Involving 60 pediatric patients with malignancy in the span of 12 weeks, this study was the first randomized controlled trial about the role of home-based pediatric palliative intervention in Indonesia. From statistical analysis, no significant difference was found out of the two groups’ sociodemographic data. Initial assessment for quality of life in the intervention group showed no significant difference based on the statistical analysis of the total mean score and the entire dimensions as well (Table 1). Both groups in this study showed similar characteristic at the beginning of study.
In the final assessment, the intervention group had a more significant score compared to the control group. This shows that palliative intervention, concurrently done with treating the underlying disease could improve pediatric cancer patients’ quality of life, similar with another study by Bakitas et al, which stated that early palliative intervention in adult patients could improve quality of life.5 Several other studies also stated similar results; that palliative intervention could provide better QoL and also improve the end-of-life stage.14,15−17 Palliative intervention should be preventive instead of curative, as well as improves quality of life by early identification, accurate assessment, and treatment of pain and other symptoms, such as physical, psychosocial, and spiritual. Health providers, together with patients and their families could decide the goal for care (curative or palliative). Palliative intervention could improve patients’ outcome, including, but not limited to, physical, psychosocial, patients’ satisfaction, even quality of life.6−8,18
By the end of this study, the quality of life of the intervention group increased, while the control group it decreased. This showed that pediatric cancer patient tend to have lower quality of life as the disease progressed, and reaching its lowest during the end-of-life stage.19 Several other studies also stated that pediatric cancer patients would have decreased quality of life during its treatment course.20,21 Decreasing quality of life in children could result from a wide variety of factors, such as shock during the initial diagnosis reveal, followed by the course of the disease, as well as the inexplicable length of treatment. During its disease course, children would need to develop a defense mechanism shown in a variety of attitudes and mental states. This process would continue to progress if not intervened immediately. Quality of life would start decreasing during the first 3–5 months after diagnosis. Psychological problems, low self-worth, even depression issues often arise.19 The results of this study strengthen the belief to give palliative intervention on pediatric cancer patients, starting early in the disease progression along with the disease trajectory. It is extremely important for health providers to be able to comprehend the ideal QoL patient should have.22
Significantly improved functional areas include pain, nausea, procedure anxiety, treatment anxiety, and worry. The most common side effects in the treatment of pediatric cancer are pain and nausea.9 This study shows that palliative intervention would help improve the quality of life of these children by preventing pain and nausea worsening in accordance to the patients’ disease treatment. Mahmood et al, also stated that early palliative consultation was indeed feasible in pediatric cancer patients, especially the high-risk ones. Palliative care could provide assistance on symptoms control and communication between parents, patients, and health providers. The physical aspect, cognitive, and communication did not improve significantly on the intervention group. Therefore, result in this study did not align with the theory in which palliative consultation could assist the communication between parents, patients, and health providers.23 Since this study did not involve child psychiatrists, such discrepancy is possible, because disruption in communication could not be treated optimally by the palliative team. Disruption in communication could be caused by the child’s psychological disturbances due to lack of activities, frequent hospitalization, and dread of what the future would bring.19 This asserts the need for a child psychiatrist’s role in the integrated palliative program.
Most of the assessment for quality of life in this study was done by proxy. Self-report questionnaires were fewer in this study, because most of the subjects (76,7%) were children under 12 years old. Various cognitive and verbal intelligence between each child made self-report more challenging to do. Based on the recommendation made by Varni et al, a questionnaire designed to be filled by parents/guardians should be used for small children, cognitive-impaired children, gravely ill children, or those who are too exhausted to fill one. Parents/guardians’ questionnaires should replace self-report questionnaires, when the child is able to fill it themselves or using their own perspectives.24 A meta-analysis stated that in general, there is a good amount of synergy between the parents and the children’s reports, with correlation score of r > 50 in physical, functional, and symptoms aspect.25 In this study, PedsQL™ cancer module 3.0 was used using the domains of functional and symptoms, making the synergy between parents and children’s reports considered good enough.
Sleep disturbances and anorexia were the significantly reduced symptoms intensity in this research. One of the major roles of palliative care was symptoms treatment or management while patients were being cared for. In cancer patients, the five most common symptoms are pain, anorexia, sleep disturbances, difficulty breathing, and exhaustion.9 Palliative approach has the role to bridge non-medical problems that arise while patients undergo treatment, especially in the cases of unavailable drugs or non-optimal medical treatment.4 The use of antiemetic agents would be limited due to the restriction of our national drug formulary (only given for three days after chemotherapy). The use of sedatives or tranquilizer in children are only recommended in certain cases, under the supervision of child psychiatrists. This study proved that home-based palliative intervention could be one of the modalities to be used in managing such symptoms in pediatric cancer patients.
The final pain score between intervention group was found to be lower than the control group, even though statistically insignificant. We found that there was also a form of symptomatic treatment given to all subjects of our study (including the control group) by giving analgesics, as per the standard of pain treatment, since pain is one of the obligatory symptoms to be treated with medicines. However, the decreasing pain score of the intervention group lower than those in the control group, showed that palliative intervention could help reduce pain in synergy with medical intervention. The combination of medicinal therapy and palliative approach would elucidate better pain management for pediatric cancer patient.
Cancer treatment approach does not only come from the medical aspect, but also other symptoms—be it physical, psychosocial, emotional, and spiritual. All of them should be tended to, received adequate treatment in order to maintain patients’ quality of life.19 Integrated palliative care gives health providers chances to deliver comprehensive treatment for patients, consisted of aspects such as psychological, developmental, spiritual, and better symptoms management. American Academy of Pediatrics (AAP) had offered an integrated, interdisciplinary approach in order to achieve a competent, compassionate care. Palliative approach is offered during the time of diagnosis up until the end of the disease’s progress—either in health or death.26 Ideally, pediatric cancer patients should automatically meet the criteria for palliative care, even if it’s still early on the progress of the disease. But in fact, many clinicians do not have enough understanding about the importance and the roles of early palliative care initiations on children with chronic or life-threatening illnesses.27,28 Moreover, clinicians working on facilities with hospitalization services only have limited time to dive in the communities. Hospitals are not fit for managing patients’ and their families’ psychosocial problems.29 Hospital-based oncologic treatment is limited to the hospital, and are not considered to be able to give the continued care for physical, psychosocial, emotional, and spiritual symptoms patients and their families are probably going through.12 Those bariers made optimal PPC services are difficult to be achieved. Home-based PC is way to overcome it and through it we can helps patients and their families manage the symptoms, reduce anxieties as well as psychological distress.27 It is proved in this study that palliative intervention in the form of home visits are beneficial for improving quality of life as well as better symptoms management for pediatric cancer patients.