Quality Care Research and Impact, Cankids, New Delhi, India.
Division of Haematology/Oncology, Hospital for Sick Children, Toronto, Canada.
Cancer Rep (Hoboken). 2022 Jun;5(6):e1359. doi: 10.1002/cnr2.1359. Epub 2021 Feb 23.
Abandonment of treatment, a major cause of treatment failure in low- and middle-income countries like India, is particularly high during the diagnostic and initial phase of treatment. Tracking of patients during this risk period may reduce treatment abandonment rates and increase quality of care.
The primary aim was to pilot the use and check the acceptability of a tool for tracking children with cancer in New Delhi during the initial part of their treatment. Secondary aim was to estimate abandonment rates among these patients.
This prospective study was carried out in two centers of North India in New Delhi and enrolled children less than 18 years diagnosed with cancer at these centers and who had registered with Cankids for social support. Parent support group (PSG) workers maintained contact with the child's family at least once a week for the first 12 weeks. Details of each contact and subsequent action were recorded in a customized book (called "You are not alone" or YANA Book). Descriptive analysis of these contacts was done in Microsoft Excel and presented in frequencies and percentages. The five-point Likert scale was used to check the acceptability of the tool among the PSG workers.
Seven PSG workers enrolled and tracked 81 patients (73% male with a median age of 6 years). During the 12-week study period, 986 contacts were attempted and three (3.7%) patients had abandoned their treatment. All PSG workers strongly agreed that the YANA book was simple to understand and use, decreased their workload, and helped provide better assistance to patients.
The tool for patient tracking was well accepted by the PSG workers and considered easy to use. We now plan to implement our model as a routine service at all the partnering hospitals in India.
在像印度这样的中低收入国家，放弃治疗是治疗失败的主要原因，尤其是在诊断和治疗初始阶段。在这个风险时期跟踪患者可能会降低治疗放弃率并提高护理质量。
主要目的是试用一种工具，以跟踪新德里癌症儿童在治疗初始阶段的情况，并检查其使用的可行性和可接受性。次要目的是估计这些患者的放弃率。
这项前瞻性研究在印度新德里的两个中心进行，招募了在这些中心诊断为癌症且年龄小于 18 岁的儿童，并且这些儿童已经在 Cankids 登记以获得社会支持。家长支持小组（PSG）工作人员至少每周与孩子的家庭联系一次，持续 12 周。每次联系的详细信息以及后续行动都记录在一本定制的书中（称为“你并不孤单”或 YANA 书）。在 Microsoft Excel 中对这些联系进行描述性分析，并以频率和百分比表示。使用五点李克特量表来检查 PSG 工作人员对工具的可接受性。
7 名 PSG 工作人员参与并跟踪了 81 名患者（73%为男性，中位年龄为 6 岁）。在 12 周的研究期间，共尝试了 986 次联系，有 3 名（3.7%）患者放弃了治疗。所有 PSG 工作人员都强烈认为 YANA 书简单易懂，使用方便，减轻了他们的工作量，并有助于更好地为患者提供帮助。
患者跟踪工具得到了 PSG 工作人员的认可，被认为易于使用。我们现在计划将我们的模式作为常规服务在印度所有合作医院实施。
