Abstract
Background
Children with serious illness suffer from symptoms at the end of life that often fail to be relieved. An overview is required of healthcare interventions improving and decreasing quality of life (QOL) for children with serious illness at the end of life.
Methods
A systematic review was performed in five databases, January 2000 to July 2018 without language limit. Reviewers selected quantitative studies with a healthcare intervention, for example, medication or treatment, and QOL outcomes or QOL-related measures, for example, symptoms, for children aged 1–17 years with serious illness. One author assessed outcomes with the QualSyst and GRADE (Grades of Recommendation, Assessment, Development, and Evaluation) Framework; two authors checked a 25% sample. QOL improvement or reduction was categorized.
Results
Thirty-six studies met the eligibility criteria studying 20 unique interventions. Designs included 1 randomized controlled trial, 1 cross-sectional study, and 34 cohort studies. Patient-reported symptom monitoring increased QOL significantly in cancer patients in a randomized controlled trial. Dexmedetomidine, methadone, ventilation, pleurodesis, and palliative care were significantly associated with improved QOL, and chemotherapy, stem cell transplant, and hospitalization with reduced QOL, in cohort studies.
Conclusions
Use of patient-controlled symptom feedback, multidisciplinary palliative care teams with full-time practical support, inhalation therapy, and off-label sedative medication may improve QOL. Curative therapy may reduce QOL.
Impact
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QOL for children at the end of life may be improved with patient-controlled symptom feedback, multidisciplinary palliative care teams with full-time practical support, inhalation therapy, and off-label sedative medication.
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QOL for children at the end of life may be reduced with therapy with a curative intent, such as curative chemotherapy or stem cell transplant.
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A comprehensive overview of current evidence to elevate currently often-failing QOL management for children at the end of life.
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New paradigm-level indicators for appropriate and inappropriate QOL management in children at the end of life.
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New hypotheses for future research, guided by the current knowledge within the field.
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Various healthcare interventions (as described above) could or might be employed as tools to provide relief in QOL management for children with serious illness, such as cancer, at the end of life, and therefore could be discussed in pediatrician end-of-life training to limit the often-failed QOL management in this population, cave the one-size-fits-all approach for individual cases.
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Multidisciplinary team efforts and 24/7 presence, especially practical support for parents, might characterize effective palliative care team interventions for children with serious illness at the end of life, suggesting a co-regulating link between well-being of the child partly to that of the parents
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Hypothesis-oriented research is needed, especially for children with nonmalignant disorders, such as genetic or neurological disorders at the end of life, as well as QOL outcomes for intervention research and psychosocial or spiritual outcomes.
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Acknowledgements
All stages of this study were funded by Research Foundation-Flanders (FWO; grant no. 12V8718). The study sponsors had no role in study design, the collection, analysis and interpretation of data, the writing of the report, and the decision to submit the manuscript for publication. A.-l.S. is a Predoctoral Fellow at the Research Foundation-Flanders. K.B. is a Postdoctoral Fellow at the Research Foundation-Flanders (FWO).
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V.P. and K.B. conceived the original research idea, oversaw the conceptual and methodological development of the protocol, contributed to the revisions of subsequent drafts of the protocol, developed the search strategy, contributed to the selection, extraction, and assessment process, wrote the first version of the paper, and contributed to the revisions of subsequent drafts of the article. L.D. and J.C. oversaw the conceptual and methodological development of the protocol, contributed to the revisions of subsequent drafts of the protocol, contributed to the development and validation of the search strategy, and contributed to the revisions of subsequent drafts of the article. N.S.P. provided input on the conceptual and methodological development of the protocol, contributed to the revisions of subsequent drafts of the protocol, contributed to development and validation of the search strategy, contributed to the selection, extraction, and assessment process, and contributed to the revisions of subsequent drafts of the article. J.v.d.W.t.B. and A.-l.S. provided input on the conceptual and methodological development of the protocol, contributed to the selection, extraction, and assessment process and contributed to the revisions of subsequent drafts of the article. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
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Supplementary Information: Validated MEDLINE Search Strategy (PubMed Interface); QualSyst Ratings Per Study; GRADE Ratings for Evidence Certainty for Significant Outcomes Per Healthcare Intervention
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Piette, V., Beernaert, K., Cohen, J. et al. Healthcare interventions improving and reducing quality of life in children at the end of life: a systematic review. Pediatr Res 89, 1065–1077 (2021). https://doi.org/10.1038/s41390-020-1036-x
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DOI: https://doi.org/10.1038/s41390-020-1036-x
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