Differences in the Intended Meaning of Congestion Between Patients and Clinicians

This survey study assesses otolaryngology patients’ definitions of congestion and compares these definitions with the terms used by clinicians.

Key Points

Question

Are patients and physicians communicating clearly when discussing the common complaint of congestion?

Findings

In this cross-sectional survey study of 59 clinicians and 226 patients, otolaryngologists often defined congestion in terms of obstructive symptoms, whereas patients often referred to pressure-related or mucus-related symptoms. Patients required a significantly greater number of terms to define congestion compared with otolaryngologists.

Meaning

The findings suggest that congestion is defined in a highly variable fashion and that patients and clinicians generally do not describe congestion using the same terms.

Abstract

Importance

Disagreement in the presumed meaning of common medical terms may impair communication between patients and caregivers.

Objective

To clarify the intended meaning of the term congestion among otolaryngology clinic patients and to identify discrepancies in definitions between patients and otolaryngologists.

Design, Setting, and Participants

In this cross-sectional survey study from an otolaryngology clinic at an academic center, a semantics-based questionnaire was provided to consecutive new patients during intake for a clinical encounter from December 2016 through February 2017, and to 31 otolaryngologists and 28 nonotolaryngologist physicians in February 2018. Respondent definitions for congestion were selected from a list of 16 proposed terms covering 4 general categories.

Main Outcome and Measures

Symptom categories for term used to describe congestion by patients and clinicians.

Results

Among 226 patient respondents (133 female [58.8%]; mean [SD] age, 54 [15.6] years), the most commonly selected definitions for congestion were from the obstructive (199; 88.1%) and mucus-related (196; 86.7%) symptom categories. More than 1 general category was selected by 208 patients (92.0%), whereas 11 patients (4.9%) described congestion only in terms of mucus-related symptoms. Definitions were limited to upper respiratory tract symptoms by 83 (36.7%) patients and lower respiratory tract symptoms by 2 (0.9%) patients. Among 31 otolaryngologists, congestion was most frequently defined in terms of obstructive symptoms (difference, 11.9%; 95% CI, 7.4%-16.5%). In contrast, patients more often described congestion in terms of pressure-related (difference, 38.8%; 95% CI, 7.5%-70.1%) or mucus-related (difference, 51.2%; 95% CI, 22.6%-79.9%) symptoms. A total of 22 otolaryngologists (71.0%) defined congestion using 1 to 4 symptoms, compared with only 69 patients (30.5%).

Conclusions and Relevance

The definition of congestion appears to be highly variable and ambiguous for many patients. Moreover, the findings suggest that patients and otolaryngologists generally do not describe congestion using the same terms.

Introduction

Effective communication between patient and caregiver is a cornerstone of optimal health care delivery. Besides the requirement of a shared language, communication requires agreement on the meaning of the words that are used. Certain words with a specific medical meaning may also appear frequently in the vernacular, raising the possibility that although patient and caregiver may both use the same word, their intended meanings may differ. This is especially problematic when the discrepancy is unrecognized by the caregiver, leading to confusion and posing an obstacle to effective care.

Patients presenting for otolaryngologic care often give a complaint of congestion. Congestion is defined in Stedman’s Medical Dictionary for the Health Professions and Nursing as “presence of an abnormal amount of fluid in the vessels or passages of a part or organ, especially of blood flow.”¹ It is derived from the Latin word congestio, meaning “a bringing together” or “a heap.” In medicine, the term is typically intended in the context of vascular congestion, which may affect any part of the body. For otolaryngologists, congestion is readily observed in the nasal mucosa, where accumulation of blood in submucosal vessels and sinusoids results in turbinate enlargement and mucosal edema.² Moreover, this pathophysiologic process is treated with decongestants, such as oral pseudoephedrine and topical oxymetazoline.^3,4

In contrast, the popular media and commercial marketing are rife with references to congestion, although it is unclear in many cases what disorder is actually being referenced. In pharmaceutical advertisements, claims of relieving congestion are applied to expectorants, mucolytics, antihistamines, corticosteroids, nonmedicated preparations, and the indirect sympathomimetic agents mentioned above.⁵ With such a wide variety of potential therapeutic agents, each with a different cellular target and mechanism of action, it is important that the condition requiring treatment should be clearly described. The use of ambiguous terms may hinder this process.

