Measuring coping in people with amyotrophic lateral sclerosis using the Coping Index-ALS: A patient derived, Rasch compliant scale
dc.contributor.author | Young, CA | |
dc.contributor.author | McDermott, CJ | |
dc.contributor.author | Williams, TL | |
dc.contributor.author | Ealing, J | |
dc.contributor.author | Majeed, T | |
dc.contributor.author | Al-Chalabi, A | |
dc.contributor.author | Dick, DJ | |
dc.contributor.author | Talbot, K | |
dc.contributor.author | Harrower, T | |
dc.contributor.author | Pinto, A | |
dc.contributor.author | Hanemann, Clemens Oliver | |
dc.contributor.author | Burke, G | |
dc.contributor.author | Roberts, R | |
dc.contributor.author | Mills, RJ | |
dc.contributor.author | Tennant, A | |
dc.date.accessioned | 2021-08-10T07:48:06Z | |
dc.date.issued | 2021-02 | |
dc.identifier.issn | 0022-510X | |
dc.identifier.issn | 1878-5883 | |
dc.identifier.other | 117285 | |
dc.identifier.uri | http://hdl.handle.net/10026.1/17535 | |
dc.description.abstract |
OBJECTIVE: The progressively disabling and terminal nature of ALS/MND imposes major coping demands on patients. We wished to improve the psychometric properties of our previously published MND-Coping Scale, so that parametric analyses were valid, and to make it simpler for patients to complete and clinicians to score. METHODS: After a new qualitative analysis of 26 patients with ALS/MND, the draft Coping Index-ALS (CI-ALS) was administered to 465 additional patients, alongside COPE-60, General Perceived Self Efficacy scale, and WHOQOL-BREF. Validity of the CI-ALS was assessed using the Rasch model. External validity was checked against comparator measures. RESULTS: Thirteen centres contributed 465 patients, mean age 64.9 years (SD 10.8), mean disease duration 28.4 months (SD 37.5). The CI-ALS-Self and CI-ALS-Others both satisfied Rasch model expectations and showed invariance across age, gender, marital status and type of onset. Expected correlations were observed with comparator scales. A nomogram is available to convert the raw scores to interval level measures suitable for parametric analysis. CONCLUSIONS: Coping abilities in ALS/MND can now be measured using a simple 21 item self-report measure, offering two subscales with a focus of 'coping by self ' and 'coping with others'. This allows clinicians to identify individuals with poor coping and facilitates research on interventions that may improve coping skills. | |
dc.format.extent | 117285-117285 | |
dc.format.medium | Print-Electronic | |
dc.language | en | |
dc.language.iso | eng | |
dc.publisher | Elsevier BV | |
dc.subject | Amyotrophic lateral sclerosis | |
dc.subject | Coping | |
dc.subject | Disease-specific | |
dc.subject | Motor neuron disease | |
dc.subject | Patient reported outcome measure | |
dc.subject | Rasch | |
dc.subject | Adaptation, Psychological | |
dc.subject | Aged | |
dc.subject | Amyotrophic Lateral Sclerosis | |
dc.subject | Humans | |
dc.subject | Middle Aged | |
dc.subject | Psychometrics | |
dc.subject | Self Report | |
dc.title | Measuring coping in people with amyotrophic lateral sclerosis using the Coping Index-ALS: A patient derived, Rasch compliant scale | |
dc.type | journal-article | |
dc.type | Journal Article | |
plymouth.author-url | https://www.ncbi.nlm.nih.gov/pubmed/33385753 | |
plymouth.volume | 421 | |
plymouth.publication-status | Published | |
plymouth.journal | Journal of the Neurological Sciences | |
dc.identifier.doi | 10.1016/j.jns.2020.117285 | |
plymouth.organisational-group | /Plymouth | |
plymouth.organisational-group | /Plymouth/Faculty of Health | |
plymouth.organisational-group | /Plymouth/Faculty of Health/Peninsula Medical School | |
plymouth.organisational-group | /Plymouth/REF 2021 Researchers by UoA | |
plymouth.organisational-group | /Plymouth/REF 2021 Researchers by UoA/UoA01 Clinical Medicine | |
plymouth.organisational-group | /Plymouth/Research Groups | |
plymouth.organisational-group | /Plymouth/Research Groups/Institute of Translational and Stratified Medicine (ITSMED) | |
plymouth.organisational-group | /Plymouth/Research Groups/Institute of Translational and Stratified Medicine (ITSMED)/CBR | |
plymouth.organisational-group | /Plymouth/Users by role | |
plymouth.organisational-group | /Plymouth/Users by role/Academics | |
plymouth.organisational-group | /Plymouth/Users by role/Researchers in ResearchFish submission | |
dc.publisher.place | Netherlands | |
dcterms.dateAccepted | 2020-12-17 | |
dc.rights.embargodate | 9999-12-31 | |
dc.identifier.eissn | 1878-5883 | |
dc.rights.embargoperiod | Not known | |
rioxxterms.versionofrecord | 10.1016/j.jns.2020.117285 | |
rioxxterms.licenseref.uri | http://www.rioxx.net/licenses/all-rights-reserved | |
rioxxterms.licenseref.startdate | 2021-02-15 | |
rioxxterms.type | Journal Article/Review |