GeriTech

In Search of Technology that Improves Geriatric Care

mhealth

The ePrognosis App: On Life-Expectancy & Healthcare Decision-Making

[This post was first published on The Health Care Blog on 11/22/13.]

Last month an intriguing new decision support app launched, created by experts in geriatrics and palliative care. It’s meant to help with an important primary care issue: cancer screening in older adults.

Have you ever asked yourself, when considering cancer screening for an older adult, whether the likely harms outweigh the likely benefits?

Maybe you have, maybe you haven’t. The sentence above, after all, is a bit of wonky formulation for the following underlying questions:

  • How long is this person likely to live, given age and health situation?
  • Given this person’s prognosis, does cancer screening make sense?

The first question seems like one that could easily occur to a person — whether that be a patient, a family member, or a clinician – although I suspect it doesn’t occur to people perhaps as often as it should.

As for the second question, I’m not sure how often it pops up in people’s minds, although it’s certainly very important to consider, given what we now know about the frequent harms of cancer screening in the elderly, and usually less frequent benefits.

Furthermore, there is abundant evidence that “inappropriate” cancer screening remains common. “Inappropriate” meaning the screening of people who are so unwell and/or old that they’re unlikely to live long enough to benefit from screening.

For instance, one astounding study found that 25% of physicians said they’d order colon cancer screening for an 80 year old with inoperable lung cancer. So it’s clear that improving the decision-making around cancer screening would help improve healthcare safety, quality, and value.

Enter the ePrognosis Cancer Screening app, which is the first app created by the UCSF-based ePrognosis team. It’s free in the iTunes store, and according to co-creator Eric Widera, a geriatrician and colleague of mine, it was designed to be used by the public as well as by clinicians.

The app basically works like this:
  1. You tell it whether you’re interested in screening for breast cancer, colon cancer, or both.
  2. The app asks you 15 questions about yourself, your health, and whether or not certain activities are difficult for you. (The questions are a combination of the Lee and Schonberg mortality indices; see here for the questions and relevant scholarly citations.)
  3. You are then presented with a statement on whether cancer screening is recommended, along with a nifty speedometer graphic illustrating the balance of harms vs. benefits.
  4. If you click “Learn more” you are shown a series of pictographs illustrating information on expected harms and benefits of screening, along with information on what proportion of similar people will die over the next 10 years whether or not they get screened for cancer.
  5. You can also click share and reportedly send the report to another person. (Note: I wasn’t able to get this to work for me.)

For more information on the app, including some good screenshots, you can read theGeriPal post introducing the app.

Using prognosis: From research to ePrognosis to…app?

So will the app work as its creators hope? Meaning, will it help patients and clinicians make better decisions about cancer screening in older adults? And will it reduce inappropriate cancer screening in older adults?

Prognosis is, after all, a thorny topic. Even if you can get decent prognostic information at the time you need it, going through discussions and decision-making based on this information is not easy. For instance, this qualitative study of older adults found that although most participants were open to discussing life expectancy, about a third perceived such discussions as not useful, or even harmful. (Interestingly, 64% of participants felt that their physicians could not correctly estimate their life expectancy.)

The ePrognosis project itself was meant to address the first part of the challenge: the fact that practical prognostic information is hard for front-line clinicians – and regular people — to find. Consider this: even today, UpToDate has no topic page on how to estimate life expectancy in older adults, despite many guidelines now urging clinicians to factor prognosis into medical decisions. (For a useful slideshow on why we should use prognosis, see here.)

Instead, UpToDate has a page titled “Communication of Prognosis in Palliative Care”, authored by UCSF’s Alex Smith, a co-creator of ePrognosis. This resource has terrific content on how clinicians can discuss prognosis, but because of its title, may not be easily spotted by doctors searching for a quick way to figure out life expectancy. (“How to talk to patients about how long they’re likely to live” might catch more notice among generalists.)

I myself like the ePrognosis website in concept. That said, I recently found myself sheepishly admitting to Alex that I’ve hardly ever used it. Why? Mainly because my patients tend to be quite elderly and frail, and I feel that I’m already incorporating a sense of their limited life expectancy into my recommendations and conversations with them.

And herein lies the rub: the clinicians who think of using ePrognosis, or of incorporating life expectancy into their decision-making, are probably not the ones who most urgently need to use something like ePrognosis. (Not that we’re perfect – I’m sure using more decision support would help me — but at least we’re not the type to order cancer screening on an 80 year old with inoperable lung cancer.)

