What Shapes Perceived Patient Understanding in Dysphagia and Voice Care? A Survey of Barriers and Facilitators

Abstract

Background/Objectives: Patient understanding during healthcare appointments is essential for positive health outcomes and effective healthcare delivery. There is limited research exploring patient understanding for patients with swallowing difficulties (dysphagia) and voice disorders, where treatment engagement is often low. Dysphagia and voice disorders can affect communication, nutrition, and quality of life; therefore, it is essential to understand how to support this population effectively. This exploratory study aimed to identify barriers and facilitators to perceived patient understanding in clinical settings. Methods: A survey was administered to adults receiving assessment results for dysphagia or voice disorders from a speech–language pathologist or laryngologist at outpatient clinics in Ontario, Canada. The survey included demographics, health literacy levels (HLS19) and facilitators and barriers to comprehension. Descriptive statistics and content analysis were used to summarize responses. Results: Twenty-nine participants completed the survey (mean age of 64; 38% identifying as women). Facilitators to perceived understanding included the use of clear language (83%), being encouraged to ask questions (76%), and prior knowledge of their condition (59%). Reported barriers included rushing (28%), using a fast rate of speech (21%), and receiving short explanations (17%). Additionally, emotional and environmental factors such as the clinic atmosphere (55%) and the nature of assessment results (45%) influenced perceived patient comprehension. Conclusions: These findings suggest the need for consistent use of patient-centered communication strategies. Recommendations for clinicians include slowing speech, avoiding medical jargon, encouraging patient questions, incorporating visual aids, and creating a supportive environment. Implementing these strategies may improve understanding and health outcomes for patients with dysphagia and voice disorders.

1. Introduction

Supporting patient understanding of medical information is foundational to high-quality healthcare. Misunderstandings may lead to reduced engagement with treatment, poor adherence to medication, or missed primary care and referral appointments [1,2]. Clear patient understanding is essential to patient-centered care, positive health outcomes, and the efficiency of the healthcare system [3].

Various factors have been identified related to the patient, healthcare practitioner, and clinical environment that can either facilitate or hinder patient comprehension [4,5]. Patient-related factors, such as low health literacy and limited education, contribute to poor understanding [2,4,5]. Modifiable healthcare practitioner factors, such as avoiding medical jargon and allowing ample time for discussion, can enhance understanding [4,6]. Visual aids and notetaking tools also support comprehension [5,7]. In addition, creating a comfortable clinical environment through optimal brightness and sound levels can improve a patient’s focus and retention of information [8,9].

Dysphagia (i.e., swallowing difficulties) and voice disorders significantly affect many aspects of health and quality of life (QoL); therefore, it is essential for patients to thoroughly understand assessment results and recommendations to reduce negative consequences [10,11,12,13]. Dysphagia impacts QoL by limiting participation in family meals and rituals, and by compromising nutrition and increasing the risk of pulmonary injury and aspiration pneumonia [13,14]. Similarly, voice disorders significantly affect verbal communication, self-expression, and self-perception [15]. Timely and effective healthcare interventions may help restore function and improve well-being for these patients. However, patient engagement with healthcare recommendations remains a significant challenge, with rates as low as 20–30% for dysphagia and voice therapies [2,16,17]. Dysphagia and voice-related conditions are commonly treated by speech–language pathologists (SLPs) and otolaryngologists (ENTs), who play a vital role in assessment and diagnosis, as well as education about the conditions, treatment options, and self-management strategies.

Despite the importance of identifying factors that influence patient understanding and engagement with treatment recommendations, research in dysphagia and voice disorder populations remains limited. To address the research gap, this exploratory study focuses on patients with dysphagia and voice disorders, aiming to expand available data and provide insight into the barriers to comprehension during clinical encounters. The purpose of this study was to: (a) identify self-reported facilitators and barriers to perceived understanding of medical information among patients with dysphagia and voice disorders; (b) assess the health literacy of patients with dysphagia and voice disorders; and (c) identify specific tools and modifications to assist in improving understanding.

