TY - JOUR
T1 - Developing a Screening Tool for Serious Health-related Suffering for Low- and Middle-Income Countries - Phase-1
T2 - Domain Identification and Item Generation
AU - Vallath, Nandini
AU - Salins, Naveen
AU - Ghoshal, Arunangshu
AU - Daniel, Sunitha M.
AU - Damani, Anuja
AU - Rajagopal, M. R.
AU - Rewati, Rahul Raman
AU - Bhatnagar, Sushma
AU - Pramesh, C. S.
N1 - Funding Information:
Objectives: 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.
Funding Information:
[12,13] This research was necessitated, as no screening tools for SHS were identified during the scoping search of the literature, for reasons elaborated under the discussions section. Cancer is recognised as a significant contributor to SHS.[5] The National Cancer Grid of India (NCG) is a collaborative network of cancer care organisations, research institutions, patient groups, and professional societies, funded by the Government of India with the mandate of facilitating uniform standards of cancer care.[14] Based on the evidence for health-related suffering reported by the Lancet Commission, the NCG-India, with support from the Indian Association of Palliative Care, initiated the process of developing a screening tool to assess SHS at an individual patient level, appropriate for resource-constrained settings.
Publisher Copyright:
© 2022 Wolters Kluwer Medknow Publications. All rights reserved.
PY - 2022/1
Y1 - 2022/1
N2 - Objectives: 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. Materials and Methods: 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. Results: 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. Conclusion: 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.
AB - Objectives: 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. Materials and Methods: 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. Results: 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. Conclusion: 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.
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U2 - 10.25259/IJPC_25_2021
DO - 10.25259/IJPC_25_2021
M3 - Article
AN - SCOPUS:85128125434
VL - 28
SP - 51
EP - 63
JO - Indian Journal of Palliative Care
JF - Indian Journal of Palliative Care
SN - 0973-1075
IS - 1
ER -
