TY - JOUR
T1 - The effect of therapy refusal against medical advice in retinoblastoma patients in a setting where treatment delays are common
AU - Sitorus, Rita S.
AU - Moll, Annette C.
AU - Suhardjono, Setiowati
AU - Simangunsong, Lumongga S.
AU - Riono, Pandu
AU - Imhof, Saskia
AU - Völker-Dieben, H. J.M.
N1 - Funding Information:
The authors thank Tjahjono D. Gondhowiardjo of Department of Ophthalmology, University of Indonesia, and P.J. Kostense, of the Department of Biostatistic Vrije University Medical Centre (VUmc), Amsterdam for the valuable and critical advice. R. S. Sitorus spent a period doing research work in The Netherlands supported by The KNAW (the Royal Netherlands Academy of Arts and Sciences in the framework of the Scientific Programme Indonesia - Netherlands (SPIN)), The Nelly Reef Fund, The Ditmer Funds, and The KWF (KWF-Kankerbestrijding in cooperation with the Indonesian Cancer Foundation (YKI) and Indonesia Exchange Programme (IEP)).
PY - 2009/3
Y1 - 2009/3
N2 - 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.
AB - 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.
KW - Delay
KW - Developing country
KW - Indonesia
KW - Refusal of therapy
KW - Retinoblastoma
UR - http://www.scopus.com/inward/record.url?scp=61649106257&partnerID=8YFLogxK
U2 - 10.1080/13816810802464320
DO - 10.1080/13816810802464320
M3 - Article
C2 - 19172508
AN - SCOPUS:61649106257
SN - 1381-6810
VL - 30
SP - 31
EP - 36
JO - Ophthalmic Genetics
JF - Ophthalmic Genetics
IS - 1
ER -