Dysphagia (2014) 29:578–582
DOI 10.1007/s00455-014-9548-3
ORIGINAL ARTICLE
Quality of Life Related to Swallowing in Parkinson’s Disease
Danielle Carneiro • Maria das Graças Wanderley de Sales Coriolano •
Luciana Rodrigues Belo • Aneide Rocha de Marcos Rabelo • Amdore Guescel Asano
Otávio Gomes Lins
Received: 28 October 2011 / Accepted: 31 May 2014 / Published online: 22 June 2014
Ó Springer Science+Business Media New York 2014
Abstract Swallowing difficulties in Parkinson’s disease
can result in decreased quality of life. The swallowing
quality of life questionnaire (SWAL-QOL) is an instrument
for specifically assessing quality of life with respect to
swallowing, which has been little explored in patients with
Parkinson’s disease (PD). The goal of this study was to
evaluate the quality of life with respect to swallowing in
persons with PD compared to controls and at several stages
of the disease using the SWAL-QOL. The experimental
group was composed of 62 persons with PD at stages 1–4.
Forty-one age-matched healthy subjects constituted the
control group. The SWAL-QOL scores were significantly
D. Carneiro (&)
Department of Occupational Therapy and Program in
Neuropsychiatry and Behavioral Science, Federal University of
Pernambuco, Recife, Street José Felipe Santiago, 100, Bl. M,
Apt. 201, Iputinga, Recife/PE 50680-090, Brazil
e-mail: carneiro_danielle@yahoo.com.br
M. das Graças Wanderley de Sales Coriolano
Department of Anatomy, Federal University of Pernambuco,
Recife, Brazil
L. R. Belo
Program in Neuropsychiatry and Behavioral Science, Federal
University of Pernambuco, Recife, Brazil
A. R. de Marcos Rabelo
Department of Occupational Therapy, Federal University of
Pernambuco, Recife, Brazil
A. G. Asano
Neurologist in the Service to Parkinson’s Patients, Clinical
Hospital, Recife, Brazil
O. G. Lins
Neuropsychiatry and Behavioral Science, Federal University of
Pernambuco, Recife, Brazil
123
•
lower for the patients with PD than for the controls in all
SWAL-QOL domains. Eating duration had the largest
difference in score between persons with PD and the
controls and the lowest mean score, followed by commu-
nication, fatigue, fear, sleep, and food selection. The scores
of most domains were lower at later stages of the disease.
The scores for eating duration, symptom frequency, and
sleep were significantly lower at stage 4 than stages 1 and
2. In conclusion, patients with PD have significantly lower
scores in all domains of the SWAL-QOL than normal
controls. This means swallowing difficulties occurring in
patients with PD negatively affect their QOL. Progression
of the disease worsens swallowing QOL, more specifically
in the domains of eating duration, symptom frequency, and
sleep. This occurs mostly at later stages of the disease.
Keywords Parkinson’s disease
Quality of life

