Keywords
head and neck neoplasms - quality of life - caregivers - radiotherapy
Introduction
Head and neck cancer (HNC) is the sixth cause of malignant neoplasms in the world
and represents a set of tumors that affect the anatomical structures of the oral and
nasal cavity, paranasal sinuses, pharynx, larynx, salivary glands and thyroid gland.
The most prevalent histological type is squamous cell carcinoma, which accounts for
∼ 90% of all cases. In Brazil, it is estimated that around 450,000 new cancer cases
will occur in 2020 (excluding cases of non-melanoma skin cancer), of which 15,190
will be of the oral cavity, and 7,650 will be laryngeal neoplasms.[1]
[2]
[3]
[4]
[5]
[6]
[7]
The treatment of HNC consists of surgery, radiotherapy and chemotherapy or a combination
of these approaches. Often, depending on both tumor location/extent and treatments
employed, the patient may have local deformities, as well as effects on basic functions
such as speaking, breathing, swallowing and eating. These changes can leave patients
distressed, with relational difficulties and social isolation, so, all changes resulting
from the tumor and treatment can directly impact their quality of life.[1]
[8]
[9]
[10]
[11]
[12]
The assessment of the quality of life of patients with head and neck cancer helps
in optimizing the therapeutic choice, balancing the patient's needs and gains in the
recovery, and, therefore, not based solely on tumor staging and clinical aspects.[11]
[13]
[14]
Due to the physical and emotional impairment attributed to cancer, many patients need
a caregiver, who is usually a family member. In patients with HNC, the caregiver is
usually family-based and assumes various care responsibilities. These activities can
have significant consequences and may overwhelm the caregiver. Factors that interfere
with the caregiver burden are the time devoted to care, the available financial resources,
the caregiver's psychological, physical and social conditions, and the burden derived
from caregiving.[15]
[16]
[17]
[18]
In this context, the present study aimed to evaluate the quality of life, shame, and
stigma of patients with head and neck cancer undergoing radiotherapy as well as caregiver
burden.
Method
Sample
Quantitative descriptive cross-sectional study conducted at Memorial Radiotherapy
Clinic in the city of Poços de Caldas - MG, from April to December 2018. Recruitment
occurred as the patient accompanied or not by his caregiver presented to perform the
radiotherapy session, both invited to participate in the study. The sample included
42 participants with head and neck cancer and 17 caregivers. The work was approved
by the ethics committee Centro Universitário das Faculdades Associadas de Ensino (UNIFAE)
by CAAE: 83495118.7.0000.5382.
Inclusion criteria for the patient were: age over 18 years; confirmed diagnosis of
head and neck cancer by histopathological examination; being on radiotherapy for cancer.
The primary sites included were oral and nasal cavity, paranasal sinuses, pharynx,
larynx, glands (parotid, submandibular and sublingual) and hidden primary tumor. For
the caregivers, the following inclusion criteria were chosen: age over 18 years, stay
with the patient for at least 4 hours a day and for at least 5 days a week, be aware
of the patient's disease and be caregiver of the interviewed patient only. The exclusion
criterion for both patient and caregiver was the impossibility of answering the questionnaires
due to difficulty in understanding the questions.
The patient answered two questionnaires at the same time: Functional Assessment of
Cancer Therapy for Patients with Head & Neck Cancer (FACT-H&N) -version 4.0 and Shame
and Stigma Scale (SSS), translated and validated for Portuguese/Brazil.[12]
[19]
[20]
The caregiver answered two questionnaires, the Zarit Burden Interview Scale (ZBI),
to assess the caregiver burden, and the Palliative Performance Scale (PPS), to assess
the patient's dependence level, both translated and adapted to Portuguese/Brazil.[21]
[22]
[23]
Data Analysis
For data analysis, we used the JASP version 0.9.0.1 statistical software (Eric-Jan
Wagenmakers (room G 0.29) Department of Psychological Methods University of Amsterdam
Nieuwe Achtergracht 129B Amsterdam, The Netherlands), with a confidence level of p ≤ 0.05. In a preliminary way, descriptive measurements of all variables were surveyed,
calculating the frequency and percentage of cases for each categorical measure and,
for scalar measures, the mean and standard deviation values were obtained.
