Measuring coping in Multiple Sclerosis: The Coping Index-MS

Carolyn A Young; RJ MIlls; Dawn Langdon; D Rog; B Sharrack; S Kalra; T Majeed; D Footit; T Harrower; R Nicholas; Helen Ford; John Woolmore; C Johnstone; J Thorpe; D Paling; C Ellis; C. O.  Hanneman; Alan Tennant

doi:10.1177/13524585221114004

Measuring coping in Multiple Sclerosis: The Coping Index-MS

Carolyn A Young, RJ MIlls, Dawn Langdon, D Rog, B Sharrack, S Kalra, T Majeed, D Footit, T Harrower, R Nicholas, Helen Ford, John Woolmore, C Johnstone, J Thorpe, D Paling, C Ellis, C. O. Hanneman, Alan Tennant

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Abstract

Background: Coping in MS refers to cognitive and behavioural efforts to manage stresses imposed by the illness. Existing generic and disease-specific coping scales do not meet modern guidelines for scale development, and/or cannot produce interval-level metrics to allow for change scores.
Objective: To develop a brief patient-reported outcome measure for coping in MS, capable of interval-level measurement.
Methods: Qualitative work in 43 people with MS lead to a draft scale which was administered to 5,747 participants, with longitudinal collection in 2,290. A calibration sample of 1,000 subjects split into development and validation sets was used to generate three scales consistent with Rasch model expectations.
Results: The total Coping Index-MS (CI-MS-T), CI-MS-Internal (CI-MS-I) and CI-MS-External (CI-MS-E) cover total, internal and externally-focused coping. All three scales are capable of interval-level measurement.
Trajectory analysis of 9,000 questionnaires showed two trajectories in CI-MS-T: Group 1 showed a low level of coping with slight decline over 40 months while Group 2 had a better and stable level of coping due to improving CI-MS-Internal which compensated for the deteriorating CI-MS-External over time. CI-MS-Total<30 identified group membership at baseline.
Conclusion: The CI-MS-Total, CI-MS-Internal and CI-MS-External, comprising 20 items, provide interval-level measurement and are free-for-use in not-for-profit settings.

Original language	English
Pages (from-to)	2274-2284
Number of pages	11
Journal	Multiple Sclerosis
Volume	28
Issue number	14
Early online date	24 Aug 2022
DOIs	https://doi.org/10.1177/13524585221114004
Publication status	Published - Dec 2022

Keywords

coping, multiple sclerosis, Patient Reported Outcome Measure, Rasch, TONiC study, trajectory

Access to Document

10.1177/13524585221114004

Accepted ManuscriptAccepted author manuscript, 82.6 KB

Cite this

Young, C. A., MIlls, RJ., Langdon, D., Rog, D., Sharrack, B., Kalra, S., Majeed, T., Footit, D., Harrower, T., Nicholas, R., Ford, H., Woolmore, J., Johnstone, C., Thorpe, J., Paling, D., Ellis, C., Hanneman, C. O., & Tennant, A. (2022). Measuring coping in Multiple Sclerosis: The Coping Index-MS. Multiple Sclerosis, 28(14), 2274-2284. https://doi.org/10.1177/13524585221114004

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title = "Measuring coping in Multiple Sclerosis: The Coping Index-MS",

abstract = "Background: Coping in MS refers to cognitive and behavioural efforts to manage stresses imposed by the illness. Existing generic and disease-specific coping scales do not meet modern guidelines for scale development, and/or cannot produce interval-level metrics to allow for change scores.Objective: To develop a brief patient-reported outcome measure for coping in MS, capable of interval-level measurement. Methods: Qualitative work in 43 people with MS lead to a draft scale which was administered to 5,747 participants, with longitudinal collection in 2,290. A calibration sample of 1,000 subjects split into development and validation sets was used to generate three scales consistent with Rasch model expectations.Results: The total Coping Index-MS (CI-MS-T), CI-MS-Internal (CI-MS-I) and CI-MS-External (CI-MS-E) cover total, internal and externally-focused coping. All three scales are capable of interval-level measurement. Trajectory analysis of 9,000 questionnaires showed two trajectories in CI-MS-T: Group 1 showed a low level of coping with slight decline over 40 months while Group 2 had a better and stable level of coping due to improving CI-MS-Internal which compensated for the deteriorating CI-MS-External over time. CI-MS-Total<30 identified group membership at baseline.Conclusion: The CI-MS-Total, CI-MS-Internal and CI-MS-External, comprising 20 items, provide interval-level measurement and are free-for-use in not-for-profit settings. ",

