Background The Integrated Palliative Care Outcome Scale (IPOS) is a widely used questionnaire of patients’ palliative care needs. If a patient is too unwell to complete an IPOS, a proxy respondent (family or staff) completes one on their behalf. Previous studies have compared proxy respondents’ assessments of patient symptoms using a variety of scales, but none have used IPOS. There is therefore a lack of evidence to guide the selection of the most appropriate proxy IPOS respondent.
Aims To measure the agreement between patients and family members, doctors, nurses and nursing assistants (NSA) in assessing patients’ concerns using IPOS.
Methods Once a week over one year, for each patient in our inpatient unit who had completed their own IPOS, a family member, doctor, nurse and NSA completed a proxy IPOS. We measured agreement using weighted Kappa statistics.
Results We had 95 response sets (patient plus at least one staff or family). Proxy respondents’ agreement with patients was only moderate or fair for each IPOS item (Kappa 0.2–0.6). Overall, family members agreed most closely with patients (Kappa 0.58). There was no difference in agreement between different staff groups. For the majority of IPOS items, staff gave significantly lower ratings than patients. For a small number of items, family gave significantly higher ratings than patients. Both staff and family significantly over-estimate the patient not feeling at peace.
Conclusions Whenever possible, patients should be supported to complete their own IPOS, as proxy respondents do not agree strongly with patients. When patients are unable to complete an IPOS, family members are the most appropriate proxy. Under-estimation of issues by staff has implications for our ability to accurately assess and address our patients’ needs. Conversely, over-estimation of issues, particularly the extent to which a patient feels at peace, may lead to under-estimation of quality of life.
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