Division of Pharmacotherapy and Experimental Therapeutics, University of North Carolina Eshelman School of Pharmacy, Chapel Hill, North Carolina, USA.
GSK, Durham, North Carolina, USA.
Cancer Med. 2024 Sep;13(17):e70125. doi: 10.1002/cam4.70125.
Cancer is a leading cause of global childhood mortality, affecting 400,000 children annually. While treatable with modern therapies, children living in low- and middle-income countries (LMICs) have limited access to care and lower survival rates. Hospital-based cancer registries (HBCRs) collect detailed patient information to critically evaluate and evolve care. The St. Jude Global Childhood Cancer Analytics Resource and Epidemiological Surveillance System (SJCARES) is a cloud-based HBCR network facilitating quality data collection of pediatric cancer. Wide variation in the success of implementation has warranted further research into the implementation approach, to create a sustainable and adaptable HBCR in LMICs.
Seven of 89 sites using the SJCARES registry were selected, stratified by global region and stage of implementation. Semi-structured interviews were conducted with key groups (clinicians, administrators, data clerks) using an interview guide developed from the Consolidation Framework for Implementation Research (CFIR). Interviews were conducted via a video-telephone software program and transcribed by a transcription service. Transcripts were thematically coded using rapid qualitative analysis.
A total of 18 participants (11 clinicians, 4 administrators, 3 data clerks) were interviewed. Several barrier themes were identified, including: difficulty integrating the registry into existing workflow; lack of resources; lack of government or administrative support; and damaged, misplaced, or illegible medical records. Facilitator themes were identified, including: internal support for the registry; clear and extensive training; and dedicated support staff.
Interviewed participants identified key barriers and facilitators to the implementation of the SJCARES registry across multiple phases. We plan to use these results to develop targeted implementation strategies including a readiness assessment tool to help guide more successful implementation of the SJCARES registry and other HBCRs in LMICs.
癌症是全球儿童死亡的主要原因，每年影响 40 万名儿童。虽然现代疗法可以治疗癌症，但生活在中低收入国家（LMICs）的儿童获得治疗的机会有限，生存率也较低。医院癌症登记处（HBCRs）收集详细的患者信息，以对治疗进行严格评估和改进。圣裘德全球儿童癌症分析资源和流行病学监测系统（SJCARES）是一个基于云的 HBCR 网络，有助于收集儿科癌症的高质量数据。实施的成功存在广泛差异，因此需要进一步研究实施方法，在 LMICs 中创建一个可持续和适应性强的 HBCR。
从使用 SJCARES 登记处的 89 个地点中选择了 7 个地点，按全球区域和实施阶段进行分层。使用从实施研究综合框架（CFIR）开发的访谈指南，对关键群体（临床医生、管理人员、数据录入员）进行半结构化访谈。访谈通过视频电话软件程序进行，并由转录服务转录。使用快速定性分析对转录本进行主题编码。
共对 18 名参与者（11 名临床医生、4 名管理人员、3 名数据录入员）进行了访谈。确定了几个障碍主题，包括：将登记处整合到现有工作流程中存在困难；资源匮乏；缺乏政府或行政支持；以及病历损坏、放错位置或难以辨认。促进者主题包括：对登记处的内部支持；清晰而广泛的培训；以及专门的支持人员。
接受采访的参与者确定了在多个阶段实施 SJCARES 登记处的关键障碍和促进因素。我们计划利用这些结果制定有针对性的实施策略，包括准备情况评估工具，以帮助指导在 LMICs 中更成功地实施 SJCARES 登记处和其他 HBCRs。
