Assessment of coping with muscular dystrophy: a methodological evaluation

Area of Science:

• Neurology
• Psychology
• Rehabilitation Medicine

Background:

• Limited research exists on adult coping mechanisms for muscular dystrophy (MD).
• Existing cancer-coping frameworks may offer transferable insights.

Purpose of the Study:

• To adapt established cancer coping scales for assessing coping in adults with MD.
• To identify and characterize specific emotion/appraisal-focused and problem-focused coping strategies used by adults with MD.

Main Methods:

• Modified the Reaction to the Diagnosis of Cancer Questionnaire (RDCQ) and Mental Adjustment to Cancer scale (MAC).
• Collected data from 60 adults (16-64 years) diagnosed with MD through interviews and questionnaires.
• Analyzed interview responses using RDCQ and MAC categories, developing new categories as needed.

Main Results:

• 82% of emotion/appraisal-focused coping responses aligned with RDCQ and MAC categories.
• Eight new coping categories were identified for MD: Anticipation, Creation of new life values, Minimization, Establishment of control over everyday life, Secretiveness, Fear, Social comparison, and Coping with heredity.
• 997 replies represented problem-focused coping, with good inter-rater agreement on category proportions (fair to good kappa values).

Conclusions:

• Cancer coping frameworks are largely applicable to understanding adult coping with muscular dystrophy.
• New, specific coping strategies for MD were identified, expanding existing models.
• This research provides a foundation for understanding and supporting adults with MD.