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Living with oropharyngeal dysphagia: effects of bolus modification on health-related quality of life—a systematic review

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Abstract

Difficulty swallowing, oropharyngeal dysphagia, is widespread among many patient populations (such as stroke and cancer groups) and aged community-dwelling individuals. It is commonly managed with bolus modification: altering food (usually cutting, mashing or puréeing) or fluids (typically thickening) to make them easier or safer to swallow. Although this treatment is ubiquitous, anecdotal evidence suggests patients dislike this management, and this may affect compliance and well-being. This review aimed to examine the impact of bolus modification on health-related quality of life. A systematic review of the literature was conducted by speech pathologists with experience in oropharyngeal dysphagia. The literature search was completed with electronic databases, PubMed and Embase, and all available exclusion dates up to September 2012 were used. The search was limited to English-language publications which were full text and appeared in peer-reviewed journals. Eight studies met the inclusion criteria. Generally, bolus modification was typically associated with worse quality of life. Modifications to foods appeared to be more detrimental than modifications to fluids, but this may be due to the increased severity of dysfunction that is implied by the necessity for significant alterations to foods. The number of studies retrieved was quite small. The diverse nature of methodologies, terminologies and assessment procedures found in the studies makes the results difficult to generalise. Overall, even though the severity of dysphagia may have been a confounding factor, the impact of bolus modification on health-related quality of life in patients with oropharyngeal dysphagia appears to be negative, with increased modification of food and fluids often correlating to a decreased quality of life. Further, associated disease factors, such as decreased life expectancy, may also have affected health-related quality of life. More research is needed.
REVIEW
Living with oropharyngeal dysphagia: effects of bolus
modification on health-related quality of life—a systematic review
Katina Swan
1
Rene
´e Speyer
1,2
Bas J. Heijnen
2
Bethany Wagg
1
Reinie Cordier
1,3
Accepted: 7 April 2015
Springer International Publishing Switzerland 2015
Abstract
Purpose Difficulty swallowing, oropharyngeal dyspha-
gia, is widespread among many patient populations (such
as stroke and cancer groups) and aged community-dwelling
individuals. It is commonly managed with bolus modifi-
cation: altering food (usually cutting, mashing or pure
´eing)
or fluids (typically thickening) to make them easier or safer
to swallow. Although this treatment is ubiquitous, anec-
dotal evidence suggests patients dislike this management,
and this may affect compliance and well-being. This re-
view aimed to examine the impact of bolus modification on
health-related quality of life.
Methods A systematic review of the literature was con-
ducted by speech pathologists with experience in oropha-
ryngeal dysphagia. The literature search was completed with
electronic databases, PubMed and Embase, and all available
exclusion dates up to September 2012 were used. The search
was limited to English-language publications which were
full text and appeared in peer-reviewed journals.
Results Eight studies met the inclusion criteria. Gener-
ally, bolus modification was typically associated with
worse quality of life. Modifications to foods appeared to be
more detrimental than modifications to fluids, but this may
be due to the increased severity of dysfunction that is im-
plied by the necessity for significant alterations to foods.
The number of studies retrieved was quite small. The di-
verse nature of methodologies, terminologies and assess-
ment procedures found in the studies makes the results
difficult to generalise.
Conclusion Overall, even though the severity of dys-
phagia may have been a confounding factor, the impact of
bolus modification on health-related quality of life in pa-
tients with oropharyngeal dysphagia appears to be nega-
tive, with increased modification of food and fluids often
correlating to a decreased quality of life. Further, associ-
ated disease factors, such as decreased life expectancy,
may also have affected health-related quality of life. More
research is needed.
Keywords Systematic review Oropharyngeal
dysphagia Deglutition Bolus modification
Health-related quality of life
Introduction
Oropharyngeal dysphagia (OD) is a disorder of swallowing
that may affect mastication, sucking, saliva management,
bolus passage and control through the oral cavity, pharynx
or oesophagus entrance and impair protection of the air-
way. It affects individuals across the lifespan, may be
transient or chronic and may arise from congenital abnor-
malities, acquired neurologic or physical dysfunction,
progressive degeneration and psychiatric disorders [15].
Prevalence of OD varies depending on aetiology and age;
among a typical cross section of community-dwelling
&Katina Swan
katina.swan@my.jcu.edu.au
Rene
´e Speyer
renee.speyer@jcu.edu.au
1
Discipline of Speech Pathology, School of Public Health,
Tropical Medicine and Rehabilitation Sciences, James Cook
University, Townsville, QLD 4811, Australia
2
Department of Otorhinolaryngology and Head and Neck
Surgery, Leiden University Medical Center, Leiden,
The Netherlands
3
School of Occupational Therapy and Social Work, Curtin
University, Perth, WA, Australia
123
Qual Life Res
DOI 10.1007/s11136-015-0990-y
individuals aged 65 years and over, it has been reported to
be between 11 and 15 % [68]. Between 7 and 44 % of the
normal individuals over the age of 50 have identified
having difficulty swallowing at some point [9]. A range of
conditions which commonly affect the general population
are associated with a drastic increase in frequency; in
stroke, OD occurs in up to 80 % of patients following bi-
lateral brainstem lesions [10]. The prevalence of OD is also
high in Parkinson’s disease, head and neck cancer, and
other neurodegenerative diseases [4,1116]. Patients with
OD secondary to psychiatric disorders are 43 times more
likely to choke to death compared to the general populace
[5].
The effects of OD are varied and range from complete
incapacitation of the individual’s swallowing system and
airway integrity to mild discomfort or dysfunction when
swallowing. The consequences include difficulty meeting
nutrition and hydration requirements, asphyxiation, pneu-
monia, depression and social isolation [1720]. Data from
North American acute hospitals indicate the economic
impact of dysphagia is $USD547 million per year [21].
A common management strategy for OD is the modifi-
cation of boluses, that is, altering food or fluids in some
way to make them safe and easier for the person with OD
to swallow [22]. Typically, fluids are thickened. Thicken-
ing acts to decrease aspiration risk through a number of
mechanisms, one of which is compensating for delayed or
discoordinated swallows by slowing the rate of fluid transit
and subsequently increasing time for the larynx to be
shielded by the epiglottis and vocal folds. Thickening fluids
may also increase airway closure intervals and cricopha-
ryngeal sphincter opening duration [23,24]. Acidity or pH,
dairy content, temperature and carbonation of fluids may
also be altered to decrease delays in swallowing and dis-
courage mucous production [25,26]. Food modification
may include softening, chopping, mincing or pure
´eing of
meals, and restriction to foodstuffs or textures deemed safe
[26]. Bolus modification ranges from mild adjustments
(such as avoiding foods that are difficult to chew) to sig-
nificant alterations which affect the taste and appearance of
the food or fluid (such as pure
´eing all meals and thickening
water to the consistency of pudding). Selection of the grade
of bolus modification required is based on the severity of
OD, specific dysfunctions affecting deglutition and masti-
cation, and the goals of management. The ability of the
patient to safely tolerate a food or fluid texture with
minimal risk of aspiration or choking usually drives bolus
texture choices.
