The diagnostic experience for people with MND and their caregivers in the U.K

Abstract

Objective: How an MND diagnosis is communicated has implications for how individuals adapt to their illness. The consultation process with the neurologist, diagnosis delivery, and adherence to UK guidelines, were explored from the perspectives of people diagnosed with MND and family caregivers.

Methods: A cross-sectional approach with people with MND and their caregivers in UK. An anonymous online survey, based on the SPIKES protocol for delivering bad news and containing questions focusing on the UK NICE MND guideline, was distributed in 2018-19.

Results: 69 people with MND and 39 caregivers responded. People with MND were more likely than caregivers to rate highly their neurologist's skills and ability and their satisfaction with delivery of the diagnosis. The amount of time spent with the neurologist at diagnosis had an impact on the level of satisfaction and rating of the neurologist's skills and abilities. The SPIKES criteria were generally not met. Many of the NICE MND guideline recommendations were not met, though adherence was greater in MND Centres.

Conclusions: While there is evidence of satisfaction with the delivery of the diagnosis amongst people with MND and caregivers, there is room for improvement. There is a need for greater awareness of the requirements of people with MND and caregivers. There is also a need to raise awareness of the NICE MND guideline and ensure adequate training, time and funding to ensure communication at this difficult time is acceptable and effective. Where possible it would be preferable for referrals to be made to MND centres.

Keywords: Caregivers; Diagnosis; MND; NICE MND Guideline; Online survey; People with MND.