My Chronic Disease Survey

I had to do a survey for my math class, so I decided to do something interesting to me. 🙂 Here is my output, and I would love to hear what you think about the data. Are you surprised by anything? Do you think the sample is representative of a bigger population?

The goal of the survey is to determine how having a chronic disease affects the use of medications, tracking between visits, number of visits to the doctor annually, and the overall perception of the healthcare system. Does chronic disease alter the healthcare experience?

Participants will be recruited through email and twitter and will be asked to complete a six question online survey using the SurveyMonkey survey tool. The recruiting process will continue until 10 days or until at least 75 people have responded. The survey first went out on November 3, 2014, and these results were finalized on November 17, 2014. The questions are multiple-choice questions with an option to write in a additional response on two of the six questions.

The questions are:
1. Do you have a chronic disease?
2. How many medications do you take regularly each day?
3. How many medications do you take on an as needed basis (only when you need them)?
4. What types of information do you track regularly?
5. How would you rate your satisfaction with the healthcare system as a whole?
6. How many times do you go to the doctor a year?

Overall, 118 participants responded to the survey. 52.99% or 62 respondents said that they have a chronic disease.

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For the remaining five questions, the results are shown below where “yes” means the participant answered that they have a chronic disease, “no” means that the participant answered that they did not have a chronic disease, and “Not sure” means that the participant answered that they did not know if they had a chronic disease.

Question 2: How many medications do you take regularly each day?

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Question 3: How many medications do you take on an as needed basis (only when you need them)?

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Question 4: What types of information do you track regularly?

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Other Responses:
Yes: Mood, Cough frequency, Thyroid, Potassium, Salt, Calories, Food, Steps, Thyroid, Exercise, O2 stats, acid levls in blood, kidney calcifications, Drink, TSH, BUN, Creatinine, CBC, Phosphorus, Calcium, Height
No: Steps, Cholesterol, Body Fat, Heart Rate
Not Sure: B12

Question 5: How would you rate your satisfaction with the healthcare system as a whole?

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Question 6: How many times do you go to the doctor a year?
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The percentage of respondents who said they had a chronic disease was 53%%. According to the Center for Disease Control, about half of US adults have a chronic disease, so this result was as expected. I compared the results of the participants who said they had a chronic disease to those who said they did not or did not know. I was surprised that 12.5% said they did not know if they had a chronic disease.

As expected, people with chronic diseases took more medications more often than those who did not have a chronic disease. 90% of the chronic disease participants took at least one regular medication each day, but only 49% of the non-chronics and 63% of those not sure if they are chronic took at least one medication each day. It was also noted that 19% of chronics took 9 or more medications each day, and none of the non-chronics or not sure group took 9 or more.

As expected, the chronic patients took more as needed medications than the other groups. When asked how many medications were taken on an as needed basis, the chronic disease population took medications on an as needed basis 89% of the time compared to 66% for the non-chronics and 63% of those who didn’t know if they had chronic disease. It was interesting that none of the groups took more than 5 as needed medications on a regular basis, and the non-chronic group either took non or 1-2 as needed medications. 38% of the not sure group took 3 – 5 as needed medications regularly while only 16% of the chronic group did.

When asked about information that is tracked regularly, weight was tracked close to 50% of the time in each group and was the most commonly tracked item. Also, blood pressure was tracked about 25% of the time in all three groups. As expected, the chronic group tracked most often with 90% of them tracking at least one item compared to 60% of the non-chronics. Surprisingly, 62% of the not sure group tracked regularly. In the chronic group, pain and symptoms were tracked about half of the time in the chronic group but not very often or at all in the other groups.

When asked about overall satisfaction in the healthcare system, I was surprised to not see a huge difference between the chronics and non-chronics. The responses were fairly similar with slightly more of the chronics being somewhat satisfied when compared to the non-chonics and slightly more non-chronics being somewhat dissatisfied than the chronics. The most surprising group to me was the not sure group who had 0% very satisfied or somewhat satisfied, and a whopping 37.5% very unsatisfied.

When asked how often they went to the doctor, it was not surprising that the chronics went more often than the non-chronics, but it was surprising to me that 25% of the chronics went more than 13 times a year and that 68% of the non-chronics went to the doctor only 1 – 2 times a year.

My hypothesis was actually that chronic disease patients would have a more negative view of the healthcare system, and that was not found in the data. The group that isn’t sure about having a chronic disease seems to be the group with the least favorable view, and non-chronics seemed to have a slightly worse view than the chronics. I would love to learn more about the not sure group to see if they are undiagnosed patients which might explain their higher medication usage, tracking behavior, and visits to the doctor.

