TY - JOUR
T1 - The course of health-related quality of life after the diagnosis of childhood cancer
T2 - a national cohort study
AU - van Gorp, Marloes
AU - Irestorm, Elin
AU - Twisk, Jos W. R.
AU - Dors, Natasja
AU - Mavinkurve-Groothuis, Annelies
AU - Meeteren, Antoinette Y. N. Schouten van
AU - de Bont, Judith
AU - van den Bergh, Esther M. M.
AU - van der Meer, Wietske van de Peppel
AU - Beek, Laura R.
AU - Aarsen, Femke K.
AU - Streefkerk, Nienke
AU - van Litsenburg, Raphaele R. L.
AU - Grootenhuis, Martha A.
N1 - Funding Information: Funding was received from KiKa (grant number 416) and the Swedish Research Council (grant number 2021 − 00328), who did not have a role in the study design or conduct. Publisher Copyright: © 2023, BioMed Central Ltd., part of Springer Nature.
PY - 2023/12/1
Y1 - 2023/12/1
N2 - Background: Comprehensive insight in the longitudinal development of health-related quality of life (HRQOL) after childhood cancer diagnosis could improve quality of care. Thus, we aimed to study the course and biopsychosocial determinants of HRQOL in a unique national cohort of children with cancer. Methods: HRQOL of 2154 children with cancer was longitudinally reported (median: 3 reports) between diagnosis and 5 years after, using the pediatric quality of life inventory generic core scales (PedsQL). HRQOL was modelled over time since diagnosis using mixed model analysis for children 2–7 years (caregiver-reports) and ≥ 8 years (self-reports). Differences in the course between hematological, solid and central nervous system malignancies were studied. Additional associations of demographics, disease characteristics (age at diagnosis, relapse, diagnosis after the national centralization of childhood cancer care and treatment components) and caregiver distress (Distress thermometer) were studied. Results: Overall, HRQOL improved with time since diagnosis, mostly in the first years. The course of HRQOL differed between diagnostic groups. In children aged 2–7 years, children with a solid tumor had most favorable HRQOL. In children aged ≥ 8 years, those with a hematological malignancy had lower HRQOL around diagnosis, but stronger improvement over time than the other diagnostic groups. In both age-groups, the course of HRQOL of children with a CNS tumor showed little or no improvement. Small to moderate associations (β: 0.18 to 0.67, p < 0.05) with disease characteristics were found. Centralized care related to better HRQOL (β: 0.25 to 0.44, p < 0.05). Caregiver distress was most consistently associated with worse HRQOL (β: − 0.13 to − 0.48, p < 0.01). Conclusions: The HRQOL course presented can aid in identifying children who have not fully recovered their HRQOL following cancer diagnosis, enabling early recognition of the issue. Future research should focus on ways to support children, especially those with a CNS tumor, for example by decreasing distress in their caregivers.
AB - Background: Comprehensive insight in the longitudinal development of health-related quality of life (HRQOL) after childhood cancer diagnosis could improve quality of care. Thus, we aimed to study the course and biopsychosocial determinants of HRQOL in a unique national cohort of children with cancer. Methods: HRQOL of 2154 children with cancer was longitudinally reported (median: 3 reports) between diagnosis and 5 years after, using the pediatric quality of life inventory generic core scales (PedsQL). HRQOL was modelled over time since diagnosis using mixed model analysis for children 2–7 years (caregiver-reports) and ≥ 8 years (self-reports). Differences in the course between hematological, solid and central nervous system malignancies were studied. Additional associations of demographics, disease characteristics (age at diagnosis, relapse, diagnosis after the national centralization of childhood cancer care and treatment components) and caregiver distress (Distress thermometer) were studied. Results: Overall, HRQOL improved with time since diagnosis, mostly in the first years. The course of HRQOL differed between diagnostic groups. In children aged 2–7 years, children with a solid tumor had most favorable HRQOL. In children aged ≥ 8 years, those with a hematological malignancy had lower HRQOL around diagnosis, but stronger improvement over time than the other diagnostic groups. In both age-groups, the course of HRQOL of children with a CNS tumor showed little or no improvement. Small to moderate associations (β: 0.18 to 0.67, p < 0.05) with disease characteristics were found. Centralized care related to better HRQOL (β: 0.25 to 0.44, p < 0.05). Caregiver distress was most consistently associated with worse HRQOL (β: − 0.13 to − 0.48, p < 0.01). Conclusions: The HRQOL course presented can aid in identifying children who have not fully recovered their HRQOL following cancer diagnosis, enabling early recognition of the issue. Future research should focus on ways to support children, especially those with a CNS tumor, for example by decreasing distress in their caregivers.
KW - Central nervous system tumor
KW - Childhood cancer
KW - Emotional functioning
KW - Health-related quality of life
KW - Longitudinal study
KW - Parental distress
KW - Physical functioning
KW - Social functioning
UR - http://www.scopus.com/inward/record.url?scp=85170710102&partnerID=8YFLogxK
U2 - https://doi.org/10.1186/s12885-023-11379-z
DO - https://doi.org/10.1186/s12885-023-11379-z
M3 - Article
C2 - 37697253
SN - 1471-2407
VL - 23
JO - BMC Cancer
JF - BMC Cancer
IS - 1
M1 - 855
ER -