Magnitude of Treatment Abandonment in Childhood Cancer

Abstract

BackgroundTreatment abandonment (TxA) is recognized as a leading cause of treatment failure for children with cancer in low-and-middle-income countries (LMC). However, its global frequency and burden have remained elusive due to lack of global data. This study aimed to obtain an estimate using survey and population data.MethodsChildhood cancer clinicians (medical oncologists, surgeons, and radiation therapists), nurses, social workers, and psychologists involved in care of children with cancer were approached through an online survey February-May 2012. Incidence and population data were obtained from public sources. Descriptive, univariable, and multivariable analyses were conducted.Results602 responses from 101 countries were obtained from physicians (84%), practicing pediatric hematology/oncology (83%) in general or children’s hospitals (79%). Results suggested, 23,854 (15%) of 155,088 children <15 years old newly diagnosed with cancer annually in the countries analyzed, abandon therapy. Importantly, 83% of new childhood cancer cases and 99% of TxA were attributable to LMC. The annual number of cases of TxA expected in LMC worldwide (26,166) was nearly equivalent to the annual number of cancer cases in children <15 years expected in HIC (26,368). Approximately two thirds of LMC had median TxA≥6%, but TxA ≥6% was reported in high- (9%), upper-middle- (41%), lower-middle- (80%), and low-income countries (90%, p<0.001). Most LMC centers reporting TxA>6% were outside the capital. Lower national income category, higher reliance on out-of-pocket payments, and high prevalence of economic hardship at the center were independent contextual predictors for TxA ≥6% (p<0.001). Global survival data available for more developed and less developed regions suggests TxA may account for at least a third of the survival gap between HIC and LMC.ConclusionResults show TxA is prevalent (compromising cancer survival for 1 in 7 children globally), confirm the suspected high burden of TxA in LMC, and illustrate the negative impact of poverty on its occurrence. The present estimates may appear small compared to the global burden of child death from malnutrition and infection (measured in millions). However, absolute numbers suggest the burden of TxA in LMC is nearly equivalent to annually losing all kids diagnosed with cancer in HIC just to TxA, without even considering deaths from disease progression, relapse or toxicity–the main causes of childhood cancer mortality in HIC. Results document the importance of monitoring and addressing TxA as part of childhood cancer outcomes in at-risk settings.

Contributing factors and outcomes of treatment refusal in pediatric oncology in Germany

“…This might be appropriate because, on the one hand, not all centers returned the questionnaire (96%) and, on the other hand, there might be a few children with malignant diseases, who have never attended a pediatric oncology center. This is in contrast to a recent survey in 101 countries, where the rate of therapy refusal or abandonment has been estimated at 15% . This is in contrast to an older study of 164 pediatric patients with ALL in Indonesia, where 35% of patients refused treatment, 21% of patients even before commencement of treatment .…”

“…Although overall survival rates had improved, treatment refusal and treatment abandonment have been described in developing as well as high‐income countries . In developing countries, patients refused or abandoned treatment due to logistical, financial, or social reasons, such as distance from the hospital and difficult physician–patient relationships due to social background or inadequate health insurance .…”

“…In developing countries, patients refused or abandoned treatment due to logistical, financial, or social reasons, such as distance from the hospital and difficult physician–patient relationships due to social background or inadequate health insurance . A recent survey of respondents from the 101 mostly low‐ and middle‐income countries revealed a rate of treatment abandonment of 15% . In El Salvador, a treatment refusal rate of 13% was determined from a sample of 612 patients with cancer, under 16 years of age, within the given investigation period; in Indonesia, 35% of 164 patients with acute lymphoblastic leukemia (ALL) refused or abandoned treatment.…”

Caregivers' Self-Reported Absence of Social Support Networks is Related to Treatment Abandonment in Children With Cancer

“…The International Society of Pediatric Oncology (SIOP) defines TxA as a failure either to start or to continue the planned course of curative treatment for “4 weeks or more of the scheduled treatment.” TxA does not include receipt of palliative treatment or treatment of relapse disease. The estimated abandonment rates globally as per healthcare providers were 15%, and range from 0% to 75% for pediatric acute leukemia in LMIC . In the cited study, more developed Latin American countries, such as Argentina, Brazil, and Mexico, have TxA proportions around 3%.…”

Treatment abandonment in children with cancer in Sub‐Saharan Africa: Systematic literature review and meta‐analysis

“…The term treatment abandonment is defined as the unsuccessful attempt to either begin or complete cancer treatment (Freidrich et al., ). As treatment abandonment encompasses the inability to start treatment as well as to continue it, its extent is unknown, however it is increasingly recognized as one of the primary causes of therapeutic failure and death in paediatric cancer patients from resource‐poor countries (Arora, Pizer, & Eden, ; Gupta et al., ; Mostert et al., ).…”