Quality of Life Research (2021) 30:169–180

https://doi.org/10.1007/s11136-020-02616-0

Fulfillment of patients’ information needs during oral cancer

treatment and its association with posttherapeutic quality of life
Philipp Jehn1 · Philippe Korn1 · Nils‑Claudius Gellrich1 · Alexander‑Nicolai Zeller1 · Michael‑Tobias Neuhaus1 ·
Frank Tavassol1 · Rüdiger Zimmerer1 · Gertrud Krüskemper2 · Simon Spalthoff1

Accepted: 17 August 2020 / Published online: 29 August 2020

© Springer Nature Switzerland AG 2020

Abstract
Purpose  Surgical therapy for oral cancer can lead to severe physical and psychological disorders that negatively impact
patient quality of life (QoL). This study aimed to evaluate the relationship between fulfillment of patients’ information needs
during oral cancer treatment and patients’ perception of posttherapeutic disorders influencing QoL.
Methods  A retrospective analysis of 1359 patients who were surgically treated for oral cancer using questionnaires admin-
istered during the multicenter rehabilitation study by the German–Austrian–Swiss Cooperative Group on Tumors of the
Maxillofacial Region (DÖSAK). Patients and medical practitioners completed questionnaires following cancer treatment.
Results  Approximately 37% of patients felt inadequately informed about possible physical and psychological consequences
of surgery. In contrast, only 16% of patients felt they were given inadequate information about the operative procedure and
possible complications, and with regard to tumor diagnosis and cancer disease, only 15% of patients. Significant correlations
were found between lacking information and increased perception of posttherapeutic disorders, whereas correlations with
tumor-specific and operation-related parameters were markedly lower. The patients with superior QoL after treatment stated
more frequently, nearly independent of individual patient characteristics, that the information that they were given prior to
therapy was adequate. Information concerning possible physical and psychological consequences of an operation, however,
was frequently stated to be inadequate, independent of QoL.
Conclusion  Patients whose information needs concerning the diagnosis and treatment of oral cancer are adequately fulfilled
may benefit in terms of their therapeutic outcome, experiencing less perception of posttherapeutic physical and psychologi-
cal disorders and a superior QoL.

Keywords  Cancer treatment · Information needs · Oral cancer · Quality of life

Introduction

Treatment of oral cancer remains a challenge, and surgi-

Electronic supplementary material  The online version of this
article (https​://doi.org/10.1007/s1113​6-020-02616​-0) contains
supplementary material, which is available to authorized users.
* Philipp Jehn
jehn.philipp@mh‑hannover.de
1
Department of Oral and Maxillofacial Surgery, Hannover
Medical School, Carl‑Neuberg‑Str. 1, 30625 Hannover,
Germany
2
Department of Medical Psychology, Ruhr University
of Bochum, Universitätsstr. 150, Building MA 0/145,
44780 Bochum, Germany
cal therapy in particular can lead to severe posttherapeu-
tic disorders that negatively impact patient quality of life
(QoL) [1–3]. As operative procedures are complex, with
high demands in terms of resection and function-maintain-
ing reconstruction, extensive efforts are required to fulfill
patients’ information needs, especially concerning tumor
diagnosis and surgery. Patients often feel inadequately
informed about their disease, aspects of the operative treat-
ment, and potential impairments resulting from therapy
[4–6]. This can cause difficulties for patients’ understanding
of therapeutic steps and their effects on functional, esthetic,
and psychosocial outcomes, which greatly influence QoL
[7–9]. In this context, adequate information from healthcare