In general, the ePrognosis story illustrates a common challenge in improving healthcare quality: the problems that experts see at the population level (excess cancer screening in frail elders) are experienced very differently by the clinicians and patients on the ground (clinicians and patients have historically had enthusiasm for screening).

But changing the behavior of individuals – which is what you need to improve a quality problem – is very hard, especially if people remain embedded in their usual environments. Although expert guidelines and advice do have an important role to play, it’s usually not nearly enough to counter the habits and attitudes of the people in the trenches.

Still, when it comes to better healthcare for older adults, creating the tools to calculate and communicate life expectancy is a good start. Once a tool exists, it becomes possible to see how people respond to it, refine it, improve it, and also think of how to make it more available to the right people at the right time. One could even imagine certain tools being embedded into the clinic processes that nudge clinicians and patients towards (or away from) certain actions.

Now, where do you think we should go from here, if we want to use prognosis to improve healthcare, and healthcare value, for older adults? The creators of ePrognosis are looking for feedback and suggestions as to next steps. So check out the ePrognosis website, try out the app, and share some thoughts in the comments.

I just plugged information on a current elderly patient into the ePrognosis Gagne index and it predicts a 30% chance of death in the next year. Hm… perhaps I’ll reread that UpToDate page on discussing prognosis, as this patient is due for an advance care planning conversation. That page describes a five step process for discussing prognosis.

Should that be in an app?

[There are some interesting comments on this post at THCB; add your thoughts either here or there.]

Helping Caregivers Organize Information

Which technology tools should we clinicians recommend to the caregivers of elders?

This is the question I found myself musing on a few months ago, as I was preparing to give a talk related to technology at a Family Caregiver Alliance retreat for younger caregivers.

There are, of course, quite a lot of apps, services, sensors, and other various interesting technologies available. So many, that it’s quite hard to keep up with them all.

So instead, I decided to start by thinking of a few key areas in which I’d seen tools really help caregivers better manage an older person’s health needs.

I came up with four key categories of tools that I’ve recommended to families:

At the retreat, we discussed the purpose and benefits of using these tools. Then we talked about some options for each kind of tool, including a few apps that I’ve tried for each purpose. Because the conversation was so fun and interesting, I ended up trying to summarize the key points (and some tech options) in the series of posts linked to above. (They are on my Geriatrics for Caregivers blog.)

Tools, I might add, do not necessarily need to be high tech. In going through the options for addressing each category above, we started by talking about the pen-and-paper approach, and then moved on to increasingly specialized digital options.

It is, of course, better to have information on paper than not documented at all. (Pew found that 44% of caregivers were tracking health issues just in their heads!) But the nice thing about things like computers, the Internet, smartphones, and even some apps is that they often — but not always — make it easier for us to collect and organize information.

Still, like many things that are “good for you”, it’s all easier said than done. Getting more organized usually requires behavior changes and some effort, especially at the beginning.

Personally, I’d love to see clinicians and primary care teams be ready to help patients and caregivers with the tools above; when properly used, these kinds of information tools can have lots of benefits. Tracking symptoms and response to a treatment strategy can lead to faster resolution of bothersome health problems. Carrying around an up-to-date medication list and copies of key medical data often leads to safer, more coordinated medical care. And figuring out an approach to keeping track of what needs to get done can help caregivers from feeling too overwhelmed.

So, the potential for benefit is there. We just need to find usable tools, and make it all manageable for patients and caregivers. (It’s also nice when the information gets back to the clinicians in a form that’s easy to use.)

If you are a clinician or otherwise work with caregivers of elders, what kinds of tools have you recommended for the purposes listed above?

When Foundation-Approved Apps Founder

[This post was first published on The Health Care Blog on 9/6/13. Dr. Mike Painter of RWJF was kind enough to post a thoughtful response in the comments section there.]

What does it mean when an app wins a major foundation’s developer challenge, and then isn’t updated for two and a half years?