The Spearman correlation was performed to calculate the associations between the ordinal
or scalar variables. Comparisons between two groups were made using the Man-Whitney
independent sample test. Nonparametric analyses were chosen because the values of
the normality test (Shapiro-Wilk) suggested violations
Results
The study included 42 patients with head and neck cancer during treatment with radiotherapy.
The characteristics and clinical data of the patients are described in [Tables 1] and [2]. There was a predominance of males, represented by 78.6% of the patients, the average
age was 60.3 years ( ± 10.7), range 36–79. Of the respondents, 88.1% were not working
at the time of the interview, and the average monthly income of the families was around
2.1 minimum wages ( ± 1.7).
Table 1
Description of patients and caregivers
|
|
Patient n = 42
|
Caregiver n = 17
|
|
Categories
|
Value
|
% Total
|
Value
|
% Total
|
|
Gender
|
Female
|
9
|
21.4
|
11
|
64.7
|
|
Male
|
33
|
78.6
|
6
|
35.3
|
|
Marital Status
|
Married
|
26
|
61.9
|
10
|
58.8
|
|
Divorced
|
2
|
4.8
|
2
|
17.7
|
|
Single
|
8
|
19.0
|
3
|
5.9
|
|
Stable union
|
2
|
4.8
|
2
|
11.8
|
|
Widower
|
4
|
9.5
|
0
|
0
|
|
Religion
|
Catholic
|
35
|
83.3
|
15
|
88.2
|
|
Spiritism
|
1
|
2.4
|
0
|
−
|
|
Evangelical
|
6
|
14.3
|
2
|
11.8
|
|
Educational level
|
Illiterate
|
4
|
9.5
|
0
|
−
|
|
Incomplete elementary
|
22
|
52.4
|
9
|
52.9
|
|
Complete elementary
|
6
|
14.3
|
2
|
11.8
|
|
Incomplete high school
|
2
|
4.8
|
1
|
5.9
|
|
Complete high school
|
4
|
9.5
|
4
|
23.5
|
|
Incomplete university
|
1
|
2.4
|
1
|
5.9
|
|
Complete university
|
3
|
7.1
|
0
|
−
|
|
Profession
|
Rural activity
|
10
|
24.4
|
1
|
5.9
|
|
Cleaning assistant
|
2
|
4.7
|
0
|
−
|
|
Hairdresser
|
2
|
4.7
|
0
|
−
|
|
Merchant
|
2
|
4.7
|
1
|
5.9
|
|
Seamstress
|
1
|
2.4
|
3
|
17.7
|
|
From home
|
1
|
2.4
|
3
|
17.7
|
|
Electrician
|
2
|
4.7
|
0
|
−
|
|
Driver
|
4
|
9.7
|
1
|
5.9
|
|
Baker
|
2
|
4.7
|
0
|
−
|
|
Bricklayer
|
2
|
4.7
|
0
|
−
|
|
General services
|
3
|
7.3
|
1
|
5.9
|
|
Others
|
11
|
26.4
|
7
|
41.3
|
Table 2
Patient clinical data
|
Characteristic
|
Category
|
Primary subsite
|
Value
|
%
|
% Total
|
|
Cancer type and location
|
Oral cavity
|
|
12
|
28.6
|
|
Lower gum
|
2
|
16.6
|
4.8
|
|
Tongue
|
4
|
33.3
|
9.5
|
|
Retromolar trigone
|
4
|
33.3
|
9.5
|
|
Not localizable
|
2
|
16.6
|
4.8
|
|
Pharynx
|
11
|
26.3
|
|
Oropharynx
|
|
7
|
63.6
|
16.7
|
|
Amygdala
|
5
|
71.4
|
11.9
|
|
Tongue base
|
1
|
14.3
|
2.4
|
|
Not localizable
|
1
|
14.3
|
2.4
|
|
Rhinopharynx
|
2
|
18.2
|
|
|
Hypopharynx
|
|
2
|
18.2
|
|
|
Salivary glands
|
2
|
4.8
|
|
Larynx
|
11
|
26.3
|
|
Supraglottic
|
3
|
27.3
|
7.1
|
|
Glottis
|
8
|
72.7
|
19.0
|
|
Paranasal sinuses
|
1
|
2.4
|
|
Hidden primary tumor
|
5
|
11.9
|
|
Histological type
|