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specialists is one of the most important predictors of posi-
tive rehabilitation outcomes. Additionally, teaching coping
and problem-solving skills helps patients manage functional
impairments and alleviate distress [10, 11]. Until now, the
main reasons for insufficient information transfer have been
unclear. As teaching by a healthcare professional appears to
be the preferred modality for information transfer to patients
[5, 12], sufficient transfer of information by physicians and
adequate assimilation of it may be crucial. Studies have
recently addressed this issue by applying means of improv-
ing the transfer of information between medical practitioners
and patients [13, 14]. However, patients’ lifestyle, environ-
ment, and level of education are known to affect assimilation
and information processing; thus, healthcare professionals
must be aware of the continued risk of inadequate compre-
hension, and better provision of treatment-related informa-
tion has to be pursued [15].
At present, knowledge of the relationships between non-
fulfillment of patients’ information needs and perception
of physical and psychological disorders following surgical
treatment is scarce, and in particular, little is known about
the specific information and service needs of patients with
head and neck cancers [12, 16]. This study aimed to exam-
ine correlations between the lack of information concerning
diagnosis and treatment of oral cancer and the occurrence of
therapy-related disorders that influence QoL.
Materials and methods
A retrospective analysis of 1359 patients surgically treated
for oral cancer was performed to identify relationships
between patients’ fulfillment of information needs related to
tumor diagnosis and treatment, tumor- and operation-related
parameters, and the occurrence of posttherapeutic physical
and psychological disorders. Furthermore, patients’ deci-
sion to agree to an operation was retrospectively assessed
from their current perspective. All patients had been diag-
nosed with and underwent surgery for oral cancer at least
six months before.
Using two questionnaires, data were obtained during
the multicenter rehabilitation study of the German–Aus-
trian–Swiss Cooperative Group on Tumors of the Maxillo-
facial Region (DÖSAK), which included 43 oral and maxil-
lofacial departments in Germany, Austria, and Switzerland.
The period of data collection for both questionnaires ranged
over one year. During data acquisition, participating clinics
distributed 3894 questionnaires to German-speaking patients
during their oncological treatment. Of these, 1761 anony-
mous questionnaires were returned.
The first questionnaire was the Bochum Patient Ques-
tionnaire on Rehabilitation, developed and validated by
the Departments of Oral and Maxillofacial Surgery and
13
Quality of Life Research (2021) 30:169–180
of Medical Psychology of Ruhr University Bochum. Used
in several studies [1–3, 7–9, 17], it contains 147 questions
grouped into nine topics (personal data, pre- and postopera-
tive course of disease, clinical follow-up, physical impair-
ments caused by surgery, psychological disorders related to
diagnosis and to treatment, life circumstances, and lifestyle)
and was given to patients after therapy. The patients were
asked about their condition and symptoms before treatment,
immediately after surgery, and at least six months after the
operation. Regarding the current analyses, only responses
concerning patients’ attributes six months after therapy
were used. Patient characteristics (gender, age, family sta-
tus, vocational qualification), occurrence of physical impair-
ments (speech; eating and swallowing; mobility of mouth,
tongue, mandible, neck, shoulder, and arm; taste; smell;
appetite; breathing; general condition; personal appear-
ance; pain; swelling; xerostomia; halitosis; and gastric dis-
orders) and psychological disorders (anxiety, depression,
depressive coping with disease, future prospects, public
avoidance, worries about tumor recurrence) and QoL after
treatment were evaluated. In all, 1359 questionnaires were
included in the current analysis; the inclusion criterion was
a patient’s assessment of QoL at least six months after treat-
ment. Patients’ fulfillment of information needs during can-
cer treatment, especially concerning tumor diagnosis and
cancer disease, the operative procedure and potential com-
plications, and physical and psychological consequences of
the operation, as well as assessment of the patients’ views
on their decision to agree to operative treatment from their
current perspective, were emphasized in the questionnaire.
Additionally, a second questionnaire was completed
by relevant medical practitioners concerning patients’
tumor-disease-specific parameters [tumor location, tumor
size (T-stage), status of regional lymph node metastasis
(N-stage), existence of distant metastatic spread (M-stage)]
and aspects of the operative procedure [performance of neck
dissection, type of soft tissue reconstruction (local tissue,
pedicled flap, microvascular free flap), execution of man-
dibular bone reconstruction]. Investigation should be under-
taken to understand whether patient treatment outcomes
were influenced more by objective medical tumor- and
operation-specific aspects or by patients’ subjective percep-
tion of fulfillment of their information needs.
Responses concerning fulfillment of information needs
were ranked on a 5-point Likert scale (1 = none; 2 = poor;
3 = moderate; 4 = good; 5 = very good), where none to
moderate fulfillment was defined as being inadequately
informed and good to very good meant being adequately
informed. Similarly, patients’ retrospective assessment of
agreeing to the operation was also ranked on a 5-point
Likert scale (1 = right; 2 = rather right; 3 = undecided;
4 = rather wrong; 5 = wrong), where both positive and
negative point scores (i.e., right/rather right and wrong/
