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A report about treatment refusal and abandonment in children with acute lymphoblastic leukemia in China, 1997-2007
Yan-rong Wang1, Run-ming Jin, Jia-wei Xu
1Department of Pediatrics, The Affiliated Shenzhen Third Hospital, Guangdong Medical College, Shenzhen, China. 123rong@sohu.com
Insights
High rates of treatment refusal and abandonment were observed in childhood acute lymphoblastic leukemia (ALL) patients in China. Financial difficulties and perceived incurability were key reasons, highlighting the need for improved healthcare access and education.
Area of Science:
- Pediatric Oncology
- Hematology
- Public Health
Background:
- Childhood acute lymphoblastic leukemia (ALL) presents significant treatment challenges.
- Treatment refusal and abandonment are critical issues impacting patient outcomes.
- Understanding the specific barriers in diverse healthcare settings is essential.
Purpose of the Study:
- To investigate the causes and consequences of treatment refusal and abandonment in childhood ALL.
- To identify key factors contributing to therapy non-adherence in a Chinese population.
- To inform strategies for improving treatment completion rates in pediatric ALL.
Main Methods:
- Retrospective analysis of medical records for childhood ALL patients diagnosed between 1997 and 2007.
- Interviews with families of children who refused or abandoned treatment.
- Telephone and mail follow-up assessments to determine patient status.
Main Results:
- Over half (53.6%) of diagnosed children refused therapy, and 10.8% abandoned treatment.
- Major reasons for refusal/abandonment included financial difficulties, belief in incurability, transportation issues, and fear of side effects.
- Survival rates were very low for children who refused (6.3% alive) or abandoned (6.5% alive) treatment.
Conclusions:
- Significant barriers to consistent treatment for childhood ALL exist.
- Financial constraints and health beliefs strongly influence treatment adherence.
- Systemic health education and medical insurance are crucial for improving outcomes in low-middle income countries.
Background:
To analyze the causes and consequence of treatment refusal and abandonment in childhood acute lymphoblastic leukemia (ALL) treated in Wuhan Union Hospital of China.
Methods:
We collected recorded data and interviewed families of the children with ALL diagnosed between January 1997 and August 2007, who refused or abandoned treatment.
Results:
323 patients were diagnosed with ALL. 173 patients (173/323, 53.6%) refused therapy and 35 (35/323, 10.8%) cases abandoned treatment. 191 (191/208, 91.8%) of these children were telephone/mail-visited. Different people had different reasons for refusal or abandonment. Financial difficulty and belief of ALL incurability were the main reasons for abandonment. Transportation difficulties and fear of severe side effects were also important reasons. Of the 173 patients who refused treatment, 13 patients lost follow-up. 160 parents were interviewed and 1 (6.3%) child was still alive at the date of last follow-up. Of the 35 patients who abandoned treatment, 4 patients lost follow-up. 31 parents were interviewed and 2 (6.5%) children were still alive at the date of last follow-up.
Conclusion:
Medical insurance and a systemic health education are extremely required for childhood ALL in low middle income countries.
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