Research

JAMA Otolaryngology–Head & Neck Surgery | Original Investigation

Speech and Communicative Participation in Patients

With Facial Paralysis
James H. Kim, BS; Laurel M. Fisher, PhD; Lindsay Reder, MD; Edie R. Hapner, PhD; Jon-Paul Pepper, MD

Invited Commentary
IMPORTANCE Problems with speech in patients with facial paralysis are frequently noted by page 693
both clinicians and the patients themselves, but limited research exists describing how facial Supplemental content
paralysis affects verbal communication.

OBJECTIVE To assess the influence of facial paralysis on communicative participation.

DESIGN, SETTING, AND PARTICIPANTS A nationwide online survey of 160 adults with unilateral
facial paralysis was conducted from March 1 to June 1, 2017. To assess communicative
participation, respondents completed the Communicative Participation Item Bank (CPIB)
Short Form questionnaire and the Facial Clinimetric Evaluation (FaCE) Scale.

MAIN OUTCOMES AND MEASURES The CPIB Short Form and the correlation between the CPIB
Short Form and FaCE Scale. In the CPIB, the level of interference in communication is rated on
a 4-point Likert scale (where not at all = 3, a little = 2, quite a bit = 1, and very much = 0).
Total scores for the 10 items range from 0 (worst) to 30 (best). The FaCE Scale is a 15-item
instrument that produces an overall score ranging from 0 (worst) to 100 (best), with higher
scores representing better function and higher quality of life.

RESULTS Of the 160 respondents, 145 (90.6%) were women and 15 were men (mean [SD]
age, 45.1 [12.6] years). Most respondents reported having facial paralysis for more than 3
years. Causes of facial paralysis included Bell palsy (86 [53.8%]), tumor (41 [25.6%]), and
other causes (33 [20.6%]), including infection, trauma, congenital defects, and surgical
complications. The mean (SD) score on the CPIB Short Form was 0.16 (0.88) logits (range,
–2.58 to 2.10 logits). The mean (SD) score of the FaCE Scale was 40.92 (16.05) (range,
0-83.3). Significant correlations were observed between the CPIB Short Form and overall
FaCE Scale scores, as well as the Social Function, Oral Function, Facial Comfort, and Eye
Comfort subdomains of the FaCE Scale, but not with the Facial Movement subdomain.

CONCLUSIONS AND RELEVANCE Patients with facial paralysis in this study sample reported
restrictions in communicative participation that were comparable with restrictions Author Affiliations: Keck School of
experienced by patients with other known communicative disorders, such as laryngectomy Medicine, University of Southern
California, Los Angeles (Kim);
and head and neck cancer. We believe that communicative participation represents a unique
Department of Otolaryngology–Head
domain of dysfunction and can help quantify the outcome of facial paralysis and provide an and Neck Surgery, Keck School of
additional frame of reference when assessing treatment outcomes. Medicine, University of Southern
California, Los Angeles (Fisher,
Reder); Department of
Otolaryngology–Head and Neck
Surgery, University of Southern
California Voice Center, Los Angeles
(Hapner); Division of Facial Plastic
and Reconstructive Surgery,
Department of Otolaryngology–Head
and Neck Surgery, Stanford
University Medical Center, Stanford,
California (Pepper).
Corresponding Author: Jon-Paul
Pepper, MD, Division of Facial Plastic
and Reconstructive Surgery,
Department of Otolaryngology–Head
and Neck Surgery, Stanford
University Medical Center, 801 Welch
JAMA Otolaryngol Head Neck Surg. 2018;144(8):686-693. doi:10.1001/jamaoto.2018.0649 Rd, Stanford, CA 94305 (jpepper
Published online June 28, 2018. @stanford.edu).

