Evidence profile 23Timing, level of information and ways of communication

No. of studies and study designStudy sampleThemes that emerged
[Clarification: not all participants reported in the study sample had contributed to the themes]
Study limitationsIndirectness (transferability)Other considerations
1 × interview [HT]P&C = 46Patients and carers have different views on ‘how much’ and ‘when’ information should be given or discussed. This should be based on the individual and be person-centred.Overall comments:
  • Good quality.
  • Transferable to population addressed.
2 × interviews [H] [J]P&C = 64
Pr = 15

Total = 79
Healthcare professionals should aim to give/discuss information as soon as possible.Overall comments:
  • [H] Good quality.
  • [J] No report of data analysis and synthesis methods.
  • Both studies were transferable to population addressed.
1 × structured questionnaire (self-report) [B]Pr = 74Emphasised ‘staged discussion’.Overall comments:
  • Self-assessment bias (self-report using a pre-determined structured questionnaire).
  • Transferable to population addressed.
2 × interviews [BH] [J]P&C = 66Diagnosis and information should be communicated in a sensitive manner. For example, some common good points:
  • Truthful, directness, honesty, kindness, empathy.
  • Give opportunity for patients and carers to ask questions.
Overall comments
  • [BH] Good quality.
  • [J] No report data of analysis and synthesis methods.
  • Both studies were transferable to population addressed.

P&C, patients and carers; Pr, professionals

[HT] = www​.healthtalkonline.org (formerly DIPEX): UK study, regular updates; patients and carers.

[H] = Hughes et al. (2005): UK study; patients, carers and professionals.

[J] = Johnston et al. (1996): UK study; patients only

[B] = Borasio et al. (2001): European study (European ALS Research Group); professionals only.

[BH] = Bolmsjö and Hermérn (2003): Swedish study; carers only.

From: 2, How this guideline was developed

Cover of Motor Neurone Disease
Motor Neurone Disease: The Use of Non-Invasive Ventilation in the Management of Motor Neurone Disease [Internet].
NICE Clinical Guidelines, No. 105.
Centre for Clinical Practice at NICE (UK).
Copyright © 2010, National Institute for Health and Clinical Excellence.

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