Family History Collection in Oregon FQHCs Current Practices and

Family History Collection & Use in Oregon FQHCs: Current Practices & Future Directions Amy Zlot, MPH Beverly Mielke, MD, MPH Oregon Genetics Program Overview  Intern Project  Background   Genomics Family history    Family history form review Interviews with clinicians Family history template development CDC Genomics  Expand MCH focus of single gene disorders  Cystic Fibrosis  Focus on adult onset complex chronic conditions   Diabetes Asthma  Integrate genomics into public health programs Why Family History? Family History Form Review Family History Form Review  Goals of this part of the project:  Determine which diseases most commonly appear on forms Examine the structure of various forms  Methods  Collected a blank copy of the patient intake form from all 26 FQHCs   Developed a matrix to record results Background literature search to develop a list of diseases with the strongest genetic links Map of FQHCs in Oregon Results of Form Review  96% of Oregon FQHCs have a Fhx section on their initial patient intake form (25/26)  Remarkable amount of variety in the forms   Diseases and family members Basic structure Form Structure Characteristic 1st degree relatives 2nd degree relatives Household members Age of onset Age of death Cause of death Number & Percent 17 (65.4%) 12 (46.2%) 3 (11.5%) 1 (3.8%) 4 (15.4%) 5 (19.2%) Examples of Forms Examples of Forms hy pe rt e ns ca ion nc er ,g en di er ab al et es ,t yp he e II ar td ise as e percent 100 90 80 70 60 50 40 30 20 10 0 st ro ke al co ho tu l be rc ulo sis at op y/ as th m a ps kid yc hia ne y tri c di so rd er ep ile ps y th yr oi d Most common diseases appearing on forms Interviews with FQHC Clinicians Interviews with FQHC Clinicians         10 clinician interviews 6 urban, 3 rural, 1 frontier 5 MDs, 5 NP or PA All primary care clinicians 7 female, 3 male Experience: 1.5-29 years, median = 6.5 years Clinic size: 3-23 clinicians, primarily Family Practice EMR: 40% yes, 60% no When is Fhx information collected?   Initial clinic visit (10/10) Other visits      wellness visits (physicals and annual exams) first prenatal care chronic disease management new symptoms/new diagnosis where Fhx is pertinent yearly review expected at one clinic How would you describe the accuracy of Fhx information provided by patients?  “Accurate to the extent that patients are aware of information and think of it” Patients often unable to give specific details about diseases Patients aware of cancer, heart attacks, diabetes, but unaware of high cholesterol or high blood pressure Cultural differences influence what people know about their Fhx    What do you find is the biggest challenge in collecting Fhx information?  Most common responses:    Clinicians’ lack of time Limited patient knowledge Patients’ lack of understanding why Fhx is important  Other thoughts:   Many patients are adopted or estranged from at least one parent Large amount of information to collect during a visit, and Fhx is a lower priority Which diseases do you focus on in Fhx collection?  Most common responses:      Diabetes Heart disease Cancer (especially breast and colon) Mental health (bipolar, schizophrenia, depression) Drug and alcohol use Do you change your recommendations for screening based on Fhx information?  100% said yes  Common examples were for breast cancer, colon cancer, heart disease, and diabetes Do you change your recommendations for treatment based on Fhx information?  50% yes, 50% no  Most common change is being more aggressive in starting prescription drug treatment for diabetes or high cholesterol if a patient has a strong Fhx What do you think about the form that your clinic uses?  Wide range of opinions  Concerns about the reading level of the form  Patients “often skip portions or clearly haven’t read the form carefully. The form is more detailed than is appropriate for the reading and educational level of my patients.”   “Good starting point to gather information” Others felt the information gathered was inaccurate and minimally helpful What causes the most confusion to patients about the form?  Only filled out one side   Don’t know disease names/categories Confuse Fhx section with personal medical history Answer questions for non-immediate family, even when specified Unclear which box to check for which condition   Suggestions for a template  Limit number of diseases     Specify which family members to include Ask about alcohol/drug abuse Ask about mental health Only include diseases that would influence screening, care, and education Family History Template Development Have any of your close blood relatives (grandparents, parents, brothers, sisters, children) ever had the following? Disease High Blood Pressure Heart Disease Diabetes Stroke Asthma Breast Cancer Colon or Rectal Cancer Other type of Cancer: Please list_______________ Mental Problem (depression, bipolar, schizophrenia) Alcohol or Drug Problem Other diseases that run in your family: Please list Yes No Which Relative? Age at Diagnosis Oregongenetics.org Clinician Responses  Suggestions for improvement (already incorporated):  simplify language (psychiatric disordermental problem)  change “alcohol/drug abuse” to “alcohol or drug problem” Include asthma  Conclusions  Goal: early detection and prevention of disease in high-risk patients  Point of asking for Fhx on intake form is to “start the conversation” Form must be concise, can’t expect complete information to be gathered from form alone  Next Steps  Overall  Does the collection of family history make a difference?  Clinical utility  Form structure  Need to evaluate effectiveness of different structures  Public Health Message  Why family history matters References          Acheson LS, Wiesner GL, Zyzanski SJ, et al. Family history-taking in community family practice: implications for genetic screening. Genetics in Med 2000;2:180-185. American Medical Association. Family medical history in disease prevention. 2004. Available at www.ama-assn.org/go/familyhistory. Accessed 20 October 2006. Guttmacher AE, Collins FS, Carmona RH. The family history—more important than ever. N Engl J Med 2004;351:2333-6. Harris EL, McMullen C. Final report: family history in clinical practice. Kaiser Permanente Center for Health Research. March 31, 2006. Johnson J, Giles RT, Ware J et al. Utah’s family high risk program: bridging the gap between genomics and public health. Prev Chronic Dis, 2005 Apr. Available at http://www.cdc.gov/pcd/issues/2005/apr/04_0132.htm. Accessed 5 October 2006. Luna B, Feinglos MN. Oral agents in the management of type 2 diabetes mellitus. Am Fam Physician 2001;63(9):1747-56. Oregon Department of Human Services. CD Summary: All in the Family. July 11, 2006. Available at http://oregon.gov/DHS/ph/cdsummary. Accessed 15 September 2006. Rich EC, Burke W, Heaton CJ et al. Reconsidering the family history in primary care. J Gen Intern Med 2004;19:273-280. Yoon PW, Scheuner MT, Gwinn M, et al. Awareness of family health history as a risk factor for disease—United States, 2004. MMWR Weekly 2004;53:1044-1047. Thank you Beverly Mielke FQHC clinicians Questions, Comments & Future Directions