{"entity":{"id":"idea-acc-aya-survivorship-passport","kind":"idea","name":"A survivorship passport app for adolescent and young adult survivors","aka":[],"tldr":"Adolescent and young adult survivors live longest with late effects and are the group most often lost to follow-up as they change doctors over decades. A phone app version of Europe's Survivorship Passport, holding treatment history, exposure-based risk explanations and screening reminders, would travel with them for life.","summary":"Adolescent and young adult survivors are the group most likely to be lost to follow-up and to face late effects for the longest. The European SurPass (Survivorship Passport) initiative has developed a standardised electronic passport with treatment summary and individualised follow-up recommendations; adoption is uneven. A patient-held app version with reminders, exposure-based risk explanations, and a shareable summary would improve long-term adherence.","asOf":"2026-09-08","links":[{"label":"Bottleneck evidence (Survivorship and late effects are neglected): NCI Office of Cancer Survivorship statistics","url":"https://cancercontrol.cancer.gov/ocs/statistics"}],"tags":[],"related":["idea-acc-portable-treatment-summary"],"cancers":["hodgkin-lymphoma","all-leukemia","sarcoma","aya-cancers"],"sections":[],"technologies":[],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":["b-survivorship","b-patient-voice"],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"hypothesis":"Survivors using the passport app will show at least 30% higher adherence to recommended long-term surveillance at five years than those with a paper summary or none.","rationale":"Patient-held records improve engagement when the patient is the constant across many providers; young people are the population most reachable through a phone.","test":"A randomised trial in 1,000 AYA survivors at end of treatment with surveillance adherence, self-reported knowledge of risks, and health-service contact as endpoints.","maturity":"early-clinical","actor":"patients","cost":"small","horizonYears":2},"route":"/ideas/idea-acc-aya-survivorship-passport/","neighbours":{"idea":[{"id":"idea-acc-portable-treatment-summary","kind":"idea","name":"A machine-readable treatment summary handed to every patient and readable by any hospital","route":"/ideas/idea-acc-portable-treatment-summary/"},{"id":"idea-rejuv-exposure-record-a-machine-can-read","kind":"idea","name":"Make the treatment exposure record machine-readable, so surveillance can be computed","route":"/ideas/idea-rejuv-exposure-record-a-machine-can-read/"}],"cancer":[{"id":"all-leukemia","kind":"cancer","name":"Acute lymphoblastic leukaemia","route":"/cancers/all-leukemia/"},{"id":"aya-cancers","kind":"cancer","name":"Adolescent and young adult cancers (ages 15 to 39)","route":"/cancers/aya-cancers/"},{"id":"hodgkin-lymphoma","kind":"cancer","name":"Hodgkin lymphoma","route":"/cancers/hodgkin-lymphoma/"},{"id":"sarcoma","kind":"cancer","name":"Sarcomas (soft tissue, bone, GIST)","route":"/cancers/sarcoma/"}],"bottleneck":[{"id":"b-patient-voice","kind":"bottleneck","name":"Patients lack understanding, navigation and agency","route":"/bottlenecks/b-patient-voice/"},{"id":"b-survivorship","kind":"bottleneck","name":"Survivorship and late effects are neglected","route":"/bottlenecks/b-survivorship/"}],"collection":[{"id":"pancaresurfup","kind":"collection","name":"PanCareSurFup and the European survivor cohorts","route":"/collections/pancaresurfup/"}],"technology":[{"id":"rejuv-ayac-distinct-group","kind":"technology","name":"Adolescents and young adults: a group with its own cancers, its own gap and its own needs","route":"/technologies/rejuv-ayac-distinct-group/"},{"id":"rejuv-life-insurance-loans-and-the-right-to-be-forgotten","kind":"technology","name":"Insurance, mortgages and the right to be forgotten","route":"/technologies/rejuv-life-insurance-loans-and-the-right-to-be-forgotten/"},{"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":"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/"},{"id":"rejuv-mind-fear-of-recurrence-treatment","kind":"technology","name":"Treating fear of recurrence: the randomised trials, their effect sizes, and where the treatment is available","route":"/technologies/rejuv-mind-fear-of-recurrence-treatment/"}]}}