Perspectives on Swallowing and Swallowing Disorders (Dysphagia)

Volume 24, October 2015, Copyright © 2015 American Speech-Language-Hearing Association

Patient-Centered Dysphagia Therapy -The Critical Impact of

Self-Efficacy
Nicole Rogus-Pulia
Geriatric Research Education and Clinical Center, William S. Middleton Memorial Veterans
Hospital
Madison, WI
Department of Medicine, School of Medicine and Public Health, University of Wisconsin-Madison
Madison, WI

Jacqueline Hind
Clinical Affairs, Swallow Solutions
Madison, WI
School of Medicine and Public Health, University of Wisconsin
Madison, WI
Financial Disclosure: Nicole Rogus-Pulia is an advanced geriatrics fellow at the William S. Middleton
Memorial Veterans Hospital and adjunct assistant professor at the University of Wisconsin-Madison.
Jacqueline Hind is senior director, Clinical Affairs at Swallow Solutions and outreach program
manager at the University of Wisconsin.
Nonfinancial Disclosure: Nicole Rogus-Pulia has previously published in the subject area.
Jacqueline Hind has previously published in the subject area.

Recommendations for dysphagia management may include dietary modifications, postures,

maneuvers, behavioral strategies, exercise regimens, or alternative means of feeding (non-oral) — in
any number of combinations (Low, Wyles, Wilkinson, & Sainsbury, 2001). Patient adherence
refers to the patient’s ability to follow recommendations provided by his or her healthcare provider
(Martin, Williams, Haskard, & Dimatteo, 2005). In order to ensure avoidance of negative health-
related consequences including malnutrition, dehydration, and aspiration pneumonia, it is critical
that patients adhere to recommendations for management of their dysphagia (Low et al., 2001).
Several studies have suggested a high rate of patient non-adherence, ranging from 50 to 68%,
relative to dysphagia recommendations for thickened liquids and exercise regimens (Leiter &
Windsor, 1996; Mortensen et al., 2015; Rosenvinge & Starke, 2005; Shinn et al., 2013).
Before progressing to the various key issues surrounding this topic, it is important to
clarify the terminology of adherence. For decades, the term “compliance” was used to refer to how
often and accurately a patient followed recommendations. In a letter to the British Journal of
Clinical Pharmacology, Jeffrey K. Aronson, wrote that the term compliance, “betrays a paternalistic
attitude towards the patient on the prescriber’s part and that it should not be used” (Aronson,
2007). The term adherence more accurately and respectfully represents patient autonomy and the
ability of patients to be active participants in their course of treatment.

The Cost of Nonadherence

Nonadherence to a variety of medical recommendations is a risk factor for poor health
outcomes, including as many as 125,000 deaths per year (Christensen & Ehlers, 2002; Kane,
Huo, Aikens, & Hanauer, 2003; Martin et al., 2005). In addition to clinical ramifications, patient
nonadherence to medical recommendations carries a huge economic burden with yearly
expenditures estimated in the hundreds of billions of US dollars (DiMatteo, 2004; Martin et al.,
2005). Specific to patients with dysphagia, Low et al. (2001) performed a retrospective cohort
study of 140 patients who had videofluoroscopic studies over an 18 month time span. During
the study period, 86 patients survived while 54 subsequently died. Those who did not adhere to

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 recommendations had a greater number of hospital admissions due to chest infections or aspiration
pneumonia (22% vs. 1.5%; p < 0.001). Aspiration pneumonia was recorded as a definite or probable
cause of death in 26 (52%) of the 50 subjects who died (Low et al., 2001). Swallowing-related
quality of life has also been shown to be significantly associated with adherence (Shinn et al., 2013).

