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On subject after subject here, the studies exist and cannot be combined, because each used a different definition, a different questionnaire or a different threshold. A prevalence that ranges from 0 to 84 per cent is a measurement problem, not a biological one.
This gap is methodological and it is why several records on this front print a named gap where a number should be. The clearest example is kidney function after childhood cancer: reported prevalence ranges from 0 to 84 per cent across studies with no agreed outcome measure, and the paediatric facet's conclusion is that the field has not agreed what to measure, so the studies cannot be compared and no single prevalence figure is defensible.
The same pattern recurs. On time to diagnosis in adolescents and young adults, a systematic review found that the skewed distribution of the data meant comparisons between studies based on medians were difficult and combining studies within a meta-analysis was not appropriate, and the consequence is that there is no defensible average time to diagnosis for that age group. On quality of life after a stoma or limb loss, the approaches used to measure health-related quality of life were inconsistent and outcome scores varied substantially. On fear of recurrence, a major review concluded that the field had expanded somewhat haphazardly over the preceding twenty years and that consensus definitions and well-validated measures were still needed. On body image after head and neck cancer there is no pooled prevalence figure at all. On bowel function after pelvic radiotherapy, prevalence is reported very differently across studies and no single cohort figure was defensible. On nails after chemotherapy, an incidence range of 0 to 44 per cent says more about how it is measured than how often it happens. On cognition, self-report and neuropsychological testing diverge, which is a disagreement about what the outcome even is.
The fix is known and unglamorous. Core outcome sets, which specify a minimum set of outcomes and the instruments to measure them, have been developed for other fields and change what can be pooled within about a decade. They cost little, need no new biology, and require that a critical mass of investigators agree to use them. The reason they are missing here is the same reason most things on this front are missing: no sponsor, no mandate and no funder asking for one.
A reported prevalence of 0 to 84 per cent for the same late effect is a measurement failure. Core outcome sets are cheap, need no new biology, and would unlock the studies the field has already paid for.
Every survivorship intervention currently raises its own small trial with its own control arm and its own endpoint. A platform trial with a shared control and a common outcome set would test several at the cost of one and a half.
Shares Agree what to measure, so the next systematic review can pool rather than narrate, Thinking and memory after cancer treatment: what is measurable, and what helps, Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship, open-problem.
Shares Give survivorship interventions a shared control arm, Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship, open-problem.
Shares Give survivorship interventions a shared control arm, Bowel function after pelvic radiotherapy, Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship, open-problem.
Shares Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship, open-problem.
Shares Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship, open-problem.
Shares Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship, open-problem.
Shares Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship, open-problem.
Shares International Guideline Harmonization Group for late effects of childhood cancer, Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship, open-problem.