Healthcare interventions improving and reducing quality of life in children at the end of life: a systematic review.
Veerle E PietteKim BeernaertJoachim CohenNele S PauwelsAnne-Lore ScherrensJutte van der Werff Ten BoschLuc DeliensPublished in: Pediatric research (2020)
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. 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. A comprehensive overview of current evidence to elevate currently often-failing QOL management for children at the end of life. New paradigm-level indicators for appropriate and inappropriate QOL management in children at the end of life. New hypotheses for future research, guided by the current knowledge within the field. 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. 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 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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