While a recent article (J Pediatr 2013; 162: 993-98) on spina bifida and its effect on quality of life provide useful information, the accompanying editorial by John Freeman (J Pediatr 2013; 162: 894-95) had much broader implications for me.
The referenced article provides data showing the effects of spina bifida on quality of life QOL), even in those who reported their current health as good. The tools that the investigators used for 40 youth and 13 young adults were the HUI-3 and AQoL. Both of these tools correlated health-related QOL (HR-QOL) and the level of the anatomic lesion; those with thoracic/higher lesions had worse HR-QOL.
Some of the points made by Dr. Freeman:
- Quote at start: “Health: A state of complete physical, mental, and social well-being and not just the absence of sickness or frailty.” –World Health Organization
- In 2004, he followed up with two patients who he had presumed to be quite successful. Both “were living at home, wheelchair-bound, with high paraplegias. Both were community college graduates and employed….When I asked them what I should tell parents delivering a newborn with spina bifida, each replied, ‘I wish I had never been born.’ I was shocked.”
- He notes that the referenced article had a low participation rate (39%) which could introduce significant biases. “Were the respondents those with greater or less disability?”
- Conclusion: “I will not presume to have answers to these questions but propose further discussion of the quality-of-life issues…on decisions regarding early treatment of spina bifida.”
These studies make it clear that some children with spina bifida, particularly those with higher lesions, have poor HR-QOL. The broader implication is that many children/adults who we think are doing pretty well do not see it that way. Trying to determine what the future holds for children with chronic health problems in infancy is difficult. Even in the most severe diseases, most parents want everything done. Will this type of information change anything?