Health-related quality of life among Indigenous Australians diagnosed with cancer

et al. 2021

Int J Equity Health

Background Measurement of patients’ healthcare experiences is increasingly used as an indicator of quality of care, but there are concerns that existing measures omit information that is meaningful to patients and that results may not be used systematically to inform service improvement. Further, current approaches may be inadequate for some population groups, such as Indigenous people in Australia, whose healthcare experience is impacted by the context of colonisation and discordance between Indigenous understandings of health and the Western biomedical health system. This study aimed to assess the extent to which existing patient experience measures used in Australia collect information about critical aspects of cancer care, as previously identified by Indigenous people affected by cancer and their health care providers. Methods A two-stage process was used to examine the adequacy of existing patient experience measures for Indigenous people in Australia: (1) relevant tools and measures were identified and assessed, and four measures selected as suitable comparators; (2) comparators were examined in detail and mapped against topics identified in earlier research as important to Indigenous people with cancer. Gaps in topic coverage in comparators were identified. Results No comparators completely captured the critical aspects of cancer care identified by Indigenous people affected by cancer and their health care providers. The number of topics ‘partially’ captured by the four comparators ranged from 4 to 7 out of 9. While most topics were partially covered, the lack of questions around culture and cultural safety was notable. Conclusions Existing tools are likely to miss key aspects of Indigenous peoples’ experiences of cancer care in Australia. Failure to adequately assess care experiences related to cultural safety may compromise efforts to improve health outcomes. Addressing gaps requires development of experience measures that are strengths-based, reflect an Indigenous worldview and measure aspects of experience relevant to Indigenous people.

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Measuring health care experiences that matter to Indigenous people in Australia with cancer: identifying critical gaps in existing tools

et al. 2021

Int J Equity Health

“…Cultural aspects of life are central to Indigenous world views (17,18) and are commonly prioritised above treatment outcomes (19), which contrasts with the disease-oriented approach of the biomedical system. Patient experience measurement instruments may not re ect the world views and priorities of Indigenous people (15), as has been shown regarding supportive care needs (20), health related quality of life (21), wellbeing (22) and social and emotional wellbeing (23). Although there may be some aspects of existing standard measures that are relevant to Indigenous people, their use for Indigenous people presumes common de nitions, values, needs and perceptions of health; a presumption which is often inappropriate (20)(21)(22)(23)(24).…”

Section: Recent Efforts Have Been Made To Consider the Adequacy Of Exmentioning

confidence: 99%

“…. However, these are recognised as important indicators of quality of care and should be included in data collection and reporting.As has been demonstrated in the existing literature, it is insu cient to simply translate existing tools into a language or format that reaches Indigenous people(20)(21)(22)(23). The Picker PCC domains(25), which have informed patient experience measures in Australia for many years(36), do not originate from an Indigenous world view and may miss core principles relevant to Indigenous populations.…”

mentioning

confidence: 99%

Measuring Health Care Experiences that Matter to Indigenous People in Australia with Cancer: Identifying Critical Gaps in Existing Tools

et al. 2020

Preprint

Background: The measurement of patients’ experiences of healthcare is increasingly used as an indicator of the quality of care. There are concerns that many mechanisms used to collect patient experience data produce large amounts of superficial data, while missing deeper, more nuanced information that is meaningful to the patient, and that insufficient attention is paid to whether the information is used to make a difference to health care. This is particularly so for Indigenous people in Australia, whose health care experience is impacted by the context of colonisation and discordance between Indigenous understandings of health and the biomedical health system. The aim of this study was to assess the extent to which existing patient experience measures currently in use in Australia collect information about the most critical aspects of cancer care, as identified by Indigenous people affected by cancer and their health care providers in previous research. Methods: A two-stage process was used to examine the adequacy of existing patient experience measures for Indigenous people in Australia: (1) relevant tools and measures were identified and assessed, and four measures were selected as suitable comparators; (2) the comparators were examined in detail and mapped against the topics identified in our earlier research as important to Indigenous people affected by cancer. Gaps in topic coverage in the comparators were identified. Results: No comparators completely captured the critical aspects of cancer care identified by Indigenous people with cancer and their health care providers. The number of topics ‘partially’ captured by the four comparators ranged from 4 to 7 out of 9. While most topics were at least partially covered, the lack of questions around culture and cultural safety was notable. Conclusions: Existing patient experience measurement tools are likely to miss some key aspects of Indigenous peoples’ experiences of cancer care in Australia. Failure to adequately assess experiences of care related to cultural safety may compromise efforts to improve health outcomes. Addressing the gaps requires the development of experience measures that are strengths-based, reflect an Indigenous world view and measure aspects of experience that are relevant to Indigenous people.

“…Cultural aspects of life are central to Indigenous world views (26,27) and may be prioritised above treatment outcomes (17), which contrasts with the disease-oriented approach of the biomedical system. Patient experience measurement instruments may not re ect the world views and priorities of Indigenous people (9,16), as has been shown regarding supportive care needs (28), health related quality of life (29), wellbeing (30) and social and emotional wellbeing (31). Although there may be some aspects of existing standard measures that are relevant to Indigenous people, their use for Indigenous people presumes common de nitions, values, needs and perceptions of health; a presumption which is often inappropriate (28)(29)(30)(31)(32).…”

Section: Introductionmentioning

confidence: 99%

Measuring health care experiences that matter to Indigenous people in Australia with cancer: identifying critical gaps in existing tools

et al. 2020

Preprint

Background: Measurement of patients’ healthcare experiences is increasingly used as an indicator of quality of care, but there are concerns that existing measures omit information that is meaningful to patients and that results may not be used systematically to inform service improvement. Further, current approaches may be inadequate for some population groups, such as Indigenous people in Australia, whose healthcare experience is impacted by the context of colonisation and discordance between Indigenous understandings of health and the Western biomedical health system. This study aimed to assess the extent to which existing patient experience measures used in Australia collect information about critical aspects of cancer care, as previously identified by Indigenous people affected by cancer and their health care providers.Methods: A two-stage process was used to examine the adequacy of existing patient experience measures for Indigenous people in Australia: (1) relevant tools and measures were identified and assessed, and four measures selected as suitable comparators; (2) comparators were examined in detail and mapped against topics identified in earlier research as important to Indigenous people with cancer. Gaps in topic coverage in comparators were identified. Results: No comparators completely captured the critical aspects of cancer care identified by Indigenous people affected by cancer and their health care providers. The number of topics ‘partially’ captured by the four comparators ranged from 4 to 7 out of 9. While most topics were partially covered, the lack of questions around culture and cultural safety was notable. Conclusions: Existing tools are likely to miss key aspects of Indigenous peoples’ experiences of cancer care in Australia. Failure to adequately assess care experiences related to cultural safety may compromise efforts to improve health outcomes. Addressing gaps requires development of experience measures that are strengths-based, reflect an Indigenous worldview and measure aspects of experience relevant to Indigenous people.