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 Speech and Communicative Participation in Patients With Facial Paralysis
F
acial paralysis alters facial appearance, affects the pa-
tient’s ability to express emotions, and may cause oral
incompetence, difficulty manipulating a food bolus, and
problems with articulation of bilabial sounds. It has been well
established that these sequelae of facial paralysis signifi-
cantly affect daily living and have an adverse influence on qual-
ity of life.1-7
Although problems with speech in patients with facial paraly-
sis are commonly noted by clinicians and the patients themselves,
there has been limited research into how facial paralysis affects
the broader concept of communication. A recent study by Mové-
rare et al8 reported significantly decreased lip force, which
impaired articulation of labial consonants and speech intelligi-
bility (particularly with labial consonants) among patients with
facial paralysis, highlighting the detrimental effects of facial pa-
ralysis on speech production. However, the ways in which prob-
lems with speech in individuals with facial paralysis influence
communicative function and quality of life are still poorly under-
stood. Although several instruments have been developed to as-
sess facial function and quality of life in patients with facial pa-
ralysis, the most commonly used instruments in practice today
assess deficits in communication only peripherally.9-13
In addition to difficulties in mechanical speech production
due to impaired facial movement, the influence of facial paraly-
sis on communication is far reaching and likely has many physi-
cal, psychological, and environmental factors contributing to de-
creasedcommunicativefunction.8,14 Wehypothesizethatpatients
with facial paralysis experience a global dysfunction in commu-
nication that significantly restricts their participation in circum-
stances requiring verbal communication. As such, we sought to
examine the influence of facial paralysis on communicative par-
ticipation. Communicative participation is defined as “taking part
in life situations in which knowledge, information, ideas, or feel-
ings are exchanged.”15(p1191) Restrictions in communicative par-
ticipation can affect multiple domains of life, including personal
care, employment, and community engagement, and reflects a
significant area of functioning and disability. An evaluation of
communicative participation specifically addresses aspects of
communication that are required in various life situations and re-
flects a person’s ability to fulfill his or her life roles.16
The purpose of this study is to investigate the influence of fa-
cial paralysis on communicative participation as measured by a
validated, patient-reported outcome measure, the Communica-
tive Participation Item Bank (CPIB) Short Form questionnaire.16
Secondarily, we sought to examine associations between com-
municative participation and patient characteristics. Finally, we
explored associations between communicative participation and
a facial paralysis–specific quality-of-life assessment instrument,
the Facial Clinimetric Evaluation (FaCE) Scale.11
Methods
Participants and Data Collection
A nationwide online survey of adults (age ≥18 years) with self-
reported facial paralysis was conducted from March 1 to June 1,
2017. Participants reporting bilateral facial paralysis were excluded
from this study. This study was approved by the University of
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Original Investigation Research
Key Points
Question What is the influence of facial paresis or paralysis on
speech and communicative participation?
Findings In this nationwide online survey of patients with
unilateral facial paresis or paralysis, respondents reported
restrictions in communicative participation that were comparable
with restrictions experienced by patients with known causes of
communication disorders, such as laryngectomy and head and
neck cancers.
Meaning Impaired communicative participation may represent a
unique domain of dysfunction in facial paralysis; measurement of
communicative participation can help quantify the influence of
facial paralysis on daily living as well as provide an additional frame
of reference when setting goals of care and assessing outcomes of
treatment.
Southern California Institutional Review Board (HS-17-00086).
The need for informed consent was waived by the University of
Southern California Institutional Review Board owing to limited
risk and the use of a deidentified data set.
All participants were recruited through the websites and
social media outlets for the Acoustic Neuroma Association and
the Facial Paralysis & Bell’s Palsy Foundation, necessarily re-
stricting the conditions examined to patient self-report of these
diagnoses. An open access link that directed participants to an
online REDCap (Research Electronic Data Capture) survey por-
tal was posted to the respective webpages. All responses were
recorded through an encrypted REDCap online database.
CPIB Short Form
To assess how the participants functioned in various commu-
nication settings, all participants completed the CPIB Short
Form.16 The CPIB Short Form is a 10-item instrument derived
from a longer, 46-item question bank and is intended for use
in a clinical setting. The authors of the CPIB reported a strong
correlation (r = 0.971) between the full-length CPIB and the
CPIB Short Form and suggested that scores from the short form
are nearly identical to the scores on the full-length item set.16
The CPIB Short Form was designed to measure the amount
of interference that community-dwelling adults with various
speech-related disorders experience while conversing or en-
gaging in discussions with various audiences.16 The CPIB was
selected to assess everyday communication to provide a broad
overview of function, encompassing many factors, such as situ-
ational context and speaking partners.15 The CPIB is not spe-
cific for assessment of any one communication disorder; it is
applicable across a broad range of communication disorders,
allowing the ability to compare restrictions in communica-
tive participation among different pathologic conditions.
In the CPIB, the level of interference in communication is
rated on a 4-point Likert scale (where not at all = 3, a little = 2,
quite a bit = 1, and very much = 0). Total scores for the 10 items
range from 0 (worst) to 30 (best). Higher scores are more fa-
vorable, as they reflect higher levels of communicative par-
ticipation and, conversely, lower levels of interference with
communication. The authors used Item Response Theory to
687
 Research Original Investigation Speech and Communicative Participation in Patients With Facial Paralysis