Although bolus modification is a ubiquitous compen-
satory strategy, a number of issues regarding this practice
have been identified. There is an association between de-
hydration and thickened fluids. This is likely due to de-
creased fluid intake, rather than any inherent dehydrating
properties of the thick fluids. The bioavailability of water
from thickened and normal liquids does not differ sig-
nificantly, and among patients with OD restricted to thick
liquids, grossly inadequate fluid intake has been reported
[27,28]. Dehydration has significant impact on health.
Mild dehydration among healthy young participants is
linked to increased fatigue, anxiety and headaches, poorer
concentration, and memory [29,30]. Among the elderly
and medically fragile, the adverse consequences become
more severe. Profound dehydration may result in throm-
boembolic complications, kidney dysfunction, hyperten-
sion and delirium [31]. Dehydration is also a predisposing
factor for recurrent stroke [32] and may exacerbate effects
of motor neurone disease [16]. Patients who are restricted
to texture-modified foods are also at risk of health com-
plications. Much lower energy (63 %) and protein (66 %)
intake is found among this population contrasted with
comparable hospitalised patients receiving normal diets
[33]. A Cochrane review in 2000 [34] also raised questions
about the nutritional adequacy of bolus modification. A
2013 systematic review [35] found evidence for thickened
fluids reducing aspiration pneumonia in the acute setting
but not for preventing it in chronic dysphagia. There was
insufficient evidence to determine whether texture-mod-
ified foods or fluids improved hydration or nutrition. As the
evidence for advantages of modified boluses proved weak,
the authors strongly suggested patients should have influ-
ence in clinicians’ diet and fluid prescription decisions.
Patients choosing not to comply with prescriptions for
modified boluses is anecdotally a common issue, with
many expressing a strong dislike of the altered textures [36,
37]. The taste of a variety of thickening agents has been
found unpalatable in some research [38,39]. One study
found very few patients were actually using their pre-
scribed fluids and noted that for the majority of par-
ticipants, the benefits of using thickener (i.e. not
coughing/choking or developing aspiration pneumonia) did
not outweigh the positives of drinking normal fluids. These
authors further suggested patient satisfaction with modified
fluids was important to promote both compliance and
quality of life [39].
The term quality of life refers to how the individual
perceives their life in the framework of their own culture
and ideals and the way in which they live as related to their
goals, expectations of life and standards of living. Quality
of life does not refer only to physical health, but also to
psychological health, social relationships and environment
combined with the individuals’ underlying value system
[40]. Health-related quality of life is a more personal
measure, focussed on the way the disease or disorder af-
fects the individual. Measurement is not completed via
assessment of population health, life expectancy and aeti-
ology of mortality but instead seeks to examine the impact
Qual Life Res
123
of health status on quality of life. It has been suggested that
with understanding of the impact of a disorder in quality of
life, the clinicians’ and clients’ interactions alter. Patients
are more likely to receive comprehensive health care, while
clinicians take more fulfilment in their work [41].
In the context of the clinician working day to day with
dysphagic populations, a better understanding of the impact
of bolus modification on our patients’ health-related quality
of life may enable us to understand the impact of our
treatment choices on the patients’ overall well-being as
well as provide impetus for us to look for creative solutions
which are a better fit for the patient and their family. Thus
far, the question of the effects of bolus modification on
health-related quality of life (HRQoL) in OD has been
largely unexplored.
This article presents a systematic review on the effects
of bolus modification on HRQoL among individuals with
OD.
Methods
To address the question of the effect of bolus modification
on HRQoL in OD, an electronic database search was car-
ried out using PubMed and Embase and all available in-
clusion dates up to September 2012. Search strategies
including free text and database-specific subject headings
(such as Thesaurus and Mesh Terms) used for these
searches are detailed in Table 1.
This resulted in 115 abstracts, excluding duplicates.
Abstracts were then appraised by two reviewers indepen-
dently and accepted for full-text retrieval if, based on re-
viewer consensus, they met the following criteria: (1)
included bolus modification, (2) reported on participants
with OD, (3) reported on HRQoL, (4) were published in
peer-reviewed journals, (5) were written in English, (6)
available in full text. Exclusion criteria were (1) if par-
ticipants had oesophageal dysphagia or oesophageal dys-
phagia mixed with OD, (2) QoL measures were unrelated
to bolus modification and (3) published information was
insufficient to extract data meaningful to the scope of this
study.
The full-text articles were then appraised by both re-
viewers and accepted for inclusion in this systematic re-
view if they were found to continue to meet all inclusion
criteria and not fulfil exclusion criteria on closer ex-
amination. Citations of retrieved articles were also checked
for further references. See Fig. 1for further details on re-
viewing process.
The methodological quality of the included studies was
evaluated by the summarised information of study design
(randomisation, use of comparison or control group, par-
ticipant attrition) and then classified according to the evi-
dence ranking scale by Siwek et al. [42]. Level A refers to
high-quality randomised controlled trials, level B to non-
randomised clinical trials and level C to expert opinions or
consensus articles.
Definitions varied, and some terms were used inter-
changeably in the literature. The following definitions were
agreed upon for the purposes of this study:
OD refers to a disorder of deglutition. The definition
encompasses abnormalities within the oral and pharyn-
geal phases of swallowing which result in difficulty or
discomfort [43].
Bolus modification refers to alteration of the viscosity,
particle size, cohesiveness, volume, temperature and/or
pH of food or fluids to be consumed [22].
