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@ARTICLE{Spittel:285032,
      author       = {Spittel, Susanne and Grehl, Torsten and Weydt, Patrick and
                      Kettemann, Dagmar and Fabian, Rachel and Rödiger,
                      Annekathrin and Smesny, Uta and Steinbach, Robert and Ilse,
                      Benjamin and Weyen, Ute and Petri, Susanne and Lumi, Rea and
                      Bjelica, Bogdan and Lingor, Paul and Grosskreutz, Julian and
                      Göricke, Bettina M and Pfeilschifter, Waltraud and Schmeja,
                      Wibke and Dorst, Johannes and Mensch, Alexander and Siebert,
                      Jürgen and Norden, Jenny and Bernsen, Sarah and
                      Subramanian, Senthil Kumar and Hildebrandt, Barbara and
                      Walter, Bertram and Münch, Christoph and Maier, André and
                      Meyer, Thomas},
      title        = {{D}extromethorphan/quinidine ({DMQ}) for reducing bulbar
                      symptoms in amyotrophic lateral sclerosis - assessment of
                      treatment experience in a multicenter study.},
      journal      = {Amyotrophic lateral sclerosis $\&$ frontotemporal
                      degeneration},
      volume       = {27},
      number       = {1-2},
      issn         = {2167-8421},
      address      = {Abingdon},
      publisher    = {Taylor Francis Group},
      reportid     = {DZNE-2026-00157},
      pages        = {185 - 197},
      year         = {2026},
      abstract     = {In amyotrophic lateral sclerosis (ALS),
                      dextromethorphan/quinidine (DMQ) has been reported to reduce
                      bulbar symptoms, including dysarthria and dysphagia.
                      However, data on patients' perceptions of DMQ treatment are
                      limited.Data on DMQ treatment were collected from 1065 ALS
                      patients treated at 13 ALS centers between 10-2015 and
                      06-2025. Patient-reported outcome measures (PROM) of 179
                      participants were remotely assessed via the 'ALS App'. PROM
                      included the self-explanatory version of the ALS Functional
                      Rating Scale (ALSFRS-R-SE), the Net Promoter Score (NPS);
                      and Treatment Satisfaction Questionnaire for Medication
                      (TSQM-9).Mean disease duration was 29.3 months (SD 38.1).
                      ALS progression before treatment was 0.82 points/month
                      (ALSFRS-R). Mean DMQ treatment duration was 8.4 months (SD
                      10.8), including $35.2\%$ (n = 374) of shorter (<3 months),
                      $35.3\%$ (n = 375) of longer (3-9 months), and $29.5\%$ (n =
                      313) of very long DMQ treatment (>9 months). Patients'
                      recommendation (n = 178) was positive (NPS: +23) with higher
                      scores after very long DMQ treatment (NPS +37) compared to
                      longer (NPS +15) and shorter treatment (NPS +7.5),
                      respectively. TSQM-9 scores (n = 163) demonstrated high
                      satisfaction for effectiveness 60.0 (SD 25.9), convenience
                      73.8 (SD 18.2), and global satisfaction 63.4 (SD 29.8).The
                      positive perception in PROM underscores the value of DMQ as
                      an individualized treatment option for bulbar symptoms in
                      ALS. However, shortage of clinical data, online assessment,
                      and selection biases are among the limitations of this study
                      that need to be addressed in further investigations.},
      keywords     = {Humans / Dextromethorphan: therapeutic use / Amyotrophic
                      Lateral Sclerosis: drug therapy / Amyotrophic Lateral
                      Sclerosis: complications / Male / Female / Middle Aged /
                      Quinidine: therapeutic use / Aged / Patient Reported Outcome
                      Measures / Drug Combinations / Treatment Outcome / Patient
                      Satisfaction / Adult / Amyotrophic lateral sclerosis (Other)
                      / bulbar symptoms (Other) / dextromethorphan/quinidine (DMQ)
                      (Other) / dysarthria (Other) / dysphagia (Other) /
                      patient-reported outcomes (Other) / Dextromethorphan (NLM
                      Chemicals) / Quinidine (NLM Chemicals) / dextromethorphan -
                      quinidine combination (NLM Chemicals) / Drug Combinations
                      (NLM Chemicals)},
      cin          = {Clinical Research (Bonn) / Clinical Study Center (Ulm)},
      ddc          = {610},
      cid          = {I:(DE-2719)1011001 / I:(DE-2719)5000077},
      pnm          = {353 - Clinical and Health Care Research (POF4-353)},
      pid          = {G:(DE-HGF)POF4-353},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:40932199},
      doi          = {10.1080/21678421.2025.2557932},
      url          = {https://pub.dzne.de/record/285032},
}