Adenoid cystic carcinoma
|
1
|
2.4
|
|
Undifferentiated carcinoma
|
3
|
7.1
|
|
SCC
|
38
|
90.5
|
|
Staging
|
I
|
5
|
11.9
|
|
II
|
5
|
11.9
|
|
III
|
6
|
14.3
|
|
IV
|
24
|
57.1
|
|
Ignored
|
2
|
4.8
|
|
Treatment
|
Category
|
Value
|
% Total
|
|
Radiotherapy
|
Exclusive
|
8
|
19
|
|
+ Chemotherapy
|
22
|
52.4
|
|
+ Surgery
|
6
|
14.3
|
|
+ Chemotherapy + surgery
|
6
|
14.3
|
|
No. of radiotherapy sessions
|
Mean (SD)
|
14.1 (10.9)
|
−
|
|
No. of chemotherapy sessions
|
Mean (SD)
|
4.0 (4.2)
|
−
|
|
Habit
|
Category
|
Value
|
% Total
|
|
Tobacco
|
Smoking ceased
|
29
|
69.0
|
|
Active smoker
|
6
|
14.3
|
|
Never smoked
|
7
|
16.7
|
|
Type of cigarette
|
Industrialized
|
24
|
68.6
|
|
Handcrafted
|
7
|
20
|
|
Both
|
4
|
11.4
|
|
Cigarettes a day
|
Mean (SD)
|
18.51 (11.34)
|
-
|
|
Consumption time (in years)
|
Mean (SD)
|
36.6 (14.78)
|
-
|
|
Alcoholic drink
|
Stop drinking
|
27
|
64.2
|
|
Drink
|
1
|
2.4
|
|
Never drank
|
14
|
33.4
|
|
Type of drink
|
Distilled drinks
|
22
|
78.6
|
|
Beer
|
6
|
21.4
|
|
Consumption time (in years)
|
Mean (SD)
|
31.1 (13.7)
|
|
Abbreviations: SD, standard deviation; SCC, squamous cell carcinoma.
The time elapsed between the 1st symptom and the beginning of treatment was on average
1 year and 4 months ( ± 1.5) with 95% CI (0.9–1.8). And the time interval between
the 1st biopsy and treatment was 6 months on average, with SD ( ± 8.0) and 95% CI
(3.6–8.4).
The diagnosis was made at a more advanced stage, and 71.4% of the patients were at
stage III or IV at the time of treatment. It was also observed that the worse the
staging, the higher the alcohol use and the daily dose (p < 0.05). Regarding quality of life, advanced staging showed worse FACT-H&N response
to the additional concern domain (p < 0.05).
Of the patients interviewed, 18 (42.8%) had a caregiver, 24 did not need or did not
have a caregiver, and only one caregiver refused to participate in the research. The
caregivers were mostly female (64.7%); the average age was 45.6 years ( ± 14.9), with
the minimum age being 25 and the maximum age 73; 58.8% were married; and 88.2% were
Catholic, as shown in [Table 3]. Regarding family income, the average was 1.9 ( ± 1.0) minimum wages. Informal caregivers
represented 100% of respondents, with 94.1% belonging to the family nucleus, and the
average daily time devoted to care was 8.0 hours ( ± 2.5).
Table 3
Descriptive related to care
|
Variable
|
Category
|
Value
|
% Total
|
|
Relationship
|
Wife
|
5
|
29.4
|
|
Son/daughter
|
6
|
35.3
|
|
Brother/sister
|
1
|
5.9
|
|
Husband
|
2
|
11.8
|
|
Unrelated
|
1
|
5.9
|
|
Nephew/niece
|
1
|
5.9
|
|
Careful time (number of days of the week)
|
Mean
|
6.7
|
−
|
|
SD
|
0.8
|
−
|
|
Account with help
|
Not
|
4
|
23.5
|
|
Sometimes
|
6
|
35.3
|
|
Ever
|
7
|
41.2
|
Abbreviation: SD, standard deviation.