Quality of Life Research (2021) 30:169–180 171
rather wrong) were grouped separately, excluding unde-
cided responses. Tumor- and operation-specific param-
eters were ranked by pairs (i.e., yes/no). Similarly, the
occurrence of posttherapeutic physical and psychological
disorders was ranked (nonexistent/existent; right/wrong;
better/worse).
QoL was measured on a 0 (very bad) to 100 (very
good) scale based on the question “Estimate your own
actual QoL on a scale of 0 to 100.” The responses for
QoL after tumor therapy were divided into three groups:
unsatisfied (0–50), rather satisfied (51–80), or very sat-
isfied (81–100). Additionally, subgroups were built con-
cerning patient characteristics: gender (male, female),
age (0–45 years, 46–60 years, and 61–100 years), family
status (single, married, widowed, and separated), having
children (yes, no), and vocational qualification (none;
apprenticeship; university of applied sciences; profes-
sional, technical, or master school; university; and other)
for comparative analysis.
Relationships between fulfillment of patients’ informa-
tion needs, patients’ retrospective assessment of agreeing
to the operation, occurrence of posttherapeutic disorders,
tumor- and operation-related parameters, and QoL at least
six months after surgical therapy were investigated. QoL
after treatment and therapy-related disorders were cor-
related with patients’ retrospective perception of infor-
mation given. Patient characteristics (e.g., gender, age,
family status) were also considered.
The distribution of questionnaire responses was
descriptively analyzed, and percentages were calculated
for assessment of responses concerning information and
agreeing to operative treatment. Furthermore, mean val-
ues (MV) and standard deviations (SD) were calculated
regarding patient characteristic subgroups. We conducted
crosstab analyses, chi-squared tests, and analyses of vari-
ance (ANOVAs) to evaluate significant relationships (p
values) between subgroups based on patient characteris-
tics, fulfillment of information needs, and posttreatment
QoL. Additionally, Pearson’s correlation coefficients
(r-values) were calculated for physical, psychological,
and tumor- and operation-specific aspects of treatment
to detect positive and negative correlations between
variables. Coefficients (r-values) ranged from + 1.00 (a
perfect positive correlation) to − 1.00 (a perfect nega-
tive correlation); correlations were defined as strong for
r-values from + 0.50 to + 0.99 and − 0.50 to − 0.99 and
as slight for r-values from + 0.01 to + 0.49 and − 0.01 to
− 0.49. p values < 0.05 were determined to be statistically
significant and p values < 0.01 highly significant, based
on a 95% confidence interval. All statistical analyses were
conducted using the Statistical Package for the Social Sci-
ences for Windows (SPSS Inc., Chicago, IL, USA).
Results
Data assessment revealed minor differences in sample
sizes caused by missing data due to incomplete question-
naires. Regarding patient characteristics, most patients
included in the present study were men (75.9%). Further-
more, most patients belonged to the older age subgroups
of 46–60 and 61–100 years (47.7% and 44.0%, respec-
tively) and were married (66.7%) with at least one child
(82.4%). Vocational qualification for most patients was
apprenticeship (58.6%), followed by professional, techni-
cal, or master school (11.6%). By contrast, finishing uni-
versity of applied sciences or general university, a marker
for high educational level, was seldom seen (3.8% and
3.1%, respectively). QoL at least six months after finishing
treatment was “unsatisfied” in 12.7% of cases, “rather sat-
isfied” in 40.3%, and “satisfied” in 47.0% (see Table 1).>).
With regard to fulfillment of information needs con-
cerning cancer disease and therapy, the patients retrospec-
tively indicated a remarkable lack of adequate informa-
tion during oral cancer treatment, especially concerning
potential physical and psychological consequences of
an operative procedure (37.1%). Inadequate information
about tumor diagnosis and cancer disease and about the
operative procedure and possible complications was also
criticized by patients (14.6% and 16.1%, respectively).
Despite these findings, the majority of patients indicated
their decision to undergo surgical therapy as “right” or
“rather right” (94.2%) (see Table 2).
In relation to patient characteristics, the analysis showed
significant differences regarding estimation (as adequate or
inadequate) of received information about tumor diagno-
sis and cancer disease and about the operative procedure
and possible complications, across categories based on
gender (p < 0.05 and p < 0.01, respectively), family status
(p < 0.01 and p < 0.05, respectively), and vocational quali-
fication (p < 0.05). Higher MV of questionnaire responses
(i.e., adequate information) were detected in men, married
patients, and patients with completed vocational qualifi-
cation; MV for types of qualifications and age subgroups
did not markedly differ. Furthermore, responses on fulfill-
ment of information about possible physical and psycho-
logical consequences of the operative treatment showed
no significant relationships with patient characteristics.
The assessment of agreeing to the operation from today’s
perspective significantly differed in relation to the age of
patients (p < 0.05). Although MV differed only slightly,
older patients aged 46 to 100 retrospectively assessed their
decision to undergo an operation more positively than
younger patients (see Table 3).
Comparison of patients’ assessment of QoL with their
characteristics and assessment of received information
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Table 1  Patient characteristics and quality of life after treatment
Gender Age (years)
Male Female Valid data Missing data Total 0–45 46–60 61–100 Valid data Missing Total
data

