Saroj Saigal has just published a very important review of long term quality of life of former preterm infants. As you can imagine, as she originated this area of study for the preterm, it is clearly written and thoughtful. (Saigal S: Quality of life of former premature infants during adolescence and beyond. Early Human Development 2013). She describes how QoL is conceptualized, how it is measured and the differing constructs behind the different scales.

Some of you will know that the CPS has released a new position statement on counseling mothers before threatened preterm delivery. I am writing a series of posts about that statement, but as a “taster”… the position statement says next to nothing about quality of life, which is strange for a statement which is supposed to be about ethical principles.  What it does say is the following “A few small studies have followed infants < 1000 grams birthweight through to adolescence and adulthood, but these may not be representative of the wider population. … no differences in self-esteem or self-perceived health-related quality of life were found.”

In fact the “few small studies” that this position statement refers to have been the biggest advance in describing the outcomes of very preterm infants. When a systematic review was published in 2008 Zwicker and Harris found 15 studies. Since then there are at least another 20 studies that have been published. Some of them are regional or population based studies some of them are hospital based cohorts, most have had remarkably good retention rates for the very long term follow up that they report.

I don’t see how all that can be dismissed as “may not be representative”

These studies all note similar findings, that quality of life as reported by the children/adolescents/adults themselves is either indistinguishable from controls, or slightly worse than controls. When children who are too impaired to answer for themselves are included, and usually it is the parents who are the proxy respondents in those studies, then the QoL scores are slightly lower than controls. When medical staff describe the QoL of the infants, in contrast, what has been referred to, I think inaccurately, as “objective QoL”, the scores of the former preterm infants are lower, especially those with impairments.

Dr Saigal ends the review with 3 major teaching points:

Research has shown that it is possible for children and adolescents to provide unique and reliable information about their own QoL. This information can only be obtained from the individual concerned.

It is important for the medical community to accept, that even if the stated QoL is at odds with the objective assessment by a clinician, it is the perception of the affected individual that should take priority.

Self-reported QoL provides important complementary information to the traditional medical outcomes, and despite their subjective nature, they can be extremely useful in tailoring the care of patients based on their perceived needs.

and she makes 3 recommendations, one of which I reproduce here

QoL measures should be integrated in clinical trials, in long-term outcome of children with disabilities and chronic health conditions, and in treatment decisions on whether to offer intensive care

I agree.