Aboriginal people's perceptions of patient-reported outcome measures in the assessment of diabetes health-related quality of life
Background: Patient-reported outcome measures (PROMs) provide clinicians and consumers a platform to inform and improve healthcare planning and management. Aboriginal people experience disproportionately high rates of chronic diseases, including type 2 diabetes. Treatment and management require holi...
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ftunivnewcastnsw:uon:53579 2024-01-07T09:43:17+01:00 Aboriginal people's perceptions of patient-reported outcome measures in the assessment of diabetes health-related quality of life Burgess, Alicia Hawkins, Jessica Kostovski, Catherine Kennedy, Michelle Penkala, Stefania Duncanson, Kerith The University of Newcastle. College of Health, Medicine & Wellbeing, School of Medicine and Public Health 2023 http://hdl.handle.net/1959.13/1493553 eng eng CSIRO Australian Journal of Primary Health Vol. 29, Issue 2, p. 165-174 10.1071/PY22150 http://hdl.handle.net/1959.13/1493553 uon:53579 ISSN:1448-7527 x Aboriginal delivery of health care: integrated diabetes disease management healthcare disparities indigenous health services patient-centred care Patient Reported Measures SDG 3 SDG 10 Sustainable Development Goals journal article 2023 ftunivnewcastnsw 2023-12-11T23:26:48Z Background: Patient-reported outcome measures (PROMs) provide clinicians and consumers a platform to inform and improve healthcare planning and management. Aboriginal people experience disproportionately high rates of chronic diseases, including type 2 diabetes. Treatment and management require holistic approaches that draw on culturally relevant resources and assessment tools. This study explored perceptions of Aboriginal people about two diabetes management-related PROMs (PROMIS-29, PAID Scale). Methods: Twenty-nine Aboriginal people living with diabetes in the Shoalhaven discussed two PROMs in one of four focus groups or at an individual interview. Preliminary data coding was conducted by clinician researchers, with thematic analysis overseen by Aboriginal co-researchers. Subsequent individual interviews with participants were undertaken to seek further feedback and articulate what is needed to improve methods of evaluating Aboriginal people’s self-reported quality of life and diabetes management. Results: The PROMs did not capture information or knowledge that Aboriginal people considered relevant to their diabetes-related health care. Participants’ recommendations included adapting survey materials to be more culturally sensitive; for example, by improving the alignment of measures with common day-to-day activities. This study also describes a genuine collaborative, Aboriginal community-guided approach to evaluate ‘fit-for-purpose’ diabetes management tools. Conclusions: Appropriate evaluation methods are paramount to address the disproportionate burden of diabetes experienced by Aboriginal peoples and overcome inverse diabetes care. Our learnings will contribute to development of tools, resources or methods that capture culturally tailored outcome measures. Study findings are relevant to clinicians and researchers using and/or developing Patient Reported Measures, particularly in relation to the practicality of tools for First Nations peoples. Article in Journal/Newspaper First Nations NOVA: The University of Newcastle Research Online (Australia) |
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Open Polar |
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NOVA: The University of Newcastle Research Online (Australia) |
op_collection_id |
ftunivnewcastnsw |
language |
English |
topic |
Aboriginal delivery of health care: integrated diabetes disease management healthcare disparities indigenous health services patient-centred care Patient Reported Measures SDG 3 SDG 10 Sustainable Development Goals |
spellingShingle |
Aboriginal delivery of health care: integrated diabetes disease management healthcare disparities indigenous health services patient-centred care Patient Reported Measures SDG 3 SDG 10 Sustainable Development Goals Burgess, Alicia Hawkins, Jessica Kostovski, Catherine Kennedy, Michelle Penkala, Stefania Duncanson, Kerith Aboriginal people's perceptions of patient-reported outcome measures in the assessment of diabetes health-related quality of life |
topic_facet |
Aboriginal delivery of health care: integrated diabetes disease management healthcare disparities indigenous health services patient-centred care Patient Reported Measures SDG 3 SDG 10 Sustainable Development Goals |
description |
Background: Patient-reported outcome measures (PROMs) provide clinicians and consumers a platform to inform and improve healthcare planning and management. Aboriginal people experience disproportionately high rates of chronic diseases, including type 2 diabetes. Treatment and management require holistic approaches that draw on culturally relevant resources and assessment tools. This study explored perceptions of Aboriginal people about two diabetes management-related PROMs (PROMIS-29, PAID Scale). Methods: Twenty-nine Aboriginal people living with diabetes in the Shoalhaven discussed two PROMs in one of four focus groups or at an individual interview. Preliminary data coding was conducted by clinician researchers, with thematic analysis overseen by Aboriginal co-researchers. Subsequent individual interviews with participants were undertaken to seek further feedback and articulate what is needed to improve methods of evaluating Aboriginal people’s self-reported quality of life and diabetes management. Results: The PROMs did not capture information or knowledge that Aboriginal people considered relevant to their diabetes-related health care. Participants’ recommendations included adapting survey materials to be more culturally sensitive; for example, by improving the alignment of measures with common day-to-day activities. This study also describes a genuine collaborative, Aboriginal community-guided approach to evaluate ‘fit-for-purpose’ diabetes management tools. Conclusions: Appropriate evaluation methods are paramount to address the disproportionate burden of diabetes experienced by Aboriginal peoples and overcome inverse diabetes care. Our learnings will contribute to development of tools, resources or methods that capture culturally tailored outcome measures. Study findings are relevant to clinicians and researchers using and/or developing Patient Reported Measures, particularly in relation to the practicality of tools for First Nations peoples. |
author2 |
The University of Newcastle. College of Health, Medicine & Wellbeing, School of Medicine and Public Health |
format |
Article in Journal/Newspaper |
author |
Burgess, Alicia Hawkins, Jessica Kostovski, Catherine Kennedy, Michelle Penkala, Stefania Duncanson, Kerith |
author_facet |
Burgess, Alicia Hawkins, Jessica Kostovski, Catherine Kennedy, Michelle Penkala, Stefania Duncanson, Kerith |
author_sort |
Burgess, Alicia |
title |
Aboriginal people's perceptions of patient-reported outcome measures in the assessment of diabetes health-related quality of life |
title_short |
Aboriginal people's perceptions of patient-reported outcome measures in the assessment of diabetes health-related quality of life |
title_full |
Aboriginal people's perceptions of patient-reported outcome measures in the assessment of diabetes health-related quality of life |
title_fullStr |
Aboriginal people's perceptions of patient-reported outcome measures in the assessment of diabetes health-related quality of life |
title_full_unstemmed |
Aboriginal people's perceptions of patient-reported outcome measures in the assessment of diabetes health-related quality of life |
title_sort |
aboriginal people's perceptions of patient-reported outcome measures in the assessment of diabetes health-related quality of life |
publisher |
CSIRO |
publishDate |
2023 |
url |
http://hdl.handle.net/1959.13/1493553 |
genre |
First Nations |
genre_facet |
First Nations |
op_relation |
Australian Journal of Primary Health Vol. 29, Issue 2, p. 165-174 10.1071/PY22150 http://hdl.handle.net/1959.13/1493553 uon:53579 ISSN:1448-7527 |
op_rights |
x |
_version_ |
1787424552411725824 |