But…Why? A systematic look if patients actually adhere to your recommendations

 

Title: Patient Adherence to Dysphagia Recommendations: A Systematic Review
Authors: Krekeler, B., Broadfoot, C., Johnson, S., Connor, N., Rogus-Pulia, N.
Journal: Dysphagia
Year of Publication: 2018
Design Type: Systematic Review
Purpose: “The aim of this systematic review was to address this gap in knowledge by systematically evaluating current knowledge regarding patient adherence to dysphagia recommendations.”
Population: All populations of patients who were diagnosed with dysphagia or were being treated for swallowing-related impairments were included in this review
Inclusion criteria: Included interventions were required to have a component of self-delivery to allow examination of patient adherence
Exclusion criteria: Studies examining patient populations with advanced conditions causing moderately or severely reduced cognition; individuals that may require assistance to fully adhere to recommendations; studies that examined only interventions for gastroesophageal reflux disease (GERD), laryngopharyngeal reflux (LPR), or other gastrointestinal issues; papers that did not have some numerical quantification component of participant adherence to swallowing intervention/ recommendation(s); gray literature and abstract-only texts; papers focusing on staff or caregiver adherence; non-English texts


 

I can admit that I, like many, was one testy, smart-mouthed, complainy teenager. I remember constantly questioning “why” I had to do so many  little insignificant things in such a specific way (basically how my parental figures wanted). How much difference did it really make if I didn’t unroll my socks before throwing them in the laundry or if I accidentally forgot to put the cups and plates in a certain position when loading the dishwasher (this one actually stuck as I am now an anal-dishwasher expert🤣).

Yes, many of my moans, groans, and attitude typically arose from chore-related tasks among many other outlandish “life-demands” in a teenager’s mind. Like many can probably relate, my response to being told to do anything was often met with a “whyyyyyyy” in the most whiny pitch. If it didn’t involve my friends, teen TV soap dramas (#TheOC anyone?), or food, it didn’t fit in my world.

Fast forward to NOW: I am an adult and incorporate 100% of everything I am supposed to do (even if I don’t want to) 100% of the time😁.

giphy
(I almost aspirated trying to get through saying that)

YEAH RIGHT!!!

No, our patients aren’t whiny teenagers (most of the time). But the parallel of this walk down memory lane is that sometimes this is our expectation we place on our patients.

Is what we say usually justified and fair? Do we usually have some kind of rationale behind what we are recommending? Arguably yes (hopefully—if not, stop what you’re doing this second, unplug the TV and Google ASHA to read up on anything/everything to get your money’s worth! Then come back to finish this post 😉 )

But even when we DO have evidence on our side and maybe some fancy cool gizmos and gadgets to make the process less torturous and abstract, how many times do we still get either an honest answer of “no” or a what we know to be a half-a$$ truth from seeing the unopened packet of thickener or incorrect exercise after asking “Have you been doing your exercises/following the recommendations?” ???


 

How many times have you gladly given your sheet of exercises or recommendations for eating slowly or without distractions with a grin on your face knowing these changes can help your patient’s progress, all-the-while your patient or caregiver is left with a sad frown or even scowl as you walk away feeling like a superhero?

super

The authors hooked me in with the first line that is the core of the entire read:

“Adherence is a critical component of any treatment plan. To effectively achieve the desired result of a therapy intervention, the patient must participate in the recommended treatment, often independently without direct clinical supervision. Poor adherence to clinical recommendations may render evidence-based interventions ineffective, ultimately causing immense financial burden on the healthcare system as a whole.” p. 174

Sound familiar? Feel familiar?

Unfortunately, as a field we haven’t really looked too much into if what we’re saying is actually being followed or not (to be fair we’ve also been intensely focused on making sure what we say is evidence-based and doable 😉 ). While we may have a few handfuls of methods for managing and rehabilitating an impaired swallow including exercises from A to Z, different postures that mimic couture photoshoots, or modifications to a patient’s beloved cocktail or homemade cuisine, we can’t be with our patients 100% of the time to ensure they are done outside of our (often times limited) therapy sessions.

And if our top-notch plans aren’t being followed,

whats the point
*edited*

Maybe the overly dramatic teen in me is coming out, but when it comes down to it, we really are all on the same team, so it’s up to us to figure it out, and that’s just what this article attempts to do.


 

Before getting all excited thinking now you’ll be able to have all your patients finally follow what you’re saying–this article is NOT a “How-To” get your patients to adhere (wah-wah-waaah). Before we know ‘why‘ patients might not listen to our recommendations, first we need to examine if they even are or aren’t, and how many (which according to the authors has been looked at about as many times as doctors come observe our modified barium swallow studies 😉 . pico de gallo

What I found super savoryabout this article, was that not only was it an easy read (much less technical-jargon), but it also made me travel again down memory lane by reviewing the PICO method.

