P
atient
C
oncerns
I
nventory
for
head
and
neck
cancer
: B
razilian
cultural
adaptation
R
ev
A
ssoc
M
ed
B
ras
2017; 63(4):311-319
317
those who underwent surgery without RT selected saliva-
tion and depression (33%), while one-quarter selected
strategies to confront the disease and the treatment (24%)
and mood (29%). The physical domain score was signifi-
cantly associated with the selection of items for appetite,
mouth opening, pain in head and neck, swallowing, swell-
ing, recreation, relationships, speech/voice/being under-
stood and fear of adverse events as well as selection of
dentist, speech pathologist and oncologist/radiotherapist.
The socio-emotional domain score was significantly as-
sociated with the items for appetite, chewing/eating, mouth
opening, swallowing, taste, feeding tube, speech/voice/
being understood and memory as well as speech patholo-
gist and oncologist/radiotherapist. Patients with UW-QOL
composite scores of below 50 were particularly affected.
Additional concerns and specialists that were not pres-
ent in the original instrument were suggested by the patients
under the item “others.” These items and specialists in-
cluded the following: spouse/partner (twice), gastroesoph-
ageal reflux, follow-up, hair loss, choking, dementia, qual-
ity of life, transportation to hospital (displacement/cost),
health insurance, dependence on others to provide support
in general, diabetes, alternative treatments, burning tongue,
sensation of suffocation, geriatrician, professor of physical
education specialized in oncology, nose-ear-throat special-
ist, neurologist, acupuncturist, hematologist, vascular
physician, dermatologist (four times), gastroenterologist,
nephrologist, ophthalmologist and orthopedist.
D
iscussion
The assessment of HRQOL of patients with HNC is typ-
ically measured using specific questionnaires that cover
a complex conceptual framework involving physical, psy-
chological and social domains.
18
Worldwide, the most
widely used questionnaires are the EORTC QLQ-H&N35,
19
the UW-QOL
3,15,16
and FACT the H&N.
20
The conception and main goals of the PCI are differ-
ent fromHRQOL questionnaires available in Brazil, since
it enables the health team to know in real time the pri-
orities and concerns raised by patients, helping them to
target and structure consultations and promote shared
decision-making and multidisciplinary care.
10
Moreover,
the PCI encompasses a wide range of different concerns
in diverse areas of the patient’s life, which may be affected
by the disease and/or treatment. Given the importance of
this topic as well as the increased survival of individuals
with HNC, the availability of a specific and easy-to-use
clinical tool in Brazilian Portuguese is necessary to allow
physicians to identify the concerns that permeate the life
of these patients during and after their treatment and to
facilitate any referrals or clarifications they require. Espe-
cially in busy referral medical centers, this instrument
could help to focus the clinical consultation on the patients
needs, promote a more comprehensive multidisciplinary
care, which could result in a more personalized approach.
Although the study consisted mainly of patients with
tumors of the oral cavity, oropharynx and larynx with a
few cases of nasopharynx, hypopharynx, nasal cavity, max-
illary sinus, and other HNC sites, the patient sample was
fully represented by different tumor stages, treatment
modalities and time intervals from diagnosis. Several
other concerns and specialists not in the original instru-
ment emerged during this study, which should be con-
sidered in future refinements of the PCI, a factor already
considered by the original author (SNR) since the initial
conception of the PCI.
10
Overall, patient impressions about the PCI were largely
favorable, as illustrated by the following comments: “Some-
TABLE 1
(Cont.) Patients characteristics and the number of items and professional specialists selected in the PCI (n=84).
Number of issues selected
Number of professionals selected
5+ items
2+ professionals
n
Median IQR % n
Median IQR % n
Physical function
(UW-QOL)
++**
<50
9
9
8-16
100
9
3
2-4
89
8
50-74
19
12
9-16
84
16
1
0-5
47
9
75-89
26
9
4-13
73
19
1
0-2
38
10
90+
30
6
3-9
63
19
0
0-1
10
3
Social-emotional
(UW-QOL)
++*
<50
20
12
8-15
90
18
1.5
0-4
50
10
50-74
27
9
6-14
85
23
1
0-3
48
13
75-89
20
6
4-10
70
14
0
0-1
20
4
90+
17
4
2-8
47
8
0
0-1
18
3
+
0.001, p<0.01, Spearman correlation for the number of issues selected; *0.001, p<0.01, Spearman correlation for the number of specialists selected;
++
p<0.001, Spearman correlation for the num-
ber of issues selected; **p<0.001, Spearman correlation for the number of specialists selected; none of the other patient characteristics were associated at p<0.01 with the number of issues or spe-
cialists selected according to the Mann-Whitney test (gender, clinical T, N, reconstruction, RT, surgery) or Kruskal-Wallis test (site, treatment); RT: radiotherapy; IQR: interquartile range; PCI: Pa-
tient Concerns Inventory; UW-QOL: University of Washington Quality of Life Questionnaire.