Family-linked treatment may benefit children with cardiomyopathy-related chronic heart disease

A newly published national study by the Children's Hospital of Michigan and Wayne State University School of Medicine researchers shows that "parental impact and family functioning" become increasingly abnormal when children with cardiomyopathy-related chronic heart disease are more severely ill than children less affected by the disease.
The findings, published in the March 2016 issue of the Journal of Pediatrics, appear to suggest that "chronic heart disease [caused by cardiomyopathy] is in many ways a family disease," and that finding ways to include the entire family in the affected child's treatment might be a more effective approach for many pediatric heart disease survivors.
The study raises important questions for patients and pediatric cardiologists alike - and could eventually play a role in expanding the standard of care for patients who survive early cardiomyopathy-related heart failure, said the researchers.
"This study shows that the parental impact and family functioning [became] highly abnormal the sicker a child was," said senior author and principal investigator of the study. "Further, this study showed that the more abnormal these functional status and quality of life parameters were, the less likely the child was to have a good outcome.
"These findings suggested that using these parameters to assess patients during regular visits may identify high-risk children and families," he added. "But they also show we don't follow a patient's family as a 'chronic-illness family' in a family-based care model - and a good next step may be to see if doing that is helpful."
The study was based in part on a review of more than 300 questionnaires completed by the parents of cardiomyopathy-linked chronic heart disease survivors. "The data we gathered clearly suggest that the level of functioning and the quality of life of these patients are associated with the severity of their illness and whether they will ultimately fail medical management of their cardiomyopathy," Dr. Lipshultz said. "Since families who felt worse were significantly more likely to have children who needed a heart transplant or who died, this may mean that how the family reacts to this illness could be important."
"As the study implies, this is a disease which often has a large effect on family functioning," he said. "But when you ask, do we have a program of chronic-illness management in place for these kids, the answer all too often is: absolutely not."
"All too frequently, pediatric patients wind up visiting their cardiologist for only short periods of time, and the result, perhaps, is that their medications may be adjusted a little and then they're sent on their way," he added. "But the study seems to suggest that this fragmented approach to caring for these chronically ill patients simply isn't good enough."