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A brief, patient- and proxy-reported outcome measure in advanced illness: Validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS)

Murtagh, Fliss E.M.; Ramsenthaler, Christina; Firth, Alice; Groeneveld, Esther I.; Lovell, Natasha; Simon, Steffen T.; Denzel, Johannes; Guo, Ping; Bernhardt, Florian; Schildmann, Eva; van Oorschot, Birgitt; Hodiamont, Farina; Streitwieser, Sabine; Higginson, Irene J.; Bausewein, Claudia

Authors

Christina Ramsenthaler

Alice Firth

Esther I. Groeneveld

Natasha Lovell

Steffen T. Simon

Johannes Denzel

Ping Guo

Florian Bernhardt

Eva Schildmann

Birgitt van Oorschot

Farina Hodiamont

Sabine Streitwieser

Irene J. Higginson

Claudia Bausewein



Abstract

Background:
Few measures capture the complex symptoms and concerns of those receiving palliative care.

Aim:
To validate the Integrated Palliative care Outcome Scale, a measure underpinned by extensive psychometric development, by evaluating its validity, reliability and responsiveness to change.

Design:
Concurrent, cross-cultural validation study of the Integrated Palliative care Outcome Scale – both (1) patient self-report and (2) staff proxy-report versions. We tested construct validity (factor analysis, known-group comparisons, and correlational analysis), reliability (internal consistency, agreement, and test–retest reliability), and responsiveness (through longitudinal evaluation of change).

Setting/participants:
In all, 376 adults receiving palliative care, and 161 clinicians, from a range of settings in the United Kingdom and Germany

Results:
We confirm a three-factor structure (Physical Symptoms, Emotional Symptoms and Communication/Practical Issues). Integrated Palliative care Outcome Scale shows strong ability to distinguish between clinically relevant groups; total Integrated Palliative care Outcome Scale and Integrated Palliative care Outcome Scale subscale scores were higher – reflecting more problems – in those patients with ‘unstable’ or ‘deteriorating’ versus ‘stable’ Phase of Illness (F = 15.1, p  0.60). Longitudinal validity in form of responsiveness to change is good.

Conclusion:
The Integrated Palliative care Outcome Scale is a valid and reliable outcome measure, both in patient self-report and staff proxy-report versions. It can assess and monitor symptoms and concerns in advanced illness, determine the impact of healthcare interventions, and demonstrate quality of care. This represents a major step forward internationally for palliative care outcome measurement.

Journal Article Type Article
Journal Palliative Medicine
Print ISSN 0269-2163
Electronic ISSN 1477-030X
Publisher SAGE Publications
Peer Reviewed Peer Reviewed
Pages 026921631985426
APA6 Citation Murtagh, F. E., Ramsenthaler, C., Firth, A., Groeneveld, E. I., Lovell, N., Simon, S. T., …Bausewein, C. (in press). A brief, patient- and proxy-reported outcome measure in advanced illness: Validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS). Palliative medicine, 026921631985426. https://doi.org/10.1177/0269216319854264
DOI https://doi.org/10.1177/0269216319854264
Keywords Anesthesiology and Pain Medicine; General Medicine
Publisher URL https://journals.sagepub.com/doi/10.1177/0269216319854264

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Copyright Statement
This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).





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