>> Thank you, Alvina, for the opportunity to share this presentation
on tracking symptoms with the CARES group.
My name is Dr. Terri Armstrong, and I'm a Senior Investigator
and Deputy Branch Chief in the Neuro-Oncology Branch.
I lead the Outcome Section, which is a group of clinicians and researchers who are focused
on understanding how both the tumor and treatment impact how someone feels and functions
when they've been diagnosed with a central nervous system tumor.
We're also exploring ways to improve daily life and improve management of symptoms.
We recognize that those with brain or spinal cord tumors may have multiple symptoms
that limit their function in day to day activities.
If you receive your clinical care in the Neuro-Oncology Branch, you're a participant
in the natural history study that I lead.
As part of this study, you are asked to complete questionnaires in which we ask you
to rank the severity of your symptoms on a scale of 0 to 10 in terms of severity.
You complete this prior to a clinical visit or a telehealth visit.
We then collect this information and share it with your healthcare provider.
This includes the severity of your symptoms that occur prior to the appointment.
But we also share information on how you've rated those symptoms
over your last three visits.
This allows the clinicians to see the trend in your symptoms over time,
and they can make recommendations then based on what you report
to help improve the symptoms that are occurring.
My objective for the session today is that we will focus on understanding the occurrence
of both tumor and treatment related symptoms and the potential benefit
of your tracking your own symptoms that occur.
We believe that if you track symptoms, it may be a tool to help communicate how you feel,
what you're doing that helps or makes the symptoms worse and help
to promote symptom management and self-care.
There are many reasons that someone with a brain or spinal cord tumor may have symptoms.
You can have symptoms that are associated with just generally feeling unwell
or other concurrent medical issues such as hypertension or diabetes.
You can also have symptoms that are associated with your treatment.
So, things such as fatigue or anxiety, daytime sleepiness, or constipation or nausea can occur.
In addition, it's unique to central nervous system tumors that the location of the tumor
within the central nervous system may lead
to specific neurologic or cognitive symptoms occurring.
And this is solely based on the location of the tumor and not the type of tumor that you have.
If you have a spinal cord tumor, you probably already are aware
that there are levels to the spinal cord.
And based on where the tumor is located along those levels you can have symptoms associated
with changes in functions in your arms, your legs, or even bowel and bladder dysfunction.
In addition, those who have tumors in the brain may also recognize that the side
that the tumor is on-- the left or right side of the brain--
or the lobe that the tumor is located in, whether it's any of the lobes listed here,
may lead to symptoms such as weakness, changes in sensation, visual changes, or even seizures.
So, for each individual person, you can have a different grouping of symptoms that are unique
to you based on other medical conditions, your health status, and the location of the tumor
and the treatment you are receiving.
Our work in the natural history study has identified that those diagnosed with brain
or spinal cord tumors are highly symptomatic from the time of diagnosis.
In our natural history study, 30% of those diagnosed with brain tumors have more
than three symptoms at the time of presentation.
Most commonly headaches, seizures, memory problems, or difficulty with balance or walking.
The majority present to an emergency room because of these symptoms,
either because of the acute nature or the severity of the symptoms that are occurring.
Fifty percent of those with spine tumors in the natural history study report greater
than three symptoms at the time of diagnosis.
Most commonly this includes back pain, sensory changes, and weakness,
with the majority presenting to an outpatient clinic.
We've also shown that symptoms can continue throughout the course of the illness
and impact how a person feels and functions.
Over 80% of those with high grade brain or spinal cord tumors are unable to return to work
because of symptoms from the time of diagnosis.
In our work specifically in lower grade tumors, including ependymoma, has shown that nearly 50%
of those folks are also unable to return to work because of ongoing symptoms.
In addition to symptoms occurring at the time of diagnosis, symptoms can fluctuate,
or new symptoms can occur over time.
One way that symptoms can fluctuate is based on the time of day.
It's common for people who have neurologic or cognitive symptoms or fatigue
to report these may be worse near the end of the day after being active,
and improvement after sleeping at night.
This type of daily fluctuation is normal.
But by understanding how your symptoms fluctuate, you can plan your activities
to lessen the impact that these symptoms have and what you want to do.
Symptoms can also fluctuate in relation to the treatment that you're receiving.
Symptoms such as nausea, constipation, or fatigue which can occur with chemotherapy
or radiation treatment oftentimes occur at particular days during your treatment cycle.
By tracking your symptoms over time,
you can identify when these symptoms start and when they're at their worse.
And working with your healthcare provider, you can identify strategies that may help
to lessen the symptoms or prevent them from occurring altogether.
Finally, those symptoms that are related to your tumor sometimes can worsen or improve based
on changes in the size of the tumor on imaging studies.
It's always concerning if those types of symptoms seem to be worsening.
By tracking the symptoms, you can have a better sense if they're continually worsening
or if they're fluctuating throughout the day.
Healthcare providers become concerned about these types of symptoms
when we see steady progression or worsening of these symptoms.
This graph shows data from a patient who participated in the natural history study.
These are the types of graphs that your healthcare provider can see.
We're looking over the last three visits.
And we can identify that this person had progressive worsening
in some symptoms, including memory.
But primarily these were symptoms associated with their treatment
over time and we were able to adjust it.
By tracking which symptoms you're having, which ones are worsening and cooccurring,
you can work with your healthcare provider to interpret the symptoms
and understand what may be the underlying cause and plan accordingly.
There are several potential benefits that you can experience
by tracking your symptoms when at home.
One benefit is to allow you to see the trends and symptoms over time that I just discussed.
This is particularly important when you can track them in relation to your treatment
or prescribed medications if you just started these medications
or are having trouble with tolerance.
But you could also track what you do that helps and what makes it worse
at the same time you track your symptoms.