n 1031 328 1359 0 1359 n 109 625 577 1311 48 1359

% 75.9 24.1 100.0 0.0 100.0 % 8.3 47.7 44.0 96.5 3.5 100.0
Family status Had children
Single Married Widowed Separated Valid data Missing data Total Yes No Valid data Missing data Total

n 133 905 160 158 1356 3 1359 n 1059 226 1285 74 1359
% 9.8 66.7 11.8 11.7 99.8 0.2 100.0 % 82.4 17.6 94.6 5.4 100.0
Vocational qualification
None Apprenticeship University of Professional/Technical/Master school University Other Valid data Missing data Total
applied sciences

n 216 745 48 148 39 75 1271 88 1359

% 17.0 58.6 3.8 11.6 3.1 5.9 93.5 6.5 100.0
Quality of life
Unsatisfied (item-score Rather satisfied (item-score 51–80) Satisfied (item-score 81–100) Valid data Missing data Total
0–50)

n 173 548 638 1359 0 1359

% 12.7 40.3 47.0 100.0 0.0 100.0
Quality of Life Research (2021) 30:169–180
 Table 2  Patients’ retrospective assessment of fulfillment of information needs and agreeing to an operative treatment from today’s perspective
Quality of Life Research (2021) 30:169–180

Information Inadequate (none to moderate) Adequate (good to very good)

None Poor Moderate Good Very good Valid data Missing data Total

Information about tumor diagnosis and cancer disease

n 21 71 104 506 644 1346 13 1359
% 1.6 5.3 7.7 37.6 47.8 99.0 1.0 100.0
Information about the operative procedure and possible complications
n 31 59 126 614 513 1343 16 1359
% 2.3 4.4 9.4 45.7 38.2 98.8 1.2 100.0
Information about possible physical and psychological consequences
n 94 114 289 591 252 1340 19 1359
% 7.0 8.5 21.6 44.1 18.8 98.6 1.4 100.0
Assessment Negative (wrong to rather wrong) Positive (rather right to right)
Wrong Rather wrong Undecided Rather right Right Valid data Missing data Total

Assessment of agreeing to the operation from today’s perspective

n 5 12 62 69 1208 1356 3 1359
% 0.3 0.9 4.6 5.1 89.1 99.8 0.2 100.0

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Table 3  Patients’ characteristics and retrospective assessment of fulfillment of information needs and agreeing to an operative treatment from today’s perspective
Information about tumor diagnosis Information about the operative pro- Information about possible physical Assessment of agreeing to
and cancer disease cedure and possible complications and psychological consequences the operation from today’s
­perspectivea
n MV SD pb n MV SD pb n MV SD pb n MV SD pc

