Vallath Nandini, Salins Naveen, Ghoshal Arunangshu, Daniel Sunitha M, Damani Anuja, Rajagopal M R, Rewati Rahul Raman, Bhatnagar Sushma, Pramesh C S
Division of Palliative Care, National Cancer Grid, Tata Memorial Centre, Homi Bhabha National Institute, Mumbai, Maharashtra, India.
Department of Palliative Medicine and Supportive Care, Kasturba Medical College Manipal, Manipal Academy of Higher Education, Manipal, Udupi, India.
Indian J Palliat Care. 2022 Jan-Mar;28(1):51-63. doi: 10.25259/IJPC_25_2021. Epub 2022 Feb 22.
The Lancet Commission on Global Access to Palliative Care and Pain Relief reported significant levels of health-related suffering globally, with the highest incidence in the low- and middle-income countries. The report describes suffering as health-related when it is associated with illness or injury of any kind and suffering as serious when it cannot be relieved without professional intervention and when it compromises physical, social, spiritual, and/or emotional functioning. This paper describes the preliminary development phase of a tool for screening Serious Health-related Suffering (SHS) at individual patient level, suitable to the healthcare settings in India. The study was conducted by the National Cancer Grid-India, with support from the Indian Association of Palliative Care.
Domain identification and item generation were conducted according to the recommendations for tool development by the American Psychological Association and World Health Organisation quality of life instrument. The consensus for domain questions and associated items was achieved using Delphi, nominal group technique, expert review, and polling.
The Phase-1 study for developing the screening tool for SHS contextualised to resource-limited settings generated a bilevel questionnaire. The initial level assesses and scores the physical, emotional, social, spiritual, and financial domains of health-related suffering. The next level assesses seriousness, through functional limitation and patient's preference.
The generation of domains, items, and screening questions for health-related suffering and its seriousness completes the preliminary phase of developing the SHS screening tool applicable to a resource-limited healthcare setting. Field testing of the tool is being conducted as Phase-2 of this study, to validate it in clinical settings.
《柳叶刀全球姑息治疗与疼痛缓解委员会报告》指出，全球与健康相关的痛苦程度很高，在低收入和中等收入国家发病率最高。该报告将与健康相关的痛苦定义为与任何疾病或损伤相关的痛苦，将严重痛苦定义为若无专业干预则无法缓解且损害身体、社会、精神和/或情感功能的痛苦。本文描述了一种适用于印度医疗环境的、在个体患者层面筛查严重健康相关痛苦（SHS）的工具的初步开发阶段。该研究由印度国家癌症网格组织开展，并得到了印度姑息治疗协会的支持。
根据美国心理协会和世界卫生组织生活质量工具开发建议进行领域识别和条目生成。通过德尔菲法、名义小组技术、专家评审和投票达成领域问题及相关条目的共识。
针对资源有限环境开发SHS筛查工具的第一阶段研究产生了一个双层次问卷。初始层次评估并评分与健康相关痛苦的身体、情感、社会、精神和经济领域。下一层次通过功能受限和患者偏好评估严重性。
与健康相关痛苦及其严重性的领域、条目和筛查问题的生成完成了适用于资源有限医疗环境的SHS筛查工具开发的初步阶段。作为本研究的第二阶段，正在对该工具进行现场测试，以在临床环境中验证它。