2. Methods

2.1. Study Design

This exploratory survey study was approved by the Hamilton Integrated Research Ethics Board (#18109). The Equator Network’s Consensus-Based Checklist for Reporting of Survey Studies (CROSS) informed this study (Appendix A).

2.2. Recruitment

The target population consisted of adults with dysphagia or voice disorders who were undergoing an assessment from an SLP or ENT. Recruitment took place at two private practices and three outpatient clinics in urban areas of Ontario, Canada. Surveys were distributed within clinics over two months. The study included patients who were: (a) able to read, write, and understand English; (b) receiving assessment results from an SLP or ENT; and (c) aged 18 years or older. Participants who did not meet all inclusion criteria were excluded from the study. Participants had the option to complete the survey on paper or online via a secure REDCap platform. Informed consent was obtained from all participants.

2.3. Survey

A thirty-two-item survey was developed by the research team to identify facilitators and barriers to perceived patient understanding during voice and swallowing appointments (Appendix B). Eight questions were dedicated to demographic variables. The most common barriers and facilitators identified in the literature from related disciplines were used to develop survey questions [2,4,5,6,7,9]. Open-ended questions were also included, which allowed participants to reflect and share any personal insights and suggest changes to improve perceived understanding. For the purposes of this study, patient understanding refers to participants’ overall perceived comprehension of communicated information during the clinical appointment, including diagnosis, findings, and recommended treatment strategies. Completion of the survey was anonymous, and no identifiable data were collected.

The survey also included a health literacy portion based on the Measuring Population and Organizational Health Literacy (M-POHL) Short-Form Health Literacy Questionnaire (HLS19) [18]. This tool was originally developed to better understand health literacy in international populations and provide a classification of participants’ health literacy levels [18]. Before launching, the survey was pilot tested for feasibility and clarity by six individuals, and no subsequent changes were made.

2.4. Data Analyses

Descriptive statistics were used to summarize participant characteristics and survey responses. Continuous variables were reported using means and standard deviations, while categorical variables were summarized using frequencies and percentages. Perceived patient understanding was assessed using a self-reported percentage item, with responses recorded in predefined 25% intervals and summarized using frequencies. Health literacy scores were categorized according to HLS19 classification criteria (inadequate, problematic, sufficient, and excellent) [18]. Participants with incomplete health literacy data were excluded from analyses involving health literacy classification, while their remaining responses were retained for descriptive analyses. An inductive thematic analysis was used to analyze open-ended questions, with codes assigned to data elements and similar codes grouped to develop themes [19]. Themes were generated by the first author, then reviewed and iteratively refined by the second author and senior author to support the reflexive process. No statistical associations were formally tested.

3. Results

3.1. Participant Characteristics

Twenty-nine participants completed the survey (mean age of 64 ± 16 years; 38% [n = 11] identifying as women). Seventy-six percent of the sample identified as white (n = 22) and 76% had English as their first language (n = 22). Most participants were seen by an ENT (79%) and sought help for a voice-related concern (79%) (see

Table 1. Participant demographic variables.

	Frequency (N = 29)	Percentage (%)
Age Mean ± SD	64 ± 16
Health Practitioner
Speech–Language Pathologist	6	21
Otolaryngologist	23	79
Reason for Appointment
Swallowing Concern	6	21
Voice Concern	23	79
Gender Identity
Man	18	62
Woman	11	34
Self-Identified Racial or Ethnic Group
White	22	76
Black	1	3
Asian	2	7
Brazilian	1	3
Canadian	1	3
Iraqi	1	3
Latin European	1	3
Sexual Orientation
Heterosexual	14	48
Bisexual	1	3
Unanswered	14	48
First Language
English	22	76
Arabic	2	7
Cantonese	1	3
Italian	1	3
Portuguese	1	3
Romanian	1	3
Vietnamese	1	3
Highest Level of Education Completed
Some High School	3	10
High School Diploma, or Equivalent	6	21
Some College, No Degree	3	10
Associate Degree	4	14
Bachelor’s Degree	5	17
Master’s Degree	6	21
Doctoral or Professional Degree (e.g., PhD, MD, or JD)	2	7

for a full summary of participant demographics).