Table 1 Search strategies in electronic databases
Database Search strategies
PubMed (‘‘Deglutition Disorders’’[Mesh:NoExp] OR ‘‘deglutition disorders’’[All Fields] OR ‘‘oropharyngeal dysphagia’’[All Fields] OR
((‘‘deglutition’’[MeSH Terms] OR ‘‘deglutition’’[All Fields] OR ‘‘swallowing’’[All Fields]) AND (‘‘dysfunction’’[All Fields] OR
‘pain’’[MeSH Terms] OR ‘‘pain’’[All Fields] OR ‘‘problem’’[All Fields] OR ‘‘problems’’[All Fields] OR ‘‘disease’’[MeSH Terms]
OR ‘‘disease’’[All Fields] OR ‘‘disorder’’[All Fields] OR ‘‘disease’’[All Fields] OR ‘‘disorders’’[All Fields]))) AND
(((‘‘food’’[MeSH Terms] OR ‘‘food’’[All Fields]) AND (substance[All Fields] OR intake[All Fields] OR ‘‘administration’’[All
Fields] OR consistency[All Fields] OR preparation[All Fields] OR thickener[All Fields] OR thickeners[All Fields] OR
fortification[All Fields])) OR ‘‘amylase-resistant’’[all fields] OR ‘‘viscosity’’[MeSH Terms] OR ‘‘viscosity’’[All Fields] OR
mashed[all fields] OR ‘‘texture modification’’[all fields] OR ‘‘modified texture’’[all fields] OR ‘‘fluid’’[All Fields] OR liquid[all
fields]) AND (‘‘Quality of Life’’[Mesh] OR ‘‘Quality of Life’’[all fields] OR ‘‘health related quality of life’’[all fields] OR
HRQL[All Fields] OR HRQoL[All Fields] OR QoL[all fields])
Embase (*dysphagia/OR ‘‘deglutition disorders’’.ti. OR ‘‘oropharyngeal dysphagia’’.ti. OR ((*swallowing/OR ‘‘deglutition’’.ti. OR
‘swallowing’’.ti.) AND (‘‘dysfunction’’.ti. OR *pain/OR ‘‘pain*’’.ti. OR ‘‘problem*’’.ti. OR *diseases/OR ‘‘disease*’’.ti. OR
‘disorder*’’.ti.))) AND (exp ‘‘quality of life’’/OR ‘‘Quality of Life’’.mp. OR ‘‘health related quality of life’’.mp. OR HRQL.mp. OR
HRQoL.mp. OR QoL.mp.) AND (((food/OR ‘‘food’’.mp.) AND (substance.mp. OR intake.mp. OR ‘‘administration’’.mp. OR
consistency.mp. OR preparation.mp. OR exp thickening agent/OR thickener*.mp. OR fortification.mp.)) OR ‘‘amylase-
resistant’’.mp. OR exp viscosity/OR ‘‘viscosity’’.mp. OR mashed.mp. OR exp food texture/OR ‘‘texture modification’’.mp. OR
‘modified texture’’.mp. OR ‘‘fluid’’.mp. OR liquid.mp. OR liquid/)
Qual Life Res
123
Quality of life (QoL): ‘a state of complete physical,
mental and social well-being, not merely the absence of
disease or infirmity’ [44].
HRQoL: the impact of health, illness and treatment on
quality of life [45].
Results
One hundred and thirty-three abstracts were found via
PubMed and Embase. A total of 18 duplicates were found,
resulting in a total of 115 articles, eight of which met the
inclusion criteria. A meta-analysis of the data was not
practicable due to the heterogeneity of the populations,
study designs, assessment tools and lack of standardisation
of terminology used in a relatively small pool of research.
Data that related to the topic of HRQoL and bolus
modification were extracted from the eight accepted arti-
cles, collated and presented descriptively. Table 2provides
an overview of the accepted articles. The studies are listed
alphabetically by lead author (second column). The first
column of the table ranks the level of evidence according
to the ABC level of evidence rating scale devised by Siwek
et al. [41]. The following columns list the number of par-
ticipants, aetiology of OD, the QoL tool(s) used, groups,
treatments (if applicable) and finally the authors’ key
findings.
The final number of studies accepted in this review was
two randomised controlled trials (level A) and six well-
designed non-randomised clinical trials (level B). All au-
thors performed statistical analysis to evaluate the effects
of differing bolus modifications on HRQoL.
The studies in this review altered only textures, that is,
viscosity of fluids and moisture and cohesiveness of foods.
There is a wide variety of terminologies for different grades
of bolus modification in the literature, and it is beyond the
scope of this review to comment on suitable terms; therefore,
the original authors’ terminology for bolus modifications is
retained in their respective columns. However, a hierarchy of
modification from least altered to most altered textures can
generally be determined (i.e. ‘liquid food only’ denotes
greater modification than ‘some solid food’).
Due to the heterogeneity of tools and participant groups,
it is difficult to make a comprehensive statement about
results. Studies that used the same tools still differed on the
subscales which appeared affected by bolus modification
[14,46,4953], suggesting individual differences between
patient experiences, even when similar dysphagia severity
or management is present. Generally, participants receiving
less modified textures (i.e. normal or nearly unmodified
food/drinks) had considerably better HRQoL than those
receiving more modified textures. Another theme that
emerged was modifications to food textures may have a
more substantial impact to HRQoL than modifications to
fluids; both McHorney et al. [51] and Vanderwegen et al.
[52] compared participant groups receiving modified fluids
and diets. Groups with modified foods showed worse
HRQoL than the modified fluids groups in these studies.
Discussion
A total of eight studies met the inclusion criteria. Consid-
ering the widespread use of bolus modification, this dearth
of research is unfortunate. Therefore, it is timely to ask:
Electronic data base search of
Pubmed and Embase
115 abstracts retrieved.
Abstracts appraised by two
reviewers independently.
Abstracts were rejected:
if there was no indication of OD among any participants (N = 0),
if dysphagia was of esophageal aetiology or all or a majority of the
participants had esophageal dysphagia instead of OD (N=15),
if there was no evidence of a QoL tool used or QoL measures
appeared unrelated to bolus modification (N=28),
if there was no evidence of bolus modification (N= 49).
Reviewers met to determine consensus for
abstract acceptance: 23 abstracts accepted and
the full text articles of the abstracts were
attempted to be retrieved.
Reviewers met to determine consensus for abstract
acceptance: did not include bolus modification or information
provided was insufficient to extract meaningful data about
bolus modification (N=2), no QoL assessment was used (N=
1), participants did not have OD, had OD mixed with
oesophageal dysphagia or data of groups without OD was not
clearly separated from those with OD (N=2).
13 full text articles retrieved, 8 articles
accepted for inclusion in the review.
References of 13 retrieved articles searched by
reviewers for additional relevant studies.
2 references accepted for abstract retrieval. 0 abstracts
accepted for full text article retrieval.