Swallowing
Deglutition
Deglutition disorders
Scales
Introduction
Quality of life (QOL) is a multidimensional concept that
evaluates the satisfaction of an individual in relation to life
expectancy, health perception, and physical and emotional
aspects, among other aspects [1–3]. Therefore, health is to
a collaborative factor in the maintenance of QOL [1, 2].
From this collected information that relates to QOL, the
physical and psychosocial effects of diseases or conditions
on the life of individuals are investigated to better under-
stand the patient and how he/she adapts to their condition.
Observation of these aspects contributes to clinical deci-
sions made for patients with specific diseases, especially
neurodegenerative diseases [4]. It is known that among
neurodegenerative diseases, Parkinson’s disease (PD)
D. Carneiro et al.: Quality of Life Related to Swallowing in PD
produces a decline in the QOL in its carriers and their
families [3, 7].
In persons with PD, the classical signs and symptoms of
PD essentially relate to motor functions, as the dopamine
regulatory system is impacted by the loss of dopamine-
producing neurons [5]. The ability to execute movements
declines gradually, which directly affects basic life func-
tions like swallowing [6, 7].
Normal swallowing involves a complex mechanism,
including the organized contraction and relaxation of the
musculature of the lips, tongue, larynx, pharynx, and
esophagus [8]. Normal functioning of all components of
this mechanism is necessary for food to be transported
from the mouth to the stomach [9]. Alterations in swal-
lowing, or dysphagia, can occur under any condition that
causes defective closing of the lips, alteration in the pro-
pulsion of food by the tongue, delay in the initiation of
swallowing, alteration in the tracheo-esophageal transit of
food, or abnormal anatomical physiology of the esophagus
[10, 11]. These dysfunctions can result in entrance of food
into the air passages and development of aspiration pneu-
monia, which can result in nutritional deficits, dehydration,
or even death [12].
Studies have indicated that between 31 and 100 % of
patients with PD have some problem with swallowing [13],
usually caused by motor abnormalities resulting in a
defective transit of the bolus [14]. The principal focus of
treatment for these individuals should be the maintenance
of QOL [15], specifically with respect to swallowing. It is
important to recognize the factors that relate to this concept
and the measurement tools that can evaluate the impact on
the QOL of patients with PD with respect to swallowing [2,
16]. Currently, a measurement tool for this function is the
Swallowing QOL questionnaire (SWAL-QOL) [17–19].
This tool specifically evaluates the impact of changes in
swallowing on the QOL and is important for identifying the
effectiveness of rehabilitation from the point of view of the
patient. It is useful in differentiating the swallowing of
healthy adults from the dysphagia of patients with a variety
of diseases, and in characterizing the alterations in swal-
lowing in relation to QOL [18, 19].
The goals of this study were twofold: (1) to compare the
swallowing quality of life (SWAL) between patients with
PD and age-matched control subjects and (2) to compare
the SWAL among persons with PD in different stages of
the disease [stages 1, 2, 3, and 4 of the Hoehn and Yahr
(HY) scale] [20].
Methods
This descriptive transversal study was conducted at the
Pro-Parkinson program (a multidisciplinary program that
579
helps PD patients) at the Clinical Hospital, Federal Uni-
versity of Pernambuco, Brazil, and at the Association of
Parkinson of Pernambuco (an association of Parkinson’s
patients). The patients with PD were invited to participate
in the study during routine service. All participants signed
an informed consent form. The study was approved by and
registered at the local Committee for Ethics in Research
with Humans (No. 337/08).
Subjects
The experimental group was composed of 62 patients with
idiopathic PD of stages 1–4 (HY scale). The diagnosis of
PD was established by a neurologist at the Pro-Parkinson
program. None of the patients was undergoing rehabilita-
tion treatment during the preceding 2 months or had other
neurological or systemic disorders that could affect swal-
lowing. The control group was composed of 41 age-mat-
ched healthy individuals. No control subject related having
any swallowing complaints. Neither those with PD nor the
control subjects had cognitive abnormalities (as evaluated
by the neurologist), craniofacial abnormalities; lesions of
the phono-articulatory organs, or poorly fitted dental
prostheses (patient report).
Instruments
1. SWAL-QOL Questionnaire: an instrument composed
of 44 questions that evaluate 11 domains of QOL
(burden, eating duration, eating desire, frequency of
symptoms, food selection, communication, fear, mental
health, social functioning, sleep, and fatigue) [19]. The
possible responses are ‘‘always’’ (0 points), ‘‘many
times’’ (25 points), ‘‘sometimes’’ (50 points), ‘‘seldom’’
(75 points), and ‘‘never’’ (100 points). The score for
each domain is calculated by adding the points of the
responses to the questions in the domain and dividing
the total by the number of questions in the domain [19].
The score for each domain may vary from 0 (worse) to
100 (best). We used the Portuguese version of the
SWAL-QOL, translated and validated by Montoni and
Alves [17]. Before starting the questionnaire, we
carefully explained to the patient or the control that all
questions should be answered in relation to swallowing.
2. HY Scale: a traditional and widely used scale for
clinical evaluation and practical determination of the
stage of PD [21]. It evaluates the severity of PD by
classifying the degree of incapacity into one of five
stages (stages 1–5) [22]. There were no stage 5 patients
included in this study. The classification was per-
formed by a neurologist at the Pro-Parkinson program.
3. Unified Parkinson’s Disease Rating Scale (UPDRS):
used to evaluate different aspects of the disease (motor
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580 D. Carneiro et al.: Quality of Life Related to Swallowing in PD

Table 1 Subjects’ characteristics Table 2 SWAL-QOL scores of PD patients and control subjects
Group N ($) Age (years) Duration (years) UPDRS SWAL-QOL Controls PD U, P

