Patient Engagement Tip of the Month

Letty’s Story

“Letty” was 25 when she gave birth to her daughter Ember. She had a healthy pregnancy without complications and was anticipating the birth of her first child with her husband Tom. They read books, went to doctor's appointments, and took classes. Letty gave birth to a healthy baby: Ember.
 
36-hours later at home, Letty began to have flu-like symptoms, extreme exhaustion, and fainting spells. She knew she didn't feel well and shouldn’t feel so exhausted. Finally, she started to have extreme pain in the vaginal area to the point where she knew she needed medical care. Letty had an infection and died just days after delivery. 
 
Letty joined the estimated 700 women who die in the U.S. from pregnancy or delivery complications each year. If she’d known her symptoms were an indication of a potentially life-threatening infection, she could have sought medical care before it was too late. If Tom had been educated along with her on postpartum warning signs, he likely would have taken her in sooner. 
 
Maternal deaths have increased sharply across the country in recent years. In 2015, the U.S. maternal death rate was 26.4 per 100,000 per live birth (GBD, 2015). This rate is more than double the 1987 U.S. rate of 7.2 deaths per 100,000 births (CDC, 2016). 
 
We take action when we understand
As with any area of medicine people need to understand when to act. They often second-guess themselves and lose crucial hours. Or they lack education or support due to poor access to care. Medicaid eligibility for many low-income pregnant women may be unstable. Depending on their pregnancy status, income, and state eligibility rules, they may experience interrupted care and delayed access to services or loss of coverage as soon as 60 days after birth (Daw et al. 2017). 
 
Risk factors associated with insurance loss after delivery include Low English Proficiency at home, being unmarried, having Medicaid or CHIP coverage at delivery, living in the South, and having a family income of 100–185 percent of the poverty level (Daw et al. 2017). Therefore, people often don’t understand or retain the vast information they get at discharge. Add to that, each individual’s ability to understand is also influenced by culture, sleep deprivation, physical and emotional changes, and possible side effects of medications (Chugh et al., 2009; Roman et al., 2017). 
 
In this case, improved education about the postpartum experience could improve women’s ability to recognize if symptoms are normal or if they require medical attention (Suplee, et al. 2017). To help address this, Teresa lead a research team who talked with local parents, maternity nurses, and community health workers to get their insights into new mothers’ educational needs and the cultural appropriateness of health materials typically provided.
 
Her team worked with TCU’s future nurses and professor, Marie Stark, RNC, to update the new mother discharge materials typically distributed through hospitals and found online. The resulting new brochure prototypes – used language that was easy to understand versus “medical speak.” 
 
Next, an online symptom checker was created, called “What About Mom?” Parents can learn in simple terms about potential health warning signs and actions to take that could potentially save their own lives. The checker can also assist those who lack access to care or don’t seek prenatal/postnatal care.
 
The symptom checker also includes info for partners, who may be the first to recognize something is unusual or troubling. If mom seems overly exhausted, isn’t eating or feeling well, is sad or overwhelmed, or has concerning physical symptoms, there’s a lot partners can do.
 


The new tools tested well with new moms, community health workers and veteran OB nurses. Each group agreed that the information yielded better understanding and evoked action needed to address postpartum symptoms that could be life threatening.
 
October is Health Literacy Month. And all patients need to understand their conditions, procedures, and know when to call. Consider the education your organization provides both verbally, onilne, and in print. 

• Can your patients easily understand it and act on it? 
• Have you asked patients and families what could be clearer? 

• Medication - Can you read the medication label? Remember how to take your medication? Do you have the hand dexterity to open the container? How about numeracy and health literacy skills to understand the instructions?
• Memory - Can you successfully sequence self-care steps? Do you need a list or visual cues?
• Mobility - Can you sit or stand safely; get in and out of a tub?

