More than 22 million people in the world are predicted to be diagnosed with cancer in 2030. In Indonesia, in 2020 the number of new cases of cancer reached 396.914 cases and 234.511 patients were reported dead (Sung et al., 2021). There are three types of cancer in Indonesia that experienced the highest increase in the 2020 period, namely: breast cancer 16,6%, cervical cancer 9,2%, and lung cancer 8,8% (GLOBOCAN, 2020). Cancer causes an increase in the economic burden for patients, their families and health care providers. Household spending is also affected after a patient is diagnosed with cancer, because OOP costs (out-of-pocket) issued to support special treatment/therapy have not been fully covered by the National Health Insurance. This is coupled with direct non-medical costs that are still borne by patients and their families, as well as indirect costs that can affect the family's economic situation.
This research was conducted with the aim of understanding the experiences of cancer patients and their families in depth; know the factors that contribute to the process of patient care and treatment; know the estimated direct medical and non-medical costs as well as indirect costs that become OOP; as well as providing evidence-based recommendations to support government interventions on the issue of providing cancer patient care. This study uses a model illness trajectories in analyzing the findings of the field, so that the main focus is the course of the disease experienced by patients and their families. Use illness trajectories can represent the cumulative effect of a disease that affects physical symptoms, changes in patient individual and social functioning, as well as specifically examines each stage experienced by patients from the time they are diagnosed to experiencing further symptoms (Smit et al., 2019).
Furthermore, this study also uses the concept of OOP costs in health in order to describe the economic burden experienced by households or individuals due to loss of economic resources and opportunities due to the occurrence of a disease (Pisu et al, 2010). Compliance and willingness to continue undergoing treatment will also depend heavily on the patient's resilience in the progression of the disease they are experiencing. The concept of resilience or resilience becomes relevant and can be used to analyze the factors that contribute to the course of cancer from research informants.
Based on field findings, in the pre-diagnosis phase the majority of cancer patients ignore the initial symptoms they feel. This is caused by the lack of health literacy, so that before their condition gets worse they choose not to go to a health facility for check-ups. In addition, experience, motivation, and knowledge also influence the actions taken by cancer patients in this early phase. Then in the check-up phase at a health facility, this study found obstacles experienced by cancer patients, including: inadequate hospital services, minimal transparency of the stages of treatment delivered by doctors, and limited information regarding the referral stages provided by medical personnel to patients .
As for the factors that influence the process of care and treatment of cancer patients found namely: support from caregiver, family and extended family support, support from the community, information from third parties, and the patient's internal motivation to recover. The forms of support provided range from psychological support, mentoring, financial support, material support, support in seeking various information related to treatment, support for selecting health facilities, and arranging sources of funds for financing during treatment.
Findings related to non-medical direct costs include several substantial expenditures such as: transportation costs, accommodation (lodging), meals (other than hospital nutrition services), additional vitamins, alternative medicine, diapers, and costs for temporary childcare when patients go out for treatment. city. Transportation costs include land travel costs (including tolls or drivers), aircraft, motorcycle taxi and ship costs. As for the non-medical indirect costs found in this study, the loss of productivity of patients or their families. Loss of productivity such as salary cuts caused by absenteeism from work, prioritizing caring for cancer patients over work, or reducing work frequency due to accompanying patients undergoing treatment.
This study also conducted an analysis regarding the implications of field findings for cancer control policies in Indonesia. First, it relates to the factors that contribute to policy proposals based on the results of a qualitative analysis of field findings, namely: the long duration of treatment for cancer patients with high intensity has implications for direct non-medical expenses of patients and their families. The current policy is still focused on programs to prevent and improve case management for the prevention of Non-Communicable Diseases (NCD). So that attention to curative policies for the care and treatment of cancer patients has not been maximized.
Second, regarding direct medical expenses which include: medication/supplements, technology, targeted therapy, referral system, equal distribution of health facilities, and an increase in the number of oncology specialists. One of the policies in terms of cost efficiency is increasing the capacity of Health Technology Assessment (PTK). Health Technology Assessment in the National Health Insurance program (PTK-JKN) is a policy analysis that is carried out systematically with a multidisciplinary approach to assess the impact of using health technology. However, this policy is still focused on increasing the efficiency of financing from BPJS Kesehatan and health facilities, has not yet accommodated increasing the efficiency of patient/household spending on health.
Third, regarding direct non-medical expenses including: palliative care costs (home care), transportation costs, food costs, accommodation costs, and other expenses that are not included in the benefits package of the national health insurance. Policies related to palliative care in Indonesia are currently still focused on care in health facilities. Then for other direct non-medical expenditures it is also not included in the national health insurance benefits package.
Fourth, it relates to indirect costs that must be incurred by patients and their families, namely: the risk of losing a job due to caring for a family member who is diagnosed with cancer, salary cuts, not getting incentives at work, reduced income, decreased productivity, decreased mental health conditions. Currently there is no policy capable of encouraging psychoeducational treatment of patients as well caregiver in the same health facility.