Controls 41 (24) 65 (10) – – Burden 98 (9) 86 (18) 758, \0.0005

PD 62 (29) 66 (10) 7 (4) 44 (22) Eating duration 99 (2) 56 (36) 336, \0.0001
HY 1 10 (6) 65 (10) 3 (2) 38 (17) Eating desire 96 (8) 80 (24) 694, \0.0001
HY 2 21 (10) 66 (11) 5 (4) 38 (18) Symptom frequency 93 (6) 78 (12) 295, \0.0001
HY 3 17 (8) 65 (10) 7 (3) 48 (27) Food selection 98 (12) 88 (23) 940, \0.0258
HY 4 14 (5) 68 (9) 12 (4) 54 (21) Communication 95 (9) 63 (27) 360, \0.0001
Values are mean (standard deviation). N ($) total (female) number of Fear 95 (9) 74 (24) 563, \0.0001
subjects; Duration years since diagnosis of PD Mental health 100 (1) 90 (18) 738, \0.0001
PD Parkinson’s disease, HY Hoehn and Yahr; UPDRS unified Par- Social functioning 100 (2) 90 (22) 971, \0.0429
kinson’s disease rating scale Sleep 99 (3) 78 (29) 687, \0.0001
Fatigue 100 (2) 71 (28) 372, \0.0001
and nonmotor symptoms) through self-reporting by the Data are mean (standard deviation)
patient and clinical observation. It is widely used in PD Parkinson’s disease, U Mann–Whitney test statistic
research and clinical settings. The scale is divided into
sections and items and each item is rated from 0
(normal) to 4 (severely affected).
between those with PD and the control subjects (64 vs.
All three instruments were administered on the same day 65 years, respectively; t = -0.58; df = 105; P = 0.57).
by the same person (DC). The total evaluation time was Mean ages were also not significantly different among the
about 45 min. The HY scale was applied during a medi- patients with PD at different HY stages (F = 1.23;
cation ‘‘off’’ state while the UPDRS scale was applied df = 3,58, P = 0.31).
during a medication ‘‘on’’ state.
SWAL-QOL Differences Between Patients with PD
Design and Data Analysis and Control Subjects

The analysis was divided in two sections: the first section
dealt with SWAL-QOL differences between those with PD
and the control subjects and the second section dealt with
SWAL-QOL differences among patients with PD at dif-
ferent stages of the disease (stages 1, 2, 3, and 4 of the HY
scale).
Age differences between those with PD and the control
subjects were evaluated using independent t tests. Age
differences among patients with PD at different HY stages
were evaluated using one-way analysis of variance
(ANOVA). Since the SWAL-QOL scores are ordinal
variables, the significance of the differences was evaluated
using nonparametric tests: the Mann–Whitney U test for
the first section (two groups) and the Kruskal–Wallis
ANOVA H test followed by the post hoc Dunn’s test for
the second section (four groups) comparisons. The critical
P was 0.05.
Results
Subject Demographics
Table 1 gives some demographic characteristics of the
subjects. Mean ages were not significantly different
Table 2 presents the means and standard deviations of the
scores for the SWAL-QOL domains for those with PD in
general and the control subjects. The mean scores were
significantly lower for those with PD than for the control
subjects, in all SWAL-QOL domains. Eating duration had
the lowest mean score, followed by communication, fati-
gue, fear, sleep, and food selection.
SWAL-QOL Differences among Patients with PD
at Different Stages
Table 3 presents the means and standard deviations of the
scores in each SWAL-QOL domain for those with PD at
stages 1, 2, 3, and 4 of the HY scale. The mean scores of
most domains were lower for those at later stages of the
disease. The mean scores of the domains eating duration,
symptom frequency, and sleep were significantly different
among HY stages. Post hoc comparisons showed that the
mean scores of all three domains were significantly lower
in patients at stage 4 than in patients at stages 1 and 2. The
mean score for eating duration was significantly lower at
stage 3 than at stage 1. The mean scores for social func-
tioning, fatigue, and communication were much lower at
stage 4 but the differences did not reach significance
(P \ 0.10 but [0.05). The mean scores for burden, eating

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D. Carneiro et al.: Quality of Life Related to Swallowing in PD 581

Table 3 SWAL-QOL scores of PD patients in different stages of the Hoehn and Yahr scale
SWAL-QOL HY1 HY2 HY3 HY4 H, P

