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Service Delivery Innovation Profile

Statewide Screening of Fifth Graders Leads to Identification and Treatment of Those With Genetic Predisposition to Early-Onset Heart Disease


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Summary

The Children's High Cholesterol program, part of the CARDIAC Project, screens fifth graders in West Virginia for high cholesterol and other factors that can lead to early onset of heart disease and additional health risks. The screenings, done via blood sample, identify children who may have familial combined hypercholesterolemia or familial hypercholesterolemia, genetic conditions that predispose them to early cardiac problems. For those identified, the program offers additional evaluation and treatment to the children and their families at preventative cardiology clinics offered at five hospitals throughout the state. Since 1998, the program has screened 100,000 fifth graders and secured treatment for many children and family members identified as having a genetic predisposition to developing early-onset heart disease.

Evidence Rating (What is this?)

Suggestive: The evidence consists of post-implementation data on the total number of fifth graders screened, the number of at-risk children and parents identified and treated by the program, and the percentage of at-risk children receiving treatment.
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Developing Organizations

WVU School of Medicine
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Use By Other Organizations

Cox Monett Hospital in Monett, Missouri has been conducting a cholesterol screening program, based on the CARDIAC model, with 12 schools for the past 5 years. Nursing, dietetic, and wellness students from three local colleges/universities help with assessments, biometric measurements, and education.

Date First Implemented

1998
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Patient Population

The program serves fifth-grade students between the ages of 10 and 12.   Age > Child (6-12 years)end pp

Problem Addressed

Familial combined hypercholesterolemia and familial hypercholesterolemia are reasonably common, inherited disorders that cause elevated cholesterol levels at an early age, leading to plaque formation on the walls of arteries. If not identified and treated, children with this condition face a much higher risk of developing early-onset coronary artery disease.1 These disorders are more common among certain subpopulations, including people of Scotch-Irish descent, who have a specific genetic mutation for familial hypercholesterolemia. Selective screening of children solely based on family history does not adequately identify those in need of treatment to prevent heart disease.
  • Reasonably common disorders: Familial combined hypercholesterolemia affects roughly 1 in 100 individuals, whereas 1 in 500 individuals have familial hypercholesterolemia. The immediate relatives of a person with familial hypercholesterolemia have a 50-percent chance of having it as well. Although these disorders can only be suspected by lipoprotein analysis, confirmation of the diagnosis requires genetic testing. Other risk factors for coronary artery disease include excessive weight, high blood pressure, and metabolic syndrome.1
  • More common among people in West Virginia: Two-thirds of the original settlers of West Virginia were Scotch-Irish. This suggests that some of the excess mortality from heart disease in the state is a result of genetic influences, in addition to lifestyle habits.
  • Inadequacies of selective screening: Selective lipid screening based on family history can miss 30 to 60 percent of children with hypercholesterolemia,2 thus preventing at-risk children from getting appropriate treatment (e.g., medication, diet, exercise) that can prevent heart disease from developing later in life. Without treatment, many children with high cholesterol develop heart disease by the time they reach middle age.1

What They Did

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Description of the Innovative Activity

