title: Experiences and reflections of patients with motor neuron disease on breaking the news in a two-tiered appointment: a qualitative study.
abstract: BACKGROUND
  Breaking bad news should be fine-tuned to the individual patient, contain intelligible information, include emotional support and offer a tailor-made treatment plan. To achieve this goal in motor neuron disease (MND), neurologists of the amyotrophic lateral sclerosis (ALS) centre Amsterdam deliver the message on 2 separate visits within 14 days.
  
  
  OBJECTIVE
  To evaluate how patients with MND react to and view disclosure of the diagnosis, in this 2-tiered approach.
  
  
  METHODS
  Non-participating observations and in-depth interviews with patients were conducted in 1 tertiary ALS referral centre. Qualitative analysis consisted of inductive analysis of observation reports and verbatim typed out interviews.
  
  
  RESULTS
  10 2-tiered appointments were observed and 21 Dutch patients with MND interviewed. They experienced the straightforward message to be suffering from a fatal disease as devastating, yet unavoidable. The prospect of a short-term second appointment offered structure for the period immediately following the diagnosis. The time between appointments provided the opportunity for a first reorientation on their changed perspective on their life. The second appointment allowed for detailed discussions about various aspects of MND and a tailor-made treatment plan.
  
  
  CONCLUSIONS
  The 2-tiered approach fits well with the way in which Dutch patients with MND process the disclosure of their diagnosis, gather information and handle the changed perspective on their life. It may serve as a model for other life-limiting diseases.
authors.affiliation: Department of Neurology, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands.|Section of Medical Ethics, Department of General Practice, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands.
authors.forename: Antje A
authors.initials: AA
authors.lastname: Seeber
authors.affiliation: Section of Medical Ethics, Department of General Practice, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands.
authors.forename: A Jeannette
authors.initials: AJ
authors.lastname: Pols
authors.affiliation: Department of Neurology, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands.
authors.forename: Albert
authors.initials: A
authors.lastname: Hijdra
authors.affiliation: Department of Rehabilitation, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands.
authors.forename: Hepke F
authors.initials: HF
authors.lastname: Grupstra
authors.affiliation: Section of Medical Ethics, Department of General Practice, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands.
authors.forename: Dick L
authors.initials: DL
authors.lastname: Willems
authors.affiliation: Department of Neurology, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands.
authors.forename: Marianne
authors.initials: M
authors.lastname: de Visser
mesh_terms: D000328:Adult; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000523:psychology; D001071:Appointments and Schedules; D001294:Attitude to Health; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D016472:Motor Neuron Disease / Q000523:psychology*; D009426:Netherlands; D010347:Patient Care Planning; D036301:Qualitative Research; D013997:Time Factors; D014342:Truth Disclosure
keywords: Communication; Neurological conditions; Quality of life; Supportive care