Final inclusion: 8 articles
10 full text
articles were
unable to be
retrieveda
Fig. 1 Methodology: effect of bolus modification on HRQoL in
participants with OD.
a
Articles not in English or full text not available
(texts were abstracts only, posters or conference proceedings)
Qual Life Res
123
Table 2 Effect of bolus modification on HRQoL in individuals with OD
Level of
evidence
Reference Number of participants with
OD (plus aetiology)
a
(HR)QoL assessments Treatment(s)/Groups
b
Authors’ conclusions/key findings
A
(Randomised
controlled trial)
Carlaw et al.
[46]
N=15
Diverse aetiologies (CVA,
spinal cord injury,
traumatic brain injury, head
and neck cancer)
SWAL-QOL
c
: selected subscales
(symptom, burden mental health,
fear and fatigue), composite
scale (comprising all selected
subscales)
The GF Strong Water Protocol (GFSWP):
Participants received thin water (after
oral care) between meals. Liquids with
meals and taken with medications were
thickened
Group I (N =9): GFSWP (14 days).
Thickened fluids and water
Group II (N =6): Standard care (14 days,
control phase). Only thickened fluids
There was a statistically significant difference in
the composite scores, with Group I showing
improved HRQoL and Group II worsened
HRQoL
No statistically significant differences were present
in pre- and post-intervention change in burden,
mental health, or fatigue domains between group
Karagiannis
et al. [47]
N=18
Diverse aetiologies (CVA,
neurologic disease, cancer
or TB)
Four questions (related to QoL):
How have you been feeling? Are
you happy with the drinks? Have
you been feeling thirsty? How
clean does your mouth feel?
Response options: 1–6 faces rating
chart (Wong and Baker, [48])
Group I (N =13): Thickened fluids and
free access to thin water access (5 days)
Group II (N =5): Thickened fluids only
(5 days)
(Prior to allocation, participants in both
groups were restricted to thickened
fluids.)
Prior to allocation, participants indicated moderate
satisfaction in response to the ‘how have you
been feeling’ question and were largely
dissatisfied when asked about drinks, level of
thirst and mouth-cleanliness
After allocation and receiving thin water, Group I
reported statistically significantly higher levels of
satisfaction with their drinks, level of thirst and
mouth-cleanliness compared to Group II. Group
I’s scores indicated higher general satisfaction
than Group II in response to the ‘how have you
been feeling’ question, but the difference was not
statistically significant
B
(Non-randomised
clinical trial)
Carlsson
et al. [49]
N=101
Neurologic disease and head
and neck cancer
MDADI
d
Group I (N =11): Pure
´ed food diet
Group II (N =44): Soft food
Group III (N =46): Regular food
Mean scores across all domains of the MDADI
generally decreased between groups (worsened
HRQoL) with corresponding increases in food
modification (respectively, Groups III, II and I)
Group III compared with Group I showed
statistically significantly higher HRQoL scores
on the MDADI Total score and both Functional
and Physical subscales
Group II compared with Group I showed
statistically significantly higher HRQoL scores
on the Functional subscale
Qual Life Res
123
Table 2 continued
Level of
evidence
Reference Number of participants with
OD (plus aetiology)
a
(HR)QoL assessments Treatment(s)/Groups
b
Authors’ conclusions/key findings
Finizia et al. [50]N=101
Neurologic disease and head
and neck cancer
(Identical subject population
as Carlsson et al. [49])
SWAL-QOL (Swedish
version)
Group I (N =11): Pure
´ed food diet
Group II (N =44): Soft food diet
Group III (N =46): Regular food
Participants with increased texture
modification generally had lower HRQoL
scores than groups with less modified
foods
Group III compared with Group II showed
statistically significantly higher HRQoL
scores on the Food Selection and Symptom
Frequency subscales
Group III compared with Group II showed
statistically significantly higher HRQoL
scores on the subscales Food Selection,
Burden, Mental Health, Social Function,
Eating Desire and the Total score
Group II compared with Group I showed
statistically significantly higher HRQoL
scores on Food Selection and Eating
Duration subscales
McHorney et al. [51]N
Food (Group I, II, II)
=386
N
Liquid (Group IV, V)
=337
Diverse aetiologies
(including cancer, vascular
disease, degenerative
neurologic disease, other
neurologic disease,
obstructive respiratory
disease, trauma, chronic
medical condition,
dementia)
(N
Food
and N
Liquid
selection
from N
Total
=386)
SWAL-QOL Group I (N =214): Regular food
Group II (N =103): Soft food
Group III (N =20): Pure
´ed food
Group IV (N =48): Thickened
liquids
Group V (N =313): Thin liquids
Statistically significant differences in scores
were present on all SWAL-QOL subscales
between Groups I, II and III (food texture
groups). A general trend in reduction in
scores correlating with increasing food
modification was noted, with Group III
showing particularly poor scores
Groups I, II and III differed significantly in
symptom severity. The decrease in
HRQoL scores between Groups I–III
correlated with increased symptom
severity of OD. Dysphagia severity, as
reflected by food texture, was associated
with worse quality of life
Group IV compared to Group V (fluid
modification) showed statistically
significantly lower HRQoL scores on the
Burden and Social Functioning subscales
Thomas et al. [14]N=48–51
Squamous cell carcinoma of
oropharynx
SWAL-QOL, MDADI and
Swallowing domain of the
UW-QOL
e
Groups based on UW-QOL
swallowing scores as reported by
participants;
Group I (N =12–13): ‘Can swallow
liquid food only’
Group II (N =36-38): ‘Cannot
swallow certain solid food’
Group I compared to Group II showed lower
median HRQoL scores on all MDADI
subscales, the SWAL-QOL subscales and
the total score
Qual Life Res
123
Table 2 continued
Level of
evidence
Reference Number of participants with
OD (plus aetiology)
a
(HR)QoL assessments Treatment(s)/Groups
b
Authors’ conclusions/key findings
Vanderwegen et al. [52]N=268
Diverse aetiologies (head and
neck cancer, stroke,
Parkinson’s disease,
Zenker’s diverticulum)
SWAL-QOL (Dutch version) Group I (N =115): Regular food
Group II (N =84): Soft food
Group III (N =38): Pure
´ed food
Group IV (N =38): Thickened
liquid
Group V (N =220): Thin liquids
In all SWAL-QOL subscales, statistically
significant differences were found between
Groups I, II and III. Increasing
modification of food and fluid texture was
associated with worsening HRQoL scores.
