Challenges in a six-phase process of questionnaire adaptation: findings from the French translation of the Integrated Palliative care Outcome Scale

Background: Gathering clinical evidence data on patients’ palliative care needs is paramount to identify changes in outcomes over time and maintaining on-going quality improvement. Implementation of patient-centred outcome measures has been widely recommended. The routine use of these instruments in daily practice is challenging and not widespread. Aim: To implement a patient-centred outcome measure in daily practice and fulfil one quality indicator: improve pain during the 72 h after admission, in at least 75% of patients. Design: An observational prospective study. The Palliative care Outcome Scale was used at admission (T0), third day (T1) and weekly. Setting/participants: Hospital palliative care unit with 17 individual rooms. All patients admitted to the unit were included in the study. Results: Preliminary results ( N = 84) revealed inconsistent and missing data (14%). Symptoms were sub-optimally controlled by T1. Processes changed, and only a team member could apply Palliative care Outcome Scale. Doctors were encouraged to grasp the meaning of Palliative care Outcome Scale results for each patient. The post-pilot included 317 patients. No missing data occurred. There was an improvement in most items between T0 and T1: ‘pain’ and ‘other symptoms’ presented statistical significant differences ( p < 0.05). Conclusion: Implementing a patient-centred outcome measure in a hospital palliative care service is feasible and improves quality of care. Controlling high pain at T0 improved (>80%) by T1. Results became more consistent and symptom control was improved overall. Patients are evaluated based on holistic domains by an interdisciplinary team and we have added a much needed measure to help guide improvement of the quality of care provided.

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Palliative Care Outcome Scale

PsycTESTS Dataset ◽

10.1037/t53248-000 ◽

1999 ◽

Author(s):

Julie Hearn ◽

◽

Irene J. Higginson

Keyword(s):

Palliative Care ◽

Palliative Care Outcome Scale ◽

Care Outcome

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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)

Palliative Medicine ◽

10.1177/0269216319854264 ◽

2019 ◽

Vol 33 (8) ◽

pp. 1045-1057 ◽

Cited By ~ 27

Author(s):

Fliss EM Murtagh ◽

Christina Ramsenthaler ◽

Alice Firth ◽

Esther I Groeneveld ◽

Natasha Lovell ◽

...

Keyword(s):

Palliative Care ◽

Internal Consistency ◽

Outcome Measure ◽

Self Report ◽

Advanced Illness ◽

Proxy Report ◽

Palliative Care Outcome Scale ◽

Test Retest Reliability ◽

Care Outcome ◽

Responsiveness To Change

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 < 0.001). Good convergent and discriminant validity to hypothesised items and subscales of the Edmonton Symptom Assessment System and Functional Assessment of Cancer Therapy–General is demonstrated. The Integrated Palliative care Outcome Scale shows good internal consistency (α = 0.77) and acceptable to good test–retest reliability (60% of items kw > 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.

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