Introduction

This is part two of our Slowing Disease Progression series. If you haven’t already, check out Part One where we talk about how monitoring can improve your condition. In part two, we are going to delve into HOW you can effectively monitor your condition so that monitoring has an impact on how well you are managing it, explain what you need to monitor, and give you examples of how to monitor COPD (not everything is monitored equally).

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But… before we get started, there are three questions that we recommend you ask yourself when thinking about your monitoring program. These questions are aimed to help you get the most out of monitoring so that all the hard work doesn’t go to waste.

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1. Am I monitoring the right things for my COPD?
2. Am I monitoring these often enough? (or too often in some cases)
3. Am I using the insights from my monitoring to improve my condition?

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Some of these questions are hard to answer, and in many cases (especially in the beginning) you will feel like you don’t know the answer. However, if you trust the process in the beginning, and stick with it, we are very confident you will be surprised at the results. Finally, labelling the title of this article ‘Mastering’ is a little misleading (sorry). The truth is you can never really master monitoring, as your COPD is always changing - COPD never stands still for long. So, instead of trying to master your monitoring at a fixed point in time, we are going to focus on giving you the tools and teaching you the ways you should be thinking when monitoring. That way, if your COPD changes, you are equipped to change with it.

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Without wasting any more time, let’s get into it.

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💡 In this article, we won't be addressing remote patient monitoring or remote monitoring for COPD. Instead, this article is focused on self-management. Stay tuned for our take on remote patient monitoring…

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How to Monitor COPD: Where to Monitor it

This depends on the type of tools that you use to monitor your condition. However, nowadays having access to the right monitoring devices and tools means you can monitor your condition from anywhere. That being said, monitoring from home is where most people end up monitoring their COPD.

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We interview a number of our users and there were two reasons why most choose to manage COPD from their homes:

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Comfort

Typically you feel safer and more comfortable in your own home. Having COPD can be a very personal experience and COPD is well researched that people feel embarrassed about having the condition. So, often people feel better managing where people don’t see.

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📖 If you feel isolated because of your condition, building a support network is a great way to counteract this.

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Routine

In the early days, most reported that they wanted to ensure that kept to their monitoring plan. Today more than ever the world does its best to distract us, so creating a time and location that ensures you stay on track with your commitment helps.

Our advice, pick anywhere where you feel you can be present in the moment and give yourself enough time to be thoughtful about your condition. As we will see, what you monitor will depend on where you do it. But all of them will require intentional effort.

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How to Monitor COPD: Getting Started

In Part 1 of this guide, we detailed how monitoring can help you more effectively manage your COPD. We also mentioned a list of parameters for monitoring COPD that is a good starting place for those looking to get started. To recap:

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• Symptoms: by tracking your symptoms daily, you can tell what days were ‘good’ days and what days were ‘bad’ days.
• Lung Function: tracking your lung function is another way to see how your condition is daily, and if your COPD is getting better or worse over a time period.
• Quality of Life: tracking how your condition affects your life can be a powerful way, to be honest about whether your condition is getting better or worse.

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Monitoring Symptoms

Tracking symptoms is a great starting point to help you get your COPD under control. But for that, you must know the symptoms that need tracking. COPD has many symptoms, and some can be unique to an individual.

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Once you have something to monitor, you have to decide how you are going to monitor it. When monitoring any symptoms, you want to get an insight into three important characteristics: time, frequency, and intensity. These characteristics allow you to understand how much the symptom is affecting you and the direction that this effect is going - is your COPD getting worse or is your COPD getting better?

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• Time: When tracking the time, note when it happened and where you were. This can give you vital information about the time of day and location that most affects you.
• Frequency: How often is it happening? By tracking when it happens, you can then add up the number of times it happened over a period of time (day/week/month) to see if the symptom is getting worse (more frequent)
• Intensity: You should also make a note of how bad the symptom was….

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💡 Because evaluating symptoms can be very subjective, it can often be hard to get an accurate insight into the true effect it is having on your life. The assessments that have been created are built to take this into account.