Nooo, not pico de gallo (now my Taco Tuesday cravings are kickin in though).

P-I-C-O. Remember learning about this in a Research Methods course or anytime a “hypothesis”/research question arose? Believe it or not, there is actually a rhyme and reason for it guys. Here’s the refresher:

PICO
https://www.asha.org/research/ebp/frame-your-clinical-question/ Checkout Resources for more specific help with Create Your PICO Question and EBP!

While the actual treat may taste better, the authors did a great job of breaking down the Who, What, and How regarding trying to find studies to review using this simple but often forgotten format (check out the article to see how they did it!).

They also provided an easy-to-read chart that breaks down their process after their Literaure Review and using MeSH° (quick reminder to make friends with any medical librarians who can be a invaluable source of information when trying to look for any research articles!!!!)


How many studies did they find?

After removing duplicate studies (579 from 2034), reviewing abstracts (1455), tossing out those that met their exclusion criteria (13)…………

“In our systematic review of the literature, we identified twelve full-text articles that reported and discussed patient adherence to recommendations in the treatment of dysphagia (Table 1).” p. 177

giphy-3

Think about that—-out of ALLLLLLLLLL the research we have had over the last 1-2 DECADES, ONLY 12 studies (had strong enough power) and actually tracked patient adherence!!!!!!!!!!!!

 

What kinds of patients/populations did the studies look at?

“In this review, nine of the twelve studies included head and neck cancer patients with dysphagia. The remaining three studies included patients who were diagnosed with dysphagia of varied etiologies.” p. 176

I initially thought it was interesting though not as surprising how the majority of the reviewed publications that actually tracked patient adherence focused on head and neck cancer populations. What’s your experience about this population being more susceptible to adherence for recommendations due to factors like motivation, severity, or despair?🤔🤔

The remaining populations within the studies luckily represent a fair portion of the typical patients/etiologies we see in our medical facilities—on that note, the settings within all studies but one were hospital-based (outpatient, inpatient, mix) with 1 exception of a mix between hospital+home-based.

On a brief nerd-sidenote: what a dream it could be to find out what % of interventions/recommendations are adhered to by SETTING (acute vs inpatient vs outpatient vs SNF vs HH ?!?!?!) I already have some hypotheses brewing!🤓🤔🤓

 

How old were the subjects in the studies?

“Including all studies that reported the age range and mean, the collective age range for this review was 21–94, and the mean was 60.4 years.” p. 176

grain of salt

Why? Because not only is the range of sample sizes within all the studies HUGE (6-497, average=78), but all the studies measured the ‘age’ label differently. In a nutshell, some decided to see the average amount of a handful of nuts, some averaged how many pistachios there were, how many pecans there were, then adding this up and averaging it again, and some only gave a give-or-take estimate of nuts. As my corny friends would say: “Does that sound nuts or what?”

 

But, how “good” were the studies they found?

chart2
*originally produced

Why this matters can easily be referenced at ASHA’s Levels of Evidence, or “You want me to stick what?! Where?!” The Truth about Pulse Oximetry” review, or be sure to Subscribe to SLP R&R to download a quick, 💥FREE💥 Cheat Sheet for what these type of studies mean 🙂 !

 

What were the recommendations in all the studies?

  • 8/12 looked at adherence to strength-based regimens for swallowing
  • 3/12 studies focused on diet modifications/compensatory strategy adherence
    • (Low, ShimLeiter & Windsor 1996 not found because of date?)
  • 1/12 study failed to give specific details of any therapy interventions

Anyone else suprised and pleased to see that more studies focused on strength when it came to adherence versus the overly-loved diet modifications/compensatory strategies?!?! (no love for the skill interventions though?🥺) #NOTDietPolice

 

How did the studies track “adherence” ?

(remember, they needed to have some type of quantitative measure)
  1. Average adherence rate” – via observations or ‘tallied’ exercise logs
    • participants either adhered or not ( a yes/no kind of grouping)

2. “Grouped adherence” – either adhered “fully” vs “partially” or in subgroups “high” vs “full

    • participants were grouped similar to the “Min-Mod-Max” levels of cueing/assistance/superivsion we so often use or see in therapy documentation

umm sure

 

 

Was basically my brain’s initial response after decoding all of that…….

 

The real meat and bones for us clinicians…

What can I do to help patients ‘adhere’ to recommendations and interventions???