ences on the CPIB Short Form by demographic variables were

Table 1. Study Demographics
assessed using analysis of variance, with age as a covariate. Fi-
Characteristic No. (%) nally, the associations between FaCE subscales and CPIB were
Sex
evaluated using Pearson correlations. Partial η2, describing the
Male 15 (9.4) proportion of variance attributable to the factor, is reported by
Female 145 (90.6) main effect, and 95% CIs are reported for mean differences.17
Age, mean (SD), y 45.1 (12.6) To interpret the partial η2 effect sizes, a value of 0.0099 is con-
Self-reported facial palsy duration, y sidered a small effect size, 0.0588 a medium effect size, and
<1 19 (11.9) 0.1379 a large effect size.18
1-2 14 (8.8)
2-3 27 (16.9)
>3 100 (62.5)
Results
Self-reported cause of facial paralysis
Bell palsy 86 (53.8) Sample Characteristics
Tumor 41 (25.6) During the 3-month study period, 257 responses were
Other 33 (20.6) recorded. Responses with incomplete data (n = 86) and
Self-reported prior treatments those reporting bilateral facial paralysis (n = 11) were
Yes 25 (15.6) excluded. A total of 160 participants were included in the
No 135 (84.4)
study. Most respondents were female (145 [90.6%])
(Table 1). There were too few men in the sample to analyze
for differences by sex on either instrument. The mean (SD)
create this shortened 10-item scale with a single dimension. age of study participants was 45.1 (12.6) years (range, 18-78
Conversion of the numerical score into logits is recom- years). Most participants indicated that their facial paralysis
mended, as is customary in Item Response Theory applica- had lasted for more than 3 years. The most common self-
tions. However, to calculate correlations between the CPIB reported c ause of facial paralysis was Bell palsy (86
and FaCE instrument, total CPIB scores (nonlogit) were [53.8%]), followed by tumor (41 [25.6%]) and other causes
used. (33 [20.6%]), which included infection, trauma, congenital
defects, and surgical complications. Twenty-five partici-
FaCE Scale pants reported prior treatment for facial paralysis; treat-
Participants were also asked to complete the FaCE Scale, which ments included nerve transfers, muscle transfers, eyelid
is a disease-specific, patient-reported outcome measure that weights, hyaluronic acid fillers, and facial implants.
assesses self-perception of overall functioning and quality of
life in patients with facial paralysis.11 The FaCE Scale is a 15- FaCE Results
item instrument that produces an overall score ranging from The overall mean (SD) score of the FaCE Scale was 40.92 (16.05),
0 (worst) to 100 (best), with higher scores representing better with scores ranging between 0 and 83.3 (Table 2). The overall
function and higher quality of life. In addition to the overall multivariate analysis of variance of the FaCE subdomains by
score, the FaCE Scale produces scores in 6 subdomains: Fa- prior treatment (yes or no), duration of condition, possible
cial Movement, Facial Comfort, Oral Function, Eye Comfort, cause, and current age as a covariate showed that age was not
Lacrimal Control, and Social Function. a significant covariate (partial η2 = 0.051). Overall, prior treat-
ments (partial η2 = 0.122) and possible cause (partial η2 = 0.125)
Demographic Data accounted for variation on FaCE subscale mean scores (eTable
Self-reported participant demographics (current age, sex, cause 1 in the Supplement). Simple effects analysis showed that hav-
of facial paralysis, duration of facial paralysis, and prior treat- ing received prior treatment was associated with lower scores
ment for facial paralysis) were also surveyed. Respondents in- in Oral Function, Eye Comfort, and Social Function subdo-
dicated the duration of facial paralysis in the following 4 cat- mains (eTable 2 in the Supplement). Simple effects analysis
egories: less than 1 year, 1 to 2 years, 2 to 3 years, or more than showed that possible cause was significantly associated with
3 years. the mean scores for the Facial Movement, Facial Comfort, Oral
Function, and Eye Comfort subscales (eTable 3 in the
Statistical Analysis Supplement).
All data analysis was completed using SPSS, version 24.0 (IBM Bonferroni-corrected simple effects of possible cause on
Corp). Descriptive analyses were completed for demographic each of the FaCE subscales showed a complex pattern of re-
data, including means, ranges, and SDs for continuous vari- sults. For the Facial Movement subscale, patients with tu-
ables and frequencies for categorical variables. Differences on mors were more impaired relative to those with Bell palsy but
the FaCE Scale and subdomains by demographic variables (sex, were no different from patients with other causes of facial pa-
cause of facial paralysis, and prior treatment) were assessed ralysis. Conversely, on the Facial Comfort subscale, patients
using multivariate analysis of variance, with age as a covari- with tumors had less impairment relative to those with Bell
ate. If significant, a one-way analysis of variance was per- palsy but were no different from patients with other causes of
formed to identify the main effect for each domain. Differ- facial paralysis. On the Oral Function subscale, patients with