The FACT-H&N results are shown in [Table 4]. In the data analysis, when domains were evaluated, the additional concerns (H&N
questions), which presents issues specific to both tumor and treatment symptoms, presented
the worst response. Regarding the global scales, the worst was the Trial Outcome Index
(TOI) scale, which is the final total index of the physical and functional domains
and additional concerns (H&N questions).
Table 4
Descriptive analysis of the Functional Assessment of Cancer Therapy for Head and Neck
Cancer questionnaire
|
Scores
|
Mean
|
SD
|
Median
|
Min/
max
|
Proportional average to maximum possible score (%) (95% CI)
|
|
PWB
|
0–28
|
18.7
|
6.2
|
19
|
05–28
|
66.7 (59.9–73.4)
|
|
SWB
|
0–28
|
23.8
|
4.1
|
24.5
|
14–28
|
84.9 (80.4–89.4)
|
|
EWB
|
0–24
|
19.7
|
5.0
|
21.5
|
04–24
|
82.0 (75.8–88.3)
|
|
FWB
|
0–28
|
21.7
|
5.9
|
22.5
|
04–28
|
77.5 (71.1–83.8)
|
|
Additional concerns (H&N questions)
|
0–40
|
23.1
|
7.8
|
21.5
|
07–40
|
57.8 (51.9–63.7)
|
|
TOI
|
0–96
|
63.6
|
17.0
|
62.5
|
27–95
|
66.2 (60.9–71.5)
|
|
FACT- G
|
0–108
|
83.9
|
17.4
|
87.3
|
31–107
|
77.7 (72.8–82.5)
|
|
FACT-H&N
|
0–148
|
107.0
|
22.9
|
108.5
|
49–147
|
72.3 (67.6–77.0)
|
Abbreviations: CI, confidence interval; FACT-G, Functional Assessment of Cancer Therapy:
General; FACT-H&N, Functional Assessment of Cancer Therapy for Head and Neck Cancer;
EWB, emotional well-being; FWB, functional well-being; PWB, physical well-being; SD,
standard deviation; SSS, Shame and Stigma Scale; SWB, social and family well-being;
TOI, Trial Outcome Index.
[Table 5] presents the results obtained in the Shame and Stigma Scale (SSS). Evaluating the
subscales, the one with the highest average was the feeling of regret (39.28%). The
subscale that had the lowest impact among respondents was in relation to stigma. Although
the issue of stigma and appearance is related to head and neck cancer, the scale had
a global average of only 16.55% ( ± 16.14).
Table 5
Descriptive analysis of the Shame and Stigma Scale (SSS)
|
Mean %
|
SD
|
CI 95%
|
|
Shame with appearance
|
12.6
|
19.8
|
(6.7–18.6)
|
|
Sense of stigma
|
10.1
|
15.2
|
(5.5–14.7)
|
|
Regret
|
39.3
|
33.1
|
(29.3–49.3)
|
|
Speech/social concerns
|
17.1
|
24.9
|
(9.5–24.6)
|
|
Total score
|
16.5
|
16.1
|
(11.7–21.4)
|
Abbreviations: CI, confidence interval; SD, standard deviation.
Patients with caregiver evaluated by the PPS had a mean dependence of 74.12% ( ± 15.43),
and the highest degree of impairment was 50%; the closest to 100%, the lower the impairment.
The degree of caregiver burden presented an average of 21.58 ( ± 12.94), and the higher
the value, the higher the burden.
The correlations between each domain of the FACT-H&N questionnaire were positively
related, as well as the correlations between each domain of the Shame and Stigma Scale
(SSS), the analyzes with statistical significance are shown in [Table 6].