The primary aim of this study was to examine the intended meanings of the word congestion among patients presenting for evaluation in an otolaryngology clinic. We sought to identify variations in use and estimate the layperson’s definition of congestion. A secondary aim was to assess concordance of the patients’ definitions of congestion with those of otolaryngologists.

Methods

Study Participants

For this cross-sectional survey study, a survey was completed by consecutive patients presenting to a tertiary otorhinolaryngology clinic for nonurgent appointments from December 2016 through February 2017. All survey respondents were older than 18 years and able to read English. Demographic information was collected, including age, sex, race/ethnicity, and city and zip code of residence. The zip code was used to determine whether an individual resided in an urban or rural setting. A separate administration of the same survey was given to a sample of medical professionals, all of whom were clinicians with a medical doctorate degree, in February 2018. This sample included all faculty and resident trainees within 2 academic otolaryngology departments and a convenience sample of academic general practitioners attending an unrelated didactic conference. Data collection was approved by the Institutional Review Board of Ochsner Clinic Foundation, and verbal informed consent was obtained from all participants.

Survey Development

A preliminary list of survey items was compiled from informal discussions with patients and medical colleagues to capture a range of possible interpretations of the word congestion. This list was then subjected to focus group discussion and item reduction. Recognizing that congestion may refer to symptoms in both the upper and lower airways, the available responses were not restricted to 1 anatomic location, with the intention of capturing the intended meaning behind an unqualified vernacular term. The final survey had 16 items, which were arranged randomly in a 4 × 4 grid on the center of a piece of paper to reduce the likelihood of lead-item preference. Instructions were provided for the respondent to circle as many items as they required to answer the hypothetical question, “What is congestion?”

Although respondents were asked to select from a list of 16 terms, they were also allowed to write in any descriptive language that they might use to complete their definition of congestion. The 16 words and phrases included blockage of the nose, postnasal drip, difficulty breathing, stuffy nose, cold, facial pressure or pain, mucus or phlegm in the throat, cough, clogged ears, mucus or phlegm in the nose, throat clearing, headache, wheezing, runny nose, heaviness in the head, and mucus/phlegm in the chest. For the purpose of analysis, these words and phrases were assigned into 4 categories: obstructive symptoms, pressure-related symptoms, mucus-related symptoms, or other symptoms.

Survey Administration

Each patient was asked to complete the survey before entering the examination room. The surveys were then collected before initiating the clinical encounter. Each patient also completed the 22-Item Sinonasal Outcome Test (SNOT-22) and Nasal Obstruction Symptom Evaluation (NOSE) immediately after the study survey.^6,7

Frequencies of survey responses and the relationships between responses were analyzed. Patient responses were analyzed to identify patterns among the 4 general categories of symptoms (obstructive, pressure related, mucus related, and other) and demographic variables, including sex, age, and urban vs rural residence. Survey responses were analyzed to investigate trends with SNOT-22 and NOSE scores and to identify differences in actual sinonasal symptoms present at the time of the survey.

Clinicians were provided with the survey to complete during an academic conference during which time pressure would be at a minimum. A comparison among the clinician respondents (otolaryngology faculty, otolaryngology residents, and nonotolaryngology faculty) was carried out to identify whether these groups defined congestion similarly.

Statistical Analysis

SAS, version 9.4 for Windows (SAS Institute) was used to conduct all analyses. For descriptive statistic counts (percentages), means (standard deviation), and medians (quartiles), as appropriate, were reported. Bivariate analyses were conducted for differences between symptoms response (yes vs no) of each major category in age, sex (male vs female), race/ethnicity (white vs nonwhite), location of residence (urban vs rural), SNOT scores, and NOSE scores. Patients’ responses were compared with otolaryngologists’ responses, and otolaryngologists’ responses were compared with nonotolaryngologists’ responses. For each comparison, the frequency of response, effect size, and 95% confidence interval (95% CI) were reported. A heat map was generated by uploading anonymous matrix data files to Heatmapper,⁸ which calculated a pairwise distance matrix using euclidean measurement methods.

