{"entity":{"id":"rejuv-paed-uk-long-term-follow-up","kind":"technology","name":"Long-term follow-up in the United Kingdom: what a survivor is actually offered","aka":[],"tldr":"Britain sorts survivors into three levels of follow-up by how intensive their treatment was: a postal or telephone review at one end, a specialist late-effects clinic at the other. A Scottish cohort applied the levels retrospectively and found they worked: late effects affected 11.6 per cent of level one survivors and 65.2 per cent of level three.","summary":"The United Kingdom's arrangements rest on three documents and one organising idea.\n\nThe organising idea is therapy-based risk stratification into three levels, developed by the late effects group of what is now the Children's Cancer and Leukaemia Group: level one for the lowest-risk treatment, usually surgery alone, followed by postal or telephone review; level two for intermediate-risk treatment, nurse-led or primary-care-led review; level three for the most intensive treatment, including cranial or total body irradiation and transplant, followed in a specialist late-effects clinic.\n\nThe idea was tested retrospectively in South East Scotland on 607 five-year survivors diagnosed between 1971 and 2004. Risk stratification assigned 86 (14.2 per cent) to level one, 271 (44.6 per cent) to level two and 250 (41.2 per cent) to level three. The prevalence of late effects was 11.6 per cent in level one, with only one patient having grade 3 or higher toxicity; 35.8 per cent in level two; and 65.2 per cent in level three, of whom 36.2 per cent had grade 3 and 22.1 per cent grade 4 toxicity. The authors concluded that therapy-based stratification \"can predict which patients are at significant risk of developing moderate-to-severe LEs and require high-intensity long-term follow-up\", while noting that confirmation in a prospective cohort is still needed.\n\nThe guidance. NICE's cancer service guideline CSG7, Improving outcomes in children and young people with cancer, was published on 24 August 2005 and last reviewed on 31 July 2014, and sets out how services should be organised, including that care should be appropriate for the child's or young person's age and that every child and young person should have a clearly defined key worker. NICE quality standard QS55, Cancer services for children and young people, published on 27 February 2014, covers ages 0 to 24. Its sixth quality statement is the operative one for survivorship: \"Children and young people (aged 0 to 24 years) who have been treated for cancer have an end-of-treatment summary and care plan that includes agreed follow-up and monitoring arrangements.\" Its process measures count the proportion who have such a plan and the proportion whose plan is reviewed five years after the end of initial treatment. Its seventh statement covers fertility support. The quality standard is endorsed by NHS England and supported by, among others, the Children's Cancer and Leukaemia Group and Teenage Cancer Trust.\n\nWhat a survivor actually gets varies. The British literature on models of long-term follow-up records that delivery \"varies substantially, particularly in terms of who provides it, where, and how\". A level three survivor in a region with a funded late-effects clinic has something close to what the guidelines describe. A level two survivor whose care was handed to a general practice may have a letter. The quality standard's own process measure, whether the plan was reviewed at five years, exists because it often is not.\n\nWhat comes back, and when: nothing clinical here, but a reader in the United Kingdom can act on two things. Ask for the end-of-treatment summary and care plan by name, because it is a NICE quality statement and not a favour. And ask which of the three levels you were assigned to, because that determines what you should be offered.","status":"standard-of-care","asOf":"2026-10-02","wikipedia":"https://en.wikipedia.org/wiki/Late_effect","links":[{"label":"Can intensity of long-term follow-up for survivors of childhood and teenage cancer be determined by therapy-based risk stratification? (BMJ Open 2013)","url":"https://doi.org/10.1136/bmjopen-2012-002451"},{"label":"Long-term follow-up of people who have survived cancer during childhood (Lancet Oncol 2006)","url":"https://doi.org/10.1016/S1470-2045(06)70724-0"},{"label":"NICE cancer service guideline CSG7: Improving outcomes in children and young people with cancer (2005)","url":"https://www.nice.org.uk/guidance/csg7"},{"label":"NICE quality standard QS55: Cancer services for children and young