Gender
Male 1020 4.28 0.890  < .05 1018 4.17 0.883  < .01 1020 3.62 1.065 .10 980 1.02 0.127 .08
Female 326 4.14 1.001 325 4.02 1.014 320 3.50 1.201 314 1.00 0.056
Age (years)
0–45 109 4.15 0.961 .32 108 4.19 0.855 .41 107 3.64 1.067 .72 102 1.00 0.000  < .05
46–60 620 4.31 0.861 618 4.18 0.883 619 3.59 1.101 595 1.02 0.146
61–100 571 4.21 0.964 569 4.07 0.974 566 3.59 1.122 550 1.01 0.085
Family status
Single 132 4.04 1.051  < .01 132 3.98 1.011  < .05 131 3.49 1.040 .16 122 1.02 0.128 .85
Married 898 4.30 0.877 896 4.17 0.892 893 3.63 1.106 864 1.01 0.107
Widowed 157 4.09 1.058 155 3.95 1.040 157 3.45 1.152 154 1.01 0.114
Separated 156 4.29 0.859 157 4.20 0.820 156 3.61 1.057 151 1.02 0.140
Had children
Yes 1048 4.27 0.913 .16 1046 4.16 0.915 .10 1045 3.63 1.105 .11 1017 1.01 0.121 .56
No 225 4.12 0.977 225 4.01 0.940 222 3.45 1.082 209 1.01 0.098
Vocational qualification
None 213 4.08 1.070  < .05 213 3.92 1.036  < .05 213 3.46 1.088 .06 204 1.01 0.121 .78
Apprenticeship 741 4.29 0.842 739 4.17 0.854 736 3.57 1.106 716 1.01 0.111
University of applied sciences 47 4.30 0.907 48 4.19 1.003 47 3.64 1.241 45 1.02 0.149
Professional/technical/master school 146 4.27 0.979 148 4.18 0.960 146 3.77 1.042 140 1.01 0.085
University 37 4.14 1.084 37 4.22 0.917 38 3.82 1.111 37 1.00 0.000
Other 75 4.32 0.872 74 4.22 0.911 75 3.56 1.130 71 1.02 0.167

MV mean value, SD standard deviation

a
 Undecided cases excluded
b
 Adequate information versus inadequate information
c
 Positive assessment versus negative assessment
Quality of Life Research (2021) 30:169–180
Quality of Life Research (2021) 30:169–180 175

