Measurement of participation in myotonic dystrophy: reliability of the LIFE-H.
Person-perceived social participation is an important aspect to measure in rehabilitation in neuromuscular disorders. The objective was to document the test-retest and inter-rater reliability of the Assessment of Life Habits (LIFE-H), in a sample of individuals with myotonic dystrophy (DM1). Twenty-eight participants with myotonic dystrophy aged between 29 and 75 years (mean: 52.7) were recruited. The LIFE-H questionnaire was administered at three different occasions. The LIFE-H demonstrates high test-retest and inter-rater reliability (ICCs: 0.80-0.92) for the total score and subscores (daily activities and social roles). Moderate to high test-retest reliability (ICCs: 0.76-0.92) was found for most categories (8/10) of the LIFE-H. Similar results were obtained for inter-rater reliability (ICCs: 0.68-0.93). Moderate to high agreement using the Bland and Altman method was obtained for most categories. The LIFE-H, a measure of person-perceived social participation, demonstrates adequate test-retest and inter-rater reliability for clinical and research purposes in myotonic dystrophy.
Gagnon
Cynthia
C
Centre for Interdisciplinary Rehabilitation and Social Integration, Rehabilitation Institute of Quebec City, Que., Canada. cynthia.gagnon.1@ulaval.ca
Mathieu
Jean
J
Noreau
Luc
L
D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D004185:Disability Evaluation; D005260:Female; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D008875:Middle Aged; D009223:Myotonic Dystrophy / Q000503:physiopathology / Q000523:psychology* / Q000534:rehabilitation*; D015588:Observer Variation; D015203:Reproducibility of Results; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires