Frontiers in Neurology (Aug 2019)

Conversion to Secondary Progressive Multiple Sclerosis: Patient Awareness and Needs. Results From an Online Survey in Italy and Germany

  • Alessandra Solari,
  • Ambra Mara Giovannetti,
  • Ambra Mara Giovannetti,
  • Andrea Giordano,
  • Andrea Giordano,
  • Carla Tortorella,
  • Valentina Torri Clerici,
  • Giampaolo Brichetto,
  • Giampaolo Brichetto,
  • Franco Granella,
  • Alessandra Lugaresi,
  • Alessandra Lugaresi,
  • Francesco Patti,
  • Francesco Patti,
  • Marco Salvetti,
  • Marco Salvetti,
  • Ilaria Pesci,
  • Eugenio Pucci,
  • Diego Centonze,
  • Diego Centonze,
  • Maura Chiara Danni,
  • Simona Bonavita,
  • Diana Ferraro,
  • Antonio Gallo,
  • Alberto Gajofatto,
  • Viviana Nociti,
  • Luigi Grimaldi,
  • Monica Grobberio,
  • Roberta Lanzillo,
  • Rachele Di Giovanni,
  • Silvia Gregori,
  • Alessia Manni,
  • Erika Pietrolongo,
  • Sarah Bertagnoli,
  • Marco Ronzoni,
  • Laura Compagnucci,
  • Roberta Fantozzi,
  • Beatrice Allegri,
  • Sebastiano Arena,
  • Sebastiano Arena,
  • Maria Chiara Buscarinu,
  • Loredana Sabattini,
  • Maria Esmeralda Quartuccio,
  • Elena Tsantes,
  • Paolo Confaloneri,
  • Andrea Tacchino,
  • Insa Schiffmann,
  • Insa Schiffmann,
  • Anne Christin Rahn,
  • Ingo Kleiter,
  • Michele Messmer Uccelli,
  • Anna Barabasch,
  • Christoph Heesen,
  • Christoph Heesen,
  • the ManTra Project

DOI
https://doi.org/10.3389/fneur.2019.00916
Journal volume & issue
Vol. 10

Abstract

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Background: Few studies have investigated the experiences of patients around the conversion to secondary progressive multiple sclerosis (SPMS). ManTra is a mixed-method, co-production research project conducted in Italy and Germany to develop an intervention for newly-diagnosed SPMS patients. In previous project actions, we identified the needs and experiences of patients converting to SPMS via literature review and qualitative research which involved key stakeholders.Aims: The online patient survey aimed to assess, on a larger and independent sample of recently-diagnosed SPMS patients: (a) the characteristics associated to patient awareness of SPMS conversion; (b) the experience of conversion; (c) importance and prioritization of the needs previously identified.Methods: Participants were consenting adults with SPMS since ≤5 years. The survey consisted of three sections: on general and clinical characteristics; on experience of SPMS diagnosis disclosure (aware participants only); and on importance and prioritization of 33 pre-specified needs.Results: Of 215 participants, those aware of their SPMS diagnosis were 57% in Italy vs. 77% in Germany (p = 0.004). In both countries, over 80% of aware participants received a SPMS diagnosis from the neurologist; satisfaction with SPMS disclosure was moderate to high. Nevertheless, 28–35% obtained second opinions, and 48–56% reported they did not receive any information on SPMS. Participants actively seeking further information were 63% in Germany vs. 31% in Italy (p < 0.001).Variables independently associated to patient awareness were geographic area (odds ratio, OR 0.32, 95% CI 0.13–0.78 for Central Italy; OR 0.21, 95% CI 0.08–0.58 for Southern Italy [vs. Germany]) and activity limitations (OR 7.80, 95% CI 1.47–41.37 for dependent vs. autonomous patients).All pre-specified needs were scored a lot or extremely important, and two prioritized needs were shared by Italian and German patients: “physiotherapy” and “active patient care involvement.” The other two differed across countries: “an individualized health care plan” and “information on social rights and policies” in Italy, and “psychological support” and “cognitive rehabilitation” in Germany.Conclusions: Around 40% of SPMS patients were not aware of their disease form indicating a need to improve patient-physician communication. Physiotherapy and active patient care involvement were prioritized in both countries.

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