Objective: Over the past few years, an integrated approach of palliative care (PC) to chronic and/or life-threatening conditions care has been widely used. Home-based PC (HBPC) service is developed to meet the needs of patients at home; however, it has not been used widely. This study is aimed at determining the benefits of integrated HBPC for the quality of life (QoL) and symptoms intensity in Indonesian children with malignancies. Method: A randomized controlled trial was carried out to compare the quality of life between patients who were given PC (a three-month home visit) and those who did not receive PC (control group). Each group was constituted of thirty children with cancer and aged 2-18 years old and were consulted by a palliative team. The participants were randomly allocated to two groups. In the first and twelfth weeks of the intervention, all patients were assessed using the Pediatric Quality of Life Inventory (PedsQLTM) questionnaire cancer module 3.0 (report by proxy or self-report). Symptoms intensity (pain, anorexia, sleep disturbance) were scored by using Edmonton Symptoms Assessment Scale (ESAS). The mean score and each dimension score of both groups were compared and analyzed using bivariate analysis. Results: In total, fifty participants were included in the study. A significant difference was found between the two groups in terms of the mean total score in control group 62.39 and intervention group 81.63 (p<0.001). The QoL was improved in the intervention group, while it was declined in the control group as the disease progressed. The main improvements were in the pain and nausea aspects (p<0.001), followed by procedural anxiety (p=0.002), treatment anxiety (p=0.002), and worry (p=0.014). Palliative intervention significantly reduced sleep disturbances (p=0.003) and anorexia (p<0.001). Conclusion: Home-based PC improved several aspects of QoL and caused better symptom management in children with malignancies. An early intervention concurrent with the underlying treatment can improve QoL in these children.
Background: In these last few years, an integrated approach between palliative care (PC) and chronic and/or life-threatening conditions care have been widely used. Home-based PC service is developed to meet the needs of the patients at home, but hasn’t been applied widely. This study is aimed to determine the benefit of integrated home-based PC in the quality of life (QOL) and symtomps intensity of Indonesian children with malignancies. Method: A randomized controlled trial to compare the quality of life between patients who were given PC (a 3-month home visit) and those who were not (intervention vs control group) was conducted, each group containing 30 children with cancer aged 2-18 years old who were consulted to palliative team. Participants were randomly assigned into each group. In the first and twelfth week of the intervention, all patients were assessed with the Pediatric Quality of Life Inventory (PedsQLTM) questionnaire cancer module 3.0 (report by proxy or self-report). Symptoms intensity (pain, anorexia, sleep disturbance) were scored by using Edmonton Symptoms Assessment Scale (ESAS). Mean score and each dimension score of both group were compared and analyzed using bivariate analysis. Results: A total 50 participants were included in analysis. Significant difference was found between two groups with average total score in control group 62.39 and intervention group 81.63 (p<0.001). In the intervention group QoL tends to improve, whereas in the control group, those did not get palliative intervention, quality of life tends to decrease as the disease progress. The most improved aspect in QoL is pain and nausea (p<0.001), followed by procedural anxiety (p=0.002), treatment anxiety (p=0.002), and worry (p=0.014). Palliative intervention was found to be able to reduce sleep disturbances (p=0.003) and anorexia (p<0.001) significantly. Conclusion: Home-based PC improved several aspects of the QOL and provide better symptoms management of children with malignancies. An early intervention concurrent with the underlying treatment is believed to be able to improve their quality of life. Trial Registration: This study has been retrospectively registered in ClinicalTrials.gov ID: NCT04067687 (August, 22nd 2019).
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