Huhtala M, et al. Health-related quality of life in very low birth weight children at nearly eight years of age. Acta Paediatrica. 2015
This study from Finland showed an excellent quality of life of former VLBW infants at “nearly 8 years of age”. The QoL scores were no different to full term babies. VLBW infants with major morbidities did however have lower scores in some domains, specifically, “eating, speaking clearly, going to the toilet, learning and concentrating at school and dissatisfaction with the subjects appearance”. As they appropriately state, this means that we need to work harder to avoid those morbidities. Which are: cerebral palsy, visual impairment and “obstructive airways disease”.
It would have been nice to see a little more breakdown by BW and GA. In the overall cohort, the mean GA was 29 weeks, mean BW 1060 gms. It is great news that these babies are doing so well. But, as you’ve noted in the past, Keith, it would be nice to know whether all babies at the borderline of viability were treated. Or was this population of survivors carefully selected?
It is great news that most babies are doing well, but be wary of ‘Disability Paradox”* when interpreting QOL related studies. There is still a lot of work to do.
*G.L. Albrecht, P.J. Devlieger / Social Science & Medicine 48 (1999) 977±988
The disability paradox comment is interesting. Should we “wary” of this paradox? is it a even more of a paradox to us, non-disabled over-priviledged SES health-care providers?
To most disabled individuals and their families, it is not a paradox, it is the life they live and live well with.
Instead of calling it a paradox over and over and saying that “with lemons they make lemonade” we should actually start investigating resilience, adaptation, coping mechanism of parents in neonatology and examine how to optimize their experience.
And celebrate it.