# A survivorship passport app for adolescent and young adult survivors

Source: https://onco.cc/ideas/idea-acc-aya-survivorship-passport/  
OnCo record `idea-acc-aya-survivorship-passport` (Idea). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

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.

## Fields

- Kind: Idea
- Last checked: 2026-09-08
- 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.
- Proposed 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

## Sources

- Bottleneck evidence (Survivorship and late effects are neglected): NCI Office of Cancer Survivorship statistics: https://cancercontrol.cancer.gov/ocs/statistics

## Connected records

- ideas: [A machine-readable treatment summary handed to every patient and readable by any hospital](https://onco.cc/ideas/idea-acc-portable-treatment-summary/), [Make the treatment exposure record machine-readable, so surveillance can be computed](https://onco.cc/ideas/idea-rejuv-exposure-record-a-machine-can-read/)
- cancers: [Acute lymphoblastic leukaemia](https://onco.cc/cancers/all-leukemia/), [Adolescent and young adult cancers (ages 15 to 39)](https://onco.cc/cancers/aya-cancers/), [Hodgkin lymphoma](https://onco.cc/cancers/hodgkin-lymphoma/), [Sarcomas (soft tissue, bone, GIST)](https://onco.cc/cancers/sarcoma/)
- bottlenecks: [Patients lack understanding, navigation and agency](https://onco.cc/bottlenecks/b-patient-voice/), [Survivorship and late effects are neglected](https://onco.cc/bottlenecks/b-survivorship/)
- collections: [PanCareSurFup and the European survivor cohorts](https://onco.cc/collections/pancaresurfup/)
- technologies: [Adolescents and young adults: a group with its own cancers, its own gap and its own needs](https://onco.cc/technologies/rejuv-ayac-distinct-group/), [Insurance, mortgages and the right to be forgotten](https://onco.cc/technologies/rejuv-life-insurance-loans-and-the-right-to-be-forgotten/), [Services built for teenagers and young adults, and what the national evaluation found](https://onco.cc/technologies/rejuv-ayac-services/), [The handover from children's to adult services, where follow-up falls away](https://onco.cc/technologies/rejuv-paed-transition-to-adult-care/), [Treating fear of recurrence: the randomised trials, their effect sizes, and where the treatment is available](https://onco.cc/technologies/rejuv-mind-fear-of-recurrence-treatment/)

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