The course of health-related quality of life after the diagnosis of childhood cancer: a national cohort study
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 wit...
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| Format: | Article |
| Language: | English |
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BMC
2023-09-01
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| Series: | BMC Cancer |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12885-023-11379-z |
| _version_ | 1797559106662301696 |
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| author | Marloes van Gorp Elin Irestorm Jos W. R. Twisk Natasja Dors Annelies Mavinkurve-Groothuis Antoinette Y. N. Schouten van Meeteren Judith de Bont Esther M. M. van den Bergh Wietske van de Peppel van der Meer Laura R. Beek Femke K. Aarsen Nienke Streefkerk Raphaele R. L. van Litsenburg Martha A. Grootenhuis |
| author_facet | Marloes van Gorp Elin Irestorm Jos W. R. Twisk Natasja Dors Annelies Mavinkurve-Groothuis Antoinette Y. N. Schouten van Meeteren Judith de Bont Esther M. M. van den Bergh Wietske van de Peppel van der Meer Laura R. Beek Femke K. Aarsen Nienke Streefkerk Raphaele R. L. van Litsenburg Martha A. Grootenhuis |
| author_sort | Marloes van Gorp |
| collection | DOAJ |
| description | 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 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. |
| first_indexed | 2024-03-10T17:39:57Z |
| format | Article |
| id | doaj.art-8597ff3df2794dbbbadffcb1dd370ff3 |
| institution | Directory Open Access Journal |
| issn | 1471-2407 |
| language | English |
| last_indexed | 2024-03-10T17:39:57Z |
| publishDate | 2023-09-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Cancer |
| spelling | doaj.art-8597ff3df2794dbbbadffcb1dd370ff32023-11-20T09:43:25ZengBMCBMC Cancer1471-24072023-09-0123111310.1186/s12885-023-11379-zThe course of health-related quality of life after the diagnosis of childhood cancer: a national cohort studyMarloes van Gorp0Elin Irestorm1Jos W. R. Twisk2Natasja Dors3Annelies Mavinkurve-Groothuis4Antoinette Y. N. Schouten van Meeteren5Judith de Bont6Esther M. M. van den Bergh7Wietske van de Peppel van der Meer8Laura R. Beek9Femke K. Aarsen10Nienke Streefkerk11Raphaele R. L. van Litsenburg12Martha A. Grootenhuis13Princess Máxima Center for pediatric OncologyPrincess Máxima Center for pediatric OncologyDepartment of Epidemiology and Data Science, Amsterdam UMC, Location VU University Medical Center, Amsterdam Public Health Research InstitutePrincess Máxima Center for pediatric OncologyPrincess Máxima Center for pediatric OncologyPrincess Máxima Center for pediatric OncologyPrincess Máxima Center for pediatric OncologyPrincess Máxima Center for pediatric OncologyPrincess Máxima Center for pediatric OncologyPrincess Máxima Center for pediatric OncologyPrincess Máxima Center for pediatric OncologyPrincess Máxima Center for pediatric OncologyPrincess Máxima Center for pediatric OncologyPrincess Máxima Center for pediatric OncologyAbstract 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.https://doi.org/10.1186/s12885-023-11379-zChildhood cancerHealth-related quality of lifePhysical functioningEmotional functioningSocial functioningLongitudinal study |
| spellingShingle | Marloes van Gorp Elin Irestorm Jos W. R. Twisk Natasja Dors Annelies Mavinkurve-Groothuis Antoinette Y. N. Schouten van Meeteren Judith de Bont Esther M. M. van den Bergh Wietske van de Peppel van der Meer Laura R. Beek Femke K. Aarsen Nienke Streefkerk Raphaele R. L. van Litsenburg Martha A. Grootenhuis The course of health-related quality of life after the diagnosis of childhood cancer: a national cohort study BMC Cancer Childhood cancer Health-related quality of life Physical functioning Emotional functioning Social functioning Longitudinal study |
| title | The course of health-related quality of life after the diagnosis of childhood cancer: a national cohort study |
| title_full | The course of health-related quality of life after the diagnosis of childhood cancer: a national cohort study |
| title_fullStr | The course of health-related quality of life after the diagnosis of childhood cancer: a national cohort study |
| title_full_unstemmed | The course of health-related quality of life after the diagnosis of childhood cancer: a national cohort study |
| title_short | The course of health-related quality of life after the diagnosis of childhood cancer: a national cohort study |
| title_sort | course of health related quality of life after the diagnosis of childhood cancer a national cohort study |
| topic | Childhood cancer Health-related quality of life Physical functioning Emotional functioning Social functioning Longitudinal study |
| url | https://doi.org/10.1186/s12885-023-11379-z |
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