Vallath Nandini, Paul Aneka, Ghoshal Arunangshu, Sundararaj Jenifer Jeba, Balakrishnan Kalpana
Department of Pain and Palliative Medicine, St Johns Medical College Hospital, Bengaluru, Karnataka, India.
Former Trustee, Golden Butterflies Children's Palliative Care Foundation, Chennai, Tamil Nadu, India.
Indian J Palliat Care. 2024 Jul-Sep;30(3):239-251. doi: 10.25259/IJPC_13_2024. Epub 2024 Aug 23.
The 2017 Lancet Commission reports 'Serious Health-related Suffering' (SHS) as an abyss in healthcare services. It lists 20 common health conditions and 15 symptoms as commonly associated with SHS. In 2015, 80% of SHS prevalence, an estimated 61 million, was noted as from low-middle-income countries. Acknowledging the high prevalence of SHS in cancer patients and aligning with global efforts to address and alleviate the suffering, the National Cancer Grid of India developed and evaluated the SHS screening tool (SHS-tool). The SHS tool was developed during phase 1 of the study through a systematic consensus-building methodology. During phase 2, the validity and feasibility study of the SHS tool was completed through a multicentric field test, which is described here.
The SHS tool developed during phase 1 was field-tested across nine tertiary cancer care centres (TCC sites) selected from different healthcare sectors and regions of India. The study utilised a purposive sample of 254 cancer patients to evaluate the validity of the SHS screening tool at selected sites and additionally recorded the feasibility, relevance, acceptability and feedback comments from patients ( = 121), research associates ( = 11) and principal investigators (PIs) ( = 9). A documented interview of the patient within the same timeframe by experienced personnel selected by the PI served as the standard.
The field-test TCC-sites represented government academic institutions, non-government and private sectors. The sites used patient waiting areas and inpatient/daycare wards for conducting field tests. The Cronbach's alpha of the SHS-tool questionnaire showed an internal consistency of 0.728. The tool detected SHS in 137/254 patients, compared to 116/254 through the interview method. The outcomes concurred with that of the interview in 64.17% of instances. The tool exhibited a sensitivity of 70% and specificity of 59%. 66.67% of patients might not have reached the interviewers if not for the field test processes. The feasibility questionnaire responses from patients ( = 121) indicated ease of understanding (91.74%), ease of use (92.56%) and relevance (89.26%). The selected settings were found suitable by 96.69%. Feedback responses from research associates indicated ease of administration (10/11) and relevance (8/11) and found no reasons preventing its use (8/11). The feedback comments from the stakeholders were thematically grouped for insights.
The SHS tool is validated for screening SHS where none exists. It has been found to be a feasible, relevant and acceptable tool for use in adult cancer patients attending TCCs across India. Insights from analysing the feedback comments from the stakeholders have been integrated as 'instruction for use' for refined implementation of the SHS tool. The SHS tool may be utilised to recognise and trigger an in-depth evaluation and expedited access to essential palliative care packages towards alleviating it, as recommended by the Lancet Commission. Future studies using the SHS tool in other disease conditions with a high burden of SHS can assess its wider applicability.
《柳叶刀》委员会2017年的报告将“与健康相关的严重痛苦”(SHS)列为医疗服务中的一个深渊。该报告列出了20种常见健康状况以及15种与SHS通常相关的症状。2015年,SHS患病率的80%(约6100万)来自低收入和中等收入国家。认识到癌症患者中SHS的高患病率,并与全球应对和减轻痛苦的努力保持一致,印度国家癌症网格开发并评估了SHS筛查工具(SHS工具)。SHS工具是在研究的第一阶段通过系统的共识建立方法开发的。在第二阶段,通过多中心现场测试完成了SHS工具的有效性和可行性研究,本文对此进行了描述。
在第一阶段开发的SHS工具在从印度不同医疗部门和地区挑选的9个三级癌症护理中心(TCC站点)进行了现场测试。该研究采用了254名癌症患者的目的抽样,以评估SHS筛查工具在选定站点的有效性,并额外记录了患者(n = 121)、研究助理(n = 11)和主要研究者(PI)(n = 9)的可行性、相关性、可接受性及反馈意见。由PI挑选的经验丰富的人员在同一时间范围内对患者进行的书面访谈作为标准。
现场测试的TCC站点代表了政府学术机构、非政府和私营部门。这些站点利用患者等候区和住院/日间护理病房进行现场测试。SHS工具问卷的Cronbach's α显示内部一致性为0.728。该工具在254名患者中检测出137例SHS,而通过访谈方法检测出116例。在64.17%的情况下,结果与访谈结果一致。该工具的敏感性为70%,特异性为59%。如果没有现场测试流程,66.67%的患者可能无法接触到访谈者。患者(n = 121)对可行性问卷的回答表明易于理解(91.74%)、易于使用(92.56%)和相关性(89.26%)。96.69% 的人认为所选环境合适。研究助理的反馈意见表明易于管理(10/11)和相关性(8/11),并且没有发现阻止使用该工具的理由(8/11)。对利益相关者的反馈意见进行了主题分组以获取见解。
SHS工具在不存在SHS筛查的情况下经过验证可用于筛查。已发现它是一种可行、相关且可接受的工具,可用于印度各地TCC的成年癌症患者。对利益相关者反馈意见的分析所得出的见解已整合为SHS工具优化实施的“使用说明”。如《柳叶刀》委员会所建议,SHS工具可用于识别并引发深入评估,并加快获得基本姑息治疗方案以减轻痛苦。未来在其他SHS负担较高的疾病中使用SHS工具的研究可以评估其更广泛的适用性。