Children with cardiomyopathy may benefit from whole family care

21st March 2016

Doctors treating children with cardiomyopathy need to consider the effect on the whole family, says a new study from America.

Researchers, who questioned 300 parents with affected children, said the emotional effects on the parents and how the family functioned became increasingly problematic in families where children were severely affected.

Since families who felt worse were significantly more likely to have children who needed a heart transplant or who had died, this may mean that how the family reacts to the illness could be important.

The team, from the Children’s Hospital of Michigan and Wayne State University of Medicine, said the findings raised important questions for families and children’s doctors alike, and could play a role in expanding care for families.

The hospital’s chief paediatrician Dr Steven Lipshultz said the study also showed the more problems the family had coping, the less likely the child was to do well. There was a clear association between poor health in  a child and “impaired health-related quality of life and functional status”. So measuring the effect long term illness had on the family might be helpful in improving how well the children did.

The results, reported in the Journal of Paediatrics, argued that finding ways to include the whole family in the treatment might be a more effective approach. This could include comprehensive medical management and a ‘medical home’ for the entire family that could include a cardiologist, a nurse practitioner, a social worker, a nutritionist and perhaps a psychologist.

Dr Lipshultz  said that all too frequently children visited their cardiologists for only short periods of time. Their medications might be adjusted a little and then they were sent on their way. The study seemed to suggest that this fragmented approach to caring for these young patients simply wasn’t good enough.

He suggested that during family visits to hospital, the medical team could assess how well a family was coping and identify high-risk children and their families.

The study was based partly on a review of more than 300 questionnaires completed by families with affected children. Other data came from information collected over the last 20 years by a children’s cardiomyopathy register.

Dr Lipshultz added: “We currently do not routinely assess how families of children with cardiomyopathy are emotionally responding to what their children are going through. However, based on the findings of this study this should become the new global standard of clinical care since the early identification of families with functional impairment allows for the provision of specialised services early in the course of these diseases.”

But he point out that a treatment that included assessment of and assistance to a patient’s family still needed to be directly studied to gauge its effectiveness.

For more details, see here.