1. Train family caregivers. This is definitely underutilized and can start during the hospital stay. Caregivers need a better understanding of their loved one’s health condition, as well as skills training.
2. Determine if patients can safely live independently, or if they need rehab or nursing care.
3. Address existing disabilities with assistive devices.
4. Perform home safety assessments before discharge and suggest modifications.
5. Assess cognition and the ability to physically manipulate things like medication containers. Provide training when necessary.
6. Work with physical therapists to increase the intensity of in-patient rehab.

1. Centers for Medicare and Medicaid Services. (2012b). Report to Congress: Post Acute Care Payment Reform Demonstration (PAC–PRD).Washington, DC: U.S. Department of Health and Human Services. Retrieved from http://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/Reports/downloads/Flood_PACPRD_RTC_CMS_Report_Jan_2012.pdf
    
2. A. T. Rogers, G. Bai, R. A. Lavin, G. F. Anderson. Higher Hospital Spending on Occupational Therapy Is Associated With Lower Readmission Rates. Medical Care Research and Review, 2016; DOI: 10.1177/1077558716666981

• This makes it much harder for them to participate in their recovery and rehab.
• It lowers their threshold for pain, and can create a pain-depression feedback loop.
• It increases morbidity and mortality.[1, 2]

• Studies recommend screening everyone for depression before procedures. This could also be used as an opportunity to both broach the topic with people and normalize it. [3]
• Educate patients and family caregivers about post-op depression so they can recognize it, report it, and put it in perspective.
• Help people understand what happens during surgery and set realistic expectations about recovery. Knowing what to expect reduces anxiety and gives people a sense of control. And less anxiety before surgery may mean less afterward.
• Screen for depression during follow-up visits and calls. 

Catch up with Geri this Spring at:

• Aging in America, April 15-17: engaging family caregivers in care transitions
• The PX Conference, April 3-5
• IHA Health Literacy Conference, May 1-3: capturing patient insights using the think-aloud protocol

1. Guerini F, Morghen S, Lucchi E, Bellelli G, Trabucchi M. Depressive symptoms and one year mortality among elderly patients discharged from a rehabilitation ward after orthopaedic surgery of the lower limbs. Behav Neurol. 2010;23:117–21. doi: 10.1155/2010/365341. [PMC free article][PubMed] 
 
2. Thombs BD, de Jonge P, Coyne JC, Whooley MA, Frasure-Smith N, Mitchell AJ, et al. Depression screening and patient outcomes in cardiovascular care: a systematic review. JAMA. 2008;300:2161–71. doi: 10.1001/jama.2008.667. 
 
3. Ghoneim, M. M., & O'Hara, M. W. (2016). Depression and postoperative complications: an overview. BMC surgery, 16, 5. doi:10.1186/s12893-016-0120-y 

• It normalizes asking uncomfortable questions. If you bring up questions about sex, hemorrhoids, or scars, people realize these must be common questions others have. It puts them at ease, and they feel more comfortable asking other questions.
• It lets them know you care about them and their concerns. They’re often incredibly grateful. It builds the relationship and can foster more intimacy.
• It can make the conversation more efficient – people don’t spend time dancing around their questions, building up courage, and figuring out how to broach a topic.
• It builds trust. When people see their caregivers get it and know what concerns them, they’re more likely to trust other information.  
• When you answer questions up front, they not hanging over people. So this can make it easier for them to focus on the rest of the conversation.

• Get up and walk
• Stop using nicotine in the weeks before and after surgery
• Avoid opioids

 
Obviously, people want to have a smooth recovery. And I kept explaining one of the reasons these things help with healing are because they improve blood flow. But most people were still a bit stymied. They think of their bones as needing calcium, but not blood. It seems like a different system. It just wasn’t clicking. So starting with a little more on how the bones need blood put that extra piece in place so it made sense.
 
People were surprised and confused by the recommendation to get a dental checkup before joint replacement surgery. Telling people that gum disease or things in their mouth could lead to an infection in a hip or knee joint didn’t resonate. But explaining that any bacteria in their mouth could travel through their blood to their new joint helped it come together.
 