3.2. Health Literacy

Health literacy was evaluated using the HLS19 [18]. Thirty-four percent (n = 10) of participants were classified as having “excellent” health literacy, while 28% (n = 8) fell into the “problematic” range; none were classified as having “inadequate” health literacy (

Table 2. Health literacy classification using the Short-Form Health Literacy Questionnaire (HLS19).

Category	Score Range	Frequency (n = 29)	Percentage (%)
Inadequate	≤50	0	0
Problematic	>50 to ≤66.67	8	28
Sufficient	>66.67 to ≤83.33	6	21
Excellent	>83.33	10	34
Incomplete		5	17

). Participants with incomplete literacy data (n = 5) were excluded from analyses including health literacy classification. Other survey responses from these participants were retained and included in the analyses of facilitators and barriers. No imputation methods were used due to the exploratory nature of this study.

Participants’ self-reported understanding of information communicated during the appointment was grouped in 25% intervals. Three participants (10%) reported understanding approximately 50% of the information or less, eight participants (28%) understood 75% of the information, and eighteen participants (62%) reported understanding 100% of the information communicated to them during their appointment. When examining health literacy categories alongside self-reported understanding, a trend was observed in which participants with higher health literacy tended to report greater understanding. However, the trend was not strictly linear, as those in the “sufficient” and “excellent” categories reported similar levels of understanding (see Figure 1 for a visual representation of patient-perceived understanding and health literacy).

Commonly reported facilitators of perceived understanding included the clinician’s use of clear language (n = 24; 83%), being encouraged to ask questions (n = 22; 76%) and having prior knowledge of appointment information (n = 17; 59%) (see Figure 2 for the frequency of identified facilitators).

The most reported barriers to patient-perceived understanding included feeling rushed (n = 8; 28%), using a fast rate of speech (n = 6; 21%), and providing short explanations (n = 5; 17%). A visual summary of all barriers is presented in Figure 3.

3.3. Thematic Analysis of Open-Ended Questions

An inductive thematic analysis of the six open-ended survey questions revealed five primary concepts regarding what helped or hindered participants’ perceived understanding of their assessment results.

Proficient Communication Skills. The most common theme (11 responses) was clarity and use of strong communication skills by the treating clinician, demonstrating its impact as a facilitator to perceived understanding of the information communicated during the clinical appointment. Some participants highlighted helpful communication techniques used by clinicians, such as “speaking slow” and “explaining what tests [the clinician] is about to do”. Other participants indicated communication techniques that hindered their perceived understanding, for example, “difficulty hearing” or when the clinician used “difficult words”.

Limited Time During the Clinical Appointment. Time restrictions were a commonly reported barrier, with seven responses contributing to the theme. Participants noted that there were “many steps in [the] process, so not a lot of time for detailed explanations,” with others feeling that the clinician “didn’t answer all questions”. Additional responses mention that “the appointment could have been longer” and that the clinician used “too short of [an] explanation”.

Prior Knowledge. Prior knowledge and appointment preparation were identified as helpful facilitators (three responses). Participants noted that “a bit of research is helpful” and that they “had done helpful prior reading,” suggesting familiarity with the topic prior to the visit supported comprehension.

Use of Visual Aids. Participants noted that the use of visual aids, such as using “pictures” or aids to explain “how the voice works”, enhanced their perceived understanding of their appointment (two responses).

Credible and Reasonable Clinician. Participants referred to the clinician’s credibility and the use of strategies such as “looking at the pros and cons” as helpful in supporting their perceived understanding.

4. Discussion

This study aimed to explore self-reported facilitators and barriers to patient-perceived understanding during appointments with SLPs and ENTs for voice disorders and dysphagia. In our sample, clear language use, opportunity to ask questions and the patient’s prior knowledge of their condition were the most reported facilitators, while top barriers were feeling rushed, the clinician’s fast rate of speech, and providing short explanations. These findings may inform more effective strategies for ENTs and SLPs who are delivering assessment results.

