TY - JOUR
T1 - Improving the methods for patient-reported experience measures in palliative care
T2 - findings from a cognitive interview study
AU - Luckett, Tim
AU - Virdun, Claudia
AU - Rao, Angela
AU - Daly, Lilian
AU - Hackl, Nadine
AU - Willems, Alexander
AU - Phillips, Jane L.
PY - 2022/7/28
Y1 - 2022/7/28
N2 - 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.
AB - 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.
KW - Palliative care
KW - qualitative research
KW - survey methods
UR - http://www.scopus.com/inward/record.url?scp=85134927286&partnerID=8YFLogxK
U2 - 10.21037/apm-22-9
DO - 10.21037/apm-22-9
M3 - Article
C2 - 35400154
AN - SCOPUS:85134927286
SN - 2224-5820
VL - 11
SP - 2275
EP - 2284
JO - Annals of Palliative Medicine
JF - Annals of Palliative Medicine
IS - 7
ER -