overlapping symptom complexes between these two disorders describe a wide variety of syndromes. The unifying concept of "Central Sensitivity Syndrome" may help bring together subspecialty research efforts to better describe and treat these challenging disorders (2). Stewart and colleagues at Johns Hopkins University Medical Center recently described neurovascular abnormalties that characterize both CFS and FM patients, leading new and frequently effective therapies (4). Treatment of sleep disturbance, depression and anxiety have also proven beneficial in selected patients.

Activities

Patients with CFS, FM and comorbid conditions such as frritable Bowel Syndrome, Myofascial Pain Syndrome, Postural Orthostatic Tachycardia Syndrome, Restless Leg Syndrome and Chronic Headache variants receive care in a number of subspecialty clinics as mentioned above. There is a need to synthesize clinical information gathered in these clinics to better describe the unified syndrome of Central Sensitivity Syndrome and its overlapping sub-syndromes. The Collation of patient characteristics and test data in an electronic database should lead to publications that enhance recognition of the syndrome(s), saving substantial time, financial and emotional resources that are currently spent on diagnostic efforts (4). Future clinical trials of pharmaceutical agents based on disease stratifications indicated by the database review should enhance the quality of life for these adolescent patients and their families.

In the Division of Pediatric Infectious Disease and Rheumatology here at Penn State Milton S. Hershey Medical Center, we have a study- dedicated laptop computer with both Filemaker Pro and Access Databases ready for use. Second Year Medical Student Sara Davis is available through the summer months to begin collection and entry of patient data as part of her required Medical Student Research Project. She will be applying to the Human Subjects Protection Office soon for IRB approval of questionnaires and records review. The number of patients to be entered into the database from this facility is estimated to be in the range of 100 - 150. When possible, we try to secure funding for medical students to complete such projects; hence our application to your program for funding.

Budget Student Stipend

$4000.

Relevance to CYFC Goals

The proposed database project will be multidisciplinary involving the Department of Psychology at the main campus as well as the subspecialty clinics of Infectious Disease, Rheumatology, Cardiology, Gastroenterology and possibly Neurology here at Penn State Children's Hospital. There may be an opportunity to tie in clinics at The Children's Hospital of Philadelphia as well. Information gleaned from the Central Sensitivity Syndrome population will have relevance for other causes of adolescent social dysfunction and school absence, particularly in chronic disease populations. We would hope to identify risk factors in the course of this project which could identify adolescents early in the course of their dysfunction, allowing for timely interventions. Because adolescents with Central Sensitivity Syndrome have historically consumed inordinate medical and educational resources, better recognition and care of these patients should ultimately translate into a societal cost savings.

References

1. Marshall GS, Report of a Workshop on the Epidemiology, Natural History, and Pathogenesis of Chronic Fatigue Syndrome in Aadolescents. J Pediatr 1998; 134:395-405.
2. Yunus MB, Central Sensitivity Syndromes: a Unified Concept for Fibromyalgia and Other Similar Maldies. J Indian Rheumatol Assoc 2000;8:27-33.
3. Stewart JM, Gewitz MH, Weldon A et a!. Orthostatic Intolerance in Adolescent Chronic Fatigue Syndrome. Pediatrics 1999; 103:116-121.
4. Consevage MW, Characterization of the Pediatric Patient with Chronic Orthostatic Intolerance (Recurrent "Near Syncope"). Penn State Children's Hospital Research Day Abstracts 2002: 24.

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