Parents Informed About Treatment for Their SMA Children, But Still Want Better Communication with Health Care Staff, Survey Shows

When caring for a child with spinal muscular atrophy (SMA), health care staff do not make treatment decisions without informing parents, but there’s still room for improvement to provide information about the disease, treatment options, and prognosis for parents to feel confident about their decisions, a Danish survey reports.

The research article, “Parents’ Experiences of Information and Decision Making in the Care of Their Child With Severe Spinal Muscular Atrophy: A Population Survey,” was published in the Journal of Child Neurology.

Health care staff and parents often need to make difficult decisions for the well-being or survival of children with spinal muscular atrophy, especially in severe cases. Treatment options for these children are increasing, so information, communication, and planning are critical to enable the best decision-making for each family.

Few studies have been conducted on parents’ experiences of the care given to their children with severe spinal muscular atrophy. Most of these are qualitative studies with very small samples and focus on the care provided and the impact on the parent.

A previous Swedish population-based study, conducted by the same authors of this research paper, explored parents’ experiences of the care of their child with severe spinal muscular atrophy. To build on this, the same team performed a similar population-based study in Denmark but this time, they explored the experiences and wishes of parents about information given and decision-making throughout the course of their children’s severe illness.

The survey, conducted in 2015, covered the parent population of SMA type 1 and 2 children in Denmark born and diagnosed from 2003 to 2013. Among the 47 parents identified, 34 parents of 21 children participated. Eleven of them lived with a child with severe SMA (nonbereaved parents), and 23 had lost a child to severe SMA (bereaved parents).

The researchers observed that:

• Four out of five parents were confident about the decisions that were made, but 5 of 34 parents were not
• One-third of the parents indicated that they had not received information that helped them to understand what SMA entails
• Most (70%) bereaved parents knew that their child would have a short life, but more than half of the parents stated they did not know when death was imminent (57%)
• Most of the bereaved parents who had wishes about how and where their child died had these wishes fulfilled.

The results showed that health care staff did not proceed with any treatments without informing the parents first. Areas for improvement include providing information to parents about the diagnosis, treatment options, and disease prognosis of their children with SMA.

“Independently of the choice to prolong life or not, topics similar to those we investigated in this study will need to be considered by health care staff and parents,” the researchers said. “The options of palliative care, including advance care planning, might benefit these parents ­­­­— and their child ­­­­— by facilitating communication between all involved parties about diagnosis, prognosis, future treatment, and (end-of-life) decision making,” they concluded.