The Children's High Cholesterol program screens West Virginia fifth graders at their schools for high cholesterol and other factors that can lead to heart disease and additional health risks. Those identified (and their family members, if so desired) can receive treatment at one of five hospitals that offer preventative cardiology clinics throughout the state. Key components of the program include the following:
  • Distribution of consent packets and family history forms: One or 2 months before the screening is scheduled to take place, all families with children in the fifth grade receive a packet that includes an explanation of the screening program, a form on family history pertaining to heart disease, and a consent form. At their own discretion, school nurses or other individuals involved in coordinating the screenings can follow up with parents who do not return the family history and consent forms.
  • Annual screening: Once a year, all schools hold screenings for fifth graders in the early morning. Participating students are instructed not to eat to allow for collection of fasting blood samples. Each child goes to four different stations—one to measure blood pressure, another to measure height and weight, a third to document body mass index (BMI), and a fourth to draw the needed sample. Graduate and undergraduate health sciences students, trained and supervised by medical staff, conduct the screenings as part of their program's community service requirement. Certified phlebotomists from local hospitals draw the blood samples.
  • Comprehensive reports on results: Those conducting the screening use hand-held computers to enter data for each child into a secure electronic file. Subsequent laboratory results are downloaded to the file as well. Once all information has been entered, each family receives a comprehensive report with the child's results.
  • Referral for treatment: If the child has high cholesterol, low-density lipoprotein greater than 160 mg/dL, or elevated triglycerides, the family receives a letter instructing them to seek additional evaluation and treatment at one of five clinics around the state. Families also receive a brochure explaining that familial hypercholesterolemia is an inherited disorder. (The cholesterol level designated for additional evaluation is based on guidelines from the National Cholesterol Education Program of the National Heart, Lung, and Blood Institute, National Institutes of Health.)
  • Outreach clinics: The CARDIAC Project sponsors preventative cardiology clinics at local hospitals throughout the state. These clinics are conducted on the same day each month by Dr. Neal, a pediatric cardiologist. In addition, the project conducts a comprehensive preventative cardiology clinic at West Virginia University School of Medicine. Staff at this clinic include a pediatric cardiologist, an internal medicine/pediatrics physician, one nurse clinician, and a dietician.
  • Treatment and followup: Children with high cholesterol receive additional testing that involves a detailed lipoprotein analysis to determines if they have familial hypercholesterolemia. During the intake interview, staff advise all parents to have their cholesterol tested if they have not already done so and offer treatment to those parents with high cholesterol as part of the program. (Families without health insurance receive vouchers to have the test done free of charge, along with assistance in signing up for state-run insurance programs.) Treatment includes counseling on general health, nutrition, and fitness, along with cholesterol-lowering medications if deemed necessary by the clinician. Children typically receive ongoing care at 6-month intervals.
  • Cardiac health programs: As appropriate, families can also be directed to cardiac health programs in their communities, such as Camp New You. This 2-week residential camp is designed to help youth and parents identify and practice healthy lifestyle changes; it includes quarterly followup sessions held at state parks. A New You After-School Program provides various educational and problem-solving programs delivered by the West Virginia University Extension Service. BodyWorks is another community program that has been offered in two West Virginia counties by faculty of West Virginia University. It is a healthy lifestyle program for parents and their 9 to 14-year-old girls. (Go to Tools and Other Resources for more information about BodyWorks.)

Context of the Innovation

Based on the high rates of coronary vascular disease in West Virginia and his work as a pediatric cardiologist, Dr. William Neal implemented the CARDIAC Project and the Children's High Cholesterol Program to identify children at risk for early heart disease and to raise awareness of other risk factors for heart disease and diabetes in youth. To start the program, Dr. Neal used funding for preventative cardiology from the West Virginia University School of Medicine, where he serves as a faculty member. Once the program became operational, he applied to the Centers for Disease Control and Prevention (CDC) for funding, receiving a 2-year grant to continue his work. Through this grant and a 5-year grant from the National Heart, Lung, and Blood Institute (NHLBI, part of the National Institutes of Health), he has been able to double the number of participating counties each year. Now in its 16th year and fully funded by the state, the CARDIAC project has expanded to also address childhood obesity and diabetes.

Did It Work?

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Results

Since 1998, the program has screened 100,000 fifth graders and successfully secured treatment for the majority of children and family members identified as having a genetic predisposition to early-onset heart disease.
  • Significant number of children identified, with majority treated: Since the program began, 100 children with familial hypercholesterolemia have been identified and referred to ongoing treatment at a clinic. Without the screening program, these children would almost certainly not have been identified or given treatment at this early age. Only 15 percent of children identified with familial hypercholesterolemia did not seek treatment.
  • Many family members also identified and treated: Since the program began, 130 parents of children with a genetic predisposition have sought screening at the clinic and been identified as also having the condition, thus allowing them to receive treatment as well. Project staff report that many of these adults did not previously know they had a genetic tendency towards high cholesterol.

Evidence Rating (What is this?)

Suggestive: The evidence consists of post-implementation data on the total number of fifth graders screened, the number of at-risk children and parents identified and treated by the program, and the percentage of at-risk children receiving treatment.

How They Did It

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Planning and Development Process