Worse QoL was particularly evident for
participants on pure
´ed diet compared with
regular and soft diets
With the exception of sleep, fatigue, and,
demonstrated higher HRQoL among
Group V than Group IV
Increasing dysphagia severity, as reflected
by food texture, was associated with
worsening QoL
Zuydam et al. [53]N=54 Oral and
oropharyngeal squamous
cell cancer
UW-QOL and MDADI Groups based on UW-QOL
swallowing scores as reported by
participants
Group I (N =9): ‘Can swallow
liquid food only’
Group II (N =45): ‘Cannot swallow
certain solid food’
Increased bolus modification was associated
with worse HRQoL; statistically
significant positive correlations were
found between UW-QOL and MDADI
scores, with consistently lower scores in
Group I compared with Group II on the
Emotional, Functional, Physical and Total
scores
a
Adult men and women, unless otherwise stated
b
NPO groups data excluded
c
Swallowing Quality of Life Survey
d
M. D. Anderson Dysphagia Inventory
e
University of Washington Quality of Life Questionnaire
Qual Life Res
123
How do patients perceive this treatment? Is there a time
when the disadvantages will outweigh the benefits?
Although the prevalent theme emerging from the lit-
erature was that modification of food and fluids negatively
impacts HRQoL, this interpretation has several caveats
attached. Firstly, the small number of studies involved
(particularly limited numbers of randomised controlled
trials) limits the power of this finding. Secondly, the dif-
fering terms for bolus modifications that abound in the
literature can make data ambiguous. Further, where par-
ticipants are restricted to more modified textures, this
usually implies greater severity of OD (and likely under-
lying disease), which in turn may imply worse HRQoL.
The included non-randomised trials [14,4953] all had
subgroups that received a different grade of bolus modifi-
cation. However, the possibility of selection bias cannot be
discounted as these group formations may also be the result
of patient characteristics including disease stage and
severity of OD. Although a pattern of decreased HRQoL
corresponding to increased texture modification was re-
peatedly identified [14,46,47,4953], this raises the
question of the main contributing cause of the impaired
HRQoL—general disease factors or bolus modification?
Some authors state in their conclusions that groups re-
ceiving increased bolus modification had worse HRQoL
because of increased severity of OD [51,52].
This review includes two level A studies. Both ran-
domised clinical trials by Carlaw et al. [46] and Kara-
giannis et al. [47] identified positive changes in the
HRQoL of the groups permitted thin fluids compared to
participants restricted to thick fluids. However, their re-
sults differed in the scope of HRQoL alterations. Carlaw
et al. [46] found SWAL-QOL subtests measuring swal-
lowing-associated fear and impact of OD symptoms de-
creased in the water protocol phase, but no statistically
significant differences were present between groups on
measures of burden, mental health or fatigue. A statis-
tically significant improvement for participants in the
water protocol phase was present on the composite score.
Conversely, Karagiannis et al. [47] reported improved
well-being to very specific, drinking-related factors only
(thirst, mouth-feel, satisfaction with drinks), not in more
general well-being and attitudes to swallowing. However,
the latter results may have been affected by the use of
an invalidated assessment tool. It should also be noted
that although statistical analysis was completed in both
of these studies, the numbers of participants involved
were very small.
In addition to Carlaw et al. [46] and Karagiannis et al.
[47], who provide valuable information about the impact of
restriction to modified fluids, six level B studies or well-
designed clinical trials were included in this review which
assess both foods and some liquids. Thomas et al. [14]
compared a group restricted to liquid food only to another
group who were ‘unable to swallow’ because ‘it goes down
the wrong way and chokes me’. Scores for these two
groups showed a lack of demarcation, indicating very
similar HRQoL between non-oral patients and those re-
stricted to the most extreme level of bolus modification.
Vanderwegen et al. [52] also noted poorer HRQoL par-
ticularly evident for participants on pure
´ed diet compared
with those on regular and soft diets. The authors concluded
reduced HRQoL scores were associated with increased
swallow dysfunction. They suggested that even for those
patients with severe dysphagia, permanent restriction to
pure
´e should be the last resort.
Carlsson et al. [49], Finizia et al. [50] and Zuydam et al.
[53] also provided evidence for a consistent trend of worse
HRQoL associated with increased bolus modification, de-
spite the use of differing assessment tools. Both Carlsson
et al. [49] and Finizia et al. [50] utilised the same study
population but used different HRQoL assessments
(MDADI and SWAL-QOL, respectively). Regardless of
the differing scopes of the assessments, more modified
textures showed worse HRQoL scores. These results are
comparable with the outcome of a study previously per-
formed by McHorney et al. [51], also using the SWAL-
QOL. A trend was noted that HRQoL worsened when
bolus modification increased. However, there was dis-
agreement between Finizia [50] and McHorney’s et al. [51]
results as to the subscales most affected. These differences
may have been influenced by the more diverse aetiologies
in McHorney et al. [51] study population.
Finally, it is important to note not all QoL tools used by
the before-mentioned studies are oropharyngeal dysphagia-
specific; only the MDADI, SWAL-QOL, Dysphagia Han-
dicap Index and Deglutition Handicap Index are considered
valid measures for HRQoL in OD [54]. In general, the
validity and reliability of an instrument need to be deter-
mined before its use in daily clinic, and research can be
justified.
Conclusion
Increased bolus modification was associated with de-
creased HRQoL among populations with OD. However,
the small number of studies, heterogeneity of the popula-
tions, study designs and tools, and lack of standardisation
of terminology restrict the capacity for strong conclusions
to be drawn. In addition, the severity of OD may have been
related to the applied level of bolus modification. This
creates a causality dilemma regarding the aetiology of
patients’ perception of decreased HRQoL: severity of OD
or impact of bolus modification. As limited information
was able to be found on this specialised topic, an expanded
Qual Life Res
123
search examining the impact of OD on QoL may address
some of these issues.
Clinicians should be aware of the potential negative
impact bolus modification may have on HRQoL and take
this into consideration when choosing to prescribe bolus
modification, particularly in populations (such as chronic
dysphagia) where the balance between swallowing safety
and long-term patients’ well-being may be more indefinite.
Clinicians are encouraged to open a dialogue with their
patients about their HRQoL and where possible make use
of dysphagia-specific QoL tools as part of their assessment
battery for this group to promote holistic assessment and
management of patients with OD.
Recommendations
More research on HRQoL among participants with
oropharyngeal dysphagia.
Further exploration of the effects that different bolus
modification management techniques have upon patient
HRQoL outcomes, with particular emphasis on the
impact of modified food textures.
Future studies examining the impact of bolus modifi-
cation on HRQoL should address the effect disorder
severity may have on QoL results.
