Using the QENDO App to Communicate with Your Healthcare Team
By Dannielle Stewart
Communicating with your healthcare team can be a challenging task - sometimes it’s hard to describe that acute moment of anguishing pain two weeks after the fact in a doctor’s office, or to remember how many times you exercised last week when chatting with your physiotherapist. An even bigger challenge can be separating your endo, adeno or PCOS symptoms from ‘something else’. Enter the QENDO App, designed to enable your voice and help you and your team to understand you’re not alone. In this blog our Support Team Coordinator Dannielle will talk through how you can utilise the QENDO App to better communicate with your healthcare team and the positive changes this can have on your management of endometriosis, adenomyosis, PCOS, infertility and pelvic pain.
A solid team of healthcare professionals that you can trust with the complexity of your chronic illness can be quite literally life changing. Most of us have experienced that moment when you connect with a provider, establishing that all important therapeutic relationship, because you feel like you’re being heard for the first time. It feels like a weight lifted, a burden shared, and sometimes it can be intensely emotional. If you’re still waiting for that moment, it may be time to seek a second opinion - despite many negative experiences in the chronic illness community, there are genuine, exceptionally skilled and compassionate healthcare providers who can help you manage your condition and improve your quality of life.
So you’ve assembled a team, what next? Communicating with them about your unique situation is going to be a huge part of starting the process of managing your illness and getting the best out of your team. Can an app help you to do that? You bet it can! Meet the QENDO App.
Your Chronic Illness Manager
It’s so much more than tracking your menstrual cycle, pain and mood - the norm for most period apps available. Tracking your period can be immensely helpful, not just if you’re trying to become, or avoid becoming, pregnant. Your period can act as a vital sign for your overall health, which is why tracking apps are useful! You can read more about the benefits of tracking your cycle in one of our upcoming blogs. However the QENDO App isn’t a period app, it’s a manager of your chronic illness. Not everyone with endo, adeno or PCOS has a menstrual cycle, or even a uterus, because we know that these conditions are whole body diseases for many patients and continue to affect them even post hysterectomy, or after menopause.
The app is designed to allow you to track the myriad of symptoms that come with endometriosis, adenomyosis, PCOS, infertility and pelvic pain, as well as any other health conditions you may have. Symptoms you can track span both physical and emotional health. Yes, you can track pain, bleeding, bowel and bladder function, headaches, bloating or acne, to name a few; but you can also track stress, energy levels, mental clarity, mood, depression and anxiety. The symptoms associated with chronic disease are varied and highly individual - the app provides you with the option to get detailed about what that symptom profile looks like for YOU. This tracking allows you to identify patterns or clusters of symptoms, assess frequency of flare ups, and track specific symptoms in detail. For example, you’re not just tracking that you have pain, you’re tracking a full pain assessment of its location, intensity, and sensation.
Additionally, you can track activities in your day to day life, anything from work to study, to exercise and social engagements, and even medical appointments - the list of what you can track is comprehensive. You can see how your daily activities have an effect on symptoms, and vice versa. You can also log food if you want to help identify the impact of diet on symptoms, pin down cravings at certain points in your cycle, or document a prescribed eating plan from a dietician or nutritionist.
The app allows you to customise your experience and input your health records in one convenient location. You can add diagnoses and medical history including photographs of documentation like scans or surgery reports, medications, known and suspected triggers, and a calendar of upcoming events that syncs with your device. Having a chronic illness can be hard work, that’s why having this information in one location can be beneficial for reducing the mental labour associated with illness and communicating the sometimes hefty amount of information you’ve accumulated to your health team
Now that you’ve got all this data and information, what can you do with it?
Help Your Team Help You
Knowledge is power. Sometimes sorting which symptoms are new and relevant, or established and flaring can be an overwhelming task. Trying to understand your body when you feel a lack of control over it can be physically and emotionally draining, and have a huge impact on your wellbeing. Tracking your symptoms in detail and taking time to understand what’s happening, when, and what some possible triggers are can help you feel more in control. If you have more confidence and a better understanding of your body, you can communicate your needs to your healthcare team.
