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

Area of Science:

• Neurology
• Psychology
• Rehabilitation Medicine

Background:

• Amyotrophic Lateral Sclerosis/Motor Neuron Disease (ALS/MND) presents significant coping challenges for patients due to its progressive and terminal nature.
• Existing coping scales may lack the psychometric properties for valid parametric analysis or simplicity for patient completion and clinical scoring.

Purpose of the Study:

• To enhance the psychometric properties of a previously developed MND-Coping Scale for Amyotrophic Lateral Sclerosis/Motor Neuron Disease (ALS/MND).
• To develop a simpler, more valid measure for assessing patient coping mechanisms in ALS/MND, suitable for parametric analysis.

Main Methods:

• A new qualitative analysis of 26 ALS/MND patients informed the draft Coping Index-ALS (CI-ALS).
• The CI-ALS was administered to 465 ALS/MND patients alongside established scales (COPE-60, General Perceived Self Efficacy, WHOQOL-BREF).
• Rasch modeling assessed CI-ALS validity, with external validity confirmed against comparator measures.

Main Results:

• The 21-item CI-ALS, comprising 'coping by self' and 'coping with others' subscales, demonstrated Rasch model fit and invariance across demographic factors.
• Correlations with comparator scales supported the external validity of the CI-ALS.
• A nomogram is available for converting raw scores to interval-level measures for parametric analysis.

Conclusions:

• The CI-ALS provides a simple, psychometrically sound 21-item self-report measure for assessing coping in ALS/MND.
• This tool enables clinicians to identify patients with inadequate coping strategies.
• The CI-ALS facilitates research into interventions aimed at enhancing coping skills in individuals with ALS/MND.