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Measuring coping in people with amyotrophic lateral sclerosis using the Coping Index-ALS: A patient derived, Rasch compliant scale

Lookup NU author(s): Dr Timothy Williams


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© 2020Objective: 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.

Publication metadata

Author(s): Young CA, McDermott CJ, Williams TL, Ealing J, Majeed T, Al-Chalabi A, Dick DJ, Talbot K, Harrower T, Pinto A, Hanemann CO, Burke G, Roberts R, Mills RJ, Tennant A

Publication type: Article

Publication status: Published

Journal: Journal of the Neurological Sciences

Year: 2021

Volume: 421

Online publication date: 29/12/2020

Acceptance date: 17/12/2020

ISSN (print): 0022-510X

ISSN (electronic): 1878-5883

Publisher: Elsevier B.V.


DOI: 10.1016/j.jns.2020.117285


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