Key elements in the planning and development process included the following:
  • Obtaining support from school superintendents: In West Virginia, school superintendents have the authority to allow health interventions in the public schools. Using local champions, Dr. Neal convinced three superintendents of the importance of the screenings.
  • Identifying individuals to organize and conduct screenings: Building on an existing relationship, Dr. Neal obtained the approval and support of county site coordinators within the West Virginia Rural Health Education Partnership to use graduate and undergraduate students working on degrees in the health sciences to help conduct the screenings. In many instances, local hospitals donated the time of their phlebotomists. Local partnership coordinators worked with school nurses to organize and implement the screenings.
  • Developing screening protocol: To accurately measure lipid levels, children needed to be fasting. To make the fasting process as easy as possible on children and their parents, a decision was made to hold screenings early in the morning, between 7 a.m. and 7:30 a.m.
  • Arranging electronic transfer of results: Dr. Neal worked with local testing laboratories to arrange for them to electronically transfer results to each child's medical record.
  • Training surveillance staff: CARDIAC staff developed detailed procedures for each screening station (e.g., blood pressure, height/weight, BMI, blood draw). The partnership coordinator instructs all student volunteers to review this information before the sessions. Student volunteers also must pass a test demonstrating knowledge of Health Insurance Portability and Accountability Act regulations.
  • Developing consent packet: Working with the West Virginia University Institutional Review Board for the Protection of Human Subjects, Dr. Neal developed an information packet that includes a personal letter explaining the project and the procedures to take place on screening day, parental consent/child assent forms, and a parental self-report family history questionnaire.
  • Creating followup clinics: Dr. Neal partnered with hospitals and local health care providers throughout the state to set up clinics to treat children and their families identified as being at risk.

Resources Used and Skills Needed

  • Staffing: The CARDIAC Project, which administers the Children's High Cholesterol Program, has a full-time staff of 16 people, including a director, several associate directors, Web site administrator/database managers, several area coordinators responsible for oversight in assigned geographic regions of West Virginia, a biostatistician, a registered dietitian, a data technician, a program specialist, and an administrative assistant. Many of these individuals spend part of their time on the cholesterol program. In addition, two CARDIAC Project staff dedicate most of their time to the cholesterol screening program—a pediatric cardiologist (Dr. Neal) who oversees the children's lipid clinics and a coordinator for the five rotating clinics, which are staffed by Dr. Neal. Two nurse clinicians, an adolescent physician, a dietitian, and Dr. Neal staff the comprehensive preventative cardiology clinic at West Virginia University. A research nurse has recently been hired to assist Dr. Neal in the West Virginia Familial Hypercholesterolemia Project in screening family members of individuals with probable familial hypercholesterolemia (updated December 2013).
  • Costs: The annual cost of all CARDIAC surveillance and intervention activities is $500,000.
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Funding Sources

Centers for Disease Control and Prevention; National Heart, Lung, and Blood Institute (U.S.); Robert Wood Johnson Foundation; West Virginia Department of Health and Human Resources' Bureau for Public Health; West Virginia University School of Medicine
As noted, the West Virginia University School of Medicine provided seed money for the Children's High Cholesterol Program out of funds budgeted for preventative cardiology, and the program subsequently received grants from the Centers for Disease Control and Prevention, National Heart, Lung, and Blood Institute, and Robert Wood Johnson Foundation. At this time, the state of West Virginia funds all CARDIAC Project programs through a line-item appropriation in the annual budget, which is administered through the Department of Health and Human Resources' Bureau for Public Health. In addition, the CARDIAC Project has recently received internal funding from the West Virginia University School of Medicine to implement the West Virginia Familial Hypercholesterolemia Project, which intervenes with individuals most at-risk due to their genetic makeup, including family members of individuals with probable familial hypercholesterolemia.end fs

Tools and Other Resources

More information about the Camp New You program can be found at http://www.campnewyou.org.

BodyWorks was developed by the U.S. Department of Health and Human Services, Office on Women's Health to train trainers to conduct 10 weekly sessions for mothers and daughters to improve family nutrition and activity habits. It also provides a free toolkit that includes resources and additional information for families to use at home. For more information visit http://www.womenshealth.gov/bodyworks/.

Adoption Considerations

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Getting Started with This Innovation

  • Identify local champions: The project could not have taken place without permission to conduct the screenings in the public schools. Securing such permission often requires the support of local champions with access to public school officials and an understanding of the benefits of screening and treating children with a genetic predisposition to early onset heart disease.
  • Secure initial funding: As noted, this program initially was launched with seed money from the university, along with grant funding from government agencies and foundations.
  • Organize screening process: In addition to developing screening procedures, this type of project requires the participation of paid staff and volunteers to organize, conduct, and followup on the screenings.
  • Provide treatment: Screening alone does little good without the ability to treat those identified as being at risk. Consequently, easily accessible treatment must be available, with plans in place to address the provision of services to those without insurance.