Health literacy appeared to be related to higher perceived understanding. Although this relationship was not linear, participants with lower health literacy levels reported less perceived understanding of information communicated during the clinical appointment. This aligns with prior research indicating that lower health literacy is associated with poorer comprehension of healthcare information [20]. Health literacy is defined as “the degree to which individuals can obtain, process, understand, and communicate about health-related information needed to make informed health decisions” [21], p. 3. The Health Literacy Skills Framework (Figure 4) provides a lens to conceptualize this relationship. Within this framework, moderators, such as prior knowledge, resources, and Socioeconomic Status (SES), influence how individuals develop health literacy (first half), while mediators, such as access to care or clinician communication skills, explain how literacy affects health outcomes (second half) [22].

Difficulties in any of these areas may contribute to challenges in following, understanding, and applying clinical recommendations. In dysphagia and voice disorder populations, engagement is already known to be extremely low, and symptom management often depends on individuals following recommendations at home, such as dietary modifications and instructions for rehabilitation exercises [2,17]. The findings of our study emphasize the importance of adapting communication strategies to health literacy levels to promote effective care, including assessing health literacy in clinical appointments or using a universal design approach (visual aids and plain language) to bridge literacy gaps.

The most prominent facilitator influencing comprehension in our sample was the use of clear, non-complicated language. In a study by Salunkhe and colleagues (2024), the authors identified specific communication strategies used by ENTs that promoted patient engagement and supported shared decision-making [23]. Using plain language and a slower rate of speech can ensure patients from diverse backgrounds can easily understand and access information, representing a central mediator between health literacy and health outcomes [23]. Østen and colleagues (2021) also found that providing patients with written discharge instructions was not enough to lead to a full understanding, but that tailoring communication clearly to the patient by using strategies such as slowing speech, avoiding jargon, and structuring information logistically led to greater understanding [6]. Despite being well-documented strategies, Østen et al. (2021) found that these strategies were inconsistently used and may contribute to gaps in patient understanding, which is consistent with our findings [6].

In addition to simplifying language, encouraging patient questions was another key facilitator. Creating space and time for questions not only clarifies misunderstandings in real time but also creates a collaborative and trusting environment [6]. The broader educational literature emphasizes the importance of inquiry-based learning, where asking questions promotes deeper understanding and ownership of knowledge [24]. Research in other specialties supports the use of question-prompting strategies to enhance patient involvement and suggests the use of the ‘ask–tell–ask’ strategy to ensure the clinician can complement and clarify the patient’s understanding [25,26]. These strategies may be adapted to SLP and ENT settings to support patient understanding of clinical information and promote shared decision-making in clinical encounters.

Prior health knowledge of participants was the third most prominent facilitator in our sample. This finding aligns with Cox’s (2023) concept of grasping in clinical encounters, where new information is better understood when connected to existing knowledge [27], which reflects earlier theories of cognitive assimilation and accommodation described by Piaget [28]. When patients can contextualize new medical information within their own experiences or existing knowledge, they are more likely to not only comprehend it more fully but also retain it over time [28]. This is especially important for patients with dysphagia or voice disorders, where treatment success often depends on patients’ understanding and implementing recommendations in real-world contexts, such as dietary modifications, swallowing strategies, and voice use behaviors, which must be applied consistently outside of the clinical setting [14]. The role of prior knowledge also reinforces the link between health literacy and our findings, suggesting that individuals with prior health-related education or experience may be better equipped to understand complex medical information. While prior knowledge is not directly modifiable in a clinical appointment, it can be encouraged by providing patients with pre-appointment or follow-up materials. Additionally, a clinician can explore the patient’s existing knowledge during the appointment and then tailor explanations that better align with their understanding.