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 Speech and Communicative Participation in Patients With Facial Paralysis Original Investigation Research

Table 2. Summary of Results of the FaCE Scale and CPIB Short Form

Score, Mean (SD)

Characteristic No. FaCE CPIB, Logits
Sex
Male 15 44.44 (11.96) 0.23 (0.84)
Female 145 40.55 (16.41) 0.16 (0.88)
Duration of facial paralysis, y
<1 19 40.26 (21.83) 0.05 (1.01)
1-2 14 41.19 (14.00) 0.13 (0.93)
2-3 27 40.68 (15.93) −0.02 (0.79)
>3 100 41.07 (15.32) 0.24 (0.87)
Possible cause
Bell palsy 86 40.04 (15.96) 0.14 (0.88)
Tumor 41 39.43 (15.39) 0.03 (0.88)
Other causes 33 45.05 (16.90) 0.39 (0.83)
Prior surgical treatment
Yes 25 35.33 (16.78) 0.004 (1.01)
No 135 41.95 (15.76) 0.19 (0.85)
Age range, y
<20 1 23.33 −1.10
20-29 20 46.58 (16.73) 0.22 (0.58)
30-39 30 44.00 (15.10) 0.12 (0.99)
40-49 49 38.50 (16.65) 0.30 (0.84)
50-59 36 40.69 (16.64) 0.32 (0.92)
60-69 19 37.46 (13.50) −0.37 (0.89) Abbreviations: CPIB, Communicative
Participation Item Bank; FaCE, Facial
70-80 5 41.67 (16.03) −0.07 (0.31)
Clinimetric Evaluation Scale.