Table 6
Correlation between domains
|
Correlation Between FACT-H&N Domains (Spearman's Rho Positive)
|
|
Subscale
|
FACT-H&N
|
|
p
|
|
PWB
|
SWB
|
[**]
|
0.007
|
|
EWB; FWB; H&N questions; TOI; FACT-G; FACT-H&N
|
[***]
|
< 0.001
|
|
SWB
|
H&N questions
|
[*]
|
0.018
|
|
FWB; TOI; FACT-G; FACT-H&N
|
[***]
|
< 0.001
|
|
EWB
|
H&N questions
|
[*]
|
0.016
|
|
FWB; TOI; FACT-G; FACT-H&N
|
[***]
|
< 0.001
|
|
FWB
|
H&N questions; TOI; FACT-G; FACT-H&N
|
[***]
|
< 0.001
|
|
Additional concerns (H&N questions)
|
TOI; FACT-G; FACT-H&N
|
[***]
|
< 0.001
|
|
TOI
|
FACT-G; FACT-H&N
|
[***]
|
< 0.001
|
|
FACT-G
|
FACT- H&N
|
[***]
|
< 0.001
|
|
Correlation between Shame and Stigma Scale (SSS) domains
(Spearman's Rho positive)
|
|
Subscale
|
SSS
|
|
p
|
|
Shame with appearance
|
Regret
|
[*]
|
0.026
|
|
Sense of stigma; regret; total score
|
[***]
|
< 0.001
|
|
Sense of stigma
|
Regret
|
[**]
|
0.003
|
|
Speech/social concerns
|
[**]
|
0.002
|
|
Total score
|
[***]
|
< 0.001
|
|
Regret
|
Total score
|
[***]
|
< 0.001
|
|
Speech/social concerns
|
Total score
|
[***]
|
< 0.001
|
Abbreviations: CI, confidence interval; FACT-G, Functional Assessment of Cancer Therapy:
General; FACT-H&N, Functional Assessment of Cancer Therapy for Head and Neck Cancer;
EWB, emotional well-being; FWB, functional well-being; PWB, physical well-being; SD,
standard deviation; SSS, Shame and Stigma Scale; SWB, social and family well-being;
TOI, Trial Outcome Index.
*
p < 0.05
**
p < 0.01
***
p < 0.001
The FACT-H&N instruments and the Shame and Stigma Scale showed a negative correlation
between some of their domains. Relevant results are shown in [Table 7].
Table 7
Spearman correlations between the Functional Assessment of Cancer Therapy for Head
and Neck Cancer domains with the Shame and Stigma Scale domains
|
Correlation between domains (Spearman's Rho negative)
|
|
Subscale
|
SSS
|
|
p
|
|
PWB
|
Shame with appearance
|
[*]
|
0.013
|
|
Regret7
|
[*]
|
0.036
|
|
Speech/social concerns
|
[***]
|
< 0.001
|
|
Total score
|
[**]
|
0.002
|
|
SWB
|
Shame with appearance
|
[**]
|
0.007
|
|
Speech/social concerns
|
[**]
|
0.004
|
|
EWB
|
Shame with appearance; regret; total score
|
[***]
|
< 0.001
|
|
Sense of stigma
|
[**]
|
0.001
|
|
Speech/social concerns
|
[**]
|
0.002
|
|
FWB
|
Shame with appearance; sense of stigma; speech/social concerns; total score
|
[***]
|
< 0.001
|
|
Regret
|
[*]
|
0.011
|
|
Additional concerns (H&N questions)
|
Speech/social concerns
|
[**]
|
0.006
|
|
TOI
|
Shame with appearance
|
[**]
|
0.002
|
|
Sense of stigma
|
[*]
|
0.040
|
|
Regret
|
[*]
|
0.025
|
|
Speech/social concerns; total score
|
[***]
|
< 0.001
|
|
FACT-G
|
Shame with appearance; speech/social concerns; total score
|
[***]
|
< 0.001
|
|
Sense of stigma
|
[**]
|
0.001
|
|
Regret
|
[*]
|
0.021
|
|
FACT-H&N
|
Shame with appearance; speech/social concerns; total score
|
[***]
|
< 0.001
|
|
Sense of stigma
|
[*]
|
0.014
|
|
Regret
|
[*]
|
0.034
|
Abbreviations: FACT-G, Functional Assessment of Cancer Therapy: General; FACT-H&N,
Functional Assessment of Cancer Therapy for Head and Neck Cancer; EWB, emotional well-being;
FWB, functional well-being; PWB, physical well-being; SSS, Shame and Stigma Scale;
SWB, social and family well-being; TOI, Trial Outcome Index.
*
p < 0.05
**
p < 0.01
***
p < 0.001
The Zarit scale, which assessed caregiver burden, was negatively correlated with SPP,
Spearman's rho of -0.562 and p < 0.5, the greater the decline in basic functions, the greater the caregiver burden.
