Psychometric properties of a generic, patient-centred palliative care outcome measure of symptom burden for people with progressive long term neurological conditions
Background There is no standard palliative care outcome measure for people with progressive long term neurological conditions (LTNC). This study aims to determine the psychometric properties of a new 8-item palliative care outcome scale of symptom burden (IPOS Neuro-S8) in this population. Data an...
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| Format: | Article |
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Public Library of Science
2016
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| Online Access: | https://eprints.nottingham.ac.uk/48269/ |
| _version_ | 1848797728366133248 |
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| author | Gao, Wei Crosby, Vincent Wilcock, Andrew Burman, Rachael Silber, Eli Hepgul, Nilay Chaudhuri, K. Ray Higginson, Irene J. |
| author_facet | Gao, Wei Crosby, Vincent Wilcock, Andrew Burman, Rachael Silber, Eli Hepgul, Nilay Chaudhuri, K. Ray Higginson, Irene J. |
| author_sort | Gao, Wei |
| building | Nottingham Research Data Repository |
| collection | Online Access |
| description | Background
There is no standard palliative care outcome measure for people with progressive long term neurological conditions (LTNC). This study aims to determine the psychometric properties of a new 8-item palliative care outcome scale of symptom burden (IPOS Neuro-S8) in this population.
Data and Methods
Data were merged from a Phase II palliative care intervention study in multiple sclerosis (MS) and a longitudinal observational study in idiopathic Parkinson's disease (IPD), multiple system atrophy (MSA) and progressive supranuclear palsy (PSP). The IPOS Neuro-S8 was assessed for its data quality, score distribution, ceiling and floor effects, reliability, factor structure, convergent and discriminant validity, concurrent validity with generic (Palliative care Outcome Scale) and condition specific measures (Multiple Sclerosis Impact Scale; Non-motor Symptoms Questionnaire; Parkinson's Disease Questionnaire), responsiveness and minimally clinically important difference.
Results
Of the 134 participants, MS patients had a mean Extended Disability Status Scale score 7.8 (SD = 1.0), patients with an IPD, MSA or PSP were in Hoehn & Yahr stage 3±5. The IPOS Neuro-S8 had high data quality (2% missing), mean score 8 (SD = 5; range 0±32), no ceiling effects, borderline floor effects, good internal consistency (Cronbach's α = 0.7) and moderate test-retest reliability (intraclass coefficient = 0.6). The results supported a moderately correlated two-factor structure (Pearson's r = 0.5). It was moderately correlated with generic and condition specific measures (Pearson's r: 0.5±0.6). There was some evidence for discriminant validity in IPD, MSA and PSP (p = 0.020), and for good responsiveness and longitudinal construct validity.
Conclusions
IPOS Neuro-S8 shows acceptable to promising psychometric properties in common forms of progressive LTNCs. Future work needs to confirm these findings with larger samples and its usefulness in wider disease groups. |
| first_indexed | 2025-11-14T20:08:29Z |
| format | Article |
| id | nottingham-48269 |
| institution | University of Nottingham Malaysia Campus |
| institution_category | Local University |
| last_indexed | 2025-11-14T20:08:29Z |
| publishDate | 2016 |
| publisher | Public Library of Science |
| recordtype | eprints |
| repository_type | Digital Repository |
| spelling | nottingham-482692020-05-04T18:15:34Z https://eprints.nottingham.ac.uk/48269/ Psychometric properties of a generic, patient-centred palliative care outcome measure of symptom burden for people with progressive long term neurological conditions Gao, Wei Crosby, Vincent Wilcock, Andrew Burman, Rachael Silber, Eli Hepgul, Nilay Chaudhuri, K. Ray Higginson, Irene J. Background There is no standard palliative care outcome measure for people with progressive long term neurological conditions (LTNC). This study aims to determine the psychometric properties of a new 8-item palliative care outcome scale of symptom burden (IPOS Neuro-S8) in this population. Data and Methods Data were merged from a Phase II palliative care intervention study in multiple sclerosis (MS) and a longitudinal observational study in idiopathic Parkinson's disease (IPD), multiple system atrophy (MSA) and progressive supranuclear palsy (PSP). The IPOS Neuro-S8 was assessed for its data quality, score distribution, ceiling and floor effects, reliability, factor structure, convergent and discriminant validity, concurrent validity with generic (Palliative care Outcome Scale) and condition specific measures (Multiple Sclerosis Impact Scale; Non-motor Symptoms Questionnaire; Parkinson's Disease Questionnaire), responsiveness and minimally clinically important difference. Results Of the 134 participants, MS patients had a mean Extended Disability Status Scale score 7.8 (SD = 1.0), patients with an IPD, MSA or PSP were in Hoehn & Yahr stage 3±5. The IPOS Neuro-S8 had high data quality (2% missing), mean score 8 (SD = 5; range 0±32), no ceiling effects, borderline floor effects, good internal consistency (Cronbach's α = 0.7) and moderate test-retest reliability (intraclass coefficient = 0.6). The results supported a moderately correlated two-factor structure (Pearson's r = 0.5). It was moderately correlated with generic and condition specific measures (Pearson's r: 0.5±0.6). There was some evidence for discriminant validity in IPD, MSA and PSP (p = 0.020), and for good responsiveness and longitudinal construct validity. Conclusions IPOS Neuro-S8 shows acceptable to promising psychometric properties in common forms of progressive LTNCs. Future work needs to confirm these findings with larger samples and its usefulness in wider disease groups. Public Library of Science 2016-10-25 Article PeerReviewed Gao, Wei, Crosby, Vincent, Wilcock, Andrew, Burman, Rachael, Silber, Eli, Hepgul, Nilay, Chaudhuri, K. Ray and Higginson, Irene J. (2016) Psychometric properties of a generic, patient-centred palliative care outcome measure of symptom burden for people with progressive long term neurological conditions. PLOS ONE, 11 (10). e0165379. ISSN 1932-6203 http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0165379 doi:10.1371/journal.pone.0165379 doi:10.1371/journal.pone.0165379 |
| spellingShingle | Gao, Wei Crosby, Vincent Wilcock, Andrew Burman, Rachael Silber, Eli Hepgul, Nilay Chaudhuri, K. Ray Higginson, Irene J. Psychometric properties of a generic, patient-centred palliative care outcome measure of symptom burden for people with progressive long term neurological conditions |
| title | Psychometric properties of a generic, patient-centred palliative care outcome measure of symptom burden for people with progressive long term neurological conditions |
| title_full | Psychometric properties of a generic, patient-centred palliative care outcome measure of symptom burden for people with progressive long term neurological conditions |
| title_fullStr | Psychometric properties of a generic, patient-centred palliative care outcome measure of symptom burden for people with progressive long term neurological conditions |
| title_full_unstemmed | Psychometric properties of a generic, patient-centred palliative care outcome measure of symptom burden for people with progressive long term neurological conditions |
| title_short | Psychometric properties of a generic, patient-centred palliative care outcome measure of symptom burden for people with progressive long term neurological conditions |
| title_sort | psychometric properties of a generic, patient-centred palliative care outcome measure of symptom burden for people with progressive long term neurological conditions |
| url | https://eprints.nottingham.ac.uk/48269/ https://eprints.nottingham.ac.uk/48269/ https://eprints.nottingham.ac.uk/48269/ |