other causes of facial paralysis had significantly better scores
than patients with Bell palsy and those with tumors. Finally,
on the Eye Comfort subscale, patients with tumors were more
impaired relative to those with Bell palsy and other causes of
facial paralysis (eTable 3 in the Supplement).
CPIB Results
The overall mean (SD) score on the CPIB Short Form for the
study sample was 0.16 (0.88) logits (range, –2.58 to 2.10 log-
its) (Table 2). Univariate analysis of variance by prior treat-
ment (yes or no), duration of condition, possible cause, and
current age showed no significant effects, indicating that the
mean CPIB Short Form scores did not differ by disease factor
or age (corrected R2 = 0.012).
Association Between the CPIB and the FaCE Scale
A significant Pearson correlation was observed between
total CPIB score and total FaCE scores (r = 0.47) (Table 3),
which represents approximately 22% variance shared
between the 2 instruments. Higher scores are indicative
of higher function for both the CPIB and FaCE Scale, indi-
cating that the better a respondent rated his or her facial
function, the better communication participation he or she
perceived.
When examining the association between total CPIB score
and the FaCE subdomains, statistically significant correla-
tions were observed for the Facial Comfort, Oral Function, Eye
Comfort, and Social Function subdomains. No associations
were found between the total CPIB score and the Facial Move-
ment or Lacrimal Control subdomains (Table 3). Also re-
ported in Table 3 are the intercorrelations among the FaCE sub-
scales, indicating good coherence among the subscales, with
several exceptions: the Lacrimal Control subscale seems to pro-
vide different information than the other subscales and the Fa-
cial Movement subscale is not related to the Facial Comfort
subscale.
Discussion
Facial paralysis is well known to cause a variety of functional,
aesthetic, and psychological consequences. Several studies
have demonstrated that facial paralysis significantly affects
quality of life.1-3,5-7 However, there is only limited research that
examines the influence of facial paralysis on speech and func-
tional behaviors, such as communication.8 We report a large
internet survey of persons with self-reported facial paralysis
and their responses to a validated instrument, the CPIB Short
Form, assessing the interference of facial paralysis with
communication.
The results of this study suggest that at least some pa-
tients with facial paralysis experience significant restriction in
communicative participation as reflected by their CPIB Short
Form scores. To provide a context for these findings, we com-

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 Research Original Investigation Speech and Communicative Participation in Patients With Facial Paralysis

pared our results with prior research examining communica-

0.26 (0.10 to 0.41)

tive participation in patient samples with known communi-
cation disorders. A study by Eadie et al19 that examined com-

1 [Reference]
municative participation in patients who had undergone a
total laryngectomy reported levels of communicative partici-
pation (CPIB Short Form mean [SD] score, 0.60 [0.88] logits)
NA
NA
NA
NA
NA
7

that were comparable with the facial paralysis sample in this

study. Similarly, other studies examining communicative

−0.04 (−0.20 to 0.13)

0.32 (0.16 to 0.46)
participation in other patients (including those with head and
neck cancer, multiple sclerosis, and amyotrophic lateral scle-
1 [Reference]

rosis) using a longer, 46-item version of the CPIB reported

levels of communicative participation that were also compa-
rable with the facial paralysis sample represented in this
NA
NA
NA
NA
6

study.20-22 A comparison of communicative participation

between these samples is shown in the Figure.19-22 Although
0.14 (−0.03 to 0.29)
a

we are cautious in making direct comparisons between these

0.40 (0.26 to 0.52)

0.67 (0.58 to 0.74)

different patient groups (as they may have differing perspec-

1 [Reference]

tives and expectations regarding their communicative func-

tion), it is surprising to see that the sample in this study sub-
jectively reported levels of communicative participation that
NA
NA
NA
5

are comparable with those in patients with known, severe

communicative disorders, such as those who have under-
0.13 (−0.02 to 0.27)
0.19 (0.03 to 0.34)a
0.42 (0.28 to 0.55)

0.46 (0.33 to 0.57)

gone laryngectomy. These findings are consistent with prior

qualitative research that reported that patients with various
1 [Reference]

disorders that affect verbal communication (spasmodic dys-

Table 3. Pearson r Correlation Among CPIB Short Form and FaCE Total and Subdomains With 95% CIs for 160 Respondents

phonia, multiple sclerosis, Parkinson disease, and amyo-

trophic lateral sclerosis) experienced similar types of restric-
NA
NA
4

tions in communicative participation despite different

Abbreviations: CPIB, Communicative Participation Item Bank; FaCE, Facial Clinimetric Evaluation Scale; NA, not applicable.

mechanisms of speech impairment.14

−0.03 (−0.18 to 0.15)

−0.06 (−0.20 to 0.09)

a
0.24 (0.08 to 0.39)
0.24 (0.09 to 0.38)

0.19 (0.02 to 0.35)

In this study sample, those who reported Bell palsy as

the cause of their facial paralysis scored better on the Facial
1 [Reference]

