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