The effect of therapy refusal against medical advice in retinoblastoma patients in a setting where treatment delays are common

Background: Patients who refuse therapy against medical advice may be at risk of adverse health outcomes. We analyzed the impact of therapy refusal and its effect on the survival of retinoblastoma patients. Patients and Methods: 165 consecutive untreated retinoblastoma patients admitted to the CM-Hospital, between 1993-2000 were evaluated retrospectively. Survival outcomes and its association with delays and tumor staging were analyzed using Kaplan-Meier and Cox-Regression. Results: Of the 165 cases, 78 cases (47,3%) were assigned to the "No-Refusal-Group"; 52 cases (31,5%) to "Temporary-Refusal- Group," 30 cases (18,2%) to "Definite-Refusal-Group." Survival rates of patients who temporarily refused were significantly lower than those who did not refuse the therapy (p < 0.05). Progression of tumor stage was highly associated with temporary-refusal (p < 0.0005). In the Cox-Regression model, clinical staging of tumor was highly associated, whereas admission delay and treatment delay were slightly associated with the overall survival (p < 0.05, adjusted-hazard-ratio 6.321, 1.031,1.025, respectively). The clinical staging is the strongest variable associated with patient survival outcome. Delay ≥ 6 months between first sign and admission is highly associated with tumor progression (p < 0.0005). Conclusions: First, the high level of therapy refusal in a developing country like Indonesia has an adverse effect on the survival outcome of retinoblastoma patients. Second, the change of the tumor stage from intraocular to extraocular is the most adverse predictive factor for survival. Third, the advanced stage of the tumor is caused by long delay to admission. In a developing country the parents of many young patients refuse to accept the recommended therapy and therefore the tumor may reach a critical stage for the prognosis.