Improving the methods for patient-reported experience measures in palliative care: findings from a cognitive interview study.

Luckett, T; Virdun, C; Rao, A; Daly, L; Hackl, N; Willems, A; Phillips, JL

Improving the methods for patient-reported experience measures in palliative care: findings from a cognitive interview study.

Luckett, T

Virdun, C

Rao, A

Daly, L Hackl, N Willems, A Phillips, JL

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Publisher:: AME Publishing
Publication Type:: Journal Article
Citation:: Annals of Palliative Medicine, 2022, 11, (7), pp. 2275-2284
Issue Date:: 2022-07

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Field	Value	Language
dc.contributor.author	Luckett, T https://orcid.org/0000-0001-6121-5409
dc.contributor.author	Virdun, C https://orcid.org/0000-0003-3945-0749
dc.contributor.author	Rao, A https://orcid.org/0000-0002-7904-5556
dc.contributor.author	Daly, L
dc.contributor.author	Hackl, N
dc.contributor.author	Willems, A
dc.contributor.author	Phillips, JL
dc.date.accessioned	2022-10-12T03:36:32Z
dc.date.available	2022-03-03
dc.date.available	2022-10-12T03:36:32Z
dc.date.issued	2022-07
dc.identifier.citation	Annals of Palliative Medicine, 2022, 11, (7), pp. 2275-2284
dc.identifier.issn	2224-5839
dc.identifier.issn	2224-5839
dc.identifier.uri	http://hdl.handle.net/10453/162513
dc.description.abstract	BACKGROUND: Patient-reported experience measures (PREMs) are questionnaires that ask patients about their experience of healthcare to inform service improvements. It is unclear how palliative care patients manage the cognitive demands of completing PREMs, or how this can best be supported. This study aimed to explore cognitive operations among people with palliative care needs when completing a PREM focused on the care domains known to be important to this patient population in order to inform future administration of questionnaires for this purpose. METHODS: A qualitative approach was taken, using cognitive interviews. Participants were people receiving specialist palliative care with stable disease who were not bedbound. Interviews used 'think aloud' and verbal probes to explore the cognitive operations of comprehension, recall, judgement and response to a 33-item PREM, drafted using a standard process employed by the New South Wales Bureau of Health Information. Analysis proceeded first within- and then cross-cases to explore patterns. RESULTS: Fifteen people participated, all of whom had cancer except one with motor neuron disease. Six discussed inpatient care, and nine community care. Participants encountered challenges with all four cognitive operations. Many participants were unfamiliar with end-of-life care concepts like declining treatment and advance care planning. Participants often struggled to remember, answered hypothetically, or digressed beyond the focal setting. Few participants used the mid-point on a 3-point scale. However, all participants could complete two open-ended items on care aspects they regarded as 'best' or 'most needs improving'. CONCLUSIONS: Palliative care patients find PREMs challenging to complete and require supports to improve the quality and interpretability of data. Pending further research, tentative suggestions are made for PREM design and administration for this patient population.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	AME Publishing
dc.relation.ispartof	Annals of Palliative Medicine
dc.relation.isbasedon	10.21037/apm-22-9
dc.rights	info:eu-repo/semantics/openAccess
dc.subject.mesh	Cognition
dc.subject.mesh	Hospice Care
dc.subject.mesh	Humans
dc.subject.mesh	Palliative Care
dc.subject.mesh	Patient Reported Outcome Measures
dc.subject.mesh	Qualitative Research
dc.subject.mesh	Cognition
dc.subject.mesh	Hospice Care
dc.subject.mesh	Humans
dc.subject.mesh	Palliative Care
dc.subject.mesh	Patient Reported Outcome Measures
dc.subject.mesh	Qualitative Research
dc.subject.mesh	Humans
dc.subject.mesh	Palliative Care
dc.subject.mesh	Hospice Care
dc.subject.mesh	Cognition
dc.subject.mesh	Qualitative Research
dc.subject.mesh	Patient Reported Outcome Measures
dc.title	Improving the methods for patient-reported experience measures in palliative care: findings from a cognitive interview study.
dc.type	Journal Article
utslib.citation.volume	11
utslib.location.activity	China
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Strength - CHSP - Health Services and Practice
pubs.organisational-group	/University of Technology Sydney/Strength - CHT - Health Technologies
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/IMPACCT
pubs.organisational-group	/University of Technology Sydney/Centre for Health Technologies (CHT)
utslib.copyright.status	open_access	*
pubs.consider-herdc	false
dc.date.updated	2022-10-12T03:36:31Z
pubs.issue	7
pubs.publication-status	Published
pubs.volume	11
utslib.citation.issue	7

Abstract:

BACKGROUND: Patient-reported experience measures (PREMs) are questionnaires that ask patients about their experience of healthcare to inform service improvements. It is unclear how palliative care patients manage the cognitive demands of completing PREMs, or how this can best be supported. This study aimed to explore cognitive operations among people with palliative care needs when completing a PREM focused on the care domains known to be important to this patient population in order to inform future administration of questionnaires for this purpose. METHODS: A qualitative approach was taken, using cognitive interviews. Participants were people receiving specialist palliative care with stable disease who were not bedbound. Interviews used 'think aloud' and verbal probes to explore the cognitive operations of comprehension, recall, judgement and response to a 33-item PREM, drafted using a standard process employed by the New South Wales Bureau of Health Information. Analysis proceeded first within- and then cross-cases to explore patterns. RESULTS: Fifteen people participated, all of whom had cancer except one with motor neuron disease. Six discussed inpatient care, and nine community care. Participants encountered challenges with all four cognitive operations. Many participants were unfamiliar with end-of-life care concepts like declining treatment and advance care planning. Participants often struggled to remember, answered hypothetically, or digressed beyond the focal setting. Few participants used the mid-point on a 3-point scale. However, all participants could complete two open-ended items on care aspects they regarded as 'best' or 'most needs improving'. CONCLUSIONS: Palliative care patients find PREMs challenging to complete and require supports to improve the quality and interpretability of data. Pending further research, tentative suggestions are made for PREM design and administration for this patient population.

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http://hdl.handle.net/10453/162513