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The interview study was carried out in the period September-December 2007. The interviews took place at Musholm Bugt Feriecenter or at RehabiliteringsCenter for Muskelsvind.
At the time of the study, a total of 37 patients with SMA type II in the age group 18 years and up were registered at RCfM. 29 of the 37 patients agreed to participate in the study.
The majority of patients with SMA II in Denmark become affiliated with RehabiliteringsCenter for Muskelsvind. In comparison with foreign statistics, it is unusual that almost all patients with a diagnosis are registered at the same centre. The study is therefore highly representative.
The interviews were carried out by four employees from RehabiliteringsCenter for Muskelsvind. They worked in pairs – one person asked the questions while the other person recorded the answers. An interview would typically last about 90 minutes.
The interview consisted of a series of closed questions eliciting a ‘yes’ or ‘no’ or ‘don’t know’ answer along with questions which were answered on a scale from 0-10. Finally, there were open questions which invited more elaborate answers.
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