Matching Dialysis Options to Lifestyle with MyDialysisChoice.org
When consumers on the Facebook dialysis groups want to know, "Which treatment should I pick?" I've started to ask them the question that really matters: "What do you want your life to look like?" When their kidneys fail and they can't get a transplant right away, it's not dialysis they think about, it's their lives. How will they keep their jobs? Homes? Relationships? Will they be able to travel? Work out? Sleep? Will they have the energy to spend time with loved ones?
"I have been going down hill a lot lately. Trying hard to fight the urge to just go... My children and grandchildren still need me, but I am so tired."
"My pets really are like my children. I rely on them for strength and motivation to keep going."
"I'll never get used to these needles...they always hurt like hell!"
"I discovered that kidney disease along with any illness can take its toll on your sex life/libido. A decreased sex drive is not uncommon with ESRD. When you feel bad, you probably aren't going to want to have sex."
Nearly 3 years ago, Dr. John Agar suggested that we collaborate to build a "decision aid" to help people better understand their dialysis options. I insisted that we had to map the impact of each option onto lifestyle. We got fairly far along the path with two efforts, only to scratch them and start over. Too complicated. Too wordy. They didn't tie lifestyle closely enough to treatment options. But, as they say, the third time's the charm, and our third effort is the one we just launched as My Life, My Dialysis Choice.
Sponsors of Home Dialysis Central will be glad to know that their support allowed us to devote some of our programmer's time to building and tweaking—and now, testing My Life, My Dialysis Choice!
To build this tool, we brainstormed a list of values, based on consumer input over the years. We divided the list into "Lifestyle" and "Health" and ended up with 21 values. Users can choose the values that matter most to them. Then, for each one they choose, they'll see a table of four ways to do dialysis: Extended HD (home or in-center), short daily HD, standard in-center HD, and PD (both APD and CAPD). The tool works on smartphones and PCs, too. Each medical term in the tool (dialysis, catheter, fistula...) is underlined and clicking on it will pop up a definition.
Each box in the table maps the impact of that treatment option onto the chosen value. In fact, our developer even chose a map-and-compass design for the tool. The bullet point descriptions are evidence-based when there were studies, though we didn't rate the evidence, and some is, no doubt, better than others. Some are entirely pragmatic, such as travel—there are no studies. All of the references we used are in the Help, I Need Dialysis! book (which won a National Health Information Award! (link to press release). The user can then choose zero to three stars to designate how well each of the options fits a value. The tool is completely transparent. At the end, the user's choices are displayed in a graph.
We've gotten some great early comments, like:
"I think it is fantastic! That is what I NEED. To be able to put in my criteria, look at the positives and negatives, and have the computer tell me which method likely fits my specifications the best."
"It's great! Really easy to navigate, great information on both 'pros' and 'cons' of each choice, and friendly and helpful."
"That thing is awesome! The only suggestion I have since reading the thread is to add the stars automatically. Some I touched half way thru...lol! But seriously, thank you, thank you thank you."
My Life, My Dialysis Choice is one of a triad of MEI tools designed to help improve dialysis options education, along with Help, I Need Dialysis! and our free CKD education slide toolkit, How to Have a Good Future with Kidney Disease. Future plans include adding a transplant section and one for conservative management without dialysis (what we call "Comfort Care.")
My Life, My Dialysis Choice is in Beta version, and can collect feedback from every page. After pretesting the tool with the Home Dialysis Central Facebook discussion group, we added a 22nd value. There are likely others we missed, too. We may display PD "first" on the tables instead of last. We may need to define more terms and add a "How to Use this Tool" button. We welcome YOUR feedback and comments to make the tool better, and then we will see what we can do to evaluate it.
Meanwhile, it works! We think it will be helpful for:
- New consumers who "crash" into ESRD with little notice, knowing nothing about their options
- Consumers with late-stage CKD who want to proactively choose an option that will best fit their lives and allow them to live they way they want to
- Consumers who are using some type of dialysis now, and are unhappy with how they feel or how their lives are working
Please let us know what you think! My Life, My Dialysis Choice
Nov 09, 2018 9:33 PM
somewhere. Evidently, I missed the point but I was left in the dark and a little frustrated .
Nov 09, 2018 9:52 PM
Feb 14, 2014 6:46 AM
Dori ... as you know I have sent this to colleagues in Australia where APD is the most common PD modality and there was a strong suggestion that we somehow differentiate CAPD from APD.
I agree that this is (1) a valid criticism and (2) exactly the sort of feedback we seek.
In addition, there was a suggestion that the lead-in is not as clear as it could be and that more explanation is needed about how the process works and how to use the stars.
As you know, I have passed these on to you already, but this kind of positive feedback is 'gold', and although the sevral congratulatory comments are much appreciated, critical comment is even better as it helps us to learn how to make the tool even better.