Moreover, the fact that the caregiver counted on someone's help revealed a negative
correlation with Zarit scale with p < 0.05.
Quality of life was related to the need for a caregiver, since patients who needed
a caregiver had a lower quality of life than patients who did not need care (p < 0.05), especially in the domains: physical well-being, social and family well-being,
functional well-being, and also in relation to the global domains: TOI, Functional
Assessment of Cancer Therapy: General (FACT-G), FACT-H&N, described in [Table 8]. When comparing the answers obtained in the FACT-H&N questionnaire, there was no
statistically significant difference between male and female patients. There was also
no significance between the answers obtained on the SSS comparing patients with and
without caregivers and also between male and female patients.
Table 8
Comparison between caregiver and non-caregiver patients regarding the Functional Assessment
of Cancer Therapy for Head and Neck Cancer responses
|
Has no caregiver
n = 25
|
Has caregiver
n = 17
|
W
|
p-value
|
Rank-Biserial correlation
|
|
Mean
|
SD
|
Mean
|
SD
|
|
PWB
|
20.5
|
5.8
|
16.6
|
5.8
|
287.5
|
0.027
|
0.409
|
|
SWB
|
25.3
|
3.6
|
22.1
|
3.8
|
309.0
|
0.005
|
0.515
|
|
EWB
|
20.2
|
4.6
|
19.4
|
5.4
|
222.5
|
0.625
|
0.091
|
|
FWB
|
23.0
|
6.0
|
20.4
|
5.2
|
277.5
|
0.051
|
0.360
|
|
H&N questions
|
25.0
|
7.8
|
21.4
|
6.6
|
258.5
|
0.151
|
0.267
|
|
TOI
|
68.8
|
16.8
|
58.4
|
13.4
|
278.5
|
0.050
|
0.365
|
|
FACT-G
|
89.1
|
17.8
|
78.7
|
12.9
|
310.5
|
0.005
|
0.522
|
|
FACT-H&N
|
114.1
|
22.7
|
100.1
|
17.4
|
293.0
|
0.019
|
0.436
|
Abbreviations: EWB, emotional well-being; FWB, functional well-being; PWB, physical
well-being; FACT-G, Functional Assessment of Cancer Therapy: General; FACT-H&N, Functional
Assessment of Cancer Therapy for Head and Neck Cancer; FWB, functional well-being;
SD, standard deviation; SWB, social and family well-being; TOI, Trial Outcome Index;
W = comparison test statistic for independent non-parametric Man-Whitney samples.
Note: significant p-value if less than or equal to 0.05; Rank-Biserial Correlation = effect size.
Discussion
The patients in this study presented a sociodemographic characterization very similar
to that reported in the literature. The most relevant characteristics were the predominance
in male patients, the average age around 60 years, low education, low socioeconomic
status, and the most prominent profession was rural activity.[3]
[4]
[24]
[25]
[26]
The relationship between head and neck cancer and smoking and alcoholism is well documented.
Of the interviewed patients, 83.3% used tobacco and 66.6% alcohol, which is in agreement
with other studies. In addition, patients had prolonged exposure to tobacco and alcohol
with a mean of 36.6 years ( ± 14.78) and 31.1 years ( ± 13.7), respectively. These
results were similar to those in the study by Santos et al.,[3] who observed approximate results, with an average tobacco use of 30.7 years and
alcohol of 31.1 years.[4]
[6]
[26]
[27]
The location of head and neck tumors, in relation to prevalence, varies according
to the literature approached. In the present study, oral cavity (28.6%), pharynx (26.3%),
and larynx (26.3%) tumors prevailed.[3]
[4]
[9]
[10]
[17]
[25]
[26] Squamous cell carcinoma was the predominant histological type, which is in agreement
to other studies.[4]
[8]
As for staging, 71.4% of the patients were in advanced stage (III and IV). Late diagnosis
influences therapeutic choice, requiring a more aggressive approach. In addition,
the symptoms are more intense and disabling, contributing to the deterioration of
the patient's quality of life, as shown by the FACT-H&N results. For example, the
H&N questions domain, which is related to tumor symptoms and treatment, presented
worse results the more advanced the staging.[10]
[17]
[24]
[26]
Another important factor that interferes with staging, quality of life and prognosis
of the disease is the time between symptoms and the beginning of treatment, which
in the current study showed a significant delay, with an average of 1 year and 4 months.
