Congenital Heart Defect Patients Lack Adequate Adult Care
Tuesday June 2, 2009
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A study found 63% of the 158 patients seeking care at an adult congenital heart clinic from 2002 to 2005, had left pediatric care two or more years before seeking adult cardiac follow up.
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"Adults with congenital heart defects are a fairly vulnerable population," says Mary Krolikowski, APN, clinical resource nurse at the Herma Heart Center Adult Congenital Heart Disease Program at the Medical College of Wisconsin in Milwaukee.
About 1 million American adults and 800,000 children live with congenital heart diseases, according to the Adult Congenital Heart Association. Only recently, with improved corrective surgeries, have youngsters with a congenital heart defect lived to adulthood, and caring for them has developed into a cardiology subspecialty.
"This is a relatively new field," says Tish Ferazzi, RN, a cardiology clinic nurse at the University of Kansas Hospital in Kansas City. "Now for the first time, there are more adults with congenital disease than children."
Many adults with congenital defects do not receive adequate follow-up care. A study by physicians at the University of Colorado Health Sciences Center in Denver, which was reported in the March 2008 International Journal of Cardiology, found 63% of the 158 patients seeking care at its adult congenital heart clinic from 2002 to 2005 had left pediatric care two or more years before seeking adult cardiac follow up. The median duration was 10 years, and the most common reason for not seeking care was they were told they didn't need follow up, which clinicians now know is not the case.
"We need to make sure they know they need follow up and are at risk for things we now know about," says Mary Brandon, RN, BSN, a clinical nurse at the Adult Congenital Heart Disease Clinic at the University of Colorado Hospital in Aurora. "They are more prone to an arrhythmia ... and have a variety of complications, depending on their initial defect."
"In all of the congenital problems there are a variety of long-term complications that can be associated with the natural history of the diseases," says Lindsey Katzmark, RN, APNP, a nurse practitioner at the Herma Heart Center.
Jane Sowinski, RN, program coordinator at the Herma Heart Center, adds current repair techniques were not used years ago, and older procedures may not provide the long-term success expected at that time.
Survivors have a greater risk than other people of developing additional heart problems because of changing blood flow patterns in the heart, Krolikowski explains. Long-term problems include rhythm disturbances, valve problems, heart failure, endocarditis, and stroke.
"When you have a heart with abnormal anatomy you will have abnormal stresses and strains on the corrected heart, and that will add additional challenges that can threaten the longevity of the corrections," says Ann Petlin, RN, MSN, CCRN-CSC, CCNS, a clinical nurse specialist in cardiac thoracic surgery at Barnes-Jewish Hospital in St. Louis. Yet, patients with congenital heart defects often do not view themselves as sick.
Patients may ignore subtle symptoms of a worsening heart condition. "If they had surgery in the 1960s or 1970s, they may have been told they were fixed," Brandon says. "That's not the case. Twenty years after surgery, these folks are adults [with] new problems and need repeat surgeries they didn't foresee in the early 1970s."
"The survey is to determine more specifically the reasons these folks are lost to follow up," Krolikowski says. "The cardiology community believes being lost to follow up may put them at risk of more serious heart disease down the road."
University of Colorado researchers reported patients with a lapse in medical care have a greater likelihood of developing secondary cardiac abnormalities and an urgent need for intervention.
HEART-ACHD also aims to pinpoint the prevalence of lapses in specialized congenital heart disease care, identify barriers to care, assess whether a targeted educational intervention is successful in improving patients' self-care, and work to engage them in future research studies.
The centers will enroll new patients who complete a survey. Nurses will educate patients about their conditions and complete the ACHA personal health passport, a mini-booklet with a removable emergency wallet card and information about the patient's condition, surgeries, and diagnostic tests, such as recent ECGs.
Some patients try to stay with their pediatric cardiologist, but that also presents challenges. These patients require the skills of a clinical team with experience in adult comorbidities, such as diabetes or hypertension, and can offer guidance about employment, pregnancy, and physical activity.
The centers work closely with pediatric providers to ensure a smooth transition of care as the patient reaches adulthood. "They have to start taking responsibility for their own health, and many don't understand their disease process," Ferazzi says. "Their parents have always taken care if it."
Frequently, patients present to the centers when they start to develop problems, such as fatigue, exercise intolerance, chest pain, shortness of breath, or palpitations. Clinicians at the specialized centers obtain past medical records and work up patients to determine their current condition, evaluate blood flow through the heart, and identify structures created or remnants of the original congenital condition. The team may manage the patients medically or recommend additional surgeries or cardiac interventions.
For instance, patients with tetralogy of Fallot might need a pulmonary valve replacement when fully grown. "A lot of them have baffles that narrow over time," says Diane Kovich, RN, a cardiology clinic nurse at the University of Kansas Hospital, explaining physicians may be able to open them and place stents. "Some are re-dos times three or four."
The nurses often work as part of an interdisciplinary team that also helps patients with anxiety and the psychological issues of dealing with an uncertain future and the financial issues associated with care.
"They can live into adulthood and live a full life," Katzmark says. "They just need to be followed on a regular basis by someone trained in adult congenital heart disease that can understand and look for the complications that can develop."
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