Sustaining This Innovation

  • Identify champions to support project funding: The identification and treatment of children at risk for heart disease is a long-term endeavor that entails numerous fixed expenses related to operation and management. Therefore, program planners need to obtain support from individuals in a position to influence elected officials, public administrators, and other individuals/organizations that can allocate public or private monies to sustain the program. As this program evolved over time, leaders have used their influence to obtain ongoing financial support from the state legislature, thus reducing the need to continue searching for grants and other sources of time-limited support.
  • Monitor ongoing participation rates: Project planners should establish an acceptable baseline for the percentage of children they expect to participate, and then monitor ongoing participation to ensure that such goals have been met or exceeded. This type of monitoring can help to identify and address factors that might be limiting participation.
  • Monitor and report on program impact to justify ongoing funding: Monitor and periodically report on the number of individuals and families identified and treated as a result of the program. This type of information can serve to maintain the support of those funding the initiative (in this case, the West Virginia legislature). Over time, systems should also be developed to track the long-term outcomes of those treated.
  • Make treatment accessible and affordable: The program's success depends on offering easy access to affordable treatment. To that end, the CARDIAC project rotates its preventative cardiology clinics at hospitals throughout the state, provides vouchers for uninsured adults to be screened, and helps families who do not have health insurance enroll in state-funded programs.
  • Consider expansion to other community-based preventive interventions: As funding and other resources allow, develop additional programs promoting healthy lifestyles, such as components addressing nutrition and fitness.

Spreading This Innovation

The CARDIAC Project has recently affiliated with the Familial Hypercholesterolemia Foundation (http://thefhfoundation.org/) to raise awareness of familial hypercholesterolemia nationwide and spur the screening of relatives of affected individuals. The CARDIAC Project also encourages its patients to join the Cascade Familial Hypercholesterolemia Registry conducted by Duke University Health System (https://cascadefh.asqsystems.net/static/screening/privacy.html).

Use By Other Organizations

Cox Monett Hospital in Monett, Missouri has been conducting a cholesterol screening program, based on the CARDIAC model, with 12 schools for the past 5 years. Nursing, dietetic, and wellness students from three local colleges/universities help with assessments, biometric measurements, and education.

More Information

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Contact the Innovator

William A. Neal, MD
Professor of Pediatrics
James H. Walker Chair of Preventive Cardiology
WVU School of Medicine
Morgantown, WV
Phone: (304) 293-2416
Fax: (304) 293-1409
E-mail: wneal@hsc.wvu.edu

Innovator Disclosures

Dr. Neal has not indicated whether he has financial interests or business/professional affiliations relevant to the work described in this profile; however, information on funders is available in the Funding Sources section.

References/Related Articles

Ritchie SK, Murphy EC, Ice C, et al. Universal versus targeted blood cholesterol screening among youth: the CARDIAC project. Pediatrics. 2010;126(2):260-5. Epub 2010 Jul 12. [PubMed] Available at: http://pediatrics.aappublications.org/content/126/2/260.full.html.

Ice CL, Cottrell L, Murphy E, et al. Metabolic syndrome in 5th grade children with acanthosis nigricans: results from the Coronary Artery Risk Detection in Appalachian Communities project. World J Pediatr. 2009;5:23-30. Available at: http://www.wjpch.com/article.asp?type_i=2&article_id=305#305

Ice CL, Cottrell L, Neal W. (in press). The use of the body-mass index as a surrogate measure of cardiovascular risk factor clustering in fifth-grade West Virginia children: Results from the Coronary Artery Risk Detection in Appalachian Communities project. Int J Pediatr Obes.

For additional information on the National Cholesterol Education Program go to http://www.nhlbi.nih.gov/about/ncep/.

To read more about recent news related to the CARDIAC Project go to http://www.cardiacwv.org/

Footnotes

1 CARDIAC Project Web site. Available at: http://cardiacwv.org/fh.php
2 Daniels SR, Greer FR, Committee on Nutrition. Lipid screening and cardiovascular health in childhood. Pediatrics. 2008;122(1):198–208. [PubMed]
Comment on this Innovation

Disclaimer: The inclusion of an innovation in the Innovations Exchange does not constitute or imply an endorsement by the U.S. Department of Health and Human Services, the Agency for Healthcare Research and Quality, or Westat of the innovation or of the submitter or developer of the innovation. Read more.

Original publication: December 22, 2010.
Original publication indicates the date the profile was first posted to the Innovations Exchange.

Last updated: January 15, 2014.
Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.

Date verified by innovator: November 23, 2013.
Date verified by innovator indicates the most recent date the innovator provided feedback during the annual review process. The innovator is invited to review, update, and verify the profile annually.