Well, first let’s consider what we, as practicing clinicians, probably already know are some good signs that patients/families will not only “buy in” but actually continue without your presence:

  • support system
  • motivation
  • less anxiety/depression/psychosocial issues
  • finances/time

There are without a doubt more to add to this list, but before we “run to the research,” it’s also important to remember just how powerful and effective WE as clinicians are with good rapport and a foundational knowledge base. We know more than we think guys!!!🙆‍♀️.  On a final note, if you have extra time or a super good phone carrier, 2 other studies did utilize weekly phone calls in order to encourage participation 😉 .

The authors also systematically give you a simple chart to think about what your patients’ barriers may be:

  • denial
  • difficult tasks
  • remembering
  • pain
  • fatigue
  • “too busy”
  • questioning relevance
  • living at home
  • dissatisfaction with texture/taste
  • indigestion
  • social implications
  • depression

 


 

Now on to the goodies….

How many patients actually adhered in the studies?

“The average adherence rate to dysphagia recommendations from studies that reported an overall level of average patient adherence ranged from 21.9% for those patients considered to be ‘‘fully adherent’’ to 52% for those with ‘‘average adherence.’’ p.177

So, of the VERY LIMITED research evidence we have on patient adherence for dysphagia management, patients are “fully” compliant about 22% of the time, and “partially compliant” about 52% of the time… It’s like when you want a whole pizza, which would you rather choose: Being given 22% of the pizza with all the toppings you want, OR being given about half of the pizza, but with only one of the toppings you want.

that sucks

It sure does. I know we clinicians do soooo much to help our patients—from education, to training, to looking up research, to laughing at unfunny jokes, to speaking with a dozen different family members or staff who either don’t understand or may not be fully on board with our recommended treatment plan. Your guess is as good as mine, but I couldn’t help but let those figures feel discouraging :-/ .

On the flip side….

upside down frown“When comparing these averages to the average adherence reported in an extensive review of 569 healthcare-related adherence studies (24.8% adherence rate, range 4.6–100%), it appears that adherence to dysphagia recommendations is similar or higher than average. However, with only twelve studies identified in our search, it is abundantly clear that there is a lot more to learn about adherence to dysphagia recommendations within our field” p.177

Phew! Well, I guess  compared to general healthcare-related adherence (diet, medications, exercise regimen, etc.), apparently we’re at the same level or better!🤨🧐🤷‍♀️🤷‍♀️


At the end of the day,

What are clinicians to do?

Because all the studies the authors found dealt with different recommendations, with different populations, we can’t yet identify what is the “Golden Ticket” is for patients to adhere to recommendations. BUT, because half of the articles they reviewed looked at barriers/facilitators for adherence, they did leave us clinicians with some more specific things to consider and possible ways we can work together with our patients/families to get them to stick with it:

“Barriers identified are likely to vary depending upon the specific treatment modality. For example, ‘‘dissatisfaction with texture or taste’’ was related to a diet or liquid modification recommendation, while ‘‘difficulty in performing exercises’’ was specific to an exercise regimen.”

“According to the World Health Organization 2003 comprehensive report on adherence, the main barriers to adherence to patient-specific interventions in healthcare involve decreased education and skills in self-management, decreased motivation, and a lack of support to incur behavioral change.”

“While these barriers do not align one-for-one with the barriers identified in this review, many have similar themes such as low motivation and decreased self-management to complete a task (denial, task difficult, remembering).”

 

“Other reasons for non-adherence identified in areas of healthcare include forgetfulness, substance abuse, fear of disclosure, work and family responsibilities, lack of interest, lack of time, medical conditions, and family priorities.”

“Facilitators have been identified in other areas too, including flexibility in program timing, home-based exercises, exercises that are easy to perform, feeling of self-worth, seeing positive effects of medications, understanding the need of adherence, and use of reminder tools.” p.180

This begs the question: ‘Where do we go from here?

Should we start giving questionnaires to patients to fill out their motivation levels? Should we start having some kind of rating system to add up how many ‘points’ ⇒ “likelihood of adherence?” As clinicians, we have a part in this, we just need to discover what our role is!

A final thought for clinicians could be: Are we really doing all we can? Or are we giving a “homework packet,” saying what to do and when, then on our way? How can we tell if our patients “got it” or thoroughly understand the methods behind our recommendations and interventions? That last one is obviously open-ended and remains varied, but still something busy clinicians have to continue to grapple with day and night😓.

 

What are researchers to do?