Burden 88 (19) 89 (18) 87 (18) 79 (18) 4.599, 0.2036

Eating duration 81 (27) 63 (37) 44 (37)HY1 40 (29)HY1,2 11.230, 0.0106*
Eating desire 80 (29) 78 (26) 76 (25) 88 (12) 1.978, 0.5770
HY1,2,3
Symptom frequency 80 (29) 78 (26) 79 (9) 69 (13) 10.262, 0.0165*
Food selection 90 (21) 88 (27) 90 (20) 83 (21) 1.978, 0.5770
Communication 70 (38) 70 (21) 60 (27) 48 (23) 6.424, 0.0927
Fear 81 (26) 76 (24) 72 (29) 67 (18) 2.880, 0.4106
Mental health 90 (20) 91 (20) 93 (13) 83 (19) 3.828, 0.2807
Social functioning 96 (14) 93 (18) 96 (8) 74 (34) 07.335, 0.0620
HY1,2
Sleep 88 (24) 85 (24) 79 (29) 58 (32) 09.115, 0.0278*
Fatigue 81 (29) 76 (30) 72 (26) 58 (26) 07.022, 0.0712
Values are mean (standard deviation)
PD Parkinson’s disease, HY Hoehn and Yahr, H Kruskal–Wallis ANOVA statistic
* Significant differences. Superscript HY indicates significant differences among HY stages (Dunn’s test)

desire, food selection, fear, and mental health varied little SWAL-QOL Differences among Patients with PD
across stages. at Different Stages

The mean scores of most domains of the SWAL-QOL

Discussion
SWAL-QOL Differences Between Patients with PD
and Control Subjects
This study shows that PD significantly affects swallowing
QOL. The scores of all domains of the SWAL-QOL were
significantly lower for those with PD than for age-matched
controls. Leow et al. [23], studying patients with PD at
different HY stages, found significant differences in the
mean scores for all domains of the SWAL-QOL, except for
sleep. Sample specificity probably explains this difference.
In their data the mean score for sleep was almost equal to
that of the patients with PD in our study (77 vs. 78) but
much lower than that for our control subjects (81 vs. 99).
The largest difference between the scores of those with PD
and the control subjects (and also the lowest score) was for
eating duration, followed by communication, fatigue, and
fear, respectively. In the Leow et al. [23] study, the largest
differences were found for burden and food selection, fol-
lowed by eating duration, mental health, and social func-
tioning. Again, sample specificities may explain the
differences. Taking a long time to eat meals is a frequent and
important complaint of people with PD. General bradykinesia
is probably a major cause [23]. However, PD specifically
affects swallowing. For example, Coriolano et al. [24] found
that patients with PD needed significantly more time to drink
a given volume of water than age-matched normal controls.
decreased as the stage of the disease increased from 1 to 4.
The mean scores for eating duration, sleep, and symptom
frequency decreased significantly across stages, especially
at later stages. The mean scores for social functioning,
fatigue, and communication were smaller at stage 4 than at
earlier stages, although the differences did not quite reach
significance. The mean scores for burden, eating desire,
food selection, fear, and mental health varied less across
stages. Leow et al. [23], comparing the SWAL-QOL scores
of those with PD at early (HY1 and 2) and later (HY3 and
up) stages of the disease, also found that the mean scores of
all domains of the SWAL-QOL trended downward at later
stages of the disease. They found significant differences in
scores for eating duration, food selection, and eating
desire. The differences in scores for symptom frequency
and mental health came close to significance. Therefore,
although there is a trend for a decrease in the mean scores
of the SWAL-QOL as the disease progresses, this occurs
differently across domains and may present different pat-
terns in different samples. Eating duration seems to be the
domain most affected by the advance of PD.
Plowman-Prine et al. [25], who studied dysphagic and
nondysphagic PD patients, reported lower SWAL-QOL
scores across most domains, but the differences were sig-
nificant only for mental health, social functioning, and
burden. This suggests that the presence of dysphagia
worsens the swallowing QOL of patients with PD, but only
in some domains.

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Conclusion
In this study we found that people with PD have signifi-
cantly lower scores for all domains of the SWAL-QOL
than normal controls. This means that swallowing diffi-
culties in those with PD negatively affect their QOL.
Progression of the disease worsens swallowing QOL,
especially for the domains eating duration, symptom fre-
quency, and sleep. This occurs mostly at later stages of the
disease.
The limitation of this study were that dysphagia was
self-assessed by the subjects. There was no formal clinical
and/or instrumental diagnosis of dysphagia. This poten-
tially limits the interpretation of the results.
Acknowledgments D. Carneiro held a scholarship from the
National Council for Scientific and Technological Development
(CNPq)—Brazil.
Conflict of interest The authors have no conflicts of interest to
disclose.
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Danielle Carneiro MS
Maria das Graças Wanderley de Sales Coriolano Dr
Luciana Rodrigues Belo MS
Aneide Rocha de Marcos Rabelo MS
Amdore Guescel Asano MS
Otávio Gomes Lins PhD