Self-Efficacy
There are a number of consistent factors shown to influence patient adherence to medical
recommendations that have been identified from the expansive body of literature on this topic,
with the patient’s level of perceived self-efficacy being critical (Martin et al., 2005). Hoffman writes
that “Perceived self-efficacy (PSE) is not a personality trait or even a positive outlook. Rather, PSE
refers to a person’s ability to implement situation-specific behaviors in order to attain established
goals, expectations or designated types of outcomes” (Hoffman, 2013). Perceived self-efficacy
(PSE) is a key component in social cognitive theory (Bandura, 1977) where personal attributes
are mediators of behavior (Marks, Allegrante, & Lorig, 2005a). Perceived self-efficacy (PSE)
involves three interrelated concepts: (a) having knowledge and insight into one’s own condition;
(b) possessing the skills necessary for the specified task; (c) having confidence in one’s ability to
self-motivate and draw upon the cognitive resources necessary to perform the task (Marks, 2001;
Marks, Allegrante, & Lorig, 2005a). Levels of self-efficacy for a particular task may vary between
individuals (Allegrante & Marks, 2003), and self-efficacy for one behavior may not predict self-
efficacy for another behavior (Marks et al., 2005a). The good news is that self-efficacy beliefs are
modifiable, and higher self-efficacy has been linked to improved adherence, health outcomes, and
quality of life (Marks et al., 2005a; Marks et al., 2005b).
The influence of higher levels of confidence on ability to self-manage symptoms are likely
underlying the positive outcomes presented above. Self-management involves tasks that are
necessary to live with one or more chronic conditions (Lorig, 2010). Interventions to improve self-
management that are based in self-efficacy theory have been shown to improve health behaviors
and status in patients with a variety of chronic diseases (Lorig et al., 1999; Lorig, Sobel, Ritter,
Laurent, & Hobbs, 2001).

Knowledge—Health Literacy
Following interviews with a group of nonadherent, independently eating patients with
dysphagia, Colodny (2005) was able to identify eight categories of reasons for nonadherence with
denial of a swallowing problem being one of the most common. Patient perception of illness is a
well-established determinant of adherence to medical treatment recommendations (Clark &
Becker, 1998). While denial of difficulty swallowing may reflect the patient’s attempt to cope with
a loss of control associated with the new diagnosis (Colodny, 2005), it may also reflect a lack of
insight into their dysphagia. It has been suggested that difficulties with patient nonadherence to
dietary and liquid modifications for dysphagia may be related to poor patient awareness of their
condition (Colodny, 2005; Parker et al., 2004; Rosenvinge & Starke, 2005).
Ensuring that patients have a clear understanding of their dysphagia diagnosis and the
knowledge necessary to manage their condition is critical. Shinn et al. (2013) examined adherence
to prophylactic swallowing exercises in a group of oropharyngeal cancer patients and identified a
lack of understanding regarding importance of the therapy as a top reason for nonadherence.
When providing patient education, clinicians must take into account the patient’s level of health
literacy. The Institute of Medicine Committee on Health Literacy (2004) defines health literacy as
the ability of individuals to process and understand basic health information required for making
health decisions. There are four levels of health literacy: below basic, basic, intermediate, and
proficient (Stevens, 2015). Low health literacy is thought to affect approximately 90 million
Americans (Berkman, Sheridan, Donahue, Halpern, & Crotty, 2011) with 59% of adults more
than 65 years of age at below basic or basic levels (National Center for Education Statistics,
2006; Stevens, 2015). Patients with low health literacy are more likely to demonstrate a lack of
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 understanding of medication usage, reading labels, instructions for taking medications, and
filling prescriptions (Stevens, 2015). It is also common for these patients to be labeled as
nonadherent when the issue is that they do not understand medical terminology and instructions
necessary for self-management and adherence to recommendations (Coleman et al., 2013; Stevens,
2015).
A recent systematic review by Berkman et al. (2011) examined whether low health literacy
is related to health outcomes, costs, and disparities. Results showed that low health literacy was
consistently associated with more hospitalizations; greater use of emergency care; poorer ability to
take medications appropriately and interpret health messages; and, among older adults, poorer
overall health status and higher mortality rates (Berkman et al., 2011). Results from the “National
Assessment of Adult Literacy” revealed that, at every increasing level of self-reported overall health,
adults had higher average health literacy than those in the next lower level (National Center for
Education Statistics, 2006).
Patients with low health literacy may also struggle to understand printed material
presented to them (Stevens, 2015). The average reading comprehension level in the United States
has been estimated to be at the seventh- or eighth-grade level (National Center for Education
Statistics; 2006; Zraick, Atcherson, & Ham, 2012). Therefore, health-related materials for adults
are recommended to be written at the fifth- or sixth-grade level (National Center for Education
Statistics, 2006; Zraick et al., 2012). Zraick et al. (2012) analyzed the readability of four commonly
used patient reported outcomes (PRO) questionnaires related to swallowing, the Eating Assessment
Tool-10 (EAT-10), the M.D. Anderson Dysphagia Inventory (MDADI), SWAL CARE, and the
Swallowing Quality of Life (SWAL QOL). Readability is defined by the “ease with which a person
can read and understand written materials” (Freda, 2005; Zraick et al., 2012). Results showed
that all four PRO questionnaires exceeded the recommended reading levels with one at a college
reading level, two at a tenth-grade reading level, and one at a ninth-grade reading level (Zraick
et al., 2012).
When considering health literacy, researchers over the past decade have broadened the
definition beyond a focus on patient’s reading skills alone to include speaking and listening skills
that will influence the oral exchange between health care providers and patients (Nouri & Rudd,
2015). Oral communication between providers and patients is known to impact patient’s knowledge
along with motivation, empowerment, and health, and is critical for appropriate management of
disease (DeWalt et al., 2011; Nouri & Rudd, 2015; Schonlau, Martin, Haas, Derose, & Rudd, 2011).
A recent systematic review by Nouri and colleagues (2015) revealed a significant discrepancy
between patient and provider oral literacy skills that creates a detriment to patient learning in
clinical situations with a high oral literacy demand (Nouri & Rudd, 2015).
With awareness of these issues related to health literacy and how they may impact the
effectiveness of patient education regarding dysphagia diagnosis and recommendations, it is
necessary for clinicians to consider ways to reduce the oral literacy demand in written materials
as well as oral communication with patients. While existing validated questionnaires should not be
modified as this may result in a change to psychometric properties, researchers attempting to
develop new patient-reported outcomes tools related to swallowing should consider the readability
levels (Zraick et al., 2012). When communicating with patients orally, following the Agency for
Healthcare Research and Quality’s (AHRQ) recommendations for the use of plain language will
help to support productive clinician-patient interactions (Nouri & Rudd, 2015). An informal literacy
screening in the form of several questions inquiring about the patient’s comfort level in filling out
forms (Morris, MacLean, Chew, & Littenberg, 2006; Wallace, Rogers, Roskos, Holiday, & Weiss,
2006) or use of a more formal literacy screen through short questionnaires such as the Rapid
Estimate of Adult Literacy in Medicine (REALM-R; Bass, Wilson, & Griffith, 2003) may guide the
clinician in ensuring the patient has a strong knowledge base regarding his or her dysphagia
(Zraick et al., 2012).

