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Heart disease and quality of life: what do patients, parents, and health care providers really think?


Thanks to advances in medical science, children and teenagers with heart disease are surviving at higher rates than ever before. However, as with survivors of other childhood diseases like brain tumours or chronic conditions like diabetes, having a childhood heart disease influences quality of life.

Health-related quality of life is often assessed in a number of dimensions including physical issues, psychological function, and social activity. A recent study published in the journal Pediatrics found that children and youth with heart disease were most concerned about physical issues; by contrast, health care providers were more concerned with how heart disease affected their patients in the psychological dimension.

"Health care providers thought the emotional aspect would be the main impact on quality of life. However, this was not really the case with patients," says Dr. Andrew Warren, head of the division of pediatric cardiology at IWK Health Centre in Halifax, Nova Scotia. "It could be that patients are amazingly resilient and not as emotionally fragile as we think they are."

About the study

This study involved 14 focus groups of six to 10 participants each, with the primary goal of identifying, through group consensus, their most important thoughts on a series of topics and questions. The focus groups were broken into five categories: children with heart disease, teenagers with heart disease, parents of children with heart disease, parents of teenagers with heart disease, and health care providers. They were presented with a list of items that might affect quality of life, and asked to vote on which items they thought had the most impact on quality of life. Each item they were asked to vote on fell into one of the following dimensions: physical, psychological, social, or school.

Heart disease and quality of life: the physical dimension

Participants were asked about the impact of heart disease on such things as physical limitations (such as not being able to play sports), being in pain, missing recess, being tired, gaining weight due to inactivity, and the burden of having to take medication.

Children said that physical items most affected their quality of life. Both children and teenagers endorsed items in the physical dimension more frequently than did their parents and health care providers.

All groups said that physical limitations affected quality of life. Dr. Warren agrees that the restriction of sports can be a real source of frustration for children and teenagers. "One of the hardest things to do is talk about exercise restrictions. Exercise is so much a part of play, and play is a big part of their lives, so we are in effect handicapping them by telling them they can't exercise.

Dr. Warren suggests that doctors and parents should focus on what young people with heart disease can do, not what they cannot. "Teenage boys, for example, all want to lift weights. It may not be advisable to lift weights, but they can still stay active by playing golf or swimming."

In terms of other physical items, children, teenagers, and their parents said that having to take medication had a major impact on quality of life.

Heart disease and quality of life: the psychological dimension

Participants were asked about  such things as embarrassment about the scar from surgery, stigma, being afraid to go back to the hospital, feeling that life is unfair, feeling helpless, being self-destructive, worrying about the future, and fear of death.

Children were the least concerned of all groups, by a significant margin, with items in the psychological dimension. Health care providers for children were more concerned about these items than children and their parents. Likewise, health care providers for teenagers were more interested in the psychological items than were the teenagers themselves or their parents.

Children, their parents, and health care providers for children and teenagers were all concerned about the change in appearance caused by having a scar from surgery. Fear of death affected the quality of life of teenagers. Parents of teenagers said they thought the heart disease made their teenager feel handicapped.

Health care providers for children were concerned about psychological items such as anxiety at being separated from parents while hospitalized; fear of procedures and needles; and lack of understanding about why they were sick. Health care providers for teenagers with heart disease were concerned about items such as loss of control of privacy.

Interestingly, teenagers mentioned some positive psychological items such as not taking life for granted and being a stronger person as a result of having heart disease. Some parents observed that their child was more compassionate as a result of having heart disease.

Heart disease and quality of life: the social dimension

Participants were asked to rate the impact of heart disease on aspects of the social dimension, such as having a hard time making friends, being called "different," excluded, or teased by peers, losing friends, having others feel uncomfortable, being treated differently by teachers and coaches, and getting unwanted attention.

Children were less concerned about items in the social dimension than their parents but more concerned than their health care providers. By contrast, teenagers and their parents voted for items in the social dimension more often than their health care providers, perhaps because of the developmental importance of peers and social life to teenagers.

Children and their parents mentioned concerns about receiving special treatment. Teenagers frequently endorsed that they felt different from their peers.

Heart disease and quality of life: the school dimension

Participants were also asked to evaluate school-related items, such as missing school, being held back, having trouble writing, needing a teacher's aid, being too tired to do homework, and having poor grades due to missing school.

Children and their health care providers endorsed items in the school dimension three times more frequently than parents. Teenagers, on the other hand, were far less concerned with school items than their parents or health care providers.

Limitations of the study

According to Dr. Warren, the findings in this study may not be applicable to every young person who has heart disease. "The number of participants was small. There was also a wide array of patients included in the study, ranging from minor conditions like supraventricular tachycardia to major conditions like heart transplant. So it was really a mixed bag of patients and I would say the results are preliminary."

"Overall," Dr. Warren says, "the study highlights the importance of listening to patients and finding out what is important to them. What doctors think is important may not be important to patients. Doctors need to keep listening to what their patients are saying.


Marino BS, Tomlinson RS, Drotar D, et al. Quality-of-life concerns differs among patients, parents, and medical providers in children and adolescents with congenital and acquired heart disease. Pediatrics 2009;123:e708-e715.