Veerle Piette1,2, Kim Beernaert3,4, Joachim Cohen3,4, Nele S Pauwels5, Anne-Lore Scherrens3,4, Jutte van der Werff Ten Bosch6, Luc Deliens3,4. 1. End-of-Life Care Research Group, Vrije Universiteit Brussel and Ghent University, Brussels Health Campus-Building K Laarbeeklaan 103, 1090, Brussels, Belgium. veerle.piette@vub.be. 2. Department of Public Health and Primary Care, Universitair Ziekenhuis Gent, Ghent University, Entrance 42 (K3), 6th floor, Corneel Heymanslaan 10, 9000, Ghent, Belgium. veerle.piette@vub.be. 3. End-of-Life Care Research Group, Vrije Universiteit Brussel and Ghent University, Brussels Health Campus-Building K Laarbeeklaan 103, 1090, Brussels, Belgium. 4. Department of Public Health and Primary Care, Universitair Ziekenhuis Gent, Ghent University, Entrance 42 (K3), 6th floor, Corneel Heymanslaan 10, 9000, Ghent, Belgium. 5. Knowledge Centre for Health Ghent, Universitair Ziekenhuis Gent, Ghent University, Entrance 42 (K3), 1st floor Corneel Heymanslaan 10, 9000, Ghent, Belgium. 6. Department of Paediatrics, KidZ Health Castle Children's Hospital, Universitair Ziekenhuis Brussel, Vrije Universiteit Brussel, Dikke-Beuklaan 128, 1090, Brussels, Belgium.
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: 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.
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: 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.
Authors: Howard Balshem; Mark Helfand; Holger J Schünemann; Andrew D Oxman; Regina Kunz; Jan Brozek; Gunn E Vist; Yngve Falck-Ytter; Joerg Meerpohl; Susan Norris; Gordon H Guyatt Journal: J Clin Epidemiol Date: 2011-01-05 Impact factor: 6.437
Authors: Joanne Wolfe; Liliana Orellana; E Francis Cook; Christina Ullrich; Tammy Kang; Jeffrey Russell Geyer; Chris Feudtner; Jane C Weeks; Veronica Dussel Journal: J Clin Oncol Date: 2014-03-10 Impact factor: 44.544
Authors: Andrew Papworth; Julia Hackett; Bryony Beresford; Fliss Murtagh; Helen Weatherly; Sebastian Hinde; Andre Bedendo; Gabriella Walker; Jane Noyes; Sam Oddie; Chakrapani Vasudevan; Richard Feltbower; Bob Phillips; Richard Hain; Gayathri Subramanian; Andrew Haynes; Lorna K Fraser Journal: NIHR Open Res Date: 2022-05-13