Systemic vasculitis information needs over time

This page is about:
  • Systemic vasculitis information needs
  • Information about systemic vasculitis from doctors and other healthcare professionals
  • Searching for information about systemic vasculitis on the internet
  • Gaps in information about systemic vasculitis

Systemic vasculitis information needs

People told us that they, their families and friends, and sometimes healthcare professionals need more information about vasculitis. However, they also told us they realised that not everyone wants the same amount of detail. Lynn likes to understand her vasculitis so she can get the best advice on managing it.

Lynn developed a heart problem with vasculitis. Contacting a specialist and sharing the reply with her consultant was “teamwork.”

Even people who liked information sometimes found there were things they didn’t want to know about. Although Charlie works in medical statistics, he decided not to look at data about vasculitis outcomes, feeling that “I was far happier not to know.”
People found different types of information useful. Claudia’s husband reads a lot about vasculitis – including research papers – and makes notes of questions to ask doctors. She finds it more helpful to learn by hearing and recognising “bits and bobs of your experience in other people.”

Charlie’s wife is writing a children’s story book about vasculitis. As a family they would have found this helpful after he was diagnosed.

People had a variety of reasons for wanting information. These included:
  • Information about what had happened to them
  • Information to help them get the most out of hospital appointments
  • Information to help them notice changes in their body.

The information in Angharad’s medical notes helped her understand what doctors had said and done before she was diagnosed with vasculitis.

Jane’s vasculitis was diagnosed after she had a cardiac arrest. It was important for her to find out who had saved her life, so she could thank them. Holly’s mother learns everything she can about vasculitis. This means that “when she comes to appointments with me, she can contribute as well, which is very helpful.” Gail kept a photographic record of herself through chemotherapy treatment because, “if you have got this kind of journey, you can see improvement, and if you don’t see improvement…then obviously there should be changes made.”

Information about systemic vasculitis from doctors and other healthcare professionals

When people were diagnosed with vasculitis, doctors were usually the first source of information. Charlie was given information leaflets produced by charities “that were clear on both the treatments and the condition itself,” but Nicky wasn’t given any. Mo – a nurse – wanted more detail, so looked up a medical reference book. Isabel didn’t need to look at the internet because she had enough information from “all the booklets I was given and all the sheets I got for the different medication.” Steve would have liked a ‘Hello newbie’ pack.

Vasculitis damaged Steve’s kidneys. Rather than “rules” about what he can’t eat or drink, he would have liked this information presented more accurately as a “series of possibilities.”

Although people continued to need information, they were very aware that doctors’ time is limited. Claudia said that learning more about vasculitis means she has more questions so needs more time with doctors. Isabel thinks she will wait for her next appointment to ask questions about her treatment as, “I could maybe phone up, but everybody’s busy.”

Isabella has questions about her vasculitis (“Churg-Strauss”) but finds appointments are short and focused on other things.

People who could get information including blood test results on the internet told us that this was helpful. As Steve explained, “you can see what’s happening and you can prepare yourself for the next clinic appointment.” Some people had access to other useful sources of information such as rheumatology helplines and specialist vasculitis nurses.
People noticed doctors had different approaches to sharing information. Nicola really likes her main consultant but he’s “very short on information. Has always been, gives you very little, and actually did say a couple of times to me, ‘I’m not going to tell you that just now.’” As vasculitis is a rare disease, Lynn noted that “sometimes you are going to see people that have less knowledge than you do.” We heard that people liked when doctors were open about what they didn’t know.
People mostly wanted information from their doctors that was personally relevant. This included the implications of their total steroid dose added up over time, how to know their vasculitis is relapsing, if they will need dialysis, whether a particular drug could have caused their vasculitis, and why prednisolone is considered more dangerous than other immunosuppressants.

Searching for information about systemic vasculitis on the internet

Before people were diagnosed with vasculitis, they and their family members had often used the internet to find out what might be wrong. Charlie, Gail and Isabella mentioned that vasculitis came up in searches. However, Steve used NHS websites, where each symptom was described as “in itself not terribly serious.” He feels frustrated that “nowhere does it say, ‘If you’ve got all of these…then there is something serious going on.’”
The people we spoke to had commonly not heard of vasculitis before. After their diagnosis, they used the internet to find out more about it. Some continued to use it as and when they needed other information.

Roberta uses the internet to find out more about vasculitis as “I just worry about everything.”

Karen found video clips online that made it easier to explain vasculitis to family and friends. Jeremy’s interest in educating himself about vasculitis comes from “the consequences of my failure to take any interest in health matters right up until I was 57, when I had the heart trouble.” While he relies on the internet, he is careful about the sources he uses.

Jeremy uses the internet to find out more about vasculitis so he can be “an informed patient.”

People often told us there are limitations to the information available online. Pete looked when he was first diagnosed with vasculitis but then “ignored it, because there’s so much nonsense on the internet.” Steve and Isabella felt online information could be out of date. Gail found that, “there wasn’t a lot of stories, and some of the stories that I did find, they weren’t really like me.” Charlie was surprised that it took “a lot of scrolling” through search results to find the most relevant websites, as this is not helpful for people who are newly diagnosed and worried.

Gaps in information about systemic vasculitis

We heard about a variety of gaps or problems with information about vasculitis. Richard and Gail found it unhelpful that information about timelines for recovery was sometimes unrealistic. Charlie is disappointed that he had to learn so much through personal experience, such as how to manage his life with a tracheostomy. Neither Charlie nor Salma felt they were given enough information about medication side effects.

Salma says doctors need more information about vasculitis treatment side effects so they can inform their patients.

Wendy wished she had been given information about self-management because “the critical thing about this is you’re not being a nuisance when you tell healthcare staff what’s going on for you. It’s actually really important you tell them, because you’re part of the team.” However, people could feel disappointed by doctors’ reactions when they told them what they were doing to self-manage.

Jane’s vasculitis caused kidney damage. She’s had conflicting information about whether diet can help.

Dawn told doctors what she had done to help her come off steroids “because I thought it could help others,” but “they were never interested, they’d just say, ‘oh well, whatever works for you.’”
Some people were curious about more general unanswered vasculitis questions. These included what causes vasculitis, does vasculitis run in families, and is vasculitis more common in some places or in some types of people. We also had more than a few discussions about the difficult language around vasculitis, including how to say words such as Behçet’s (a type of vasculitis) and tocilizumab (a biologic immunosuppressant).