Department of Medical Oncology, Dr B.R.A. Institute Rotary Cancer Hospital, All India Institute of Medical Sciences, New Delhi, India.
Department of Psychiatry, All India Institute of Medical Sciences, New Delhi, India.
Psychooncology. 2022 Oct;31(10):1671-1680. doi: 10.1002/pon.6017. Epub 2022 Aug 25.
To fill the gap in patient-reported outcome (PRO) assessment in children with cancer in India, we planned to adapt domains from the HealthMeasures Patient Reported Outcomes Measurement Information System (PROMIS) tool. This study attempted to identify and pool outcomes relevant to children with cancer and their caregivers in Northern India.
The study was qualitative and conducted through focussed group discussions (FGDs) and in-depth interviews of children with cancer and their caregivers. Content analysis of transcripts from the sessions was done. The collected themes were collated with existing item banks of the PROMIS tool and new concepts unique to our population were compiled.
A set of three FGDs and 14 interviews each for children and their caregivers were conducted. Following content analysis, 121 themes were identified including 10 new concepts. Themes pertaining to the physical domain were cited most. The theme distribution across the three domains was similar among children and caregivers. In the survivor cohort, the relative frequency of mention of psychological and social themes was higher compared to the whole cohort. Themes pertaining to mobility, cognitive dysfunction and peer relationships were more common among survivors.
This qualitative study in children with cancer and their caregivers in India has facilitated a better understanding of the issues pertaining to cancer care that are of most importance to its stake holders. The themes collected may be used to formulate a PRO tool uniquely tailored for use in this population.
为了填补印度儿童癌症患者报告结局（PRO）评估的空白，我们计划从健康衡量患者报告结局测量信息系统（PROMIS）工具中调整领域。本研究试图确定并汇集与印度北部癌症儿童及其照顾者相关的结局。
该研究为定性研究，通过焦点小组讨论（FGD）和癌症儿童及其照顾者的深入访谈进行。对会议记录的转录本进行内容分析。收集的主题与 PROMIS 工具的现有项目库进行了整理，并编纂了我们人群特有的新概念。
共进行了三组 FGD 和 14 次针对儿童及其照顾者的访谈。经过内容分析，共确定了 121 个主题，包括 10 个新概念。与身体领域相关的主题被引用最多。儿童和照顾者三个领域的主题分布相似。在幸存者队列中，与整个队列相比，心理和社会主题的相对提及频率更高。与移动性、认知功能障碍和同伴关系相关的主题在幸存者中更为常见。
本研究对印度癌症儿童及其照顾者进行了定性研究，使人们更好地了解了对其利益相关者最重要的癌症护理问题。收集的主题可用于制定专门针对该人群使用的 PRO 工具。
