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Adaptation and psychometric evaluation of the Integrated Palliative care Outcome Scale for Neurological conditions
Lily Man Lee Chan1, Edmond Pui Hang Choi1, Wendy Wing Tak Lam2,3
1School of Nursing, Li Ka Shing Faculty of Medicine, The University of Hong Kong, Hong Kong SAR, China.
Background:
Palliative care has been advocated to improve symptom burden and quality of life among people with progressive neurological diseases. However, validated palliative care outcome measures for neurological conditions remain limited in non-Western settings.
Aim:
To translate, adapt and psychometrically evaluate the Integrated Palliative care Outcome Scale for Neurological conditions (IPOS-Neuro) among people with progressive neurological diseases in Hong Kong.
Design:
The traditional Chinese version of IPOS-Neuro was developed through forward-backward translations, cognitive debriefing interviews, and expert review. Psychometric properties were evaluated by examining factor structure, convergent validity, concurrent validity, internal consistency, and test-retest reliability. Comparator instruments included Palliative Care Outcome Scale, Hospital Anxiety and Depression Scale, and EQ-5D-5L.
Setting/Participants:
Two hundred and ten adults with progressive neurological diseases recruited from regional neurology outpatient clinics and patient support groups in Hong Kong.
Results:
Confirmatory factor analysis supported the three-factor structure (Physical Symptoms, Emotional Symptoms, and Communication/Practical Issues) with acceptable fit indices. IPOS-Neuro showed good internal consistency (Cronbach's alpha = 0.93), strong concurrent validity with Palliative Care Outcome Scale (r = 0.74), moderate convergent validity with EQ-5D-5L index (r = -0.51) and Hospital Anxiety and Depression Scale (r = 0.56), and excellent test-retest reliability (intraclass correlation coefficient = 0.99). Additional exploratory factor analysis identified a new clinically-meaningful nine-factor model: psychosocial problems and symptom dimensions related to fatigue, motor, gastrointestinal, oral and sensory, cognitive, sexual, bowel, and non-motor issues.
Conclusion:
The traditional Chinese version of IPOS-Neuro showed promising psychometric properties for assessing palliative care needs in progressive neurological diseases. Future validation in larger and diverse neurological disease samples is warranted.