Seeking information on inherited MND

People have different approaches to and experiences of seeking information around inherited MND. We spoke to people about:

  • Approaches to seeking information: from wanting to know everything to not wanting to know too much
  • Views on information about inherited MND
  • What information about inherited MND would be helpful

Approaches to seeking information: from wanting to know everything to not wanting to know too much

What information people want and need on inherited MND (including areas such as genetics  and research) is specific to their personal situation and approach. Some people we spoke to wanted to know as much as possible.

Finding out about the C9orf72 genetic variant in her family enabled Lillian to search for scientific papers. Learning as much as possible is “the way my mind works”.

Family members sometimes had different approaches to how much they wanted to know. Helen, whose husband doesn’t know if he carries the C9orf72 gene variant in his family, found it helpful to learn about inherited MND. She said, “even if my husband doesn’t want to know any more about it necessarily, I find it really useful knowing as much as I can… if I ever end up in that situation where I have to be a carer, [it] will help me to stay calm and deal with it”.

David, who is living with MND, is active in keeping up with research around the disease. In his experience, patients are sometimes more knowledgeable than healthcare professionals, which can be “empowering or very frustrating”. Having seen other family members living with MND before her own diagnosis, Liz X points out; “I can’t electively choose not to know…I already know too much”.

Other people didn’t have time to do lots of research or felt this wasn’t how they wanted to spend their time.

Adam thinks that once you know the facts about inherited MND, it doesn’t really help to keep looking up information. For him, it’s more important to “live in the now”.

Louisa tried not to “overload my head” with information on inherited MND when she first found out about her mum’s diagnosis. Since then, she has sometimes found herself “perusing” online, but normally life is too busy. Hugh, who has MND, said, “I don’t want my entire life to be taken up with researching MND”.

One reason why some people didn’t want to look for information was because they didn’t see it as relevant at present, either because a gene hadn’t been identified in their family, or because no one in the family was currently affected. For JW, whose wife died of MND and whose children had an increased chance of developing the disease, “there’s not much point in looking too much”, given there is currently no way to stop or prevent the disease. As she has no control over it, Georgia Y didn’t think reading lots would be a “good use of my time and energy”.

Given there is no cure, Georgia Y feels that knowing more about inherited MND would “really scare me”. It’s not something she wants to worry about at the moment.

Like Georgia, other people also found it scary to think about. Robyn said, “I’ve got a bad enough health anxiety and just general anxiety as it is anyway”. Kirsty said, “Normally I am somebody who would go and look these things up and want to find out more, but I think maybe I was probably a bit scared of what I might find out”.

It took Richard some time to get into a “positive headspace” in managing his thoughts around inherited MND; now that he is there, he is reluctant to do anything that might unsettle that.

Occasionally people felt that spending a lot of time online had been harmful to their well-being. Mary stopped looking at online forums when she found herself getting a bit “obsessed”. Looking back, Kelly thinks it would have been better to talk to a healthcare professional than keep reading about inherited MND on the internet, which was “gut wrenching”. Lizbeth values having direct contact with healthcare professionals and asks the neurology team she is in contact with when she has questions, which is better for her than going “down a rabbit hole” online.

In the past, Lizbeth spent too much time searching for information online. It’s important to know where to look, because “at 4 o’clock in the morning… it all looks like a possibility”.

Some people felt they knew enough about inherited MND. Harriet said, “I’ve not been hugely interested in reading absolutely everything about it… I know all too clearly what it looks like if it develops… I don’t feel like I want to know anything more just yet. I can see that changing”.

Paul also pointed out that people’s information needs may change over time.

Paul wouldn’t have wanted lots of information on inherited MND when his mum was unwell; it would have been “swallowed” by his focus on supporting her.

Other people spoke about wanting to know more at specific points, for example after receiving a positive pre-symptomatic genetic test result, or after a family member with MND died.

Robyn emphasised that it is important for people to take the approach that is best for them, “If you want to educate yourself educate yourself, if you want to bury your head in the sand bury your head in the sand”.

Views on information about inherited MND

People found information from a variety of sources, including:

  • The MND Association and MND Scotland websites and resources, as well as other MND-related websites.
  • Scientific papers
  • Symposiums and conferences
  • Information days for families
  • Healthcare professionals including neurologists, research nurses, genetic counsellors and geneticists
  • Researchers (through involvement in research studies)
  • Social media, social media groups and online forums
  • Family members and other friends or acquaintances

People found certain websites helpful in providing accessible information that met their needs, particularly those provided by the national MND charities. However, Kelly feels the internet presents a “worst-case scenario”, and others described things they had read as “scary” or sensationalised. Adam found some websites cold, “there’s black and white information, there’s nothing else, there’s no feeling to anything MND… there’s no warmth to anything: diagnosis, symptom management, support systems, anything”.

Searching for information could be intimidating and hard to navigate. It could be difficult to read and understand, particularly scientific jargon or information on genetics. Some people described “skimming over the surface” when they found things they couldn’t understand, and others stopped reading or didn’t start in the first place.

Kirsty didn’t do lots of research on inherited MND at first; she didn’t feel it was a good idea as she wasn’t sure she would be able to understand it fully. David’s approach was to write down words he didn’t understand and look them up, or ask questions to people he knew. Calum went from knowing nothing about inherited MND to reading 60-page journal articles. A lot of what he read was “gobbledygook”, and he feels the quality of what he learnt wasn’t good until he saw a genetic counsellor.

Reading about inherited MND can be “confusing”. Some of the information Calum read made him question things he has been told, and he isn’t sure he gains anything from knowing.

Angi said, “I had a look and I thought, ‘What’s the point?  I’ll just wait and see’. It’s pointless getting bamboozled with everything”. Another person wasn’t sure how to assess whether what they were reading online was correct and legitimate.

What information about inherited MND would be helpful

People generally wanted information that was accessible, informative, and balanced. Some felt that the information available met their needs, or they didn’t need to know more at present. Others suggested areas where they had a need for further information. This included around the genetics of MND; the latest research (suggestions included scientific articles written in accessible language and overview articles); research opportunities; genetic counselling and testing (including on next steps after pre-symptomatic genetic testing and on post-test support); managing the emotional impact of living with genetic risk; insurance implications; and caregiving. People wanted:

  • A single place for finding reliable and useful information that is quality controlled and regularly updated
  • Accessible information written for the public. Information should be pitched at the appropriate level so it can be read by people without a scientific background. However, some people might want more detailed information too.
  • Opportunities to seek information face to face
  • Written/ recorded information to take away, for example after meetings with healthcare professionals. Some people felt this would be helpful when sharing information with family members.
  • Opportunities to hear from others in a similar situation
  • Information that comes to you, such as through mailing lists

Kelly would like to see more positive information on living with MND, and specific to inherited forms, so people know that their life is not over, and they can still achieve their goals.

Other people talked about the kind of information and support that would be helpful in messages to healthcare professionals around inherited MND.

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