Move more, live better: How home-based exercise can help people with PH

Working with the National Pulmonary Hypertension Unit at the Mater Hospital in Dublin, Clinical Exercise Physiologist Dr Ciara McCormack led an important study to test how safe home-based exercise programmes are for people with PH. The results provide further evidence that moving more can improve quality of life, as Dr McCormack explains over the page…

About the study

The trial involved recruiting 20 people with stable pulmonary hypertension to take part in home-based exercise programmes designed by Dr McCormack. Each participant was provided with a stationary exercise bike, a Fitbit watch, and logbooks to track their exercise. At the start, they were asked to perform six-minute walk tests and sit-to-stand tests via video link, to assess their baseline fitness level. Exercise programmes were then developed for them as individuals.

Activities involved aerobic exercise using the indoor bike (and walking outside if desired), plus strength and resistance exercises such as sit-to-stand repetitions. They were given respiratory (breathing) exercises too.

Participants were able to follow online exercise videos and they had one-to-one health coaching sessions with Dr McCormack via video-link.

The programme lasted for ten weeks, and participants were asked to complete six-minute walk tests and sit-to-stand tests again at the end. They also completed the EmPHasis-10 quality of life questionnaire at the beginning and the end, so that changes in both physical fitness and quality of life could be measured.

Can you tell us more about what you set out to do with this research?

“The ultimate aim was to assess how safe and effective home-based exercise programmes are for people with pulmonary hypertension. I’d visited a major exercise trial in Germany a few years ago, where patients stayed in a hotel and did everything in-person, but this was about taking things out of the clinic and bringing the programmes to patients at home.

As part of the planning, I carried out an extensive literature review to understand the difference between inpatient and home-based delivery, and what barriers there may be. I also carried out many interviews with patients to understand their exercise knowledge and experience, and how they felt about it.

It was important to me that the trial was patient-centred, and that it was underpinned by behavioural change techniques.”

Your study coincided with the onset of the COVID-19 pandemic. Can you tell us what that meant for the programme?

“Whilst the majority of the programme was always going to be home-based, the initial plan was to bring patients into the National Pulmonary Hypertension Unit for face-to-face assessments and induction sessions. This would have given them the opportunity to meet each other too, but because of what was going on, we ended up completing the trial completely remotely.

We did the assessments remotely, and used apps and phone calls, and delivered programme materials via the post.

In some ways, the timing worked well for participants. Patients who lived on their own found it really nice to have someone to talk to via the coaching sessions, during that particularly tough time.”

Can you sum up the key findings?

“The study showed that the home-based exercise programmes were safe and there were no adverse effects. There was nothing to report in terms of patients experiencing any severe symptoms during the trial, which was our key outcome to take away. In terms of feasibility, we looked at the demand – how many patients signed up to and then stuck with the programme, how many engaged with their coaching sessions, and how many adhered to their exercise plan. All but one of the participants completed the ten-week programme, and 94% adhered to the exercise plans, so the retention and adherence rates were both really high. We also collected a number of outcome measures to look for improvements in fitness levels, quality of life, fatigue, and attitudes towards exercise.

We saw significant improvements in all these things across the board, which was an extra bonus. Participants increased their light intensity physical activity (which might be a very low intensity walk around the house) by almost 17%. And they improved their moderate intensity activity (for example, a brisk walk) by 154%. This was all in just ten weeks!

The takeaway from this is that it is safe and achievable for people with PH to work at that moderate intensity level.

It’s really positive that patients were able to improve so much by following a home-based programme in their own time.”

The findings clearly show physical improvement in terms of fitness. Did quality of life improve too?

“When I spoke to patients about their thoughts on completing the exercise programme, the big thing that came back was how it was something that took away from the burden of living with PH because it was something they could do for themselves. It was an opportunity for them to do something to improve their own lifestyle, and to be in control, and they really liked that. For some, their goal was to be able to hoover their own living room. For others, it was to be able to go out for a walk. They wanted to achieve these things, and they did.”

“The programme has shown me that my body is capable of a lot more than I ever thought. In all my years living with PH I have never felt this in control, or this confident in my body… The benefits of exercise should be told to patients from onset of diagnosis, instead of them living in fear of being active. Although my PH is incurable, this programme has offered me a new lease of life that I will be forever grateful for.”

Feedback from a study participant

What other feedback did you receive about the experiences of exercising?

“It was important to the participants that the person supporting them through the programme was knowledgeable about PH, and that they understood the condition. They really valued this. Participants told us they enjoyed learning how to incorporate exercise into their routine, and they liked using a Fitbit because they could track and monitor their own exercise and self-assess their improvements. This helped to empower them, and they felt more confident. It improved their attitude towards exercise, which was a really important finding from the trial.

Patients valued being able to exercise at a time that suited them; based around energy levels, medication times, and family and life commitments.”

You are passionate about the power of exercise and the difference it can make to those living with PH. What are the key things you want people to understand?

“I think that it is really important for patients to understand that there is really concrete evidence to show that exercise is safe for those who are on stable medication.

We know that it can help improve their symptoms, and we do encourage them to become somewhat breathless through exercise.

Exercise is not a replacement for drug therapies, but it’s not just about ‘surviving’ with PH. Quality of life is so important, and patients want more from their treatment and their care. We have definitely seen a shift [in healthcare and research] towards wanting to develop more around exercise - and nutrition and psychological support too - and that is really exciting. Things are moving and there is work being done towards services in these areas, which is very encouraging.

In the meantime, there are many ways that you can build physical activity and exercise into your day if you PH. The word ‘exercise’ can be quite overwhelming, but just reducing the time you spend sitting down is important.

It can be as simple as walking around during ad breaks on the TV, or marching on the spot while the kettle boils. You might think ‘that is going to do nothing’, but breaking sedentary behaviour is really beneficial.

Finally, it is important for me to say that although my study included exercise bikes and Fitbits, they are just nice shiny ‘extras’. They are absolutely not what you need to get you started with exercise. All you need is yourself, and the drive to do it.”

Dr McCormack presented her study findings at the European Respiratory Society International Congress in Barcelona in 2022 (pictured).

She also presented the findings at the National PH Research Forum, a gathering of PH researchers and clinicians, at the end of last year. Her presentation was voted the best of the day, securing a £1,000 grant sponsored by ourselves at the PHA UK. Dr McCormack will use the grant to collaborate with other specialist centres in the UK, with a view to assessing current exercise provision and how home-based programmes may be implemented.