From Scary Vocal Critic's excellent comment:
The protocol that: “The primary outcome measure for the interventions will be school attendance/home tuition at 6 months.” It is worth noting that the new SMILE paper reported that there was no significant difference between groups for what was the trial’s primary outcome. There was a significant difference at 12 months, but by this point data on school attendance was missing for one third of the participants of the LP arm.
I had not fully appreciated that the intention of the trial was to count both school attendance and home tuition.
Having supported my son through periods of both, I know that school attendance requires quite a different (and much better) level of health. Home tuition might consist of an hour of contact time with a teacher or parent, and then a few hours lying in bed working through questions. Or something quite different. But almost certainly not 6 hours a day sitting up being taught by a visiting teacher. Home tuition is very hard to define exactly or to quantify in terms of 'days of education'.
It seems possible, if school and home tuition are counted as the same thing, that a child might be attending school three days a week at the start of the trial and have moved to a relaxed 'home tuition' four days a week by the end of the trial and therefore count as improved on the measure of school attendance. They may even feel better now that they aren't using so much energy getting to school and sitting in class. But they still have ME.
I would like to know if 'home tuition' was counted as 'school attendance' in the SMILE paper and, if so, how it was defined. It would also be good to know what proportion of the 'school attendance' was actually 'home tuition', at the beginning and end of the trial.
Given that it seems that Crawley moved from a planned 'school attendance as reported by the school' to 'school attendance as reported by the parents/child', the inclusion of 'home tuition' as 'school attendance' muddies the water considerably. There is a lot more leeway for bias in how home tuition is quantified in self-reporting.
Also, the impact of 'home tuition' on the carer is much different to 'reliable school attendance'. Where home tuition is occurring, a parent is almost certainly at home, supporting the child. The impact on the cost of the disease to the family and society is much greater than if the child is able to reliably go to school. If home tuition continued to be counted as equivalent to school attendance, I wonder how that was handled in the cost benefit analysis.
Actually even 'school attendance that doesn't include home tuition' is quite a nuanced thing when it comes to cost benefit analyses of a treatment. If a child can reliably attend school three days a week, on the same days each week, then the carer can potentially work. But ME typically isn't like that. What is possible one week is not possible the next. This makes it very difficult for the carer to have a job that requires any sort of regularity in attendance or even productivity.
Even if the child was attending school for three days a week at the beginning of the trial and managed to attend 4 days a week for the particular two weeks the parents chose to report on at the end of the trial, that should not automatically be assumed to result in the carer being able to work and earn money for an extra day a week. It is quite possible that the child will need to be in bed all of the next week.
Clearly, for a sound cost benefit analysis of LP, we need to know if there was a stable improvement in the capacity of the child to attend school. That is going to require actual school records for at least a period of months, not two weeks. Preferably, due to the variability of school holidays and the cumulative effect of over-exertion, school attendance needs to be tracked for the year following treatment.
