More than 22 million people in the world in 2030 are predicted to be diagnosed with cancer. In Indonesia, in 2020 the number of new cases of cancer reached 396,914 cases and 234,511 patients were reported to have died (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 results in an increased economic burden for patients, their families and healthcare providers. Household expenditure is also affected after a patient is diagnosed with cancer, as out-of-pocket (OOP) costs incurred to support specialized treatment/therapy are not fully covered by the National Health Insurance. In addition, direct non-medical costs are still imposed on patients and their families, as well as indirect costs that can affect the family's economic situation.
This study was conducted with the aim of understanding the experiences of cancer patients and their families in depth; knowing the factors that contribute to the patient's care and treatment process; knowing the estimated direct medical and non-medical costs and indirect costs that become OOP; and providing evidence-based recommendations to support interventions by the government in the issue of cancer patient service delivery. This study uses the illness trajectory model in analyzing the field findings, so the main focus is the disease journey experienced by patients and their families. The use of the illness trajectory can represent the cumulative effects of the disease that affect physical symptoms, changes in individual and social functioning of patients, and specifically examine each stage experienced by patients from the initial diagnosis to experiencing subsequent 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 the loss of economic resources and opportunities due to the occurrence of an illness (Pisu et al., 2010). Adherence and willingness to continue undergoing treatment will also depend on the patient's resilience in the progression of the disease. The concept of resilience is relevant and can be used to analyze the factors that contribute to the cancer course of the study informants.
Based on field findings, in the pre-diagnosis phase the majority of cancer patients ignore the initial symptoms they feel. This is due to the lack of health literacy, so that before the condition is severe they choose not to check themselves to a health facility. In addition, experience, motivation and knowledge also influence the actions taken by cancer patients in this early phase. Then in the phase of going to health facilities, this study found barriers experienced by cancer patients include: inadequate hospital services, minimal transparency of the stages of treatment delivered by doctors, and limited information regarding the stages of referral provided by medical personnel to patients.
The factors that influence the process of care and treatment of cancer patients found are: support from caregivers, support from family and extended family, support from the community, information from third parties, and internal motivation of patients to recover. The forms of support provided vary from psychological support, assistance, financial support, material support, support in seeking various information related to treatment, support for choosing health facilities, and arranging financial resources during treatment.
Findings related to non-medical direct costs include several substantial expenses such as: transportation costs, accommodation (lodging), meals (other than hospital nutrition services), additional vitamins, alternative medicine, diapers, and costs for temporary childcare when the patient is out of town. Transportation costs include land travel costs (including tolls or drivers), airplane, motorcycle taxi, and boat costs. As for non-medical indirect costs found in this study, it is the loss of productivity of patients or their families. Loss of productivity such as salary cuts due to absence from work, prioritizing caring for cancer patients over work, or reducing the frequency of work due to accompanying patients undergoing treatment.
This study also analyzed the implications of the field findings for cancer control policies in Indonesia. First, related to the factors that contribute to policy proposals based on the results of qualitative analysis of field findings, namely: the long duration of treatment for cancer patients with high intensity has implications for the direct non-medical expenses of patients and their families. The current policy still focuses on prevention programs and improving case management to tackle Non-Communicable Diseases (NCDs). So that attention to curative policies for the care and treatment of cancer patients has not been maximized.
Second, regarding direct medical expenditure which includes: treatment/supplements, technology, targeted therapy, referral systems, equitable distribution of health facilities, and increasing the number of oncology specialists. One of the policies in terms of financial 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 conducted systematically with a multidisciplinary approach to assess the impact of the use of health technology. However, this policy still focuses on increasing the efficiency of financing from BPJS Kesehatan and health facilities, not yet accommodating increased efficiency from patient/household spending on health.
Third, direct non-medical expenses include: palliative care costs (homecare), transportation costs, food costs, accommodation costs, and other expenses that have not been included in the benefit package of the national health insurance. Policies related to palliative care in Indonesia currently focus on care in health facilities. Other direct non-medical expenses have also not been included in the national health insurance benefit package.
Fourth, it relates to indirect costs that must be incurred by patients and their families, namely: risk of losing their job due to caring for a family member diagnosed with cancer, salary cuts, not getting incentives at work, reduced income, decreased productivity, decreased mental health conditions. Currently there is no policy that can encourage psychoeducational treatment for patients and caregivers in the same health facility.