Long term outcomes, Quality of Life.

I heard a presentation of this excellent study when I was in Melbourne last year, and have been waiting for it to be available in print.

There are now about 30 studies of quality of life in subjects who were formerly very preterm babies, as well as a couple of systematic reviews. Many of those studies have been from regional or national samples, and the results have really challenged how we see the lives of our former patients.

This new study is from a different cohort to those previous studies, a cohort which has been studied before for a number of different measures at 2,5, and 8 years of age. It is a cohort which is more recent than many others, born in 1991-1992.

Roberts G, Burnett AC, Lee KJ, Cheong J, Wood SJ, Anderson PJ, Doyle LW, Victorian Infant Collaborative Study G: Quality of life at age 18 years after extremely preterm birth in the post-surfactant era. The Journal of pediatrics 2013.

As in the other studies there is very little difference between any of the quality of life outcomes of the former extremely preterm or extremely low birth weight babies and the term controls. The only differences were a trivial difference in dexterity score, and a slightly lower score for physical functioning. The EP/ELBW patients were also less likely to be sexually active and less likely to get drunk.

Of major importance also, there was no correlation between quality of life and completed weeks of gestational age. As this figure shows:

QUality of life

There are not many infants at the lowest gestational ages, but no sign of an effect on quality of life.

The systematic reviews that I mentioned earlier also show no correlation between gestational age and quality of life; which I think should make us question guidelines for active treatment which use arguments based on rates of short-term impairment to determine at which gestational ages neonatal intensive care is indicated. Also, most large follow up cohorts have shown no effect of GA on rates of impairment, and a systematic review presented at the last PAS meeting, by Dr Moore and colleagues from Ottawa, was also unable to show an effect of GA on cognitive impairment among extremely preterm newborns, if they are examined late enough (4 to 8 years for their study) to have some prediction for the very long term.

If neuro-cognitive outcomes among survivors is not affected by gestational age, and also quality of life among survivors is not affected by gestational age, and is not significantly different to term babies, then I think that it is really only the survival rates which are relevant to decisions making around birth. Decision-making after birth can take into account other prognostic characteristics, including the number and severity of post-natal complications, factors which may be more relevant to the long term.

About keithbarrington

I am a neonatologist and clinical researcher at Sainte Justine University Health Center in Montréal
This entry was posted in Neonatal Research and tagged , . Bookmark the permalink.

One Response to Long term outcomes, Quality of Life.

  1. William Meadow says:

    that’s a very good study and an important result;

    it’s a long slog convincing people of this, but probably worth it in the end;

    love to you and Annie and the kids;

    b

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