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 Skill Development — Motor Learning
Once a patient possesses the knowledge and insight into their swallowing deficits, they are
primed to begin the next step of dysphagia management which is acquiring the skills to compensate
for deficits and/or rehabilitate the swallowing mechanism. This often requires learning new motor
skills, such as a Mendelsohn maneuver or oropharyngeal strengthening. Motor learning has been
defined as “changes associated with practice or experience, in internal processes that determine a
person’s capability for producing a motor skill” (Schmidt & Wrisberg, 2008). There is a distinction
between performance during acquisition (e.g., while engaging in the skill) and performance during
retention/transfer (i.e., carryover to swallowing), both of which are integral to self-efficacy (Maas
et al., 2008). Generalization refers to when practice of one movement carries over to related but
untrained movement (e.g., isometric strength training affecting pressure generated during swallowing).
A feature of motor learning receiving much attention is feedback. Two types of feedback to consider
in treatment are “knowledge of performance” and “knowledge of results.” Knowledge of performance
refers to feedback provided by the clinician that delivers specific information on how a movement is
performed, or correction to the specific movement (i.e., “You need to hold your breath longer.”).
Knowledge of results refers to feedback regarding overall performance (i.e., “That was incorrect,
try it again.”). Some experts suggest that knowledge of performance is more critical early on in
treatment with knowledge of results playing a more important role as the patient is able to achieve
more control (Wulf, Lee, & Schmidt, 1994; Wulf, Shea, & Lewthwaite, 2010).
Overall, the goal in motor learning is to develop intrinsic feedback and self-monitoring.
In addition to the type of feedback, the amount of external feedback can impact success both
positively and negatively. If too little is provided, the patient may fail to make progress because
the method does not provide them with sufficient internal feedback. If too much external feedback
is provided, the patient will not be taxed sufficiently to enable development of internal feedback
loops. This can result in failure to take over the responsibility for independent processing. There
have been several studies that have compared generalized motor program (GMP) learning between
groups receiving various frequency regimens of feedback (50% vs. 100%). Reduced frequency of
presentation of knowledge of results repeatedly has been associated with increased GMP (Lai &
Shea, 1998).
In the current digital age, clinicians must consider the role of technology, and its unique
abilities to facilitate or hinder treatment and monitoring of patients with dysphagia. A study
by Czaja and colleagues (2006) reports findings from the Center for Research and Education on
Aging and Technology Enhancement (CREATE) on the use of technology among 1,204 community-
dwelling adults. They reported that the “digital divide” is more prevalent among minorities, those
who are older, and those who are less educated. They found the relationship between older age and
reduced adoption of technology was influenced by cognitive abilities, computer self-efficacy, and
computer anxiety (Czaja et al., 2006). In a meta-analysis of training methods for older learners,
self-pacing was identified as most accommodating because it allows older learners to internalize
the significance of the training and provides them sufficient time to complete the task and master
the content (Callahan, Kiker, & Cross, 2003). Self-pacing can be challenging for clinicians as they
practice in the world of payer sources limiting the number of sessions and ever-shortening lengths
of stay. However, clinicians who force too much information on patients too quickly, particularly
those who are older, may be rewarded with poorer outcomes and more frequent bounce-back
admissions due to inadequate understanding and nonadherence.