keywords = "coping, multiple sclerosis, Patient Reported Outcome Measure, Rasch, TONiC study, trajectory",

author = "Young, {Carolyn A} and RJ MIlls and Dawn Langdon and D Rog and B Sharrack and S Kalra and T Majeed and D Footit and T Harrower and R Nicholas and Helen Ford and John Woolmore and C Johnstone and J Thorpe and D Paling and C Ellis and Hanneman, {C. O.} and Alan Tennant",

year = "2022",

month = dec,

doi = "10.1177/13524585221114004",

language = "English",

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pages = "2274--2284",

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T1 - Measuring coping in Multiple Sclerosis

T2 - The Coping Index-MS

AU - Young, Carolyn A

AU - MIlls, RJ

AU - Langdon, Dawn

AU - Rog, D

AU - Sharrack, B

AU - Kalra, S

AU - Majeed, T

AU - Footit, D

AU - Harrower, T

AU - Nicholas, R

AU - Ford, Helen

AU - Woolmore, John

AU - Johnstone, C

AU - Thorpe, J

AU - Paling, D

AU - Ellis, C

AU - Hanneman, C. O.

AU - Tennant, Alan

PY - 2022/12

Y1 - 2022/12

N2 - Background: Coping in MS refers to cognitive and behavioural efforts to manage stresses imposed by the illness. Existing generic and disease-specific coping scales do not meet modern guidelines for scale development, and/or cannot produce interval-level metrics to allow for change scores.Objective: To develop a brief patient-reported outcome measure for coping in MS, capable of interval-level measurement. Methods: Qualitative work in 43 people with MS lead to a draft scale which was administered to 5,747 participants, with longitudinal collection in 2,290. A calibration sample of 1,000 subjects split into development and validation sets was used to generate three scales consistent with Rasch model expectations.Results: The total Coping Index-MS (CI-MS-T), CI-MS-Internal (CI-MS-I) and CI-MS-External (CI-MS-E) cover total, internal and externally-focused coping. All three scales are capable of interval-level measurement. Trajectory analysis of 9,000 questionnaires showed two trajectories in CI-MS-T: Group 1 showed a low level of coping with slight decline over 40 months while Group 2 had a better and stable level of coping due to improving CI-MS-Internal which compensated for the deteriorating CI-MS-External over time. CI-MS-Total<30 identified group membership at baseline.Conclusion: The CI-MS-Total, CI-MS-Internal and CI-MS-External, comprising 20 items, provide interval-level measurement and are free-for-use in not-for-profit settings.

AB - Background: Coping in MS refers to cognitive and behavioural efforts to manage stresses imposed by the illness. Existing generic and disease-specific coping scales do not meet modern guidelines for scale development, and/or cannot produce interval-level metrics to allow for change scores.Objective: To develop a brief patient-reported outcome measure for coping in MS, capable of interval-level measurement. Methods: Qualitative work in 43 people with MS lead to a draft scale which was administered to 5,747 participants, with longitudinal collection in 2,290. A calibration sample of 1,000 subjects split into development and validation sets was used to generate three scales consistent with Rasch model expectations.Results: The total Coping Index-MS (CI-MS-T), CI-MS-Internal (CI-MS-I) and CI-MS-External (CI-MS-E) cover total, internal and externally-focused coping. All three scales are capable of interval-level measurement. Trajectory analysis of 9,000 questionnaires showed two trajectories in CI-MS-T: Group 1 showed a low level of coping with slight decline over 40 months while Group 2 had a better and stable level of coping due to improving CI-MS-Internal which compensated for the deteriorating CI-MS-External over time. CI-MS-Total<30 identified group membership at baseline.Conclusion: The CI-MS-Total, CI-MS-Internal and CI-MS-External, comprising 20 items, provide interval-level measurement and are free-for-use in not-for-profit settings.

KW - coping, multiple sclerosis, Patient Reported Outcome Measure, Rasch, TONiC study, trajectory

U2 - 10.1177/13524585221114004

DO - 10.1177/13524585221114004

M3 - Article

SN - 1352-4585

VL - 28

SP - 2274

EP - 2284

JO - Multiple Sclerosis

JF - Multiple Sclerosis

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ER -