Movement subsc ale but lower on the Oral Function,

Facial Comfort, and Eye Comfort subscales when compared
with those with facial palsy as a result of a tumor. This find-
NA
3

ing is comparable with that from a study by Saito and

Cheung23 that similarly reported that patients with idio-
0.42 (0.28 to 0.55)a
0.65 (0.56 to 0.73)a

−0.33 (0.18 to 0.47)a

0.74 (0.67 to 0.80)
0.54 (0.41 to 0.64)

0.86 (0.81 to 0.89)

pathic facial paralysis reported lower levels of social func-

tioning despite better facial movement when compared
1 [Reference]

with patients with facial paralysis as a result of vestibular

schwannoma. In addition, a history of prior treatment
and cause of facial paralysis had a significant effect on
2

FaCE Scale scores. Specifically, having previously received

treatment was associated with lower scores in the Oral
0.06 (−0.11 to −0.20)
a
0.29 (0.15 to −0.41)

0.11 (−0.05 to 0.27)

Function, Eye Comfort, and Social Function subdomains.

0.47 (0.37 to 0.57)a

a
0.47 (0.35 to 0.59)
0.19 (0.04 to 0.36)

0.49 (0.39 to 0.60)

This finding is consistent with a previous report that

patients with facial paralysis who received prior treatment
reported lower scores in both the overall FaCE Scale and its
1. CPIB

subdomains.1 In contrast, the CPIB Short Form scores did

not differ by previous treatments or cause of paralysis.
Although the CPIB Short Form score and FaCE Scale scores
Indicates significant correlation.

were significantly correlated, certain factors associated with

lower FaCE Scale scores did not apply to the results of the
CPIB Short Form. We therefore believe that the 2 instru-
2. Overall FaCE Scale
3. Facial Movement

7. Lacrimal Control
8. Social Functiona

ments measure different aspects of the constellation of

4. Facial Comfort
5. Oral Functiona
6. Eye Comfort

symptoms, behaviors, and social context of facial paralysis

FaCE Scale

today.
The construct of communicative participation addresses the
extent to which a patient partakes in commonly encountered situ-
a