Results

A total of 226 patient surveys were completed as part of the study. Among the 226 patients completing the surveys, 133 (58.8%) were female and the mean (SD) age was 54 (15.6) years. Survey responses were tabulated for each individual item as well as for the 4 general categories (obstructive, pressure related, mucus related, and other). The largest effect of a respondent characteristic was found for sex, such that a definition related to obstructive symptoms was more frequently reported by women than men (difference, 35.4%; 95% CI, 31.3%-39.5%). Differences between men and women for the other responses were small. For race/ethnicity (white vs nonwhite), residence area (urban vs rural), and mean age, the magnitude of the differences in response frequency were not clinically meaningful for each symptom category. Differences in median SNOT-22 and NOSE scores reflecting the respondent’s current state of sinonasal health were not clinically meaningful for each of the 4 symptom categories, suggesting that symptoms experienced by the respondents at the time of survey administration had a minimal association with survey responses.

A symptom category was considered to be positive if 1 or more of the component definitions was circled by the respondent. The most common definitions for congestion were categorized as obstructive symptoms (199; 88.1%) and mucus-related symptoms (196; 86.7%), with descriptions of pressure-related symptoms being less common (146; 64.6%). More than 1 symptom group was represented in a majority of responses, with 208 patients (92.0%) reporting symptoms in more than 1 category. Only 18 (8.0%) reported symptoms limited to only 1 category, which was most frequently mucus-related symptoms. Only 1 patient (0.4%) described congestion solely in terms in the obstructive symptoms category. Obstructive and mucus-related symptoms were reported concurrently by 175 patients (77.4%), and obstructive and pressure-related symptoms were reported concurrently by 142 patients (62.8%).

Pairwise analysis showed that certain combinations of individual symptoms were more often reported together, most frequently blockage of the nose with stuffy nose, difficulty breathing with clogged ears, throat clearing with runny nose, and throat clearing with cough (Figure 1). Responses included 181 different combinations of individual symptoms, of which the most frequently occurring (2.2% of responses) was the combination of the 3 symptoms of mucus or phlegm in the nose, mucus or phlegm in the throat, and mucus or phlegm in the chest. Congestion was defined only in terms of upper respiratory tract symptoms by 83 patients (36.7%) and a combination of upper and lower respiratory tract symptoms by 141 patients (62.4%). In contrast, congestion was defined only as lower respiratory tract symptoms by 2 patients (0.9%).

Figure 1. Pairwise Frequencies of Symptom Terms Selected by Patients to Describe Congestion.

A total of 59 clinicians completed surveys, including 17 otolaryngology faculty members, 14 otolaryngology residents, and 28 nonotolaryngologist clinicians (Table). Congestion was defined by otolaryngology clinicians (faculty and residents combined) as obstructive symptoms (difference, 11.9%; 95% CI, 7.4%-16.5%) more frequently than by patients. In contrast, patients more frequently defined congestion as pressure-related symptoms (difference, 38.8%; 95% CI, 7.5%-70.1%), mucus-related symptoms (difference, 51.2%; 95% CI, 22.6%-79.9%), and other symptoms (difference, 49.4%; 95% CI, 13.7%-85.2%) than did otolaryngology clinicians. Frequency of categorical responses did not differ significantly between otolaryngology faculty members and residents. In contrast, categorical responses were different between otolaryngologists (faculty and residents) and nonotolaryngologist clinicians (Figure 2). Compared to otolaryngologists, nonotolaryngologists more frequently used terms related to pressure-related (difference, 25.4%; 95% CI, −3.6% to 54.5%) and mucus-related (difference, 63.4%; 95% CI, 39.8%-87.1%) symptoms in defining congestion. Both otolaryngologists and nonotolaryngologists uniformly included at least 1 term related to obstruction in their definitions of congestion.

Table. Comparison of Patient and Clinician Definitions of Congestion.