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Shortness of Breath / Breathlessness (otherwise known as Dyspnea) can be affected by the way you breathe, your lifestyle, and how you think and feel about your breathing. One way to monitor this is through the Modified Medical Research Council Dyspnea Scale (MMRC). Every fortnight, you can note which of the following statements best describes your breathlessness:

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1. “I only get breathless with strenuous exercise.”
2. “I get short of breath when hurrying on the level or walking up a slight hill.”
3. “I walk slower than people of the same age on the level because of breathlessness or have to stop for breath when walking at my own pace on the level.”
4. “I stop for breath after walking about 100 yards or after a few minutes on the level.”
5. “I am too breathless to leave the house” or “I am breathless when dressing.”

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📖 There is more and more evidence that shows the connection between how you feel and your shortness of breath/breathlessness.

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Coughing is a sign that your lungs are producing excessive mucus - a result of having COPD. But, it is also a mechanism, if used correctly, to get that mucus out of your lungs. Noting when you cough, for how long it lasts, and how uncontrolled it becomes can help you manage it happening in the future. We recommend answering the following questions when monitoring it:

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*Friday 30th September 2022:

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• What time of the day or night did it happen (morning, noon, evening, night)?
• Where was I when it happened?
• Was I somewhere new when it happened?
• Was it controlled or uncontrolled?
• Did I struggle to stop the coughing when it started?

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Wheezing is caused by the air struggling to leave the lungs (due to the narrower passageways caused by COPD), it causes the walls of the airways to vibrate. It is this vibrating that is known as wheezing. Similar to how you assess the above, note when you wheeze, and for how long it lasts. We recommend answering the following questions when monitoring it:

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*Friday 30th September 2022:

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• What time of the day or night did it happen (morning, noon, evening, night)?
• Where was I when it happened?
• Was I somewhere new when it happened?
• Was it controlled or uncontrolled?
• Did I struggle to stop the coughing when it started?

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Chest Tightness can be caused by a number of things such as blockage in the airways, air sac damage, bronchospasms, and even a respiratory infection. Because there are so many factors that affect this, we recommend starting monitoring when you feel you have a tight chest.

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*Friday 30th September 2022:

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• Do I have a tight chest today?

Monitoring Lung Function

The peak flow meter is a handheld device that measures how air flows from your lungs rapidly. It is one of the most acceptable ways to track your lung function. However, people with COPD should also monitor their FEV1. The two of these measurements typically make up a lung function test. A lung function exam would be conducted by your doctor in order to diagnose COPD. But, it can also act as an indicator of the progression of your condition.

In terms of how often you should use a spirometer? This is no one right answer. Doing a spirometer test every few days will allow you to keep on top of the direction of your condition. In circumstances where you think things might be deteriorating, you can increase the frequency with which you perform a test so that you can take action before things get worse. To know what your FEV1 and peak flow should be, you can input your information into this calculator.

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Monitoring Blood Oxygen

Your blood oxygen is measured in millimeters of mercury (mmHg). It indicates how well-oxygenated the blood is. People who suffer from COPD naturally have lower levels of oxygen in their blood because, as COPD damages the lungs, the ability of the body to uptake oxygen is affected. In order to measure your levels, you need a device called an oximeter. This device converts the mmHg to a percentage out of 100. For people without COPD, this should be 95-100% when measured with a pulse oximeter. For people who suffer from COPD, this number should be established with their doctor as it often is correlated with the severity of their condition.

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Monitoring your Mental Health

People with chronic conditions are more likely to experience mental health problems. It is something that is not discussed enough and has only recently come to the attention of the medical community. Because of this, it is important you have a support network or people that you can talk to about the difficulties faced by living with COPD. Monitoring your mental health on your own is hard, but having people there to check in on you makes it so much easier.

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Monitoring Quality of Life

A practical way to assess your HRQOL (Health-Related Quality of Life) is to ask yourself a set of questions that give you an indicator of too much your health is impacting your life. At the end of every 12 months, you can review the answers that you have logged and compare them with previous years. An example question set that you can use:

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1. “How has my health affected my work in the last _ months”
2. “How has my health affected my social life in the last _ months”
3. “How has my health affected my mood in the last _ months”
4. “How has my health affected my ability to exercise in the last _ months”

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Bottom Line

These are just some things that you can do to get started. You definitely do not have to do all of them. The most important thing is that you start. In the beginning, take something small to monitor and make a plan to do it regularly. If you can be successful at one, you can build on top of that. You will be a master in no time!!

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