Confidence—Patient Activation
Along with acquiring knowledge of the condition and skills needed for self-management, the
last key piece in supporting patient adherence is confidence in the ability to carry out necessary
tasks. Each patient’s level of perceived self-efficacy will influence the degree to which they are
empowered or activated to self-manage their own condition and health care (Lorig, Laurent, Plant,

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 Krishnan, & Ritter, 2014). The concept of “patient activation” refers to the degree to which the
patient understands their need to play an active role in managing their own health and the extent
to which they feel able to fulfill that role (Hibbard & Mahoney, 2010). While a patient’s level of
activation is related to self-efficacy, it encompasses a broader range of elements beyond the
prediction of a single behavior in that it includes the knowledge, skills, and behaviors necessary
for overall health management (Hibbard, Stockard, Mahoney, & Tusler, 2004). Results of a recent
study by Greene et al. (2015) revealed associations between changes in patient activation levels
and positive changes in a variety of health outcomes as well as healthcare costs (Greene, Hibbard,
Sacks, Overton, & Parrotta, 2015). Given that self-efficacy and activation levels influence health
outcomes and that these constructs are shown to be modifiable, clinicians treating patients with
dysphagia would benefit from an understanding of their patient’s baseline self-efficacy and
activation levels specific to management of their dysphagia. Patients with lower activation levels for
health management as well as lower self-efficacy specific to swallowing-related tasks may require
more in-depth education regarding their deficits and closer follow-up to encourage adherence to
recommendations.

Other Factors Influencing Adherence: Caregiver and

Environmental Support
In order to gain the perspective of clinicians working with patients with dysphagia, King
& Ligman (2011) interviewed eight speech-language pathologists who identified several additional
factors likely to influence adherence to dysphagia recommendations, specifically level of support
from family and staff, especially in the case of patients with altered cognitive status, as well as
availability of resources (King & Ligman, 2011).
Facilitating an optimal environment for therapy follow-through requires clinicians to query
patients and care providers about how and when they plan to incorporate their recommendations
into their lives. Simple questions such as “Who prepares meals in your home? Where will you store
your therapy equipment? What time of day do you plan to do the exercises? Who else lives in your
home?” allow the clinician to help the patient/caregiver make a plan in advance. In one example,
a patient returned to the clinic two weeks after the initial action plan was in place, but had failed to
complete even one session of oropharyngeal strengthening. When asked why that was, the patient
reported that he was unable to identify a table in the home on which to set up the equipment.
Upon hearing that, the patient’s son spoke up and said he would help find an appropriate space.
From that point on, adherence was >90%.