Are there best practices or instructions people rarely follow?  
If so, take a step back and ask why it isn’t clicking for them. What’s missing in the explanation to them that we often take for granted? We forget what it’s like not to know the why or how of so many things we ask people to do.
 
Share your insights where you’ve seen it click for patients and families.
 

Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn
 

David Andrews

David’s Story

22 years ago I experienced a surprising weakness in my legs. At first, I thought it was a back problem, but it turned out to be neurological. The neurologist said he would have to do some research to figure out exactly what it was. But beyond my immediate symptoms and my parent’s medical history, he didn’t really ask me many questions.

I tried to figure out my own diagnosis based on my symptoms, history, and family history. Many of the possibilities were genetic, so family history was important. Association sites for specific diseases are usually helpful, but I didn’t know what I had. So I sought out medical websites intended for physicians. While it’s written for physicians, I could understand enough to make good use of the articles.

One possibility was something called: Lytico-Bodig. It’s only found only on Guam. But I had spent a year and a half on Guam in my youth, where my father was the acting head of a new teacher’s college. However, Lytico-Bodig was confined to one village and was only acquired from the food they ate which was found to contain a neurotoxin. So even though I had been to that village many times, I had never eaten their food. I told my neurologist about Guam. But he just said he’d have to research, we’d have to rule it out, it and didn’t ask me more about it.

Based on my family history and the timing and circumstances of my first symptoms, I thought I probably had something called: CIDP (a rare autoimmune peripheral neuropathy). There were 3 categories of treatments. And based on effectiveness research and side effects data, I had some thoughts on which treatment I’d prefer.

At our next meeting I told the neurologist my thoughts on CIDP.  He said, “No, no, there are hundreds of things that can cause your symptoms and we have to eliminate all of them.”  For the next several months that’s exactly what he did -- including testing for many conditions a second time.

I was referred to another neurologist with more expertise in my type of problem for a second opinion. He explained that some of the diagnostic tests can vary considerably depending on who does them. So he also repeated many of the tests, which took 2 more months. He added one (a biopsy of a nerve in the foot). And that biopsy confirmed my suspicion: that it was CIDP. So I finally began the treatment.

Unfortunately, the treatment only slows the progression of CIDP, it doesn’t reverse or treat existing symptoms. So the slow time to treat was time I couldn’t make up.

Of course, I could have been wrong -- patients often are.  But the physicians made little effort to learn what I knew about me.

How can we make patients and family members more effective contributors to the diagnostic team?

In David’s case -- there were clues that could have saved time and expense in reaching a diagnosis:

•       Family history beyond just his parents

•       Potentially relevant behaviors or trips abroad

•       The pattern of onset of symptoms

•       Major stressors in the weeks and months before onset

David tried to volunteer some of this information. And he was both motivated and able to make his way through some of the medical literature. But even as an engaged patient, he felt dismissed.  As though he should wait on the sidelines while tests were run.

Of course, there’s a continuum of patients: some want to show up and have the doctor figure out the problem and fix it. Others feel sure they know the problem and get frustrated when the doctor doesn’t seem interested in what they know. Regardless of where people are on the continuum, everyone needs to know their knowledge and participation is valuable and could contain important clues:

     What do you think might have caused this problem?

     What do you think you have?

     Did anything change in your diet, environment, or life before this started?

     Other than physical symptoms, has anything else changed?

How do you find out what your patients know about themselves that they don’t think to tell you?

Patients have critical information that can contribute to a more efficient and accurate diagnosis. The health care team’s can draw the patient and family into an active role and make sure they know and feel like part of the diagnostic team. Diagnosis can improve, be more timely, and everyone will feel a greater satisfaction that comes with a team working together.

Share your diagnostic success stories as you’ve partnered with patients to sleuth out what they have.

Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn
 

Co-author: Carly Thanhouser

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