ADHERENCE WITH CHILDHOOD CANCER TREATMENT: Exploring Factors Contributing to Treatment Abandonment

Lower survival of childhood cancer in low and middle-income countries is mainly due to non-adherence and abandonment of childhood cancer treatment. The general objective of this thesis is to explore factors associated with adherence and abandonment of childhood cancer treatment in Indonesia. Several patient-, parent-, health-care provider (HCP)-, and global health policy-aspects were investigated. Chapter 2 explored various delay types among children with cancer and determined factors that influence delays. Parents of 145 patients were interviewed using semi-structured questionnaires. Median total delay was 70 days. Diagnosis delay (median 58 days) was longer than treatment delay (median 3 days, P<0.001). Using alternative treatment was associated with longer patient and total delay (P=0.025, P=0.024). HCP need training to improve cancer symptom recognition and speed-up diagnostics. Community campaigns encouraging families to seek conventional treatment are recommended. Chapter 3 determined treatment outcome of Indonesian children diagnosed with retinoblastoma and predictive factors. This retrospective medical-records study included 61 children. Treatment abandonment (39%) was most common cause of treatment failure. Older age at diagnosis (2 years) was associated with more progressive/relapsed disease (29% vs 0%, P=0.012) and worse event-free survival (6% vs 42%, P=0.045). Interventions to improve general public and HCP awareness, early detection and treatment adherence are required. Chapter 4 evaluated adherence with childhood cancer teleconferences between two academic hospitals in Indonesia and Netherlands. During 12 months, teleconferences were evaluated using standardized form. Adherence with diagnostic and treatment advices were explored in medical-records. Difficult cases of 53 children were discussed by Dutch pediatric-oncologists and Indonesian residents. Dutch pediatric-oncologists advised diagnostic adjustments in 41 cases (77%); non-adherence was 30%. Dutch advised treatment adjustments in 40 cases (75%); non-adherence was 22%. Reasons for non-adherence were: poor child’s condition (44%), not applicable in middle-income setting (22%). Locally applicable advices and active participation by pediatric-oncologists at both partner-sites are required. Chapter 5 explored communication about traditional and complementary medicine (T&CM) of HCP involved in childhood cancer care. 175 HCP were interviewed using semi-structured questionnaires. Most HCP (90%) think that cancer patients use T&CM. Main concerns were: giving false hope (88%), lacking evidence that T&CM works (87%), and limited T&CM knowledge (80%). Almost all HCP (96%) thought that parents should receive guidance by doctors about its beneficial and harmful effects. HCP should update their knowledge and openly discuss T&CM with parents. Chapter 6 sought evidence of hospital detention practices (HDP) worldwide. PubMed and Google were examined for relevant English/Spanish/French publications. Of 195 countries, HDP-reports were found in 46 countries (24%). Most reports were published by journalists in newspapers (89%). In most countries, reports concerned living (67%) adults/children (46%) who are imprisoned in public hospitals (41%) for ≥1 month (52%). Urgent intervention by stakeholders is required to stop HDP. Chapter 7 explored needs for parent supportive meetings. Parents of 200 children with cancer were interviewed using semi-structured questionnaires. Most parents were interested in monthly (58%) drop-in based (83%) group (90%) meetings during treatment (53%) to help them cope with stress. Chapter 8 investigated evidence of physician dual practices (PDP) worldwide. PubMed and Google were searched for relevant English publications. Of 195 countries, PDP-reports were found in 157 countries (81%). Most common reason for working in private sector was low government salaries in public hospitals (55%). PDP were described as detrimental to public health-sector in 58% of country-reports. Chapter nine explored influence of PDP on pediatric-oncology outreach-program between academic hospitals in Netherlands, Indonesia and Kenya. Most senior doctor from each site was interviewed in 2022. In Indonesia and Kenya, most doctors are involved in PDP to supplement low government salaries. Impact of PDP on pediatric-oncology care was detrimental in Indonesia and Kenya.