The most common barrier to perceived understanding was feeling rushed, echoing a broader systemic constraint in healthcare settings [29]. McGill and colleagues (2021) found that 70% of SLPs internationally have a waiting list and are being impacted by resource availability [30]. When clinicians rush through appointments, it may limit a patient’s ability to absorb information and ask questions, ultimately hindering their comprehension [31]. The speaking rate of the clinician was also an important factor identified in the literature; for example, Østen et al. (2021) found that a rapid pace reduced opportunities for patient engagement [6]. Acknowledging that this lack of resources and support globally has likely impacted patient understanding and health outcomes, there is a pressing need to address these systemic challenges [29]. System-level changes, such as longer appointment times, increased staffing, and hybrid communication models aimed at reducing clinician burden, may be necessary to enhance patient engagement and reduce the pressure for SLPs and ENTs to speak quickly to stay on schedule. Despite current resource challenges, clinicians can still support patient understanding by slowing their rate of speech, intentionally pausing for questions and using written or visual supports to reinforce information.

4.1. Clinical Implications

Dysphagia and voice clinicians should consider making minor modifications to their practice to improve understanding, by combining universal and tailored strategies, such as (1) screening for health literacy by using a verbal or written short assessment [32]; (2) applying a universal design by assuming low health literacy by default, offering patients thorough, clear explanations about their health, and creating time for questions [33]; and (3) two-way dialogues during consultations by prompting and supporting patient questions, which can enhance understanding and promote shared decision-making [25,26]. When additional appointment time is not feasible, clinicians could use frequently-asked-questions handouts or written summaries to reinforce information and address common patient questions [34].

4.2. Limitations

Several limitations need to be considered when interpreting the findings of this survey study. First, the small sample size (N = 29) substantially limits statistical power and generalizability of the results to broader and more diverse clinical populations. To mitigate the risk of overinterpretation, these findings should be interpreted as preliminary trends rather than definitive conclusions and placed within the context of the existing literature, as they may not reflect the full range of patient experiences across settings or demographics. Further, the self-reported nature of the survey introduces the risk of recall bias and social desirability bias. To help mitigate the risk of these biases, participants were assured of the anonymity of their responses and that their participation would have no impact on their care. Patient-perceived understanding was assessed using a self-reported percentage item, which may not accurately reflect comprehension and may be subject to bias. Additionally, self-reported measures may be subject to overestimation, as participants may perceive their understanding to be higher than their actual comprehension. Furthermore, the complexity, amount, or emotional impact of the information communicated during the appointment, or the clinician’s communication style, was not standardized nor measured, which may have influenced participants’ perceived understanding. Hearing status was not assessed, and age-related hearing loss may have influenced perceived understanding in this sample. While age data were collected, the sample size limited formal assessment of the relationship between age and perceived understanding. Additionally, the study did not include a control or comparison group, which limits our ability to determine whether the reported communication experiences are specific to voice-related conditions or reflect broader patterns across communication disorders. Finally, due to most responses coming from interactions with one ENT, the responses are not fully generalizable to all SLP and ENT appointments. This study design is an exploratory survey study, meaning the scope is intended to identify trends, rather than establish causality. As no inferential analyses were conducted, observed patterns should be interpreted cautiously as descriptive findings only. These results should be viewed as a direction for future investigations, involving larger, more diverse samples.

5. Conclusions

This study highlighted that, within our sample, patient-perceived understanding during clinical appointments for dysphagia and voice disorders was supported by facilitators such as clear communication and question encouragement. Barriers to perceived understanding, such as rushed environments and brief explanations, demonstrate the need for clinicians to adopt patient-centered approaches and integrate health literacy principles to improve equitable care. Clinicians may benefit from combining universal communication strategies with tailored approaches based on individual patient needs. These findings should be interpreted cautiously given the small sample size and the majority of voice patients seen by a single clinician, limiting generalizability. Future research should test specific communication interventions, such as slowed speech and teach-back, in real-world clinical settings, using objective measures (e.g., teach-back evaluations and comprehension quizzes) and larger, more diverse study populations to better evaluate patient understanding.