Paediatric palliative care at home: a single centre's experience

Chong, Lee Ai; Khalid, Farah

doi:10.11622/smedj.2016032

Cited by 14 publications

(20 citation statements)

References 25 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…CPAP or NIV has been used within the context of palliative care in few children with end-stage malignancies, musculo-skeletal disease or storage disease, mainly infants with SMA type I [63,87,229] but also with mucolipidosis [45] for comfort reasons. Use of NIV as a component of palliative care is limited by lack of experience, cost, unavailability in many hospitals, and lack of literature reporting experience and efficacy.…”

Section: Literature Review (Online Table 8)mentioning

confidence: 99%

ERS statement on paediatric long-term noninvasive respiratory support

et al. 2021

View full text Add to dashboard Cite

Long term noninvasive respiratory support, comprising continuous positive airway pressure (CPAP) and noninvasive ventilation (NIV), in children is expanding worldwide, with increasing complexities of children being considered for this type of ventilator support and expanding indications such as palliative care. There have been improvements in equipment and interfaces. Despite growing experience, there are still gaps in a significant number of areas: there is a lack of validated criteria for CPAP/NIV initiation, optimal follow-up and monitoring; weaning and long term benefits have not been evaluated. Therapeutic education of the caregivers and the patient is of paramount importance, as well as continuous support and assistance, in order to achieve optimal adherence. The preservation or improvement of the quality of life of the patient and caregivers should be a concern for all children treated with long term CPAP/NIV. As NIV is a highly specialised treatment, patients are usually managed by an experienced pediatric multidisciplinary team. This Statement written by experts in the field of pediatric long term CPAP/NIV aims to emphasize on the most recent scientific input and should open up to new perspectives and research areas.

show abstract

Section: Literature Review (Online Table 8)mentioning

confidence: 99%

ERS statement on paediatric long-term noninvasive respiratory support

et al. 2021

View full text Add to dashboard Cite

show abstract

“…3 Home visits are believe to have such important roles in PC to provide a continuity of care and psychosocial support to both patients and their parents or guardians. 10,11 Several healthcare facilities in developed countries have established home visit program in PC. 10,12 In Indonesia, there hasn't been any studies to prove the advantages of giving PC and home visit program to children with malignancies.…”

mentioning

confidence: 99%

Home-based Palliative Intervention to Improve Quality of Life in Children with Cancer: A Randomized Controlled Trial

Andriastuti

Halim

Tunjungsari

et al. 2019

Preprint

View full text Add to dashboard Cite

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).

show abstract

“…In the developed countries, a major part of PC is given at home and long-term care facilities where patients stay (Zhi and Smith, 2015). Home visits are believed to have important roles in PC to provide a continuity of care and psychosocial support to both patients and their parents or guardians (Shoemaker et al, 2012;Chong and Khalid, 2016). Several healthcare facilities in the developed countries have established home visit programs based on PC, called home-based palliative care (HBPC) (Shoemaker et al, 2012;Chong et al, 2018).…”

Section: Research Articlementioning

confidence: 99%

Home-based Palliative Intervention to Improve Quality of Life in Children with Cancer: A Randomized Controlled Trial

Andriastuti

Halim

Tunjungsari

et al. 2022

Asian Pac J Cancer Prev

View full text Add to dashboard Cite

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.

show abstract

Paediatric palliative care at home: a single centre's experience

Cited by 14 publications

References 25 publications

ERS statement on paediatric long-term noninvasive respiratory support

ERS statement on paediatric long-term noninvasive respiratory support

Home-based Palliative Intervention to Improve Quality of Life in Children with Cancer: A Randomized Controlled Trial

Home-based Palliative Intervention to Improve Quality of Life in Children with Cancer: A Randomized Controlled Trial

Contact Info

Product

Resources

About