people (2014)","url":"https://www.nice.org.uk/guidance/qs55"}],"tags":["rejuvenation","survivorship","paediatric","late-effects","evidence:moderate"],"related":["bccss","teenage-cancer-trust","ighg"],"cancers":["childhood-cancers","all-leukemia","hodgkin-lymphoma","medulloblastoma","wilms-tumor"],"sections":["rejuvenation","supportive-care"],"technologies":["rejuv-paed-cog-ltfu-guidelines","rejuv-paed-transition-to-adult-care","survivorship-care-plan","rejuv-ayac-services"],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":["late-effects"],"trials":[],"people":[],"bottlenecks":["b-survivorship","b-care-fragmentation"],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"principle":"Stratifying follow-up by the intensity of the treatment given concentrates specialist capacity on the minority who carry most of the serious late-effect burden, while sparing low-risk survivors clinic visits that find nothing. The Scottish validation shows the stratification separates the groups it is meant to separate; whether the resulting schedules improve outcomes has not been tested prospectively.","strengths":["A simple three-level scheme that separates risk groups as intended in the one cohort to test it","A NICE quality statement a survivor can name and ask for","Covers 0 to 24, so adolescents are included rather than falling between services"],"limitations":["The stratification has not been validated prospectively","Delivery varies substantially by region and by level","A survivor handed to primary care may have no specialist review at all"]},"route":"/technologies/rejuv-paed-uk-long-term-follow-up/","neighbours":{"collection":[{"id":"bccss","kind":"collection","name":"British Childhood Cancer Survivor Study (BCCSS)","route":"/collections/bccss/"},{"id":"ighg","kind":"collection","name":"International Guideline Harmonization Group for late effects of childhood cancer","route":"/collections/ighg/"}],"institution":[{"id":"teenage-cancer-trust","kind":"institution","name":"Teenage Cancer Trust","route":"/institutions/teenage-cancer-trust/"}],"cancer":[{"id":"all-leukemia","kind":"cancer","name":"Acute lymphoblastic leukaemia","route":"/cancers/all-leukemia/"},{"id":"childhood-cancers","kind":"cancer","name":"Childhood cancers (all types)","route":"/cancers/childhood-cancers/"},{"id":"hodgkin-lymphoma","kind":"cancer","name":"Hodgkin lymphoma","route":"/cancers/hodgkin-lymphoma/"},{"id":"medulloblastoma","kind":"cancer","name":"Medulloblastoma","route":"/cancers/medulloblastoma/"},{"id":"wilms-tumor","kind":"cancer","name":"Wilms tumour (nephroblastoma)","route":"/cancers/wilms-tumor/"}],"section":[{"id":"rejuvenation","kind":"section","name":"Recovery & Rejuvenation","route":"/fronts/rejuvenation/"},{"id":"supportive-care","kind":"section","name":"Supportive Care & Survivorship","route":"/fronts/supportive-care/"}],"technology":[{"id":"rejuv-access-survivorship-care-uk","kind":"technology","name":"After treatment in the UK: personalised care, and follow-up you lead yourself","route":"/technologies/rejuv-access-survivorship-care-uk/"},{"id":"rejuv-ayac-services","kind":"technology","name":"Services built for teenagers and young adults, and what the national evaluation found","route":"/technologies/rejuv-ayac-services/"},{"id":"survivorship-care-plan","kind":"technology","name":"Survivorship care and late-effects surveillance","route":"/technologies/survivorship-care-plan/"},{"id":"rejuv-paed-cog-ltfu-guidelines","kind":"technology","name":"The Children's Oncology Group Long-Term Follow-Up Guidelines","route":"/technologies/rejuv-paed-cog-ltfu-guidelines/"},{"id":"rejuv-paed-transition-to-adult-care","kind":"technology","name":"The handover from children's to adult services, where follow-up falls away","route":"/technologies/rejuv-paed-transition-to-adult-care/"}],"term":[{"id":"late-effects","kind":"term","name":"Late effects and survivorship toxicity","route":"/terms/late-effects/"},{"id":"rejuv-history-ncsi-england","kind":"term","name":"The National Cancer Survivorship Initiative in England, and the Recovery Package","route":"/terms/rejuv-history-ncsi-england/"}],"bottleneck":[{"id":"b-care-fragmentation","kind":"bottleneck","name":"Fragmented care and guideline gaps","route":"/bottlenecks/b-care-fragmentation/"},{"id":"rejuv-agenda-nobody-owns-the-follow-up","kind":"bottleneck","name":"Nobody owns the follow-up once the oncology clinic lets go","route":"/bottlenecks/rejuv-agenda-nobody-owns-the-follow-up/"},{"id":"b-survivorship","kind":"bottleneck","name":"Survivorship and late effects are neglected","route":"/bottlenecks/b-survivorship/"}]}}