For some people, it might sound like Christmas has come early: all those long slogs to hospital, twiddling your thumbs in busy waiting areas, more waiting in clinic, just to have a couple of checks, a quick conversation and to be told something that could have taken five minutes on the phone – a thing of the past!
For others, the idea that a chat on the phone could ever be as good as being at clinic, with your CF team able to see you in the flesh, is ridiculous and maybe even worrying.
So when NICE published its CF guidelines yesterday with the headline “People with cystic fibrosis could be monitored through phone or video messaging”, I imagine many who saw it thought: really?
Skyping, Facetiming, a whatsapp video call can all be a super easy way to get in touch and see someone’s face – it feels more personal and engaging than the humble telephone call – perhaps especially for the generations who have grown up with the tech at their fingertips.
But a video call with your CF team? Can they get all the information they need? Will you feel comfortable sharing how you’ve been?
The reality is that the NICE guideline is very careful about describing the circumstances in which ‘telemedicine’ or ‘remote monitoring’ would be a good approach – and it’s very much based on your CF team’s best judgement and what you prefer as a patient.
Generally – if you need certain tests or are not feeling great – a normal clinic with your CF team will be the only option.
But with so many upsides to being able to check in with your team from the comfort of your own home – from avoiding the long travel to avoiding that person in the waiting room who you think might have CF – can we do more to make remote monitoring as good and as safe as a clinic in person?
Can we do more to make it even better?
One of the Cystic Fibrosis Trust’s Flagship Projects is SmartCareCF – and from it’s very beginnings it has looked to go further than making the care you receive now more convenient. SmartCareCF is using technology to explore how CF care can be made better, more effective and safer.
Through the research we’ve been funding, we have been asking whether it is possible to better understand and predict when it is most useful for somebody to see their CF team. What might suggest that somebody is about to become poorly and needs clinical advice? What role does your activity level or the frequency of your cough play in understanding your health? If we can see early signs off an infection flare up, can we treat it earlier? And – crucially – how can we measure all of this?
We have funded two ‘feasibility’ studies that have put this technology in the hands of people with CF. ‘Feasibility’ studies are tests that help us to understand if the way we are approaching a challenge is actually something which will work in the real world – and importantly, whether people with CF want to be part of it.
The first was led by Professor Andres Floto at the Papworth Hospital, in Cambridge and 150 adults with CF across five different centres took part. The results of this study are currently being analysed so keep an eye out for the results.
The second – known as CLIMB-CF and focussing on tech in paediatric care – is being led by Professor Jane Davies at the Royal Brompton Hospital in London and eight centres from across the UK, and two in Canada, are taking part.
The studies are enabling people to choose to monitor their breathing, activity and weight at home and upload it via an app on their phone to make it available to their CF team, and to review their measures themselves.
This would enable significantly more data to be available for people with CF and their teams to review: to check on trends in their health and investigate why and when problems occur – and perhaps even to predict and help avoid problems before the occur.
From a survey conducted as part of our feasibility study with adults with CF we learned that the majority of participants felt that home monitoring made them better able to manage their health, made no change to their anxiety levels, and improved their quality of life.
Whilst anxiety levels were increased in some participants, the vast majority of people found home-monitoring helpful or very helpful, and felt better able to manage their condition as a result of it.
Monitoring your health closely clearly draws more attention to health fluctuations. Some participants in the study found this helpful – for example one told us that noticing a decline in lung function meant she could react by doing more physiotherapy that week to get it back up again. For others, this was demotivating and a source of anxiety.
We know there is plenty more work to be done to get this balance right.
CF never has been and never will be a one-size-fits-all condition – and we will continue to be careful and methodical in the way we develop this research, until we can be confident that it is ready to be used in routine care.
The NICE Guidelines for CF give us more confidence that we’re exploring something that could revolutionise care in the coming years and make care better for everyone.
So, no, we’re not ready to wave goodbye to our routine hospital visits yet but through our SmartCareCF programme we hope that in 10 years’ time you’ll only have to go to the hospital when you need to – giving you more time to spend how you want to: living your life.
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