Although symptomatic medicines constitute an important intervention in amyotrophic lateral sclerosis (ALS), few systematic investigations into drug management have been reported so far.1 Furthermore, symptomatic pharmacotherapy is constantly evolving with an increasing number of drugs being used. Therefore, more detailed information on drug prescription must be obtained to monitor the current standards of care, identify potential shortcomings in drug management and elucidate progress in symptomatic pharmacotherapy. Thus, the aims of the present study were to (i) identify the spectrum of symptomatic drugs; (ii) rank symptomatic drugs according to their frequency of use; (iii) assign symptomatic drugs to pharmacological domains and (iv) determine the number of symptomatic drugs per patient. We hypothesised that the pharmacological spectrum and frequency of use range widely. Furthermore, we supposed that symptomatic drug treatment may vary substantially among patients with ALS and may be highly personalised.
A prospective, multicentre, cross-sectional observational study was conducted. The participants met the following criteria: (1) diagnosis of ALS2; (2) one or more ALS-related drug prescriptions; (3) participation in a case management programme for ALS medication; (4) consent to data capture using a digital research platform.3 The cohort encompassed patients who had received treatment at nine specialised ALS centres in Germany between July 2013 and December 2019. Participant’s demographic and clinical data are summarised in figure 1A. Detailed methods and the setting of the study are listed in the online supplementary file 1.
### Supplementary data
[jnnp-2020-322938supp001.pdf]
Figure 1
(A) Characteristics of the study participants. (B) Assignment of symptomatic drugs to pharmacologic domains and ranking according to the frequency of use. The number and percentage of patients is shown who received the drug during the course of ALS treatment. Symptomatic drugs were assorted the leading domains of symptomatic drugs: (1) anticholinergic drugs: pirenzepine, ipratropium bromide, amitriptyline, atropine, scopolamine, bornaprine, …