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 Speech and Communicative Participation in Patients With Facial Paralysis
Figure. Comparison of Communicative Participation Between Our Sample of Self-reported Facial Paralysis
and Other Samples From the Literature
2
CPIB Score, Mean (SD), Logits
1
0 sclerosis (ALS),21 and multiple
–1
–2
Facial Laryngectomy Larynx
Paralysis Caa
ations requiring speech.14 It specifically addresses the commu-
nication that is required to successfully engage in common life
situations and reflects a person’s ability to fulfill his or her life roles.
Thus, the results of this study suggest that some individuals with
facialparalysismayexperiencesignificantlimitationstotheirdaily
living secondary to their restricted communicative participation.
Wesuspectthattheinfluenceoffacialparalysisoncertainpatients’
ability to communicate may be a key driver of the decreased qual-
ity of life in those with this disease.
Communicative participation as reflected by scores on
the CPIB Short Form showed a significant correlation with
the overall scores on the FaCE Scale, although this correla-
tion was limited to certain subdomains. Moderate correla-
tions were observed between communicative participation
and the Oral Function and Social Function subdomains. Sig-
nificant but weak correlations were seen between the CPIB
Short Form and the Facial Comfort and Eye Comfort subdo-
mains of the FaCE Scale.
No significant correlation was observed between
communicative participation and the Facial Movement sub-
domain of the FaCE Scale. This finding may suggest that
restrictions in communicative participation experienced by
patients with facial paralysis are not attributable solely to
motor function of facial muscles involved in speech produc-
tion. Rather, as communicative participation encompasses
multiple factors relating to communicative success, includ-
ing situational contexts and communication partners, it rep-
resents a more global assessment of communicative func-
tion beyond pure motor speech deficits. The observed
restriction in communicative participation in patients with
facial paralysis is likely multidimensional, influenced by a
combination of physical, social, and environmental factors.
Prior studies examining communicative participation in
individuals with other types of communication disorders
have similarly suggested that restrictions in communicative
participation are secondary to a constellation of physical,
social, and environmental factors.14,22,24,25 Although the
CPIB Short Form provides broad assessment of restrictions
in communicative participation, it does not necessarily
identify the specific factors that contribute to lower levels of
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Original Investigation Research
Samples from the literature included
laryngectomy,19 head and neck
cancer (HNCa),20 amyotrophic lateral
sclerosis (MS).22 Error bars indicate
SD.
a
Patients evaluated with the
full-length, 46-item version of the
Communicative Participation Item
Bank (CPIB) as opposed to the Short
Oropharynx Oral Cavity HNCa ALSa MSa Form. Higher logit scores indicate
Caa Caa >1 Sitea better communicative function.
Ca indicates cancer.
communicative participation. Further research is needed to
identify specific factors associated with poor communica-
tive participation in patients with facial paralysis.
Furthermore, there is only a moderate correlation
between communicative participation and the FaCE Scale,
suggesting that communicative participation represents a
unique construct that is not adequately captured by existing
facial paralysis–specific instruments. As currently used,
facial paralysis–specific, patient-reported outcome mea-
sures provide a broad assessment of function and quality of
life, but they do not directly assess function relating to
speech or communication. This shortcoming can be particu-
larly problematic in cases in which deficits in verbal com-
munication are particularly distressing to the patient rela-
tive to other symptoms of facial paralysis. An evaluation of
communicative participation provides the ability to contex-
tualize the effect of facial paralysis on communication and
daily living. In addition, the brevity of the CPIB Short Form
allows it to easily be incorporated into a clinical visit. We
suggest that an assessment of communicative participation
can provide greater insight into the patient’s level of func-
tion and perception of his or her disease, as well as provide
an additional frame of reference when evaluating treatment
outcomes.
Although it is unclear whether communicative partici-
pation in patients with facial paralysis correlates with more
objective, physician-graded assessments of facial function,
prior research has suggested that degree of impairment is
not associated with self-perceived communicative function.
A previous study by Movérare et al 8 reported that the
degree of facial paralysis (assessed by the Sunnybrook
Facial Grading System) did not demonstrate significant cor-
relation with either articulation or the patient’s perceived
communicative abilities. This finding is consistent with
prior literature suggesting that patient-reported assess-
ments of the severity of facial paralysis may show only lim-
ited correlation to physician-graded instruments, such as
the House-Brackmann method or Sunnybrook Facial
Grading. 26-28 Such results indicate that patient-reported
assessments can provide new insights into the influence of
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 Research Original Investigation Speech and Communicative Participation in Patients With Facial Paralysis

facial paralysis on daily living and highlight the importance
of incorporating patient-reported outcome measures
in the management of fac ial paralysis. Correlation
between physician-graded instruments, such as the
Sunnybrook Facial Grading system or Electronic Facial
Paralysis Assessment grading system, and communicative
participation in this subset of patients is a topic for future
research.
Limitations
There are several limitations of this study. Most participants
in this study were recruited through online support groups,
and this sample may not reflect the entire spectrum of
patients with facial paralysis as a whole. Patients actively
engaging in online support groups may represent patients
who feel their impairment is more severe than those who do
not attend support groups. Conversely, those in support
groups may feel better about their condition relative to the
facial paralysis community owing to the social support
received from the group. Furthermore, the vast majority of
respondents were women (145 [90.6%]). Prior studies have
observed that females with facial paralysis tend to report
lower levels of function and quality of life than do males.1,2
As such, the sample presented in this study may represent a
group that is more biased toward negative perceptions of
their communicative abilities. In addition, most patients in
the study reported Bell palsy as the cause of their facial
paralysis. It is important to consider the cause of disease, as
the context in which facial paralysis occurs (ie, idiopathic vs
tumor resection) may result in different objective levels of
facial function and have different influences on a patient’s
ability to cope with his or her dysfunction.23 This study did
not explore the correlation between objective severity of
facial paralysis and communicative participation. Finally,
duration of disease was collected as a categorical variable,
with a duration of more than 3 years as the maximum pos-
sible selection. Thus, this study was unable to examine the
differences in communicative participation for individuals
with facial palsy for more than 3 years or make inferences
regarding changes in communicative function over time.
These potential biases should be considered when interpret-
ing the results of this study.
Despite these biases, we believe this study presents an
important first look into the influence of facial paralysis on
communication. We believe the results of this study suggest
that restrictions in communicative participation represents
a significant area of dysfunction in facial paralysis in a sub-
set of patients that is not adequately explored by current
standards of evaluation. Communication is a key aspect of a
person’s ability to function in various life settings. As such,
we believe the results of this study warrant further investi-
gation into communicative participation in all patients with
facial paralysis to assess the broader influence of facial
nerve dysfunction in daily life.
Conclusions
The patients with facial paralysis in this study reported
restrictions in communicative participation that were com-
parable with those in patients with other known communi-
cative disorders (including laryngectomy, head and neck
cancers, multiple sclerosis, and amyotrophic lateral sclero-
sis). Although there was a statistically significant correlation
between communicative participation and facial paralysis–
specific quality of life measures, this correlation was
limited to certain subdomains and did not correlate with
patients’ subjective rating of facial movement. Although we
are unable to draw broad conclusions regarding communi-
cative dysfunction in patients facial paralysis as a whole,
we believe the construct of communicative participation
may represent a unique domain of dysfunction in patients
with facial paralysis that is often overlooked by commonly
used facial paralysis assessments, warranting further
investigations into the effects of facial paralysis on commu-
nication. We believe that assessments of communicative
participation can help quantify the severity of facial
paralysis as well as provide an additional frame of reference
when setting goals of care and assessing outcomes of
treatment.