More research is needed addressing patient compliance
with bolus modification as recommended by therapists,
with special emphasis on the patient perceptions of
their self-determination in treatment choices and
patient/caregiver rationale for why individuals do or
do not comply with these recommendations.
Clinicians should be aware of the benefits and disad-
vantages of bolus modification, including efficacy and
compliance issues as well as its impact on HRQoL.
Acknowledgments The authors declare that they have no conflict of
interest.
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... Oropharyngeal dysphagia (OD) or deglutition disorders are associated with dehydration, malnutrition, aspiration pneumonia, and even death [1][2][3][4]. Apart from affecting physical well-being, dysphagia has a major impact on a person's quality of life [5,6]. Therefore, self-report measures are important for dysphagia assessment [7,8]. ...
... The first contrast had an eigenvalue of 3.43, which is greater than the value (two eigenvalue units) confirming that there is a second dimension and the eigenvalue of the second contrast (2.11), explaining 4.8% of the variance, which is the smallest amount that could indicate the possibility of a third dimension. The PCA divided the items into two groups: one with the Rasch dimension items 1, 2, 3, 4, 11, 20, 24, and 25 from the physical (P) subscale and 17,19, 21 from the emotional (E) subscale and another with a second dimension with items 6,7,9,10,14,15,16,22, and 23 from the functional (F) subscale and items 8, 12, 13, and 18 from the Emotional (E) subscale. This would suggest, based on the theoretical logic for QoL, that for people with dysphagia, QoL is affected by physical symptoms and the functional impact on daily life. ...
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Background/Objectives: The Dysphagia Handicap Index (DHI) is commonly used in oropharyngeal dysphagia (OD) research as a self-report measure of functional health status and health-related quality of life. The DHI was developed and validated using classic test theory. The aim of this study was to use item response theory (Rasch analysis) to evaluate the psychometric properties of the DHI. Methods: Prospective, consecutive patient data were collected at dysphagia or otorhinolaryngology clinics. The sample included 256 adults (53.1% male; mean age 65.2) at risk of OD. The measure’s response scale, person and item fit characteristics, differential item functioning, and dimensionality were evaluated. Results: The rating scale was ordered but showed a potential gap in the rating category labels for the overall measure. The overall person (0.91) and item (0.97) reliability was excellent. The overall measure reliably separated persons into at least three distinct groups (person separation index = 3.23) based on swallowing abilities, but the subscales showed inadequate separation. All infit mean squares were in the acceptable range except for the underfitting for item 22 (F). More misfitting was evident in the Z-Standard statistics. Differential item functioning results indicated good performance at an item level for the overall measure; however, contrary to expectation, an OD diagnosis presented only with marginal DIF. The dimensionality of the DHI showed two dimensions in contrast to the three dimensions suggested by the original authors. Conclusions: The DHI failed to reproduce the original three subscales. Caution is needed using the DHI subscales; only the DHI total score should be used. A redevelopment of the DHI is needed; however, given the complexities involved in addressing these issues, the development of a new measure that ensures good content validity may be preferred.
... Between 2014 and 2017, 194 people over the age of 70 died from choking in the residential care home sector (Office of National Statistics, 2018). The Care Quality Commission mentioned unsafe practice in relation to the care of people with dysphagia in 12 care home inspection reports from 2015(The Care Quality Commision, 2018. ...
... Care home staff reported the main training they had received was focused on food and fluid modification. Despite the poor evidence for its efficacy and concerns about long-term harms (Rosenvinge & Starke., 2005;Robbins et al., 2008;Swan, Speyer, Heijnen, Wagg & Cordier, 2015) food and fluid modification is therefore perceived by staff as the main strategy for managing residents with dysphagia. ...
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Background Dysphagia is common in nursing home (NH) residents. Staff may not always be able to access speech and language therapist (SLT) assessments in a timely manner and there are some reports of nurses initiating or changing modified diets in these circumstances. Methods A mixed quantitative and qualitative approach was used to analyse responses to an online anonymized survey of senior nurses working in Irish NHs. They were asked about their experience of delays accessing SLT services and whether they would ever initiate or change modified diets. Respondents were asked if they would give water to a thirsty resident, prescribed mildly thick liquids, who demanded it on a hot day because thickened fluid was not thirst quenching. Results Of 77 nurses surveyed, 63 (82%) responded. Three quarters reported delays accessing SLT services sometimes or often. Thirty-four (54.0%) would not give the thirsty resident water. About 70% reported that thickened fluids or modified texture diets were started without SLT sometimes or often. A third of respondents would thicken fluids or modify food to a greater extent than previously recommended but very few would make a diet less restrictive. The main themes that emerged from the comments provided were related to the uncertainty and dilemmas created for staff, what mitigating actions they might take in those circumstances and the need for better guidance and better access to SLT services. Discussion Delays accessing SLT services are common for Irish NHs, and staff may initiate or change modified diets themselves in these circumstances. The responses suggest a widespread, and unjustified, belief that thicker or more modified is better for those with dysphagia. Clear and accurate guidance, and a better SLT service, is needed for NH staff.
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Aim To map existing evidence and identify gaps in the literature concerning psychosocial impacts of being nil by mouth (NBM) as an adult. Design A scoping review of the literature was undertaken using JBI guidance. A protocol was registered on the Open Science Framework (osf.io/43g9y). Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta‐Analysis extension for Scoping Reviews (PRISMA‐ScR). Methods A comprehensive search of six databases (CINAHL, Embase, MEDLINE, PsycINFO, SCOPUS and Web of Science) was performed for studies published up to February 2023, with no restriction to study type. A scope of the grey literature was also undertaken. Two authors independently assessed eligibility and extracted data. Descriptive statistical analysis and narrative synthesis were used, and patient and public involvement included in funding discussions. Results A total of 23 papers were included in the review, consisting of 14 primary studies (7 qualitative and 7 quantitative) and 9 grey literature. Both global psychological distress and distress specific to being NBM (thirst, missing food and drink) were reported. Caregivers also experience distress from their family member being NBM. Furthermore, social impacts were reported for both patient and caregiver, primarily social isolation and subsequent low mood. Conclusion Furthermore, research is needed to understand the prevalence of this population, how best to measure psychosocial impacts and to explore whether (and how) psychosocial impacts change over time. Advancement in this area would enable better service development to optimize care for this patient group. What is known about this topic? Eating and drinking provides more than nutrition and hydration. A wide range of conditions can lead to recommendations for no longer eating and drinking (nil by mouth). Being nil by mouth (NBM) for short periods such as pre‐operative fasting causes distress; however, little is understood about impact on longer‐term abstinence from eating and drinking. What this paper adds? Psychosocial consequences of being nil by mouth (NBM)have been investigated by both quantitative and qualitative studies. Being NBM impacts both patients and caregivers in various psychosocial aspects, including distress and social isolation. Several gaps remain, however, regarding ways to measure psychosocial impact of being NBM.