Symptoms	Patients, No. (%)	Clinicians, No. (%)			Difference, % (95% CI)a
		ORL Faculty	ORL Resident	Total ORL
Obstructive
Total	199 (88.1)	17 (100)	14 (100)	31 (100)	11.9 (7.4-16.5)
Blockage of nose	158 (69.9)	17 (100)	13 (92.9)	30 (96.8)	NA
Stuffy nose	165 (73.0)	17 (100)	14 (100)	31 (100)	NA
Difficulty breathing	104 (46.0)	10 (58.8)	7 (50)	17 (54.8)	NA
Pressure related
Total	146 (64.6)	6 (35.3)	2 (14.3)	8 (25.8)	38.8 (7.5-70.1)
Pressure in face	114 (50.4)	3 (17.7)	2 (14.3)	5 (16.1)	NA
Heaviness in head	80 (35.4)	2 (11.8)	1 (7.1)	3 (9.7)	NA
Clogged ears	99 (44.2)	4 (23.5)	1 (7.1)	5 (16.1)	NA
Mucus related
Total	196 (86.7)	5 (29.4)	6 (42.9)	11 (35.5)	51.2 (22.6-79.9)
Mucus in throat	117 (51.8)	1 (5.9)	0	1 (3.4)	NA
Mucus in nose	149 (65.9)	4 (25.5)	5 (35.7)	9 (29.0)	NA
Postnasal drip	81 (35.8)	0	1 (7.1)	1 (3.4)	NA
Cold	21 (9.3)	0	1 (7.1)	1 (3.4)	NA
Throat clearing	63 (27.9)	0	1 (7.1)	1 (3.4)	NA
Mucus in chest	110 (48.2)	3 (17.7)	0	3 (9.7)	NA
Runny nose	57 (25.2)	1 (5.9)	1 (7.1)	2 (6.5)	NA
Other
Total	119 (52.7)	1 (5.9)	0	1 (3.4)	49.4 (13.7-85.2)
Cough	60 (26.6)	0	0	0	NA
Wheezing	38 (16.8)	1 (5.9)	0	1 (3.4)	NA
Headache	72 (31.9)	0	0	0	NA

Abbreviations: NA, not applicable; ORL, otorhinolaryngologist.

^aBetween patients and total ORL clinicians.

Figure 2. Frequency of Individual Symptom Terms Used to Define Congestion by Otolaryngology (ORL) Faculty, ORL Residents, and Non-ORL Clinicians.

Both clinicians and patients most often included obstructive symptoms to describe congestion; however, patients more often described congestion in terms of pressure-related or mucus-related symptoms compared with clinicians (Figure 3). The frequency of reporting of individual symptoms differed significantly between patients and physicians for all symptoms except wheezing (16.8% vs 3.4%) and difficulty breathing (46.0% vs 47.5%). With regard to individual symptoms, the median number of individual symptoms used to define congestion was higher for patients than for clinicians (Figure 4). The median number of symptom terms used to define congestion was 6 (interquartile range, 4-8) for patients and 3 (interquartile range, 2-5) for otolaryngologists. Overall, 22 otolaryngologists (71.0%) defined congestion using 4 or fewer symptoms compared with 69 patients (30.5%).

Figure 3. Frequency of Individual Symptom Terms Used by Patients and Clinicians to Define Congestion.

Figure 4. Number of Individual Symptom Terms Used by Patients and Clinicians to Define Congestion.

Discussion

Diagnosis of sinonasal disorders is largely dependent on subjective reporting, but symptom descriptors used by the layperson may differ from those used by the medical professional. This introduces ambiguity to patient-physician communication, which is known to negatively affect patient satisfaction and outcomes.^9,10,11,12 Although there has been little written specifically about the term congestion, it is a familiar word that occurs in the vernacular and in medical encounters and forms a central line of questioning in the workup of common sinonasal diagnoses. Moreover, with the wide array of treatments to reduce congestion, many of which act through different physiologic mechanisms, it is necessary to establish a level of specificity in communication to facilitate comprehension of the symptoms for which a patient is seeking resolution.

Previous research has shown that congestion is the most bothersome symptom in patients with chronic rhinosinusitis.¹³ However, in light of the present study findings, it is unclear how such a report should be interpreted. Given the prominence of this term in the clinical history and diagnostic criteria of chronic rhinosinusitis and other conditions, clear communication is fundamental to ensuring that the patient is understood and the management plan is sound. Treatments that address nasal blockage and difficulty breathing may differ fundamentally from those that address postnasal drip, phlegm in the chest, throat clearing, headache, and heaviness in the head.

The present analysis found disagreement between patients and otolaryngologists on most definitions of congestion, suggesting the potential for misunderstanding and misdiagnosis in the clinical setting. In particular, although there was some agreement about the importance of obstructive symptoms, most often additional terminology and categories were required by patients to complete their definition. Selection of terms from a particular symptom category was not associated with differences in actual sinonasal health, as conveyed by SNOT-22 and NOSE scores, which suggests that survey responses were not influenced by manifest symptoms. Patients also required a greater number of symptom terms to convey the meaning of congestion compared with otolaryngologists. This finding could suggest ambiguity and uncertainty in the layperson’s perception of the meaning of the word congestion, whereas the clinician’s definition uses greater specificity.