A solid understanding of what is affecting your quality of life the most can also help you add people to your team and thus strategies to your toolbox. Perhaps you find that your biggest issue right now is digestive problems and fatigue, which can steer you towards seeking the advice or a dietician, naturopath or traditional Chinese medicine practitioner. Maybe you’re still struggling with uncontrolled pain down your legs and back from post adenomyosis diagnosis and resultant fatigue from the use of opioids, which may prompt you to see a pain specialist. Chronic illness is a team sport, different problems call for a different approach and clinician to effectively manage them.
One of the first questions a clinician often asks is “what brings you here today?”. It can be an overwhelming question sometimes, and while your chronic illness journey is relevant, sometimes it’s helpful for both you and your provider to talk about your biggest barrier to performing your activities of daily living.
Share Your Progress and Pitfalls
An exciting function of the QENDO app is the ability to add team members who can view the information you input - while you remain in control of what is seen by who. Your team members can range from clinicians, to partners, friends and family. By adding members of your healthcare team, you can communicate changes, positive or negative, which provides them with information they can use to tailor your treatment or intervention.
Let’s talk about the report function - a fantastic tool for your own understanding as well as your team. You can generate a report from any symptom or activity you’ve been tracking over a period of time, for example a week, fortnight or month, then compare it to another component you’ve been tracking (see below). In the example below, the user has tracked cramping as a symptom and work as an activity, and can now compare the two using the report function. From this the user could confer that their pain intensity is higher on days where they have worked longer hours, leading them to talk with their relevant clinicians about potential changes they can make in the workplace, or whether they should consider a reduction in hours. As the individual implements these new strategies they can share improvements with their team, or highlight a lack of progress that suggests trying something else.
A symptom vs activity report, e.g. cramping (blue)/work (pink) report
The reports can be shared via email directly to your chosen clinician, or you can add a particular report to the list of information that you share with those you’ve added to your team via the app, allowing you to share only what you feel comfortable with. These visual cues are great conversation starters, provide ongoing feedback about how you’re doing, and are user friendly
A sample emergency information profile
Communicate Better in An Emergency
Sometimes pain becomes too much to manage at home, or one is faced with a new and frightening symptom or cluster of symptoms, and in this situation you may decide you need to go to hospital. This is frequently an anxiety filled situation, where you’re encountering new clinicians who don’t know you or your history, and may not have the same knowledge of endometriosis, adenomyosis or PCOS as the providers you usually see. Your app is a communication tool for situations just like this.
You can add emergency information to your app and access it from the ambulance icon in the top right corner, which contains a snapshot of your relevant health history, allergies and medications for quick reference. This can be helpful for initial contact with hospital staff, such as nurses doing your admission, when you’re feeling exhausted and in pain. Can anyone remember their medications or even their own name when they’re rating their pain 9/10?
Once you’re being assessed, you can show the doctors and nurses looking after you how you’ve been doing in the last few days or hours, that you’ve been tracking, for example, increasingly high pain scores not relieved by your usual medications; or debilitating nausea that you’ve not tracked before. These are clinicians concerned with your acute concerns, and often don’t know the intimate details of your medical history, and so your tracked data can be an invaluable resource to help them understand what you’re going through, and how they can help you right here, right now. You can also document your flare episode so that the rest of your team knows that your symptoms have deteriorated. One too many flares is a red flag to you, and your team that new strategies need to be investigated to promote your wellbeing and help increase your quality of life!
The QENDO App can act as a bridge between you and your healthcare team, wherever you’re at in your health journey. You’re an individual, why shouldn’t your chronic disease management be just as unique as you are?
The QENDO App is available for immediate download from the app and Google Play stores by searching ‘QENDO’.
The materials available on or through the website qendo.org.au [‘QENDO’] are an information source only. Information provided by QENDO does not constitute medical advice and should not be relied upon to diagnose or treat any medical condition.To the maximum extent permitted by law, all contributors of QENDO make no statement, representation, or warranty about the quality, accuracy, context, completeness, availability or suitability for any purpose of, and you should not rely on, any materials available on or through the website qendo.org.au. QENDO disclaims, to the maximum extent permitted by law, all responsibility and all liability (including without limitation, liability in negligence) for all expenses, losses, damages and costs you or any other person might incur for any reason including as a result of the materials available on or through this website being in any way inaccurate, out of context, incomplete, unavailable, not up to date or unsuitable for any purpose.