Monitoring Adherence
Adherence to dysphagia management recommendations or rehabilitation programs is a
challenge as patients frequently are juggling a variety of directives for multiple aspects of their
health including medication regimens, testing protocols (i.e., blood glucose monitoring), and
follow-up visits. Self-report of therapy adherence can be unreliable, leaving clinicians to make
clinical judgments about treatment efficacy as a “best guess.” Was the therapy not effective or was
the patient not doing it?
A study comparing types of self-report with electronic measures in medication management
found that only 17% of self-reports were “highly concordant” with the electronic measure. Of most
relevance to dysphagia management was their finding that interview-based self-report was the least
concordant and that questionnaires and diaries had higher concordance with electronic data
(Garber, Nau, Erickson, Aikens, & Lawrence, 2004). Technology to objectively monitor and report
adherence with therapy recommendations is ideal and becoming more common, but often requires
some degree of patient acceptance, comfort, and understanding.

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 Strategies to Support Adherence-Action Planning
An understanding of how adherent a patient is to recommendations, along with the reasons
for nonadherence, including level of self-efficacy, is necessary for effective treatment planning
(see Figure 1). Nine primary characteristics of successful self-efficacy strategies for people with
chronic diseases adapted from Marks and colleagues (2005b; Allegrante & Marks, 2003; Dye,
Haley-Zitlin, & Willoughby, 2003; Hammond, Lincoln, & Sutcliffe, 1999; Lorig et al., 2001;
Marks et al., 2005b) are as follows:
1. use a variety of learning strategies—demonstration, practice, teaching
2. involve significant others
3. foster self-management of monitoring strategies in small steps
4. apply encouragement, persuasion and support (direct and indirect) – reinforce past
and present successes
5. foster self-appraisal and help the patient interpret how they are doing and feeling
6. use knowledgeable educators, multimodality teaching (i.e., written, oral) materials
7. incorporate individual and small-group interventions for collaborative and active
participation so that they may observe successful behaviors
8. allow for self-pacing of instructional time
9. consider the patient’s level of health literacy and effectiveness of written and oral
communication based on that level

Figure 1. The Path From Identifying Dysphagia Recommendations to Developing An Action Plan is
Multifactorial.

Implementation of these strategies will be useful along with creation of action plans that can be
used to support self-management of dysphagia (Lorig et al., 2014). While an action plan has been
defined as “an agreement between the clinician and patient that the patient will make a specific
change in behavior” (Handley et al., 2006), Lorig and colleagues (2014) have emphasized that
action plans should be conceived and owned by the patient making the plans. These plans should
be specific addressing the questions of what (e.g., performing swallow strengthening exercises),
how much (e.g., 10 repetitions per exercise), how often (e.g., 3 times per day), when (e.g., Monday,
Wednesday, and Friday), and should be short-term (set out only a week at a time; Lorig et al.,
2014). Patients should rate their confidence in accomplishing the plans on a scale of 1–10 and,
if confidence is low, patients can be asked about challenges or problems so that suggestions may

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 be offered by the clinician (Lorig et al., 1999). The clinician’s recommendations for a particular
regimen should be based on evidence for optimal outcomes. While the patient is in the “driver’s
seat” to make a plan, it is the clinician’s job to adequately explain why that particular regimen
is being recommended—the clinician is providing the road map and acting the role of “navigator”.
Part of that role is to educate the patient regarding other options or “other roads.” For example,
what are the consequences of completing the strengthening exercises less frequently?

Conclusions
In order to avoid negative health outcomes of dysphagia and ensure successful rehabilitation,
it is imperative that clinicians consider ways to enhance patient adherence to dysphagia treatment(s).
The patient’s level of self-efficacy will be key in their ability to manage their own dysphagia and
follow recommendations. In order to support adherence, clinicians should ensure that patients
have adequate knowledge, skills, and confidence for the necessary tasks as well as ample support
from their caregivers (if needed) and within their environment. Strategies to increase self-efficacy,
including the use of action plans, will help to improve communication between clinicians and
patients as well as to support patients in carrying out the necessary treatment(s) that will result
in improved swallowing function, quality of life, and overall health status.

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History:
Received April 20, 2015
Revised July 20, 2015
Accepted July 22, 2015
doi:10.1044/sasd24.4.146

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