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

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.

Palliative Home Visit Intervention and Emergency Admission in Pediatric Cancer Children: A Randomized Controlled Trial.

Palliative care model can be carried out at home, in the community, or in long-term home care. Home visits in palliative care have important role in providing a continuity of care and psychosocial support to both the patient and their parents/caretakers. This study is aimed to determine the impact of home visit program to the frequency of emergency room (ER) admissions in children with cancer. METHODS: Randomized controlled trial of 60 pediatric patients with malignancies who were given palliative care (a 3-months home visit) and those who were not. Patients consisted of cancer children aged 2-18 years old. Emergency room admissions from the last three months were recorded before patients were enrolled. A two-way communication between a trained health worker and patients with or without their parents were conducted as the intervention. Interventions were given in six sessions (1 session every 2 weeks). During study period, ER admissions were recorded further. Data was analyzed using bivariate analysis, OR calculations were performed. RESULTS: In the intervention group, 11 children (36.7%) had fewer ER admissions, while 4 (13.3%) had more and 15 children (50%) had constant ER admissions, respectively. Meanwhile, only 2 children (7.7%) were found to have fewer ER admissions in the control group. Others in this group have varying results, 11 children (42.3%) were found to have more admissions to the ER and 13 children (50%) had constant ER admissions. In the intervention group, ER admissions were reduced by 10 visits, while in the control group, the admissions were increased by 16 visits (OR 4.77, 95% CI 1.29-17.65; p=0.018). CONCLUSION: Palliative home visit provides care matched to patient and family needs, trained parents to be skillful in managing child, and enabling avoidance of unnecessary hospitalizations (4.7 times).

Correlation of Pediatric Palliative Screening Scale and Quality of Life in Pediatric Cancer Patients.

CONTEXT: Palliative care in children is used to be only intended for those in near end-of-life phase. Ideally, palliative intervention should be given since the first time of cancer diagnosis. Palliative care is introduced from the beginning of the treatment by acknowledging that it helps to ensure an ongoing focus on the quality of life (QOL) so that children still can enjoy their life. Several approaches have been used to identify children with the need of palliative care. AIMS: The aim was to describe the use of Paediatric Palliative Screening Scale (PaPaS Scale) and its depiction to the QOL of children with malignancies. SETTINGS AND DESIGN: A cross-sectional study was conducted in sixty children age 2-18 years with malignancies, who were consulted to the palliative team. SUBJECTS AND METHODS: Sixty participants were recruited randomly during the study. PaPaS Scale and QOL (using PedsQL™ cancer module 3.0) were assessed at the same time. Cutoff points of 67 for parent-proxy report and 68.9 for self-report were used, those who have scores <67 and <68.9 were grouped as low QOL group. PaPaS scale was divided into three groups: (1) no palliative care needs (score 10-14), (2) considered palliative care (15-24), and (3) need for palliative (≥25). STATISTICAL ANALYSIS: Differences between palliative score and QOL were analyzed using Chi-square and Fisher test. RESULTS: Children who have lower QOL based on parent-proxy report (<67) included 25 children; they consist of 16 children (64%) with score 10-14, four children (16%) with score 15-24, and five children (20%) with score ≥25. Children with higher QOL (16 children) consist of ten children (62.5%) with score 10-14, four children (25%) scores 15-24, and two children (12.5%) with score ≥25. In the self-report, children with low QOL (eight children) consist of four children (50%) with score 10-14, four children (50%) with score 15-24, and no children with score ≥ 25. Children with higher QOL (11 children) consist of eight children (72.2%) with score 10-14, two children (18.2%) with scores 15-24, and one child (9.1%) with score ≥25. Statistical analysis showed no correlation between PaPaS score and QOL of children with malignancies in parent-proxy report (P = 0.89) and self-report (P = 0.37). CONCLUSIONS: This study showed that children with malignancies already had lower QOL despite the low PaPaS scale they had. The results of this study support the provision of early palliative intervention, starting with a small proportion of intervention to improve the QOL of cancer child.