To be completely honest, when it comes to patient adherence, I do believe that patient adherence needs to be included in research studies from now on so we can actually track this stuff (remember, only 12 studies looked at this in some way!) The authors luckily also provide some future directions for researchers and why tracking this topic is so important so we can all know that our recommendations and interventions are not only valid and evidence-based, but also actually practical and flexibile enough for patients to stick with it:

“In addition, this systematic review identifies a gap in knowledge on this topic: there are very few studies in a large body of literature examining dysphagia interventions that actually account for and report on adherence…Without these data, interpretation of outcomes and effectiveness of interventions are limited” p.181

“There are several areas that have yet to be explored. One specific topic that has received little attention is the relationship between dose of behavioral or exercise therapy and patient adherence. One study in our review discussed this specifically, saying that there is a ‘clear lack of consensus regarding optimal dose of swallow therapy and therefore acceptable compliance rates’…Dose frequency is cited by the World Health Organization as one of the top barriers to adherence in therapy interventions” p.180

“Further, theoretical modeling of adherence has yet to be fully explored. Experts insist that the use of theoretical modeling in adherence research is critical, yet understudied. An appropriate theoretical model for adherence to dysphagia therapy should be identified and explored to provide a better framework for understanding and improving” p.182

To all the researchers📢: I’m sure tons of scrubbed up, spoon-in-hand clinicians would love collect data for you on this!😃


 

Because this article really gave me more questions than answers, instead of going over the limitations for the reference article like sample bias or intervention/adherence tracking methods specificity, I’d like to share my dream world: where researchers and clinicians expansively collaborate to provide some handy tools to track patient adherence for their interventions and recommendations by some fun technologically-advanced app like SwallowIT® the authors mention. Clinicians are also able to determine how likely their patients are to adhere to an intervention from some diagram researchers fervently and humbly created.

Until my dreams become reality (although SwallowIT® app isn’t too far from the near future!?), clinicians and researchers have a lot to reflect on going forward in any setting and any study, where it looks like working together is the only logical solution at this point to not only tell our patients what will help them, but ensure they will continue it without us.

The article does a great job essentially shoving it down our epiglottis-flexing throats. It basically pushes the question to the very front, before any of our evidence-based treatment plans, recommendations, and slowly shrinking phrases “refusal” “non-compliant:”

Even if it’s the best 100% sure-fier intervention or approach, if a patient isn’t going to keep up with it or if it doesn’t happen OUTSIDE of a therapy session….does it even matter???


How can you use this article?!?

* Are you scratching your head why Mr. Smith hasn’t been doing his Mendelsohn’s since last week?

* Have you considered tracking how many of your patients are following through with recommendations or treatment plans?

* Have you observed or had success with specific methods to improve patient adherence, follow through, or “buy in?”

* Have you ever been told to follow a diet, exercise regiment from a medical professional, and complied 100% of the time? Why/why not??



Takeaways:

  • “Very little is known or understood about patient adherence recommendations in the field of dysphagia research. Considering how important patient adherence is to the success of many of these recommendations, it is a critical topic that must be addressed in future studies to improve patient outcomes and quality of life.”
  • “Internal patient-specific factors such as self-efficacy must also be considered..In lay terms, self-efficacy is the level of self-confidence someone has about their own ability to successfully complete a task, in this case the ‘‘specific task’’ would be follow-through with recommendations for management of dysphagia.”
  • “For patients with head and neck cancer, symptoms impacting swallowing may fluctuate throughout treatment, which may contribute to changes in adherence. In fact, one of the studies in our review showed how adherence to exercise decreased throughout treatment, from 70% at 6 weeks of intensity-modulated radiation therapy to only 38% adherence at 12 weeks…”
  • “Consequently, adherence rates from a head and neck cancer population are unique and cannot be readily generalized to other dysphagia-related conditions because of these distinct features.”


Article Referenced: [FREE ACCESS]

Krekeler BN, Broadfoot CK, Johnson S, Connor NP, Rogus-Pulia N. Patient Adherence to Dysphagia Recommendations: A Systematic Review. Dysphagia2018 Apr;33(2):173-184doi: 10.1007/s00455-017-9852-9. Epub 2017 Sep 30. PubMed PMID: 28965240; PubMed Central PMCID: PMC5866734.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5866734/pdf/nihms908125.pdf

 



♦♦ Also! Dr. Krekeler has had some even more recent (and IMO, more awesome🤩) publications since this review!!

◊◊ AND here’s a personal recommendation from Dr. Krekeler that gives “a deep dive into dose of exercise-based therapies to treat dysphagia and created a log of the current evidence to try and help clinicians think more critically about what exercises they are selecting and what dose to be prescribing to patients



Some more adherence goodies!!!

 

 

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