And although the time between the first biopsy and the start of treatment was less
significant, the average time was 6 months. The reasons for the delay between symptoms
and the start of treatment may be related to the patient's lack of knowledge about
the disease, difficulty in accessing the health system, and slow diagnosis and treatment
processes, as described in other studies.[28]
Regarding the therapy used in the interviewed patients, all received radiotherapy,
and only 12 (28.6%) also underwent surgery, which can usually cause aesthetic changes,
restriction of independence in daily activities, chewing difficulties, swallowing,
speech, disorders of mood and anxiety. Radiotherapy has some advantages over surgery;
however, some patients have undesirable effects, such as oral mucositis, xerostomia,
and loss of taste.[10]
[25]
[29]
[30]
The result of the assessment of quality of life in patients with head and neck cancer
submitted to radiotherapy through the FACT-H&N indicates similar points to another
study that used the same instrument, but evaluated patients submitted mainly to surgical
treatment. According to Nogueira et al.10, the domain with the worst result was also the H&N questions, with a proportional
average of 56.0, similar to the present study, which was 57.8. However, there was
a divergence regarding the best domain, which was the emotional well-being domain
for them and, in this study, it was the social and family well-being domain. Regarding
the overall value of FACT-H&N, in this study, it was higher 107 ( ± 22.9) against
96.6 ( ± 20.5), it cannot be stated that the predominant therapy is the reason for
the difference, but it would be interesting to further explore the differences in
quality of life between groups of patients exposed exclusively to radiation and surgery.
In another study that monitored the quality of life of head and neck cancer patients
throughout radiotherapy treatment, it showed a worsening in the global scales: TOI,
FACT-G, and FACT-H&N. However, two weeks after the end of radiotherapy, there was
an improvement in global scales values, showing that undesirable symptoms of radiotherapy
such as mucositis and xerostomia generally have a more transient impact on patients'
quality of life.[30]
Generally, the disease itself, depending on the therapy employed, especially extensive
and mutilating surgery, implies changes in body image and physical appearance, as
well as basic functions, such as speaking and swallowing. Consequently, all of these
factors often lead the patient to develop negative feelings, such as social isolation,
depression, and stigma, which can be defined as a feeling of social disapproval. These
feelings were assessed through the SSS instrument, which showed the feeling of regret
as the most significant for patients, and stigma as the least important.[12]
[20]
An important aspect of the results was the evaluation of the item appearance and shame
of the SSS, which presented little significant result. Probably, this fact is related
to the low rate of surgical intervention among the interviewed patients and, therefore,
with less impact on body image.
Feelings related to appearance, shame, stigma, regret, and social isolation explored
through the SSS correlated with the patients' quality of life, because global scales,
TOI, and FACT-G presented lower values the more important these feelings were for
the patient. So, the feelings related to the disease somehow also changed the perception
the patients' quality of life.[20]
Similar to other studies, caregivers of head and neck cancer patients are usually
women and the patient's spouse, and often have help from another family member.[16]
[17] In addition, this research also found that having someone to help with patient care
decreases the caregiver burden, with better results on the Zarit scale.
According to Rigoni et al.,[17] caregivers had a compromised quality of life, similar to that of the head and neck
cancer patient, showing that not only the patient becomes ill, but also his/her caregiver.
The burden suffered by the caregiver plays a relevant role in this aspect, as pointed
out by Honório et al.,[16] with the main altered functions in the caregiver's life being overload and routine
change.
Generally, there is little concern for the caregiver of the head and neck cancer patient
and yet this plays an important role in the patient's quality of life. Through this
work, it was noticed that patients with decreased quality of life demanded more from
the need to have a caregiver, besides the greater the dependence of the patient the
more the caregiver felt burdened.
Conclusion
The quality of life of patients with head and neck cancer is directly related to the
feelings experienced by the patient. In addition, the deterioration in the quality
of life usually demands the need for a caregiver. Therefore, it is important to evaluate
the interference of treatments on patients' quality of life and feelings, so that
the therapeutic decision and follow-up are as optimized as possible for the patient.
