The Benefits I Discovered Monitoring My Rheumatoid Arthritis – And How You Can Too

Hello Rheum-Mates Globally!

I am inviting you to join me at the OPERAS.

Finally, I am excited to tell you all that some of the researchers I’ve been working alongside over the last few years with Arthritis Research Canada have launched their symptom tracking app OPERAS to the public. Now OPERAs is open to the public and I want to tell my community about it so they can track their own health, become more motivated and further advance research while doing it.

And yes I said globally which makes me even more excited to tell my US and UK or elsewhere friends they can participate and start taking control of their health today! Who wants to get active and further advance research with me?

I started tracking my health with Arthritis Research Canada researchers in 2019 (read about my experience here) where I discovered quite a bit about my health but now I can invite you to do the same. Arthritis Research Canada has launched OPERAS to the public in perfect timing to help them take control over their health during the pandemic.

I have been using this app to track my symptoms, medications, exercise and more for the past few months since the covid-19 pandemic really put a damper in my usual selfcare routine. I felt lost but with my fitbit and the OPERAS app I am able to keep on track and understand more of my health in our new normal and during the unpredictable bumps that come with living with this chronic illness.

 

Before my copper deficiency diagnosis exercise was difficult. OPERAS has helped me track my symptoms and treatment plan with visual results.

Some of my favorite features of the OPERAS app include

  • Tracks my physical activity to see when I am doing too much or too little or my increase in abilities as I become more active
  • Provides visualization (charts) of my symptoms and progress or decline
  • Print monthly reports to show my health care providers
  • Motivates me to be more active
  • Track my medication changes, not just arthritis related but supplements, vitamins, anti-depressants
  • Track what I eat and how I feel after various foods in the Health Journal option
  • Track my sleep habits and how it impacts me in the day
  • Track my mood and patterns
  • Track my menstrual cycle and how that interferes with my pain, mood and fatigue
  • Track increase of pain or fatigue to see for patterns I need to address to my healthcare team
  • Neatly organize all my symptoms in the Health Journal which helps me feel more organized about my health with brain fog and such a complex illness
  • Offers a deeper understanding of my health which helps me plan better around my chronic illness and daily life
  • Even though I have been living with RA for 5 years, tracking my health teaches me new things about the disease and as my illness progresses. I wish I had this when I was first diagnosed to have had the knowledge and empowerment this study has given me

These are some of the notes I keep regarding my health, not just for rheumatoid arthritis. RA tends to come with comorbidities and it is important to keep track of your symptoms, this is something I learned when I found out recently I am living with a rare copper deficiency – the OPERAS app is helping me recover from that as I become more physically active and start of a supplement routine, I can see proof if they do work for me.

What I don’t like about the app

It’s not really anything about the app I dislike but how forgetful  I can be and how that can interfere with the visualization of my activity levels and to get a really clear understanding. When my fitbit runs out of battery or when I forget to put it back on after taking it off is what I am talking about. I’ve developed habits to charge my fitbit during my daily shower so it keeps the battery full and it becomes part of my daily routine.

The app is still in it’s infancy that’s why your participation is important to help researchers create useful tools like the OPERAS app.

 

Impact of COVID-19 on Rheumatoid Arthritis Disease Activity, Symptoms, and Physical Activity Participation.

People who have rheumatoid arthritis (RA) do better when they are supported and encouraged in their self-care. OPERAS (On-demand Program to EmpoweR Active Self-management) is an easy to use web/mobile app designed for people with RA to track their health. This app helps people to “see” how their symptoms and physical activity levels change over time, together with the treatment they use. During the COVID-19 pandemic, this information can be helpful for people with RA to plan all the things that they juggle in their self-care.

What will be done?

You will be asked to complete a set of questions about yourself (such as your age, sex, marital status, where you live) and also about how the COVID-19 pandemic has affected you and your health. Then a staff member from the OPERAS team will contact you with the information you need to access the website and mobile app. OPERAS will allow individuals living with RA to track their health and to better manage their symptoms during and after the COVID-19 pandemic. As OPERAS is also available as a mobile app, people can track their symptoms as often as they like.

