Family History Collection & Use in Oregon FQHCs: Current Practices & Future Directions
Amy Zlot, MPH
Beverly Mielke, MD, MPHOregon 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 Number & Percent
1st degree relatives 17 (65.4%)
2nd degree relatives 12 (46.2%)
Household members 3 (11.5%)
Age of onset 1 (3.8%)
Age of death 4 (15.4%)
Cause of death 5 (19.2%)
Examples of Forms
Examples of Forms
Most common diseases appearing on forms
0102030405060708090
100
perc
ent
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 Yes No Which Relative?
Age at Diagnosis
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
Healthoregon.org/genetics
Clinician Responses
Suggestions for improvement (already incorporated):
simplify language (psychiatric disordermental 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 MielkeFQHC clinicians
Questions, Comments & Future Directions