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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.
The United Kingdom's arrangements rest on three documents and one organising idea.
The 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.
The 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.
The 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.
What 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.
What 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.
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.
Query for this technology: (TITLE:"Long-term follow-up in the United Kingdom: what a survivor is actually offered" OR ABSTRACT:"Long-term follow-up in the United Kingdom: what a survivor is actually offered") 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 Long-term follow-up in the United Kingdom: what a survivor is actually offered, not a curated reading list.
Shares British Childhood Cancer Survivor Study (BCCSS), Wilms tumour (nephroblastoma), Medulloblastoma, Childhood cancers (all types) and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares International Guideline Harmonization Group for late effects of childhood cancer, Services built for teenagers and young adults, and what the national evaluation found, Medulloblastoma, Childhood cancers (all types) and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares International Guideline Harmonization Group for late effects of childhood cancer, The Children's Oncology Group Long-Term Follow-Up Guidelines, Wilms tumour (nephroblastoma), Childhood cancers (all types) and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares Teenage Cancer Trust, Services built for teenagers and young adults, and what the national evaluation found, Childhood cancers (all types), Fragmented care and guideline gaps and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares British Childhood Cancer Survivor Study (BCCSS), The handover from children's to adult services, where follow-up falls away, The Children's Oncology Group Long-Term Follow-Up Guidelines, Wilms tumour (nephroblastoma) and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares International Guideline Harmonization Group for late effects of childhood cancer, The Children's Oncology Group Long-Term Follow-Up Guidelines, Medulloblastoma, Childhood cancers (all types) and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares International Guideline Harmonization Group for late effects of childhood cancer, The Children's Oncology Group Long-Term Follow-Up Guidelines, Wilms tumour (nephroblastoma), Childhood cancers (all types) and the tags rejuvenation, survivorship, paediatric, late-effects.
Shares International Guideline Harmonization Group for late effects of childhood cancer, The Children's Oncology Group Long-Term Follow-Up Guidelines, Medulloblastoma, Childhood cancers (all types) and the tags rejuvenation, survivorship, paediatric, late-effects.