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利益相关者对印度儿童癌症护理的障碍与促进因素的看法。

Stakeholder's Perspectives on the Barriers and Facilitators of Childhood Cancer Care in India.

作者信息

Nath Anita, Mathur Prashant, Sudarshan Kondalli Lakshminarayana, Arora Ramandeep, Seth Rachna, Kumar Sanjiv, Chinnaswamy Girish, Budukh Atul, Singh Varinder, Kumari T Priya, Banipal Raja Paramjeet Singh, Bodal Vijay Kumar, Kumar A R Arun, Vijay C R, Avinash T, Ramesh C, Gundeti Sadashivudu, Malik Shikha, Chaudhary Narendra Kumar, Majumdar Gautam, Das Deepshikha, Radhakrishnan Nita, Rao V Surya, Rawal Manoj, Pautu Jeremy L, Sundriyal Deepak, Hazarika Munlima, Harris Caleb, Jondhale Sunil Natha, Khamo Vinotsole, Najmi Arshad Manzoor, Pareek Puneet, Konjengbam Ratan, Das Majumdar Saroj Kumar, Pandya Shashank, Shah Anand, Singh S B, Radhakrishnan Venkatraman, Swaminathan R, Kumar Chandra Mohan, Singh Pritanjali, Tiwari Lokesh, Mandal Syamsundar, Tawsik Sopai, Pandey Awadhesh Kumar, Gunaseelan K, Bhutia Tseten W

机构信息

ICMR-National Centre for Disease Informatics and Research, Indian Council of Medical Research, Bengaluru, Karnataka, India.

Max Superspeciality Hospital, Saket, New Delhi, India.

出版信息

Indian Pediatr. 2025 Jun 2. doi: 10.1007/s13312-025-00098-2.

DOI:10.1007/s13312-025-00098-2
PMID:40455343
Abstract

OBJECTIVE

To explore the stakeholders' perspectives on barriers and facilitators influencing childhood cancer care delivery in India.

METHODS

A nationwide survey was conducted across 26 states and 4 Union Territories, involving childhood cancer physicians from tertiary and secondary hospitals, state nodal officers (SNOs) for the National Programme for Control of Non-Communicable Diseases (NP-NCD), and representatives from Civil Society Organizations (CSOs) and Non-Governmental Organizations (NGOs). A hub-and-spoke sampling model was employed, with designated tertiary hospitals coordinating data collection from secondary hospitals. An online survey tool assessed perceived challenges and facilitators in childhood cancer care. Data collection occurred from July to September 2021, and descriptive statistics were used for analysis.

RESULTS

Responses were received from 137 tertiary hospitals (100%), 92 secondary hospitals (91%), 16 SNOs (53.3%), and 9 CSO/NGO representatives (23.1%). Key barriers to diagnosis and treatment included shortage of human resources, beds, and equipment, along with advanced-stage presentation and inadequate back-referrals from tertiary to secondary hospitals. Treatment abandonment and denial were highlighted as major concerns. SNOs and CSOs identified financial constraints, limited insurance coverage, and reliance on traditional healers as additional challenges. Facilitators included strengthening referral networks, expanding diagnostic capabilities, ensuring free treatment and medications, and improving infrastructure and workforce capacity.

CONCLUSION

Resource constraints, late-stage presentation, treatment abandonment, and financial challenges are the significant barriers to childhood cancer care in India. Addressing these through improved referral systems, expanded diagnostic services, financial support mechanisms, and policy-level interventions are needed to enhance childhood cancer care outcomes and quality of life.

摘要

目的

探讨利益相关者对影响印度儿童癌症护理服务的障碍和促进因素的看法。

方法

在全国26个邦和4个联邦属地开展了一项调查,涉及三级和二级医院的儿童癌症医生、国家非传染性疾病控制项目(NP-NCD)的邦级联络官(SNO)以及民间社会组织(CSO)和非政府组织(NGO)的代表。采用中心辐射式抽样模型,指定的三级医院协调二级医院的数据收集工作。通过在线调查工具评估儿童癌症护理中感知到的挑战和促进因素。数据收集于2021年7月至9月进行,采用描述性统计进行分析。

结果

收到了来自137家三级医院(100%)、92家二级医院(91%)、16名邦级联络官(53.3%)以及9名民间社会组织/非政府组织代表(23.1%)的回复。诊断和治疗方面的主要障碍包括人力资源、床位和设备短缺,以及癌症晚期就诊情况和三级医院向二级医院的回诊不足。治疗放弃和拒绝被视为主要问题。邦级联络官和民间社会组织指出,资金限制、保险覆盖范围有限以及对传统治疗师的依赖是额外的挑战。促进因素包括加强转诊网络、扩大诊断能力、确保免费治疗和药物供应,以及改善基础设施和劳动力能力。

结论

资源限制、晚期就诊、治疗放弃和资金挑战是印度儿童癌症护理的重大障碍。需要通过改进转诊系统、扩大诊断服务、资金支持机制和政策层面的干预措施来解决这些问题,以提高儿童癌症护理效果和生活质量。

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