https://ogma.newcastle.edu.au/vital/access/ /manager/Index en-au 5 https://ogma.newcastle.edu.au/vital/access/ /manager/Repository/uon:50289 Wed 28 Feb 2024 16:38:42 AEDT ]]> https://ogma.newcastle.edu.au/vital/access/ /manager/Repository/uon:46348 Tue 15 Nov 2022 14:13:02 AEDT ]]> https://ogma.newcastle.edu.au/vital/access/ /manager/Repository/uon:26709 Sat 24 Mar 2018 07:26:22 AEDT ]]> https://ogma.newcastle.edu.au/vital/access/ /manager/Repository/uon:49579 Mon 22 May 2023 11:19:14 AEST ]]> https://ogma.newcastle.edu.au/vital/access/ /manager/Repository/uon:48481 Mon 20 Mar 2023 09:59:40 AEDT ]]> https://ogma.newcastle.edu.au/vital/access/ /manager/Repository/uon:47905 5 years postdiagnosis. Parents reported on their child's HRQoL (Kidscreen-10), and their own HRQoL (EQ-5D-5L). Parents rated their resilience and fear of cancer recurrence and listed their child's cancer-related late effects. Results: One hundred eighty-two parents of survivors (mean age = 12.4 years old and 9.7 years postdiagnosis) participated. Parent-reported child HRQoL was significantly lower than population norms (48.4 vs. 50.7, p < .009). Parents most commonly reported that their child experienced sadness and loneliness (18.1%). Experiencing more late effects and receiving treatments other than surgery were associated with worse child HRQoL. Parents’ average HRQoL was high (0.90) and no different to population norms. However 38.5% of parents reported HRQoL that was clinically meaningfully different from perfect health, and parents experienced more problems with anxiety/depression (43.4%) than population norms (24.7%, p < .0001). Worse child HRQoL, lower parent resilience, and higher fear of recurrence was associated with worse parent HRQoL. Conclusions: Parents report that young survivors experience small but significant ongoing reductions in HRQoL. While overall mean levels of HRQoL were no different to population norms, a subset of parents reported HRQoL that was clinically meaningfully different from perfect health. Managing young survivors’ late effects and improving parents’ resilience through survivorship may improve HRQoL in long-term survivorship.]]> Mon 06 Feb 2023 15:07:27 AEDT ]]> https://ogma.newcastle.edu.au/vital/access/ /manager/Repository/uon:39992 p < 0.001). Many survivors and parents have unmet needs for genetics-related services and information. Greater access to services and information might allow survivors at high risk for late effects to detect and prevent side effects early and improve medical outcomes. Addressing families’ needs and preferences during survivorship may increase satisfaction with survivorship care.]]> Fri 15 Jul 2022 10:13:46 AEST ]]>