TY - JOUR
T1 - Long-term health-related quality of life in young childhood cancer survivors and their parents
AU - ANZCHOG Survivorship Group
AU - Fardell, Joanna E.
AU - Wakefield, Claire E.
AU - De Abreu Lourenco, Richard
AU - Signorelli, Christina
AU - McCarthy, Maria
AU - McLoone, Jordana
AU - Osborn, Michael
AU - Gabriel, Melissa
AU - Anazodo, Antoinette
AU - Alvaro, Frank
AU - Lockwood, Liane
AU - Walwyn, Thomas
AU - Skeen, Jane
AU - Tillemans, Ramon
AU - Cohn, Richard J.
AU - Corbett, Rob
AU - Downie, Peter
AU - Egan, Karen
AU - Ellis, Sarah
AU - Emery, Jon
AU - Foreman, Tali
AU - Girgis, Afaf
AU - Graham, Kerrie
AU - Johnston, Karen
AU - Jones, Janelle
AU - Maguire, Ann
AU - Mechinaud, Francoise
AU - Molloy, Sinead
AU - Moore, Lyndal
AU - Tapp, Heather
AU - Till, Tracy
AU - Truscott, Jo
AU - Turpin, Kate
AU - Williamson, Jane
AU - Yallop, Kathy
PY - 2021/12
Y1 - 2021/12
N2 - Purpose: Few studies have investigated the health-related quality of life (HRQoL) of young childhood cancer survivors and their parents. This study describes parent and child cancer survivor HRQoL compared to population norms and identifies factors influencing child and parent HRQoL. Methods: We recruited parents of survivors who were currently <16 years, and >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.
AB - Purpose: Few studies have investigated the health-related quality of life (HRQoL) of young childhood cancer survivors and their parents. This study describes parent and child cancer survivor HRQoL compared to population norms and identifies factors influencing child and parent HRQoL. Methods: We recruited parents of survivors who were currently <16 years, and >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.
KW - childhood cancer survivors
KW - health-related quality of life (HRQoL)
KW - parents
KW - psychological functioning
KW - resiliency
KW - survivorship
UR - http://www.scopus.com/inward/record.url?scp=85116854338&partnerID=8YFLogxK
U2 - 10.1002/pbc.29398
DO - 10.1002/pbc.29398
M3 - Article
C2 - 34606168
AN - SCOPUS:85116854338
VL - 68
JO - PEDIATRIC BLOOD & CANCER
JF - PEDIATRIC BLOOD & CANCER
SN - 0098-1532
IS - 12
M1 - e29398
ER -