ARTICLE INFORMATION
Accepted for Publication: April 13, 2018.
Published Online: June 28, 2018.
doi:10.1001/jamaoto.2018.0649
Author Contributions: Dr Pepper and Mr Kim had
full access to all the data in the study and take
responsibility for the integrity of the data and the
accuracy of the data analysis.
Study concept and design: All authors.
Acquisition, analysis, or interpretation of data: Kim,
Fisher, Pepper.
Drafting of the manuscript: Kim, Fisher, Pepper.
Critical revision of the manuscript for important
intellectual content: All authors.
Statistical analysis: Kim, Fisher.
Obtained funding: Pepper.
Administrative, technical, or material support:
Pepper.
Study supervision: Reder, Hapner, Pepper.
Conflict of Interest Disclosures: All authors have
completed and submitted the ICMJE Form for
Disclosure of Potential Conflicts of Interest and
none were reported.
Additional Contributions: The Facial Paralysis and
Bell’s Palsy Foundation and the Acoustic Neuroma
Association assisted in the recruitment for this
study. Kathleen Bogart, PhD, Oregon State
University, assisted in the concept design of this
study. She was not compensated for her
contribution.
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Invited Commentary

“I’ll Have What He’s Having…” and Other Restrictions

in Communicative Participation
Carolyn Baylor, PhD

Communication is about connecting with people. Whether
for business, or leisure, or love, communication is about
understanding and being understood. Communication dis-
orders disrupt those connections in various ways. Vocal
fold paralysis weakens your
Related article page 686
voice. Aphasia scrambles
the meaning of words. Hear-
ing loss leaves you grasping at fragments of conversations.
On the surface, these examples represent disparate impair-
ments of communication. However, careful listening to the
lived experiences of people with different communication
disorders reveals many shared stories.1,2 For example, with
a communication disorder you cannot overpower loud and
distracting background noise in restaurants to communicate
with waitstaff. It is rare that you can order what you actually
want—and to actually receive what you ordered. Thus, you
shrug, point to the person sitting next to you, and say, “I’ll
have what he’s having.” Telephones and intercoms at
drive-through windows—daily conveniences for most
people—pose insurmountable barriers when you have a
communication disorder, so you drive on by without
your latte or takeout pizza. Other people regard you with a
look, or tone of voice, or comment that reveals their
discriminating assumptions that because you cannot talk
well, you must not be able to think well, or do anything
else well. Hearing the same stories from people with differ-
ent communication disorders leads to the realization that
communication cannot be reduced to the mechanics of
vocal fold vibration or speech articulation. Symptoms of
various disorders interact with common barriers in the
physical and social environments, leading to shared restric-
tions in communicative participation; that is, restricted
involvement in and fulfillment of communication needs in
daily life.

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