“Forewarned and forearmed”: Long-term childhood cancer survivors’ and parents’ information needs and implications for survivorship models of care

Abstract

Future efforts towards tailoring information on potential late effects, healthy lifestyles and follow-up care may help to address unmet information needs.

Perceptions of future health and cancer risk in adult survivors of childhood cancer: Implications for engagement in follow‐up care

“…2 We collected data regarding survivors' 1) perceived risk; and 2) amount of worry ("no/low" vs "some/high") regarding subsequent neoplasms (ie, disease recurrence or new cancers) and late effects, including time spent thinking about these issues ("few seconds" to "many hours") and the frequency of these thoughts ("a few times a year" to "every day"). 2 We collected data regarding survivors' 1) perceived risk; and 2) amount of worry ("no/low" vs "some/high") regarding subsequent neoplasms (ie, disease recurrence or new cancers) and late effects, including time spent thinking about these issues ("few seconds" to "many hours") and the frequency of these thoughts ("a few times a year" to "every day").…”

Family history‐taking practices and genetic confidence in primary and tertiary care providers for childhood cancer survivors

“…Providers’ reliance on survivors to initiate family history discussions is concerning. Childhood cancer survivors can be less health literate and less able to advocate for their care needs than other groups . Their young age at diagnosis means they may lack understanding about their cancer, their treatment, and their health risks .…”

“…Primary care providers : Childhood cancer survivors across Australia/New Zealand nominated their PCPs as part of the Australian and New Zealand Children's Haematology/Oncology Group (ANZCHOG) Survivorship Study . Survivors self‐reported their demographic details (50% male, mean age 21.8 years [SD = 9.1, range = 8–44]).…”

“…In well‐developed healthcare systems, two key providers service childhood cancer survivors: hospital‐based tertiary providers and community‐based primary care providers (PCPs) . Many tertiary pediatric oncology centers offer long‐term follow‐up (LTFU) clinics, which provide surveillance recommendations, health education, and specialist referrals . Staffed by pediatric hematologist–oncologists and/or nurses, LTFU clinics are well placed to provide targeted care.…”

“…LTFU clinics do not, however, reach all survivors: up to 50% of eligible survivors do not attend. Most clinics also transition survivors into adult care when survivors mature . PCPs, therefore, play a critical role in childhood cancer survivorship care.…”