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The course of health-related quality of life after the diagnosis of childhood cancer : a national cohort study

van Gorp, Marloes ; Irestorm, Elin LU orcid ; Twisk, Jos W R ; Dors, Natasja ; Mavinkurve-Groothuis, Annelies ; Meeteren, Antoinette Y N Schouten van ; de Bont, Judith ; van den Bergh, Esther M M ; van der Meer, Wietske van de Peppel and Beek, Laura R , et al. (2023) In BMC Cancer 23. p.1-13
Abstract

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... (More)

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.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Child, Humans, Neoplasms/diagnosis, Cohort Studies, Quality of Life, Hematologic Neoplasms, Self Report
in
BMC Cancer
volume
23
article number
855
pages
1 - 13
publisher
BioMed Central (BMC)
external identifiers
  • scopus:85170710102
  • pmid:37697253
ISSN
1471-2407
DOI
10.1186/s12885-023-11379-z
language
English
LU publication?
yes
additional info
© 2023. BioMed Central Ltd., part of Springer Nature.
id
8bbc9d45-2564-4bbc-b9e6-8aa73d9691b1
date added to LUP
2023-09-25 13:43:42
date last changed
2024-04-19 01:36:11
@article{8bbc9d45-2564-4bbc-b9e6-8aa73d9691b1,
  abstract     = {{<p>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.</p><p>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.</p><p>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 &lt; 0.05) with disease characteristics were found. Centralized care related to better HRQOL (β: 0.25 to 0.44, p &lt; 0.05). Caregiver distress was most consistently associated with worse HRQOL (β: - 0.13 to - 0.48, p &lt; 0.01).</p><p>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.</p>}},
  author       = {{van Gorp, Marloes and Irestorm, Elin and Twisk, Jos W R and Dors, Natasja and Mavinkurve-Groothuis, Annelies and Meeteren, Antoinette Y N Schouten van and de Bont, Judith and van den Bergh, Esther M M and van der Meer, Wietske van de Peppel and Beek, Laura R and Aarsen, Femke K and Streefkerk, Nienke and van Litsenburg, Raphaele R L and Grootenhuis, Martha A}},
  issn         = {{1471-2407}},
  keywords     = {{Child; Humans; Neoplasms/diagnosis; Cohort Studies; Quality of Life; Hematologic Neoplasms; Self Report}},
  language     = {{eng}},
  month        = {{09}},
  pages        = {{1--13}},
  publisher    = {{BioMed Central (BMC)}},
  series       = {{BMC Cancer}},
  title        = {{The course of health-related quality of life after the diagnosis of childhood cancer : a national cohort study}},
  url          = {{http://dx.doi.org/10.1186/s12885-023-11379-z}},
  doi          = {{10.1186/s12885-023-11379-z}},
  volume       = {{23}},
  year         = {{2023}},
}