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Purpose: Speech-language pathologists (SLPs) are responsible for addressing psychosocial factors, such as fear, embarrassment, disgust, anxiety, and depression, as they relate to dysphagia to ensure effective symptom management; however, SLP understanding of such responsibility remains largely unexplored.Methods: This study was conducted by sharing a survey with SLPs to 1) analyze their awareness and acknowledgment of psychosocial factors experienced by adult clients with dysphagia, and 2) pinpoint whether a need for broader education and awareness of psychosocial symptoms experienced by adults with dysphagia exists in the field of communication sciences and disorders. Qualitative and quantitative data analysis were performed to analyze the survey findings.Results: Findings regarding SLP education demonstrate that the majority of SLPs did not receive education on the topic of psychosocial factors and their relation to adults with dysphagia. The majority of SLPs actively screen their adult clients with dysphagia for psychosocial symptoms (62.96%), and the most common formal screening tool is the Eating Assessment Tool (47.17%). SLP respondents show a majority preference for increased access to information and education regarding psychosocial symptoms as they relate to adults with dysphagia (92.45%).Conclusions: The study revealed a general lack of education provided to SLPs by higher education programs, differing preferences in screening tools utilized by SLPs, and a shared desire among SLPs to have increased access to information regarding their professional role and acknowledgement of psychosocial barriers adults with dysphagia may experience.
Article
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Dysphagia can have severe consequences for the patient's health, influencing health-related quality of life (HRQoL). Sound psychometric properties of HRQoL questionnaires are a precondition for assessing the impact of dysphagia, the focus of this study, resulting in recommendations for the appropriate use of these questionnaires in both clinical practice and research contexts. We performed a systematic review starting with a search for and retrieval of all full-text articles on the development of HRQoL questionnaires related to oropharyngeal dysphagia and/or their psychometric validation from the electronic databases PubMed and Embase published up to June 2011. Psychometric properties were judged according to quality criteria proposed for health status questionnaires. Eight questionnaires were included in this study. Four are aimed solely at HRQoL in oropharyngeal dysphagia: the deglutition handicap index (DHI), dysphagia handicap index (DHI'), M.D. Anderson Dysphagia Inventory (MDADI), and SWAL-QOL, while the EDGQ, EORTC QLQ-STO 22, EORTC QLQ-OG 25 and EORTC QLQ-H&N35 focus on other primary diseases resulting in dysphagia. The psychometric properties of the DHI, DHI', MDADI, and SWAL-QOL were evaluated. For appropriate applicability of HRQoL questionnaires, strong scores on the psychometric criteria face validity, criterion validity, and interpretability are prerequisites. The SWAL-QOL has the strongest ratings for these criteria, while the DHI' is the most easy to apply given its 25 items and the use of a uniform scoring format. For optimal use of HRQoL questionnaires in diverse settings, it is necessary to combine psychometric and utility approaches.
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The aim of this work was to evaluate the psychometric properties of the Dutch version of the Swallowing Quality-of-Life Questionnaire (DSWAL-QOL). A cross-sectional survey of 295 dysphagic patients and 124 healthy controls was studied to evaluate the validity and reliability of the DSWAL-QOL, and 50 patients were recruited for the test-retest reliability. Construct validity was validated through principal component analysis and a correlation study between the DSWAL-QOL and the SF-36. The psychometric properties of the DSWAL-QOL were found to be largely similar to those of the original SWAL-QOL, except the Sleep scale; the composite Symptoms score reaffirms its validity in this study. The DSWAL-QOL was able to differentiate between dysphagic and nondysphagic patients and is sensitive to disease severity as measured by known-groups validity, based on different food and liquid textures. The DSWAL-QOL is a clinically valid and reliable tool for assessing the quality of life in Dutch-speaking dysphagic patients, regardless of the cause or severity of the dysphagia.
Article
Objective: This study was conducted to delineate the incidence and outcome of dysphagia among hospitalized patients who were referred for rehabilitation because of brainstem stroke. Design: We retrospectively reviewed the medical records of 36 patients who were admitted because of brainstem stroke. Information on the patients' clinical features, feeding status, and the results of clinical and videofluoroscopic swallowing examinations were obtained through chart review. Follow-up interviews were conducted via telephone to learn the general medical condition and feeding status of the patients 7-43 mo after hospital discharge. Results: A total of 81% of the patients had dysphagia at the time of initial clinical swallowing evaluation, which was performed 10-75 days after the onset of stroke. A total of 79% of the dysphagic individuals depended on tube feeding at the initial evaluation; 22% of all individuals could not resume oral intake at discharge. Statistical analyses revealed a significant association between poor outcome and disease involving the medulla, the presence of a wet voice during the initial swallowing test, and a delay or absence of the swallowing reflex. The incidence of aspiration pneumonia was 11%. There was a correlation between the detection of aspiration by modified barium meal video-fluoroscopy and the development of aspiration pneumonia. Follow-up interviews showed that 88% of the 27 patients who were contacted had resumed full oral intake 4 mo after the onset of stroke. Conclusions: The incidence of dysphagia was relatively high in our study population. The long-term outcome was favorable.
Article
Gustatory and chemical stimulations of the oral cavity and pharyngeal mucosa by carbonated water improve pharyngeal swallowing. We compared changes in pharyngeal swallowing and sensory aspects induced by a carbonated beverage preferred by Japanese with those induced by carbonated water, a sports drink, and tap water in healthy young subjects and elderly inpatients with no swallowing problems. The duration of laryngeal elevation (DOLE) for swallowing the carbonated beverage and water in the second session was shorter compared to that for water in the first session in the elderly subjects. The DOLE and the duration of suprahyoid muscle activity for swallowing were longer in the elderly subjects than in the young subjects for all beverages. Beverages that the subjects subjectively felt were easy to swallow were the sports drink and carbonated beverage, whereas they stated that carbonated water was less easy to swallow. In the elderly subjects, swallowing ability latently decreased, even though they had no problem swallowing in their daily lives, and it was assumed that the carbonated beverage improved pharyngeal swallowing. In addition, the carbonated beverage also influenced the subsequent swallowing of water, showing a persistent effect. It was suggested that carbonated beverages are easy to swallow and effective for the improving pharyngeal swallowing.
