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This is where survivorship care is lost. Of 8,522 adult survivors asked, 88.8 per cent had seen a doctor in the previous two years but only 17.8 per cent had received care that addressed their cancer history with risk advice or screening. Among those who should have had an echocardiogram, 28.2 per cent had; among those due a mammogram, 40.8 per cent had.
A child treated for cancer is followed closely for years by a team that knows exactly what they were given. Then they turn eighteen, or twenty-five, and the team is no longer theirs. What happens next has been measured, and it is the weakest link in the whole field.
The measurement. In a cross-sectional survey of 8,522 participants in the Childhood Cancer Survivor Study, median age 31.4 at interview and 6.8 at diagnosis, 88.8 per cent reported some form of medical care in the previous two years. Only 31.5 per cent reported care that focused on their prior cancer, and only 17.8 per cent reported survivor-focused care that included advice about risk reduction or the discussion or ordering of screening tests. Among survivors at increased risk, 511 of 1,810 (28.2 per cent) had had the recommended echocardiogram and 169 of 414 (40.8 per cent) the recommended mammogram. Survivors who were Black, older at interview or uninsured were less likely to have received risk-based care. The conclusion is blunt: "Despite a significant risk of late effects after cancer therapy, the majority of childhood cancer survivors do not receive recommended risk-based care."
What happens at the point of transfer. Among 80 young adult survivors formally transferred out of paediatric survivorship care in the previous one to five years, mean age 27.7 and mean 10.4 years from diagnosis, just over half (44, 55 per cent) reported continuing cancer-related follow-up care since the transfer. Of those who did, 44 per cent saw a subspecialty survivorship provider, 50 per cent a primary care provider and 14 per cent used a shared-care model, and survivors reported that less cancer-related content was discussed when care was with a primary care provider.
Why. Interviews with 120 survivors and parents, and with 51 of their primary care physicians, found that only 23 per cent of survivors and 10 per cent of parents visited their family doctor for cancer-related care, giving as reasons low confidence in primary care physicians (48 per cent), low perceived cancer knowledge (38 per cent) and difficulty finding a good or regular doctor (31 per cent). From the other side, half the physicians felt confident providing survivorship care and 94 per cent had unmet information needs about survivors' late-effect risks, and they wanted "a highly prescriptive approach" to improve their confidence. Neither side is unwilling. Both are missing the same thing, which is a specific instruction attached to a specific person.
The systematic picture. A 2025 systematic review covering 51 studies catalogued 85 barriers and 63 facilitators. The main barriers were "lack of knowledge, information and awareness of LTFU care, lack of resources, poor transition from paediatric to adult care, and the lack of national/regional LTFU care programmes or clinics". The main facilitators were "a treatment summary/survivorship care plan, involvement of multidisciplinary specialists, education to improve late effects knowledge, a clear contact/information point, and improved communication". Among the factors associated with receiving less follow-up care were treatment with radiation only, older attained age, age at diagnosis and non-white descent; the factor most associated with receiving more was the number of late effects a survivor already had, which is to say the system responds to illness rather than preventing it.
What is being tried. Structured transition programmes with a named handover, survivorship passports and treatment summaries the survivor holds, shared-care models with written instructions for the family doctor, and in Europe the PanCareFollowUp person-centred care intervention. None has a randomised trial showing improved health outcomes, which is why this record is graded moderate: the problem is well measured and the solutions are not yet proven.
What comes back, and when: nothing is lost physiologically at transition, but the surveillance is, and surveillance is what makes the rest of this front useful. For a reader: ask for your treatment summary before you leave paediatric care, keep a copy yourself, and give one to whoever becomes your doctor.
Risk-based surveillance requires three things to be present at the same place: the exposure record, a clinician who knows what the exposure implies, and a system that generates the appointment. Paediatric oncology holds all three. After transfer the exposure record usually stays in the children's hospital, the new clinician has no training in late effects, and no system generates the appointment, so surveillance stops even though willingness on both sides persists.
Query for this technology: (TITLE:"The handover from children's to adult services, where follow-up falls away" OR ABSTRACT:"The handover from children's to adult services, where follow-up falls away") AND (cancer OR tumor OR tumour OR oncology OR carcinoma OR lymphoma OR leukemia OR leukaemia OR myeloma OR sarcoma OR melanoma OR glioma). Results are unfiltered search hits about The handover from children's to adult services, where follow-up falls away, not a curated reading list.
Shares Services built for teenagers and young adults, and what the national evaluation found, Childhood Cancer Survivor Study (CCSS), Medulloblastoma, Childhood cancers (all types) and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares A survivorship passport app for adolescent and young adult survivors, Services built for teenagers and young adults, and what the national evaluation found, How much illness childhood cancer survivors carry, and at what age, Childhood cancers (all types) and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares The Children's Oncology Group Long-Term Follow-Up Guidelines, How much illness childhood cancer survivors carry, and at what age, Childhood Cancer Survivor Study (CCSS), Medulloblastoma and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares How much illness childhood cancer survivors carry, and at what age, Childhood Cancer Survivor Study (CCSS), Medulloblastoma, Childhood cancers (all types) and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares The Children's Oncology Group Long-Term Follow-Up Guidelines, How much illness childhood cancer survivors carry, and at what age, Childhood Cancer Survivor Study (CCSS), Medulloblastoma and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares PanCareSurFup and the European survivor cohorts, The Children's Oncology Group Long-Term Follow-Up Guidelines, How much illness childhood cancer survivors carry, and at what age, Childhood Cancer Survivor Study (CCSS) and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares PanCareSurFup and the European survivor cohorts, The Children's Oncology Group Long-Term Follow-Up Guidelines, How much illness childhood cancer survivors carry, and at what age, Childhood Cancer Survivor Study (CCSS) and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares The Children's Oncology Group Long-Term Follow-Up Guidelines, How much illness childhood cancer survivors carry, and at what age, Childhood Cancer Survivor Study (CCSS), Medulloblastoma and the tags rejuvenation, survivorship, paediatric, late-effects.