Treatment Outcome and Health Related Quality of Life in Childhood Cancer in Indonesia

Chapter 1 describes background information about childhood cancer and its treatment outcome. It also explains the importance of HRQOL, several factors that influence HRQOL in children with cancer, and how to measure HRQOL. Chapter 2 describes the treatment outcome of common and curable types of childhood cancer in a single tertiary academic hospital in Yogyakarta, Indonesia. Pediatric ALL has the highest survival compared to the other types of cancer. The effect of maternal education had a significant role in many ways, such as ability to understand medical information, follow treatment plans, and engage with healthcare providers, but the impact is not as strong as people claimed. Addressing the principal reasons for treatment failure is crucial to improving the delivery of care to children with common and curable types of cancer and thus achieving the envisioned 60% cure rate. Chapter 3 focuses on the survival of children with retinoblastoma in Indonesia, which is much lower compared to high-income and many other low and middle-income countries. Treatment abandonment is the most common cause of treatment failure. Older age at diagnosis is associated with more frequent progressive or relapsed disease and worse survival. Socio-demographic characteristics had no significant correlation with treatment failure. Interventions to improve public and healthcare providers’ awareness, early detection, and treatment adherence are required. Chapter 4 looks at the implementation of UHC in Indonesia, which has contributed significantly to better treatment outcomes and event-free survival of children with cancer. This study emphasizes the importance of health insurance in preventing abandonment and improving survival. Not only among low-income families but also among the higher socioeconomic classes, having insurance was the most influential factor in treatment success. Chapter 5 provides information regarding the HRQOL in healthy children and its determinants in community settings. The total score of HRQOL in our general pediatric population is higher (meaning better QOL) than the reference study. Half of the children (49.4% from proxy report and 50.1% from self-report) reported having acute illness during the last month. Lower HRQOL for children with acute health problems, younger age, history of low birth weight, abnormal delivery, lower fathers' educational level, and government-paid insurance for low-income families. Chapter 6 investigates the initial phase of treatment, concluding that more attention and guidance for children with cancer are required. For young children, interventions to reduce procedural and anxiety of treatment and to ameliorate communication are needed. For older children, improvement of psychological support will help them to better cope with cancer and enhance their HRQOL. Chapter 7 captures the HRQOL of children diagnosed with high-risk and standard-risk ALL during several critical treatment phases. HRQOL of Indonesian children with ALL at the beginning of treatment was similarly impaired as those in high-income countries, and most of the subscales improved during treatment. Interventions to maintain physical health and reduce procedural anxiety in early treatment are required. Chapter 8 provides a combination of historical comparison and prospective randomized study. In the prospective study, we could not demonstrate that the mobile phone calling intervention reduced treatment abandonment effectively. However, the historical comparison showed that our parental education program and health insurance program from the government had significantly reduced treatment abandonment in childhood ALL in Indonesia. Chapter 9 describes the reflections of thesis findings which answered four questions represented the aims of this study: 1) What is the profile of treatment outcome in Indonesian children with cancer? 2) How is the HRQOL of healthy children and children with cancer in Indonesia? 3) What are the determinant factors that influence the health-related quality of life? 4) What is the strategy to reduce treatment abandonment in Indonesian childhood cancer?