Article
Background & aims In a number of countries, including Denmark, there are written guidelines describing the various types of texture modified foods and thickened fluids. None of these are based on a systematic review of texture modified food and thickened fluid as being more sufficient than regular food and fluid, and thereby preventing or reducing the impact of dysphagia. The present article aims to provide recommendations based on evidence for adults (≥18 years) with oropharyngeal dysphagia as soon as possible after diagnosis in order to ensure sufficient and safe oral consumption of nutrition as long as possible and thereby preventing malnutrition, dehydration, aspiration and aspiration pneumonia. Methods A systematic review was performed after definition of four clinical questions regarding prevention of malnutrition, dehydration, aspiration and aspiration pneumonia. Answers to the clinical questions led to the development of recommendations according to the evidence hierarchy (A indicates the highest level of recommendation). Results To reduce risk of aspiration pneumonia, “chin down” procedure and thin fluid should be first choice rather than thickened fluid in cases of chronic dysphagia (A), and in the acute phase individual counselling with follow up and adjustment of the consistency of texture modified food and thickened fluid should be given (A). To improve nutritional status, special made and nutritionally enriched, texture modified foods (pureed and minced) and thickened fluids (nectar, honey and pudding consistency) are recommended for elderly persons with chronic dysphagia (B*). Conclusion Since there are only a few, high quality studies, the evidence in favour of texture modified foods and thickened fluids as being effective in preventing or reducing the impact of dysphagia is not strong. More studies are needed to show whether texture modified foods and thickened fluids are effective in the management of chronic and acute dysphagia.
Article
The use of thickened liquids is a common compensatory strategy to improve swallow safety. The purpose of this study was to determine the optimal liquid viscosity to use to promote successful swallowing in a specific subset of dysphagic patients who swallow puree without aspiration but thin liquid with aspiration. A referral-based sample of 84 consecutive inpatients from a large, urban, tertiary-care teaching hospital who met the study criteria was analyzed prospectively. Inclusion criteria were no preexisting dysphagia, a successful pharyngeal swallow without aspiration with puree consistency but pharyngeal dysphagia with aspiration of thin liquid consistency, and stable medical, surgical, and neurological status at the time of transnasal fiberoptic swallow testing and up to 24 h after recommendations for oral alimentation with a modified diet consisting of nectar-like and honey-like thickened liquids. Success with ingesting both nectar-like and honey-like thickened liquids and clinically evident aspiration events were recorded. Care providers were blinded to the study's purpose. All 84 patients were successfully ingesting nectar-like and honey-like thickened liquids at the time of swallow testing and up to 24 h after testing. A specific subset of dysphagic patients who swallowed puree without aspiration but aspirated thin liquid demonstrated 100 % successful swallowing of both nectar-like and honey-like thickened liquids. Therefore, a nectar-like thickened liquid appears to be adequate to promote safe swallowing in these patients and, because of patient preference for the least thick liquid, may enhance compliance and potentially contribute to maintenance of adequate hydration requirements.
Article
A broad patient-completed screening tool in routine clinical practice in head and neck oncology has merit, but clinicians should be aware that its simplicity could lead to some patients and the detail of their problems being missed. The purpose of this study was to compare the University of Washington Quality of Life (UWQoL) swallowing domain with the MD Anderson Dysphagia Inventory (MDADI) in relation to the need for interventions for swallowing around one year after treatment. The group comprised 112 consecutively referred patients to speech and language therapy between January 2007 and August 2009 after primary operation for previously untreated oral and oropharyngeal squamous cell carcinoma (SCC). A total of 78 patients completed questionnaires (median time of assessment 11.7 months, IQR 6.1-12.2). There were significant (p<0.001) and moderately strong correlations (r(s)=0.51-0.62) between the UWQoL swallowing domain score and MDADI subscales and total scores, and also with individual MDADI questions: taking a great deal of effort (r(s)=0.71); being upset (r(s)=0.61); and not going out (r(s)=0.62) were the strongest in regard to swallowing. Use of a gastrostomy tube was associated with worse UWQoL and MDADI scores. In conclusion, patients who score 100 on the UWQoL do not require swallowing to be evaluated further. Those who score 70 could benefit from the detailed MDADI to help to clarify the specific problem and the impact it has before being referred to speech and language therapy. Those who score less than 70 should be brought to the attention of speech and language therapists to confirm that appropriate support and intervention are in place.
Article
Background Head and neck tumors and their treatments negatively affect speech, swallowing, body image, and quality of life (QOL). The purpose of this study was to allow us to evaluate the impact of flap reconstructive surgery with adjuvant radiotherapy (RT) on QOL and psychological functioning.Methods Thirty-six of 153 consecutive patients surgically treated for carcinoma of the oral cavity received adjuvant RT. Late effects of RT and psycho-oncological assessment were performed.ResultsIn more than 50% of the cases examined, moderate to severe late toxicity was observed, regarding subcutaneous tissues, salivary function, dysphagia, and taste impairment. Patients with severe dysphagia showed higher levels of depression and anxiety (p < .05). Dysphagia and taste impairment were seen to be associated with lower global health and QOL. The Draw a Person Test (DAP) showed severe problems in self-perceived body image in 33% of the sample.Conclusion Dysphagia and taste impairment are associated with QOL and depression; our data suggest a different evaluation between self-reported and clinician-rating scales. DAP is a provocative tool that merits further research. © 2010 Wiley Periodicals, Inc. Head Neck, 2011
Article
Oral and pharyngeal dysphagia is a common symptom in patients with amyotrophic lateral sclerosis (ALS) and is the result of a progressive loss of function in bulbar and respiratory muscles. Clinicians involved in the management of ALS patients should be familiar with the common clinical findings and the usual patterns of temporal progression. The prevention of secondary complications, such as nutritional deficiency and dehydration that compound the deteriorating effects of the disease, requires careful monitoring of each patient's functional status and timely intervention with appropriate management techniques.
Article
This paper describes the World Health Organization's project to develop a quality of life instrument (the WHOQOL). It outlines the reasons that the project was undertaken, the thinking that underlies the project, the method that has been followed in its development and the current status of the project. The WHOQOL assesses individuals' perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It has been developed collaboratively in several culturally diverse centres over four years. Piloting of the WHOQOL on some 4500 respondents in 15 cultural settings has been completed. On the basis of this data the revised WHOQOL Field Trial Form has been finalized, and field testing is currently in progress. The WHOQOL produces a multi-dimensional profile of scores across six domains and 24 sub-domains of quality of life