Ulla Werlauff Methods to assess physical functioning - Danske ...

PATIENTS AND METHODS
Study I and II are cross-sectional studies. Study III is a retrospective study on longitudinal data.
Study IV is a mixed- method study on validity of the Fatigue Severity Scale. Validity was evaluated
by statistic analyses and focus group interviews.
Study I describes the applicability of standard assessment methods to characterize physical function
primarily at impairment level. Study II describes the ability of clinical methods to reflect capacity
and capability at impairment and activity level. Study III describes the sensitivity of clinical
methods to register loss of muscle strength at impairment and activity level. Study IV evaluates the
ability of a questionnaire to reflect impact of fatigue on levels of activity and participation.
Criteria for inclusion in study I, II, and III were that the patients;
had a genetically confirmed diagnosis of spinal muscular atrophy
had a clinical diagnosis of SMA type II (study I, II and III ) and SMA III (study III) based
on the established diagnostic criteria [Munsat 1997]
were ≥ five years of age at time of first examination
Criteria for inclusion in study IV were that patients:
were diagnosed with a congenital myopathy based on muscle biopsy and/or molecular
diagnosis
were diagnosed with SMA II based on clinical and genetic findings
were ≥ eighteen years of age
Study I
The total Danish population of 67 patients with SMA II, registered with the Danish National
Rehabilitation Centre for Neuromuscular Diseases in august 2007, were invited to participate in this
study. Data were obtained from 54 participants (21 females, 33 males) aged 5 – 70 years. All
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