To participate that does mean you need to have a fitbit OR a health tracking app on your phone to participate in this, unfortunately apple watch does not qualify and you will get a better record if you have a wearable tracking device. My participation in this study taught me so much about my RA and what I could tolerate in a day not to mention my activity helps those living with and treating arthritis. It’s a win win situation.

You are eligible to participate if you:

  1. Have been diagnosed with RA
  2. Have regular access to the internet with a computer, a tablet, and/or a smart phone
If you choose to participate, you will be given access to the OPERAS program to track your RA disease activity and monitor your health on an internet browser or via your smartphone. You will first be asked to answer a few questions about yourself, such as your age, sex, marital status, and place of residence. These questions should take about 10 minutes to complete.

When you finish with the questions, you will receive a link to access the OPERAS website and instructions on how to download the mobile app.

OPERAS allows users to track their RA disease activity, symptoms, mood, self-management goals, medication use, and physical activity over time. You may add records as often as you like until June 30, 2022. The interactive graphs of OPERAS will show how your symptoms change over time.

If you have a Fitbit, you may sync your device with OPERAS so you can see your physical activity level along with your symptom status.

OPERAS is hosted by Arthritis Research Canada and this study is being conducted by researchers from UBC and Arthritis Research Canada. You may access the OPERAS website with a randomly generated user ID assigned by the research team. If you have a Fitbit, you may also sign in with your Fitbit login, which will automatically synchronize your Fitbit data with OPERAS.

For your convenience, you may also record your symptom on the OPERAS mobile app. The app is compatible with iOS and Android, and will not access any sensitive information on your phone.

 

 

More about the OPERAS App

OPERAS is designed to put you in control of your rheumatoid arthritis (RA) care. OPERAS will help you monitor how active your arthritis is, your symptoms and mood, along with your physical activity, to get the whole picture of your health.

OPERAS also helps in other ways, too, by allowing you to keep track of your medications, record notes about your health, and create action plans to assist you in reaching your health goals. It also helps you to set and track your physical activity goals by capturing and displaying information collected by Fitbit, a wearable activity device. This information can help you better understand how your physical activity relates to how you feel overall.

OPERAS works best when used regularly. The more you use it, the more information it can show you to help you see how you’re doing. OPERAS recommends monitoring disease activity and symptoms once a week when things are stable, and more often when you want to see the effect of a medication change, or are experiencing more symptoms than usual.

This tool was developed to help Rheumatoid Arthritis patients make informed choices about the management of their arthritis, with a goal of leading healthier, pain-free lives.

If you have been diagnosed with Rheumatoid Arthritis, you may be eligible to participate in this study and use the OPERAS tool. Please contact Johnathan Tam at operas@arthritisresearch.ca for more details.

What does it mean to self-manage?

You are already self-managing your arthritis in the choices you make every day. Self-management is all the things you do to deal with your arthritis, such as how you choose to take your medication, how you monitor your symptoms, and the physical activity you do. These actions are just a few of the ways that people with arthritis self-manage.

Self-management does not mean you have to do it all by yourself. You will work together with your healthcare team and they can provide you with support and guidance as you manage your health.

Why monitor your symptoms and your disease activity?

In rheumatoid arthritis, the target for treatment is clinical remission or minimal disease activity, which means little or no inflammation. It can be difficult for people with arthritis to know whether this target has been achieved. Being actively involved in monitoring your own disease activity could enhance treatment by providing an early warning when your treatment target is not being met. This tool will help you do that.

How OPERAS Works

OPERAS works by collecting data to provide you with personalized information for your self-management journey. The Physical Activity tracker uses a Fitbit device to automatically collect and record your physical activity as you wear it. Whenever the Fitbit device is synced with your Fitbit account, your recent data is automatically uploaded to OPERAS Physical Activity tab.

Within the Disease Activity, Mood and Symptoms Log sections, OPERAS uses questionnaires to collect information on how rheumatoid arthritis is affecting you. It is recommended that whenever you start an assessment in OPERAS, you complete it in its entirety. This is because OPERAS needs answers to all questions in disease activity and mood assessment sections to calculate a correct score for you. By tracking these scores over time, OPERAS is able to provide you with more detailed information about how your arthritis behaves, which may help you identify factors influencing your arthritis.

How often should I use OPERAS?

