Efforts to Improve the Quality of Life of Childhood Leukemia Sufferers Through Research

FK-KMK UGM. Acute lymphoblastic leukemia (ALL) is the most common malignant disease occurring in childhood. ALL is a malignancy of blood cells originating from the bone marrow. Peak diagnosis occurs at the age of 2-5 years.

The Department of Child Health, Faculty of Medicine, Public Health and Nursing UGM collaborates with the Division of Hematology and Oncology, Department of Child Health, Padjadjaran University/RSUD Dr. Hasan Sadikin Faculty (Bandung), and Faculty of Medicine and Department of Child Health Sciences, Faculty of Medicine, Brawijaya University/Dr. Saiful Anwar General Hospital (Malang) in a study called the Childhood Acute Lymphoblastic Leukemia’s Delay, Abandonment, and Quality of Life (CALLDAQ Study).

Dr. Eddy Supriyadi, Sp.A(K), Ph.D is the principal researcher with a team of dr. Mei Neni Sitaresmi, Sp.A(K), Ph.D, dr. Amirah Ellyza Wahdi, MSPH, dr. Bambang Ardianto, Ph.D, M.Sc, Sp.A(K), Althaf Setyawan, S.Sc., MPH, dr. Salsabila Sandi, Ignatius Purwanto, Naufal Farah Azizah, dr. Nur Suryawan, Sp.A(K), M.Kes, and dr. Sony Wicaksono, Sp.A(K).

This research project aims to assess the stratification of differences in independent predictors and outcomes, including the quality of life status of patients and survivors of acute lymphoblastic leukemia (ALL) before and after the implementation of universal health coverage, which is implemented in Indonesia as the Social Health Insurance Administering Body (BPJS) which was started in 2014.

Access to appropriate diagnosis and treatment in developing countries like Indonesia is influenced by the quality of health services, availability of curative services, cultural barriers, refusal of treatment, and poor treatment compliance. Socioeconomic status also has a significant effect on survival rates. Neglect of treatment is often associated with financial constraints.

Recent studies show that the impact of UHC on childhood cancer cases in Yogyakarta increases disease-free survival and reduces treatment abandonment in pediatric cancer patients. However, data regarding improving the quality of life free from this disease is still minimal.

Countries need to invest more in childhood cancer care, considering the survivors’ continuity and quality of life, given the aggressive nature of ALL treatments.

To overcome this lack of data, this project was implemented in three centers in Indonesia: RSUP Dr. Sardjito (Yogyakarta), Dr. Hasan Sadikin (Bandung), and Dr. Saiful Anwar (Malang).

Data collection involves gathering information on ALL patients diagnosed at three health centers between 2006 and 2022. A survey was conducted simultaneously on pediatric ALL survivors using the PedsQL questionnaire, which includes information on general well-being, family information, and service satisfaction health. The results of this research can help develop the application of UHC in Indonesia for better prevention, detection, treatment, and rehabilitation for pediatric ALL patients. (Contributor: dr. Amirah Ellyza Wahdi, MSPH. Editor: dr. Eddy Supriyadi, Sp.A(K), Ph.D. Photo: freepik.com)