Today, as I was doing a little background research on task management apps for caregivers, I came across a 2012 post listing Pain Care as a handy app for caregivers.
Pain is certainly something that comes up a lot when it comes to geriatrics and supporting caregivers, so I decided to learn a little more about this app.
“The Pain Care app won the “Project HealthDesign” challenge by the Robert Wood Johnson Foundation and California HealthCare Foundation,” reads the descriptive text in the Google Play Store. 
Well well well! RWJF and CHCF are big respectable players in my world, so I was impressed.
But then as I looked at the user reviews, I noticed something odd. Namely, that the most recent one seems to be from April 2012, which is like 2-3 generations ago when it comes to apps.
And furthermore, the app itself was last updated in February 2011. This is like a lifetime ago when it comes to apps. 
I decided to download the app and give it a whirl. It’s ok. Seems to be an app for journaling and documenting pain episodes, along with associated triggers. Really looks like something developed by doctors: one of the options for describing the type of pain is “lancinating,” and in a list of “side-effects” (side effects of what? the pain medication one may have just taken?) there is the option to check “sexual dysfunction.” Or you could check “Difficulty with breathing.” (In case you just overdosed on your opiates, perhaps.)
The app does connect to a browser-based account where I was able to view a summary of the pain episode I’d documented. It looked like something that one should print and give to a doctor, and in truth, it would probably be helpful.
Setting snarky comments about the vocabulary aside: this app actually looks like a good start for a pain journal. But it needs improvement and refining, in order to improve usability and quality. Also, although I don’t know much about app development and maintenance, I assume that apps should be periodically upgraded to maintain good performance as the operating systems of iPhones and Android phones evolve.
What does it mean, that this app was blessed by RWJF but then has been left to founder? A quick look at the developer’s news feed reveals that the app maker, Ringful Health, has racked up an impressive array of research contracts and prestigious partnerships: NIH, CMS, Consumer Reports.
Will these alliances lead to more lasting (read: supported and improved in an ongoing fashion) products and apps that can benefit patients and caregivers? What is the measure of a successful app, from the perspective of public health authorities, and of foundations?
Clearly, this is partly about issues related to business case and funding. To maintain an app, you need money. (If you get money from active users, then you definitely need to work on keeping them happy.)
Who will pay to maintain the apps that foundations, government agencies, and public-interest agencies help start?
And what does happen to most of these apps and tech projects that win foundation awards? Would be interesting to learn more about the natural history of such apps…

Sleep, Stress, and Sustaining Behavior Change

If you are interested in the non-pharmacological treatment of insomnia, an interesting item ran in the NY Times this week: “How Exercise Can Help Us Sleep Better.”

This particularly caught my eye for a few reasons. The main one is that sleep problems are a common complaint among older adults. And exercise is something that I’ve often recommended as part of an approach to improving sleep, whether the patient was a sixty-some year old caregiver, or a more elderly person with dementia.
Plus, as I’ve mentioned in a prior post, I myself have had frequent struggles with insomnia, and have sometimes applied to patients what I’ve learned from myself.
The thing is, it didn’t really seem that I slept much better on days when I got more exercise. Still, I’ve continued to recommend exercise to caregivers and frailer elders alike, given how beneficial exercise is over all. (It’s linked to better strength, better function, better mood, better health outcomes, better glucose control, etc.)
Do most of them manage to increase their exercise? Well, no. At least, not as far as I could tell, and determining how much people’s exercise levels have changed is a challenge because so far, I’ve mostly had to rely on people’s self-report, during a visit. (I’m still waiting to have a patient or caregiver use a Fitbit or other activity tracker.)
And does exercise in fact improve sleep? The Times article describes a fascinating new research study addressing this topic. 

A clinical study of sleep and exercise

To summarize: the study randomized 11 sedentary women (avg age 61 years old) with insomnia to a program of exercise 3x/wk versus no change. 
After four months, the women who were exercising regularly did have better sleep, and were sleeping on average 45-60 minutes longer every night.
But here’s the kicker: it took literally months of exercising before sleep got better. And on a day-to-day basis, most participants did not sleep better on days when they exercised. 
According to the Times article (the study’s author was interviewed), this is at odds with most research & the experience of many people, which is that exercise = better sleep that night.
However, Dr. Baron, the study’s lead author, notes that many studies of how exercise affects sleep used people who didn’t have insomnia at baseline. She goes on to explain that people with insomnia may be “neurologically different,” and have a “hyper-arousal of the stress system.” But if they maintain an exercise program, after a few months they do start to sleep better, which Dr. Baron attributes to a dampening of the stress response.
The study also found that participants exercised less on days after sleeping poorly, so in the short-term it seemed that sleep had more of an effect on exercise than vice-versa. 
The Times article concludes with Dr. Baron advising readers with chronic insomnia to start exercising regularly if they aren’t already doing so, but to bear in mind that improvements in sleep probably won’t be immediate and could very well take months.