OPERAS recommends filling out the Symptoms Log and Disease Activity sections once a week when things are stable, and more often when you want to see the effect of a medication change, or are experiencing more symptoms than usual. You might also want to update your information prior to a visit with your doctor or health care provider. You may wish to fill out the Mood Assessment less frequently, like once every two weeks. If you complete the Disease Activity, Mood, or Symptoms Log more than once on the same day, only the last entry for each question will be saved for that day.

What if I’m having difficulty using OPERAS?

If you notice yourself having trouble understanding or using OPERAS, let us know through the “Contact Us” form within OPERAS, or by sending an email to your OPERAS Research Coordinator. The “Contact Us” form can be found by clicking on the question mark icon.

What are the different sections in OPERAS?

There are three assessment tools, and five sections within OPERAS. It is up to you to decide which sections you want to use and how often. However, the more information you enter, the better you can track your progress. Your rheumatologist or other health care team members can also help by telling you what information they would like to see.

The Dashboard

The Dashboard is the first page you will see in OPERAS. It contains tools that allow you to update your Disease Activity, Symptoms Log, and Mood Assessments, and displays two information graphs showing all your assessment results. You can also review past scores on this page, and information on your daily step count, arthritis medications, and selected notes from the Health Journal.

Disease Activity Assessment

The Disease Activity Assessment tool helps you to monitor and record changes in your rheumatoid arthritis. Based on your answers, OPERAS calculates an overall disease activity score, which is displayed in the Disease Activity tile and on the graph below. The Disease Activity Assessment also provides information on the meaning of your score, and what you can do if your disease is not well controlled. The graph allows you to review your score in relation to your overall symptoms, sleep and stress levels, as well as your physical activity.

Symptoms Log

Use the Symptoms Log to track your pain, fatigue, and stiffness, as well as sleep and stress levels. The more frequently you complete your symptoms log, the better you will be able to track your progress.

Mood Assessment

The Mood Assessment helps to assess your mood, and provides information about what your score may mean. If your score suggests you may be experiencing depression, you will be provided with information about actions you may want to take. OPERAS displays your mood information in the Dashboard graph, where you can also view past scores.

Health Journal

The Health Journal allows you to record notes and other personal information you may want to remember within OPERAS. You may want to record life events leading up to a sudden change in symptoms, or to describe occurrences that could be having an impact on your arthritis. The Health Journal is also a place to record reminders to yourself, or for raising with your doctor or healthcare team. You can add, review and print notes from the Health Journal tab. Previously added notes are also visible on the OPERAS dashboard under the “Health Journal Notes” tab.

Physical Activity

Being active is an important step towards effective self-management. This physical activity tab captures and displays data from your Fitbit, including the time you spent being active, the intensity of your activity, break times, and duration of sleep. It consists of three tabs: the Daily View, Monthly view and Activity Targets. The Daily View allows you to see daily activity and targets reached, and Monthly View allows you to see your most active times of the day throughout the month. You will also work with a physical therapist to set daily targets to help you spend more time being active. The data displayed in Daily and Monthly Views will also be shown in the activity targets, which indicate when you have met or exceeded targets set with your therapist.

Medications

You can save information about your current and past medications on the Medications tab. You may want to include information about how your medications may be helping, and any side effects or problems you may be experiencing. It is suggested that you update your medications whenever you change the dose or start a new medication.

You can also print a list of your medications, which you may want to share with healthcare providers when you meet them for the first time. It is also possible to review your arthritis medications on the Dashboard, under the ‘Arthritis Medications’ tab, to see how changes in your medications may be influencing your disease activity or symptoms.

Goals and Action Plans

On the Goals and Action Plans tab, you can create new health goals and action plans, track your progress, and access resources to assist you in reaching your goals. You may want to work with your healthcare team to choose goals and actions that will help you to manage your arthritis.

Printing Feature

In OPERAS, you can print saved information using the “Print” feature. Located in the top right corner of the screen, the printing button allows you to share your information with your doctor and healthcare team. This may be helpful when seeing a healthcare provider who does not know your history, or if you would like to save a copy for your own records. Your doctor or healthcare provider may also like to see the information about your symptoms and disease information that is summarized in the dashboard graphic.

Get started with OPERAS today

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