A Survey of Patients

For my math class, I have to do a survey and then write a report on the methodology, determine the confidence intervals, and summarize the results. I thought I should at least try to make it interesting, so I did a survey to figure out how much having a chronic disease affects medications, healthcare satisfaction, medications, tracking things, and doctor’s appointments.

Please take my 6 question survey and share with your friends. It is very quick!

I will share the results when it is finished.

Health 2.0

I was invited to speak at Patients 2.0 at Health 2.0 in Santa Clara, CA, but I had to miss it because of school. They had asked me to speak about what I would change about healthcare. Since I couldn’t be there, I made a video response that they played at the conference. If you missed it, here it is. I would love your comments and ideas.

Radio Interview

I was so excited to be interviewed for a radio show called Speak up and Stay Alive by Pat Rullo. She asked me questions about what it is like to be a teen patient and about why I made my video. We talked about what makes a good patient experience, and I got to talk about some of the positives of having a chronic disease too. Please listen and let me know what you think! My part starts around 15 mins in.

Making it easier to take my medications!

A few weeks ago, just before I went into the hospital, my mom signed me up for a new pharmacy program. She was so excited when it came in, and I thought it was cool. The pharmacy coordinates all of the prescriptions and refills and mails them to me in bubble packs. So, all I have to do is punch out the back of the bubble at the right time to take my meds. It also has the date, time, and the each of my medications that are in the bubble labeled on the back. So it is also great for helping me remember if I already took the my daily medications.

Before this, my mom was always complaining about having to go to the pharmacy and how they never could get the meds to be filled at the same time. We were always rushing to get something filled right before I ran out. Also, my mom really started hating having to fill up each pillbox weekly. It also helped me remember if I had taken them, but over time the labels wore off and the containers didn’t have the days of the week. So, I got less concerned about which container I took the meds from and just took a morning or a night container. The bubble pack is great because it has the date like Tuesday, February 4 10 am. So far, i have taken all of my meds at the right day and time with this system when usually I missed at least one dose of something every week or two before.

The other great thing is that the price is actually CHEAPER than the pharmacy we used before (a chain pharmacy). We will save $262 a year by having something easier to use! Also, they have a pharmacist who reviews all of your meds together to see if they see any issues or if they have any suggestions. It had been a while since I started some of the medications and they reminded us of some things to look out for.

I will keep you posted on this and how much I like it after using it longer, but so far HealthStat Rx seems like a pretty great idea to make taking your medications easier. Its was definately constructed with that patient in mind!

Why does everything beep?

Another annoying thing in the hospital is the beeping. Why does the IV pump need to beep loudly in my ear when the nurse is the only one who can fix it? Doesn’t it make more sense for it to beep next to the person who can do something about it? It is especially annoying when I have a headache (which is after each of my treatments). With all of the technology today, surely there is the ability to make it quiet in my room but loud by the nurse?

Also, the nurse call buttons are getting fancier, but it appears that the hospitals aren’t really ready to handle them. For example, the pain button on the remote. It doesn’t do anything different than the Nurse button. If I push the pain button, shouldn’t the person answering know I am asking for something for pain?

And seriously, why does it call a person sitting at a desk who then needs to find the nurse? Can it not page the nurse and then she could pass it to someone else if needed? It is not only annoying to have to tell my problems to the speaker, but I also never know who is listening near the desk on the other end. And, to top it off, they sometimes turn off the light before my nurse comes so I am left waiting when nobody is coming (this is pretty rare as they really do try to come quickly, but it is always a concern because you don’t know if it is working).

Thanks to everyone who has been so supportive after my first video. I will keep making videos about good and frustrating experiences in healthcare. Please comment if you have ideas for a post! Also, I am at home now. I recorded this video during my recent hospital stay for meningitis, but I am recovering at home now.


This is a video I made which includes information on what I have done since the last video and what I plan on doing. Thanks for all the support! You have encouraged me to keep going with this and make more videos.

Thanks again,


(P.S. The first video was originally posted on my moms youtube channel so I have re-uploaded it to a new channel that only I will use. The link to my new channel is here.)

I am a patient and I need to be heard

After four nights in the hospital, I made this video expressing my frustration over the lack of sleep you get while admitted. I also talk about the importance of listening to the patients wants and needs. Have you had a similar experience that needs to be solved?

E-patient Dave wrote an article about my video on

It has gotten quite a bit of attention:)