When You’re 24, 34 … 84?
The consequences of success affect patients at the ends of the age spectrum: the very young and the very old. As infants born with congenital heart problems survive to adulthood and their great-grandparents survive heart attacks or reach the age at which heart attacks begin, cardiologists must deal with the care delivered to these very different populations of people.
Economics play very different roles in the care of the 2 populations. “Where can medical care do the most good for the health of the population?” asked Dutch health economist Barend van Hout, PhD, at the 22nd Congress of the European Society of Cardiology in Amsterdam. “It is at the beginning and at the end. Whatever you can offer from the medical community, the best effects are at the beginning and the end.”
The effects of the success in caring for infants with congenital heart defects are now extending into the third and fourth decades of these patients’ lives, said John Deanfield, MD, professor of cardiology at Great Almonds Street Hospital in London. In the 1960s, when heart surgery to care for such children was just beginning, “the fate of children with heart disease was terrible. Happily, the situation for children has been transformed by the spectacular success of pediatric cardiology and surgery. Eighty percent of children born with heart disease can be expected to survive to adulthood,” he said. “However, it has created a new medical problem. There is now a population of adult patients with heart disease who need the same amount of care that they needed in earlier life. We must take care of these demanding patients who need care and deserve our efforts to integrate them into society.”
A working group on congenital heart disease is expected to come forth soon with recommendations on the treatment of such patients, said Dr Deanfield. A similar group is working on recommendations in the United States.
Barbara Mulder, MD, a clinical cardiologist at the Academic Medical Center in Amsterdam, said most of patients who have undergone serious heart surgery as infants have residual defects and because of that, such patients require specialized care for the rest of their lives. She was part of a group that wrote guidelines for the care of such patients in the Netherlands. In addition, her group is developing a registry of all adults born with congenital heart defects to better understand the ongoing needs of such patients.
Approximately 15% to 20% of adult patients with congenital heart disease need optimal medical care to enjoy good quality lives, said Patrizia Presbitero, MD, of Primario de Cardiologia at the Instituto Clinico Humanitas in Milan, Italy. The type of care such patients need varies by country and healthcare system and “is often not adequate.”
Dr Presbitero noted that such patients often need care for cardiac rhythm disturbances that can be both dangerous and difficult to treat. Often, adult patients who have had surgery for congenital heart disease have scars in the heart that make it difficult to perform catheter ablation, which can interrupt the electrical circuit in the heart that causes the rhythm disturbance. Such treatments should be done in special centers that are trained in caring for such patients.
There are, on occasion, residual defects from previous surgery, such as holes left open between the left and right sides of the organ or a narrowing of veins, arteries, or valves that must be opened with surgery or percutaneous procedures.
Some patients have not received surgery for a variety of reasons, and they need continuous attention because of “chronic cyanosis,” said Dr Presbitero. However, the issues involved in treating patients whose conditions are more close to normal are often the most difficult.
Pregnancy raises a number of issues, both genetic and physical. “We have to underline, however, that 90% of patients with congenital heart disease, operated or not, come through pregnancy without big problems if they are well looked after, even if many cardiologists advise most of these women against pregnancy,” noted Dr Presbitero. However, some problems do preclude pregnancy. Patients who are very sick and whose heart defects cannot be corrected should probably not become pregnant, and patients with pulmonary hypertension should also avoid pregnancy.
Another issue is the possibility of passing the genetic defect that caused the heart problem on to the next generation, said Dr Presbitero. Often, a counselor will tell a patient that his or her probability of transmitting a heart defect is 10 times that of a normal person. “When we say 10 times, we mean there is an 8% chance of heart disease,” she said. “That means there is a 92% possibility of having a normal child.” The risk of transmitting a genetic defect varies with the disease involved as well. Often, prenatal diagnosis offers reassurance to parents that the child in utero is normal.
“This is an exciting new area of medicine,” said Dr Deanfield. “There are no texts to tell us what to do with these patients. It is Star Trek medicine. These patients weren’t around 20 years ago.”
However, social systems have yet to catch up with the trend. Some youngsters with totally corrected heart problems cannot obtain life insurance in the United Kingdom, noted Dr Deanfield. That means the individual cannot get a mortgage and, thus, that that person cannot buy a house.
Often, patients with corrected heart defects are discriminated against in hiring because employers do not want to risk hiring someone who has what they see as a potential health problem.
Health systems often make it difficult for such patients to receive the care they need, said Dr Deanfield. In the United Kingdom, patients are often referred to their local cardiologists, many of whom have never treated a patient with a congenital defect. “They always feel that they will have a go,” he said. “They like taking care of interesting patients.” However, such situations often result in disasters for the patient.
In the United States, Arthur Garson, MD, MPH, associate professor of pediatric cardiology, senior vice president and dean for academic operations at Baylor College of Medicine, had concluded that the cost of follow-up care for patients with congenital heart disease was cheap. “Then he realized that they didn’t see a doctor until they were moribund and ended up in the emergency department,” said Dr Deanfield. “Their health care didn’t provide for follow-up.”
While some cardiologists debated the best way to give care to the young survivors of inherited heart disease, others considered how much health care should be given to the very elderly patient with heart disease. The number of people in Germany over the age of 80 who have coronary artery disease has increased by 150% in the past 2 decades, said Udo Sechtem, MD, professor at Abteilung fur Kardiologie, Robert Bosch Krankenhaus in Stuttgart, Germany. Death from cardiovascular disease is the major killer of people over the age of 65. In the next 5 years, cardiovascular disease will become the most common cause of disability. “The elderly patient with heart failure who has suffered a stroke will become a major burden to society,” he noted.
At the same time, the efficacy of therapy has gone up, even in the older population. Yet, doctors and health economists most often discuss the least costly items of the equation: drugs and hospitalization. These costs “are small when compared to the costs to families, churches, and welfare organizations,” Dr Sechtem said. “They are only 15% to 20% of the total cost to society.”
Dr Sechtem said that he agrees with experts who say “we can do the most in the elderly because they represent the greatest population at risk.” Often, the interventions are cheap: lowering blood pressure or cholesterol.
“These will save a lot of money in the end because we will relieve the burden of disability,” said Dr Sechtem. Economist van Hout agreed that certain services for the elderly make sense. However, he warned that preventing disability from cardiovascular disease is no surety that people will never become disabled, although their period of disability might be shorter.
World Cardiovascular Disease Burden
The World Heart Federation reminded the 22nd Congress of the European Congress of Cardiology that cardiovascular disease remains a major problem for the entire globe, including developing countries. To address this issue, the federation has formed an International Task Force on Cardiovascular Disease Prevention.
The first World Health Day is set for September 24, 2000, said Antonio Bayes de Luna, past president of the federation. The theme of the commemorative day this year is “I love my heart. Let it beat.”
Dr Bayes de Luna pointed out that in some areas of the world, the situation is dire. “The situation in Mozambique is drastic: there is presently only one cardiologist per 5 million inhabitants.”
The first meeting of the prevention task force of the federation met in Amsterdam to bring international organizations together in a common agenda for cardiovascular disease prevention. “Unless we as professionals speak with one voice, it will be difficult to get politicians to make changes that are necessary to reduce the burden of disease,” he said.
- Copyright © 2000 by American Heart Association