Implications for the practice of geriatrics and general medicine

Would one find similar results if one studied a group of 85 year old women with poor sleep? And what if they had dementia? No one knows, and it’s quite possible that the results would be different since both aging and cognitive impairment are known to modify sleep patterns.
Still, these results are very important to the practice of geriatrics, because the study group sounded very similar to a population that we often work with: family caregivers.
Chronically stressed? Not enough time to exercise? Can’t sleep well at night?
Sound like anyone you know? Actually, it sounds a bit like me and other working mothers who have too much on their plate, but it also sounds like the women I see bringing their elderly loved ones to see the doctor, frazzled by the strains of worrying about a parent and taking on more and more caregiving duties.
And, the chronic stress of family caregivers is a very serious public health problem. It affects the health, wellbeing, and even workplace productivity of the caregivers themselves. Plus it often has a direct bearing on the health and wellbeing of the elderly person being cared for.
In general, stress is a huge and thorny problem in healthcare and for society. As a physician, I’ve often diagnosed stress as an important contributor to some significant health problem we’re trying to manage. But it’s very difficult to help people reduce their stress.
This study sheds some light on why: reducing one’s internal reactivity to stress takes time. A behavior change meant to reduce stress may need to be sustained for months. 
This is a tough challenge for all involved. Tired and stressed caregivers want relief now, and don’t have a lot of energy and bandwidth to stick with a behavior change for months. Clinicians want to help (and if they’ve kept up with best practices, want to help the patient minimize the use of pills for sleep or anxiety), but it’s hard to find a way to get patients to sustain behavior changes.

What tech solutions might help?

It’s not hard to envision how technology solutions might help. For those caregivers who have a smartphone or can access technology, it should be possible to
  • Log sleep and exercise. Ideally, with as little hassle as possible. Collecting this data can be helpful to clinician and caregiver when they meet to follow-up on a plan to increase exercise, decrease stress, and improve sleep. 
    • In some cases following data in real-time might help people maintain a behavior or technique (such as in biofeedback). 
    • Whether caregivers would find it helpful on a daily basis to see how much they’d slept every night is unclear to me; it could potentially be stressful to not see sleep improving as quickly as one wants it to.
  • Provide reminders and support to help caregivers maintain the exercise habit. There must be some way to leverage technology to help caregivers (or any patient/person) maintain an exercise habit, but I’m not sure which would work the best for the caregivers I work with. 
    • In fact, the multiple options available (there are so many apps/services available to help people meet fitness goals!) is a problem: making a choice is difficult!
    • Caregivers and patients would probably appreciate and value a recommendation from clinicians, but it might be hard for clinicians to make a recommendation unless it’s a product the clinician has already tried for him/herself.
      • We may also see companies aggressively market themselves to doctors, in hopes that their fitness app will be “prescribed.” I have mixed feelings about this since historically when business markets to doctors, the patients are not always well-served by the results.

In search of tech tools to try

Ok, so now let’s play a fun game called “Help-a-Doc.”
I am willing to try an app or service in the next few months to log my own sleep and exercise, and also to help me start and maintain a 3x/wk exercise habit. (And let’s see if it improves my sleep, which could stand to get better.)
If you have a recommendation to meet any of the needs above (sleep tracking, exercise tracking, and behavior change support), please post in the comments below, or drop me a line.
I’d like to eventually have some specific tools to suggest to caregivers and other non-frail adults who are struggling with sleep, exercise, and stress.

ISO medication apps for dementia caregivers

I’ve been interested in apps for the caregivers of elders, but until recently I’ve also, like many physicians, been too busy to seriously research them or try them out.

(As I noted in my recent post on task management apps, selecting and learning to use an app can actually be quite time consuming.)

Time to change that. No, I’m not going to exhaustively research and review all caregiver apps on the market.

But, as I’ve been invited to give a technology talk to a local group of family caregivers later this summer, I would like to see if I can find a few specific apps or tools that are likely to help caregivers.

As this is an event specifically for younger caregivers, I’m expecting a group of caregivers that is generally comfortable with smartphones.

The care recipients, however, are primarily older adults with dementia. So this is a good match for my geriatrics background.

Which apps should I look for? I’m going to start by looking for apps that can support issues that I spend a lot of time counseling families on. As a major such issue is medication management, I’ll start my app search there.