A growing body of research points to improvements in patient outcomes when physicians practice patient-centered care.^11,12 Aspects of patient-centered care include establishing 2-way communication, exploring the disease experience in the context of lifestyle and personality, and finding common ground by agreeing on a treatment plan and diagnosis.^11,12 In addition to focusing on building a more therapeutic patient-physician relationship, solutions moving forward may include forms of advanced patient self-reporting technology to more accurately describe symptoms independent of patient education level or communication ability.¹⁴

Demographic and regional differences may be associated with the personal understanding of linguistic meaning.^15,16 In the present study, women more frequently described congestion in terms of obstructive symptoms. Although the reasons for this are unclear, hormonal differences may inform an individual’s perception of physical symptoms. Estrogen receptors in the nasal mucosa are believed to be more sensitive to histamine during menstruation and pregnancy, which suggests a potential physiologic basis for women and men to experience congestion differently.¹⁷ No differences in definitions were found with regard to reporting of symptoms in urban vs rural locations, although variations may become evident with more nuanced study of socioeconomic factors. For example, allergy has been shown to be inversely associated with rural location, meaning that one who lives on a farm may be less likely to experience allergic symptoms.¹⁸ Asthma has been shown to be more prevalent in city dwellers possibly owing to environmental exposures, such as vehicle emissions, dust mites, and pollution.¹⁹ As indicated in the survey results, both of these conditions encompass symptoms that may fall under an individual’s definition of congestion.

Variance in intended meaning may also occur among physicians, as suggested by the present results comparing responses between otolaryngologists and nonotolaryngologists. All clinicians surveyed agreed that obstruction is essential to defining congestion, but a significant proportion of nonotolaryngologists also included terms related to pressure or mucus. Further analysis showed no difference in responses between otolaryngology residents and faculty members, suggesting that disagreement may not be associated with the level of professional experience. Increased familiarity with the underlying causes of sinonasal disease, as well as idioms particular to otolaryngology training, may account for such discrepancies compared with nonotolaryngologists.

The findings of this study suggest the importance of clear communication between clinicians and their patients when eliciting medical history. Otolaryngologists may primarily interpret congestion as a type of nasal blockage, which would be at odds with the patient intending to convey their excessive nasal mucus or postnasal drip by using the same term of congestion. In addition, the otolaryngologist may have an unconscious bias toward interpreting symptoms in terms of the upper airway (nasal symptoms), failing to consider that the congestion being described by the patient could be intended to reference a lower airway symptom. If the term congestion is to remain in use in the clinical environment, care should be taken to qualify whether upper airway (nasal and throat) or lower airway (chest and lungs) symptoms are being queried. An even more preferable approach may be to avoid the term altogether in favor of specific terminology that is less ambiguous to the layperson, for instance, substituting nasal blockage or nasal stuffiness when the intention is to ask about airflow through the nose.

Limitations

Limitations are inherent to the present study design. Surveys inevitably lend themselves to several potential confounders, including limited participation, miscomprehension, hidden agenda, and response bias. Moreover, this survey has not been previously subjected to validation testing and was chosen in the interest of minimizing time commitment and boredom. The findings do not account for demographic differences among clinician respondents or their state of actual sinonasal health. In addition, regional variations in semantics are likely, and therefore the specific findings of this study may not be generalizable to other geographic regions. However, the broader finding that ambiguity exists in the definition of congestion and other medical terms is likely generalizable. Comparative analysis of the meanings of congestion and other commonly used otolaryngologic terms across a range of environments may be the subject of future study.

Conclusions

The present study found limited agreement between patients and otolaryngologists as to which symptoms or combinations of symptom terms define congestion. A substantial proportion of patients reported an intention to convey mucus-related or pressure-related symptoms, which is not necessarily in line with the presumed medical definition. Discrepancies may occur among clinicians as well, with otolaryngologists and nonotolaryngologists differing on the scope of the term congestion. These findings serve to raise awareness among all clinicians so that more effective communication may be implemented to improve patient care.