Understanding living with tracheostomy ventilation (TV) for Motor Neurone Disease (MND) and the implications for quality of life

This study will explore patient, family and healthcare professional experiences of using tracheostomy ventilation (TV) to support breathing for people with Motor Neurone Disease (MND).

Tracheostomy ventilation is not often used by people with MND in the UK. Rates of TV are much higher In Japan, Italy, Spain, and the United States. The reasons for this are not clear and have not been explored. TV is not covered in the NICE guidance which supports the care of patients with MND in the UK.

To better understand what it is like to live with TV, we want to speak to people with MND who have TV and family members and health professionals involved in their care.

We will use interviews to allow participants to ‘talk’ to us in whatever way they prefer, such as by telephone or video call, or in emails or other forms of text messaging.

We want to understand:

• how people make decisions about the use of TV
• any differences between choosing to have TV in advance and having TV placed in an emergency
• the impact of TV on daily life for people with MND and their family members

There are two parts to the study; you can choose which part is best for you.

Part 1

We will ask a small number of people with MND who use TV and their families to share their experiences of daily living. We will ask participants to take part in an initial interview and in one or more shorter interviews over the next six months. We will also invite participants to ‘show’ us aspects of their daily lives by taking photographs, and by helping to draw relationships maps of the key people involved in their care.

Participant information sheets

• Person with MND who uses TV - part 1
• Family member - part 1

Part 2

We will ask people with MND who use TV and family members (including bereaved family members) to take part in a single interview to gather information on broader experiences and issues relating to the use of TV, such as the decision-making process and patient choice.

Participant information sheets

• Person with MND who uses TV - part 2
• Family member - part 2

By speaking to those who have experience of living with TV we will be able to better understand what is involved and the impact on patients and families. A primary objective of the study is to inform a new element of the MND section on HealthTalk focused on TV.

Other outcomes will include updated information for patients and families, alongside a contribution to national guidance, future commissioning, and training for health professionals. For those suitable for TV, better understanding may enable greater choice about their future treatment and care.