How I usually advise caregivers on medications

I spend a lot of my clinical time both reviewing medications, and advising families on how to properly handle medications. Here’s what we usually end up discussing:
  • Maintaining an accurate and current list of all prescribed medications is essential. Older adults with dementia tend to see a lot of doctors, and have a lot of medications prescribed. Keeping track of them is crucial because:
    • Many medications have cognitive side-effects. These include sleep medications, allergy medications, overactive bladder medications, and others. (Unfortunately, although all these medications are on the Beer’s list, they continue to be often prescribed to older adults with dementia.) When an elder is getting worse cognitively, or has other complaints, it’s essential to be able to review an accurate medication list.
    • The treatment plan for any medical complaint should only be made after review of a current medication list. 
  • Keeping track of which medications the person is regularly taking is important. There is what’s been prescribed – or otherwise is on the list of biologically active substances regularly taken, many of which may be over-the-counter drugs or supplements — and then there’s what’s being taken most days. Although it can be theoretically be useful to have a log of when every single pill was taken, what is usually most useful is to start with a general sense of whether the patient is taking the drug regularly or not. 
    • For example, many older patients avoid their diuretics because they don’t want to have to pee more often. It’s important to find this out before attempting to increase the dose of blood pressure medication to bring hypertension under better control.
    • In other cases, patients are not taking a medication due to financial considerations, or concern about side-effects, or because their cousin Joe had a bad experience with it. All these issues merit a non-judgemental conversation, which can only get started when clinicians are alerted to the fact that patients are not taking prescribed medications.
  • Keeping track of how often a person takes “as needed” medications is important. These include medications for pain, for abdominal symptoms (heartburn, constipation), and even sometimes insulin. 
    • Reviewing the use of “as-needed” medication is needed to track the progression/resolution of a problem, and to inform future medication adjustments. 
    • Caregivers (and assisted living facility staff, for that matter) routinely underestimate the importance of tracking use of “as needed” medications; I know this because I often get blank looks when I ask how often an older person is requiring their “as-needed” medication.
  • Cognitively impaired older adults often need help remembering to take their medications. They also often need help refilling prescriptions. 
    • This can be a delicate matter, especially for those with only mild dementia who are often resistant to supervision or assistance from others. Still, it’s a real problem.

App features to support dementia caregivers

Given that I find myself repeatedly discussing the above issues with dementia caregivers, I’ll be looking for apps that can support caregivers and clinicians in these arenas. Specifically, I’m looking for apps that:

  • Make it easy for families to maintain an accurate and up-to-date medication list. Ideally this would be easy even if the patient sees multiple providers or uses multiple pharmacies (both situations are common among the elderly). It should also be very easy to enter medications and dosages, as well as update the list.
    • What I really hope to find are apps that don’t require laborious  manual entry of long drug names and dosages. If I can snap a picture of a check, why can’t caregivers snap a picture of their prescriptions and have the medication entered into their list?
  • Make it easy for families to share the list with clinicians. I once had a young caregiver hand me her smartphone, so that I could copy the medication list. Which of course was not formatted for the use of clinicians. (All the meds were organized by “morning meds,” “noon meds,” “evening meds,” which is handy for the caregiver but a pain for the busy clinician.)
    • At a minimum, it should be easy to print a medication list that can be handed to a clinician. Paper is not yet so outdated; every doctor’s office is equipped to scan paper and enter into its electronic record system. 
  • Make it easy for caregivers to track the use of “as-needed” medications. A good tool should treat “as needed” medications differently from the others on the list. I would love to find something that encourages caregivers to note when these “as needed” medications are used. 
    • Bonus if the tool includes a little text field so that caregivers can note how the patient felt after using the medication. (We clinicians need to know whether we are getting successful symptom control or not.)
    • Big bonus if the tool can summarize how much “as needed” medication was used over a given interval, either via text or graphic. I have in the past had caregivers keep time charts to track when they gave pain medication for an elderly person with advanced arthritis, and then found myself laboriously counting how many doses in a day, in a week, all in order to adjust the person’s long-acting pain medication. Surely tech tools can make this a little easier for all involved.
What about features to remind a person to take their medication at specific times of day? I’m interested in this too, but honestly it’s less of a priority to me. This is because I’ve found that when it comes to helping an elder take daily medications, the physical set-up and the establishment of a daily routine end up being very important. Would a dinging device three times daily also help? Maybe. But it’s not what I most want to find for caregivers at this point.
Needless to say, any medication tool for use by older adults and caregivers should be usable by those who have 10+ medications on their list.
Last but not least, I’d like to find tools that are available for both iPhone and Android.
If you have come across any medication apps or tools that you think might meet my criteria, please comment or send me an email.