TY - JOUR
T1 - Adverse health outcomes and health-related quality of life (HRQoL) among long-term adolescent and young adult (AYA) brain tumour survivors
T2 - results from the population-based SURVAYA study
AU - Angoumis, Konstantinos
AU - Padilla, Catarina S.
AU - Kouwenhoven, Mathilde C. M.
AU - Bijlsma, Rhode M.
AU - Kaal, Suzanne E. J.
AU - Tromp, Jacqueline M.
AU - Bos, Monique E. M. M.
AU - van der Hulle, Tom
AU - Broen, Martinus P. G.
AU - Nuver, Janine
AU - van der Graaf, Winette T. A.
AU - Pauge, Sophie
AU - Husson, Olga
PY - 2025/1/14
Y1 - 2025/1/14
N2 - PURPOSE: Adolescent and young adult (AYA) malignant brain tumour (BT) survivors are at risk of adverse health outcomes, which may impact their health-related quality of life (HRQoL). This study aimed to investigate the (1) prevalence of physical and psychological adverse health outcomes, (2) the HRQoL, and (3) the association of adverse health outcomes and HRQoL among long-term AYA-BT survivors. Adverse health outcomes and HRQoL were compared to other AYA cancer (AYAC) survivors. METHODS: A cross-sectional secondary data analysis of the SURVAYA study among 133 AYA-BT and 3877 AYAC survivors was conducted. Participant self-reported adverse health outcomes and HRQoL scores were analysed and compared between the two populations. Associations with HRQoL were assessed using linear regression modelling with AIC-based backward elimination. RESULTS: AYA-BT survivors faced significant issues of fatigue (47.6%), future uncertainty (45.2%), and medical conditions like vision (34.4%), speech, taste, or smell (26.2%) impairments, cancer recurrence, and metastasis (25.4%). Neurocognitive symptoms were identified as BT-specific issues (13.6-33.6%). Compared to AYAC survivors, AYA-BT survivors reported significantly (p < 0.05) lower functioning scores on the role, cognitive, emotional, and social HRQoL, with cognitive (56.0%) and emotional (40.0%) domains being the most affected. Adverse health outcomes were negatively associated with HRQoL, ranging from small to large clinical relevance. CONCLUSION: Long-term AYA-BT survivors were identified as a highly burdened population, affected by multifaceted issues and multidimensional detriments in HRQoL years beyond their cancer diagnosis. This study highlights the necessity of long-term follow-up and a holistic, multidisciplinary approach to survivorship care to ultimately improve the quality of AYA-BT survivorship.
AB - PURPOSE: Adolescent and young adult (AYA) malignant brain tumour (BT) survivors are at risk of adverse health outcomes, which may impact their health-related quality of life (HRQoL). This study aimed to investigate the (1) prevalence of physical and psychological adverse health outcomes, (2) the HRQoL, and (3) the association of adverse health outcomes and HRQoL among long-term AYA-BT survivors. Adverse health outcomes and HRQoL were compared to other AYA cancer (AYAC) survivors. METHODS: A cross-sectional secondary data analysis of the SURVAYA study among 133 AYA-BT and 3877 AYAC survivors was conducted. Participant self-reported adverse health outcomes and HRQoL scores were analysed and compared between the two populations. Associations with HRQoL were assessed using linear regression modelling with AIC-based backward elimination. RESULTS: AYA-BT survivors faced significant issues of fatigue (47.6%), future uncertainty (45.2%), and medical conditions like vision (34.4%), speech, taste, or smell (26.2%) impairments, cancer recurrence, and metastasis (25.4%). Neurocognitive symptoms were identified as BT-specific issues (13.6-33.6%). Compared to AYAC survivors, AYA-BT survivors reported significantly (p < 0.05) lower functioning scores on the role, cognitive, emotional, and social HRQoL, with cognitive (56.0%) and emotional (40.0%) domains being the most affected. Adverse health outcomes were negatively associated with HRQoL, ranging from small to large clinical relevance. CONCLUSION: Long-term AYA-BT survivors were identified as a highly burdened population, affected by multifaceted issues and multidimensional detriments in HRQoL years beyond their cancer diagnosis. This study highlights the necessity of long-term follow-up and a holistic, multidisciplinary approach to survivorship care to ultimately improve the quality of AYA-BT survivorship.
KW - Survivorship
KW - Health-related quality of life
KW - Late effects
KW - Neurooncology
KW - Adverse health outcomes
KW - CANCER SURVIVORS
KW - FATIGUE
KW - IMPACT
U2 - 10.1007/s00520-025-09155-9
DO - 10.1007/s00520-025-09155-9
M3 - Article
SN - 0941-4355
VL - 33
JO - Supportive Care in Cancer
JF - Supportive Care in Cancer
IS - 2
M1 - 95
ER -