Abstract

BackgroundTo culturally adapt and validate the Integrated Palliative care Outcome Scale to European Portuguese.MethodsMulti-centred observational study with 2 assessment points. Data were collected in nine centres using consecutive sampling. All patients were screened for eligibility. Inclusion criteria: ≥18 years, mentally fit to give consent, diagnosed with an incurable, potentially life-threatening illness, read, write and understand Portuguese. Translation and back translation with independent native speakers blind to the original measure created a Portuguese version, which was culturally adapted using cognitive interviews. For psychometric testing, the COSMIN checklist was followed. Reliability and content validity were assessed for patient and staff versions. Construct and criterion validity were tested for patient version.Results1703 individuals were screened between July 1st 2015 and February 2016, 135 (7.9%) were included. Mean age was 66.8 years (SD 12.7), 58 (43%) were female. Most patients (109; 80.7%) had a cancer diagnosis. Cronbach’s alpha showed good internal consistency, 0.657 for patient, 0.705 for staff versions. Intraclass correlation coefficient testing reproducibility revealed very good reliability, 0.794–0.950 for patient and 0.456–0.925 for staff versions. There was good content validity and significant results for construct validity. Physical symptoms were better detected by females. IPOS could discriminate: practical issues in different places of care, based on cancer diagnosis, physical and emotional symptoms based on life expectancy both for patient and professional dimensions, physical and emotional symptoms based on phase of illness, for professional dimensions, and physical symptoms from the patients’ viewpoint.ConclusionsThe Portuguese IPOS is a reliable and valid measure.

Highlights

  • To culturally adapt and validate the Integrated Palliative care Outcome Scale to European Portuguese

  • The Integrated Palliative care Outcome Scale (IPOS) [1] is a patient-centred outcome measure resulting from the merge of two previously existing measures: the Palliative care Outcome Scale and the Palliative care Outcome Scale-Symptoms [2]

  • Linguistic and cultural adaptation We followed the internationally defined methodology for the linguistic and cultural adaptation for the validation of outcome measures proposed by the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist [3] and the sequential approach for the translation [4]

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Summary

Introduction

To culturally adapt and validate the Integrated Palliative care Outcome Scale to European Portuguese. The Integrated Palliative care Outcome Scale (IPOS) [1] is a patient-centred outcome measure resulting from the merge of two previously existing measures: the Palliative care Outcome Scale and the Palliative care Outcome Scale-Symptoms [2]. IPOS was developed at the request of several clinicians wanting a more user-friendly measure for clinical practice. One to be self-reported by patients, and a staff-proxy-reported to be filled by healthcare professionals, considering the perceptions and holistic assessment of the symptoms and other concerns the patient might have. The aim of this study was twofold: (i) to translate, culturally adapt and validate the original English IPOS into Portuguese, and (ii) to compare the results obtained by the two versions of IPOS

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