You may find that taking a particular prescribed medication, adjusting your diet, your exercise
or your sleep may help your symptoms.
And by tracking what you're doing to treat your symptoms and the severity of your symptoms,
you can evaluate this on your own and with your healthcare provider.
Your healthcare provider may also ask you to track your response
to prescribed treatments and your self-care plan.
For example, if they prescribe a medication to reduce your seizures or to treat your fatigue
or your nausea, you can track when you take the medication and the impact it has on the severity
of the symptoms that you're prescribed the medication for.
This can be incredibly important and help your healthcare provider determine if you're
on the correct dose and the correct medication or if other things
that they've prescribed for you are helpful.
Finally, it can be a communication tool that you can share with your loved ones,
your healthcare record, or your healthcare professionals to update on what you're doing
to care for yourself and how it's impacting how you feel and function.
Some tips to implementing symptom tracking on your own is to consider using tools
such as a calendar, a journal, or use of an app.
Within the Neuro-Oncology Branch, we've created an app named My STORI,
which is available in the Apple store for free.
We do not collect data through this app, rather you can track and store your own data
and share it with your healthcare provider, your loved ones, or your healthcare record.
If you do track your symptoms, you should consider tracking them on the day they occur.
Studies have shown that anyone has difficulty remembering what symptoms that they had longer
than a week before trying to document it.
It's best if you can track it on the day that the symptoms are occurring or within one day.
You can determine how often you want to track your symptoms on your own.
You can do it daily around the treatment or if you're having increasing symptoms.
Or you can monitor at a set time of day, a few weeks at a time,
or even weekly if you want to follow more long term.
Remember to track self-care strategies, medications,
treatments, and appointments as well.
That may be important to see how your symptoms fluctuate around all of those activities.
The app I mentioned that we've developed includes several tabs that you can used
to record your symptoms and your activities.
It includes a symptom log that allows you to rate your symptoms
and functions as often as you want.
You rank each symptom that you want to record on a scale of 0 to 10.
You can also report how your symptoms are impacting your physical functioning
as well as your activities.
There's then information on what we term evidence based self-care strategies.
These are self-care strategies that have been evaluated in people with other cancers
or in brain tumor patients that have been shown to be helpful.
This includes the use of particular therapies, but also implications
for your diet, exercise, and sleep.
Within the app there's also a care log that allows you to track your self-care activities.
You can track anything that you've decided to do or that your healthcare provider has prescribed.
In addition, there's also a calendar where you can document when you have appointments,
when you're receiving treatments, and when you're doing year self-care activities.
This can allow you to keep everything in one place and share with your healthcare provider
at the time of your clinical visit to plan for better strategies to manage your symptoms
and to help you understand why they are occurring.
Finally, you can also create a report based on the length of time or trajectory that you want
to report your symptoms to your healthcare provider.
This can be over a day, a week, months, or even longer.
You can do this through your contacts on your phone simply by preparing a report which appears
in a PDF format and then sending via text message or e-mail to your loved ones,
your healthcare provider, or even sharing with your medical record.
We tried to make this an app that allows you to track all the things that may be important
to manage your symptoms and improve your ability to include self-care into your care routine.
I thought it may be helpful to review an example of how tracking of your symptoms may help you
in collaboration with working with your healthcare provider.
In this example, Mary was seen in the clinic and reported increasing fatigue during her treatment
at her visit with her neuro-oncologist.
They recommended that she track her fatigue but also her sleep over the next week
which included some time before treatment and then during.
On tracking she noted that she was having trouble sleeping, as outlined in the green,
as well as fatigue, as outlined in red, after she started treatment.
On review, it was recognized that she was taking Dexamethasone
to treat a rash and was taking this before bed.
It was believed that this may have interrupted her sleep.
Using the sleep hygiene suggestions that were included in the app
and that Mary could institute herself, as well as changing the timing of her medication,
resulted in improvement in sleep and also fatigue,
which continued to improve with subsequent treatment.
This is an example of how partnering with your healthcare provider and tracking your symptoms,
you can use the information to have conversations and improve how you feel.
You also may find it helpful to record multiple symptoms and track them over time.
This will allow you to see the relationship amongst symptoms,
whether they occur concurrently, or one may proceed another.
Tracking multiple symptoms can help the healthcare provider make recommendations on how
to manage them when they see how they're related over time.
The My STORI app allows you to monitor the primary symptoms reported in our work with range
of our patients, but also allows you to track the impact
that these symptoms have on your day to day life.
Some additional information that you may find helpful about the My STORI app is
that it is designed either for the person with a brain tumor or their caregiver
to monitor symptoms and self-care activities.
The app is available to everyone and is free on the Apple store.
And we're currently developing a version in Android.
The symptoms and self-care content is also available on the NCI-CONNECT website.
So, if you are not interested in using the app, you can still gain access to this information.
And we hope it helps you in thinking about how you can manage your symptoms at home.
If you have any additional questions, we have an email at mystori@nih.gov that you can write
to us and share your thoughts or questions.
And in our neuro-oncology branch we're dedicated to not only treating the tumor
that you may have, but also doing what we can to improve how you feel and function.
We believe that your own self-care is an important component of that.
We recognize that you spend a limited time with us in the clinic or by phone.
And there are things that you can do on your own to take you
of your mental, emotional, and physical health.
And we hope this is one tool that you'll consider.
We do believe that things that you do on a day
to day basis can make a difference for how you feel in the future.
And we hope that this tool will help you to do that.
>> Learn more self-care strategies at cancer.gov/nci-connect.
The U.S. Department of Health and Human Services, National Institutes
of Health, National Cancer Institute.
Cancer.gov.
1-800-4CANCER.
Produced November 2021.