clearly showed (independent of gender, age, vocational
qualification, and family status) that inadequate informa-
tion was associated with a sense of “unsatisfied” QoL in
a high percentage of patients. By contrast, patients who
assessed QoL as “satisfied” or “rather satisfied” stated
more frequently that the information they were given was
adequate. Interestingly, almost all patients (independent
of QoL) reported that information about possible physi-
cal and psychological consequences of the operation were
rather inadequate compared to fulfillment of other infor-
mation needs. Furthermore, analysis showed that even
an "unsatisfied" QoL after surgery did not automatically
result in a negative assessment of agreement with the
operation, and conversely, some patients retrospectively
felt their decision for surgical treatment was “wrong” or
“rather wrong” even though satisfactory posttherapeu-
tic QoL was achieved. This phenomenon was detected
throughout almost all characteristic subgroups (see Sup-
plemental Tables S1–S4).
Regarding having received adequate or inadequate infor-
mation (i.e., fulfillment of individual information needs)
as a relevant aspect for treatment outcome and postthera-
peutic QoL, assignment of the subdivided QoL subgroups
(unsatisfied, rather satisfied, or satisfied) to the patients’
perceived quality of given information (adequate or inad-
equate) showed mostly patients with “satisfied” or “rather
satisfied” QoL, independent of patient characteristics; the
majority indicated that information given prior to therapy
was almost always adequate. As an exception, informa-
tion given about possible physical and psychological con-
sequences was assessed by many patients across all QoL
subgroups as inadequate. Among the patients with "unsatis-
fied" QoL after treatment, assessment of given information
as inadequate predominated as a percentage (see Table 4).
Regarding inadequate fulfillment of information needs
and perception of posttherapeutic physical and psychological
disorders, physical impairments showed significant cor-
relations with fulfillment of patients’ information needs.
Negative correlations with r-values ranging from − 0.01
to − 0.30 were found for all evaluated physical disorders,
meaning inadequate information had detrimental effects on
these aspects. Inadequate fulfillment of information needs in
relation to physical and psychological consequences of the
operation were highly associated (p < 0.01). For inadequate
information about tumor diagnosis and cancer disease as
well as about the operative procedure and possible com-
plications, significant relationships (p < 0.05) were detected
for disorders concerning speech, eating and swallowing,
taste, appearance, appetite, pain, halitosis, and gastric com-
plaints. For impairments concerning mouth opening and
smell, highly significant associations (p < 0.01) were found
in both groups. Furthermore, inadequate information about
the operative procedure and potential complications was sig-
nificantly associated (p < 0.05) with disorders concerning
mobility of the tongue and mandible, general condition, and
breathing. Regarding patients’ retrospective assessment of
agreeing to the operation, positive correlations for all eval-
uated physical impairments were detected, with r-values
ranging from + 0.06 to + 0.18; that is, positive assessment
(i.e., right/rather right) correlated with a lower perception
of physical disorders. Here, highly significant associations
(p < 0.01) were found for all items except for the occurrence
of xerostomia (p = 0.02) (see Table 5).
Similar to the physical aspects, significant relationships
were found with detrimental psychological aspects. p val-
ues < 0.01 were detected for all psychological variables
except depressive coping (p = 0.01) and worries about tumor
recurrence (p = 0.02) in relation to lacking information
regarding tumor diagnosis and cancer disease. Regarding
the corresponding correlations, r-values for all psychologi-
cal variables ranged from + 0.24 to − 0.27. The correlations
were positive for QoL and being out in public, meaning

Table 4  Quality of life and patients’ retrospective assessment of fulfillment of information needs and agreeing to an operative treatment from
today’s perspective
Quality of life (unsatis- Quality of life (rather Quality of life (satis-
fied) satisfied) fied)
n (%) n (%) n (%) n (%) n (%) n (%)
Inadequate Adequate Inadequate Adequate Inadequate Adequate

Information about tumor diagnosis and cancer disease (n = 1346) 29 (2.1) 143 (10.6) 92 (6.8) 449 (33.4) 75 (5.6) 558 (41.5)
Information about the operative procedure and possible complications 38 (2.8) 133 (9.9) 105 (7.8) 438 (32.6) 73 (5.4) 556 (41.5)
(n = 1343)
Information about possible physical and psychological consequences 94 (7.0) 77 (5.7) 249 (18.6) 289 (21.6) 154 (11.5) 477 (35.6)
(n = 1340)
Negative Positive Negative Positive Negative Positive

Assessment of agreeing to the operation from today’s perspective 8 (0.6) 149 (11.5) 3 (0.2) 513 (39.7) 6 (0.5) 615 (47.5)
(n = 1294)

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176 Quality of Life Research (2021) 30:169–180

Table 5  Correlations of patients’ assessment of fulfillment of information needs and agreeing to an operative treatment from today’s perspective
with posttherapeutic physical, psychological, and tumor- and operation-specific aspects
Information about Information about the Information about Assessment of agree-
tumor diagnosis and operative procedure physical and psycho- ing to the operation
cancer disease and possible complica- logical consequences from today’s perspec-
tions tive
n r p n r p n r p n r p

Physical aspects
Speech for strangers 1273 − .07  < .05 1272 − .08  < .01 1267 − .26  < .01 1282  + .15  < .01
Speech for confidants 1289 − .07  < .05 1289 − .08  < .01 1283 − .25  < .01 1298  + .16  < .01
Eating and swallowing 1288 − .07  < .05 1287 − .12  < .01 1282 − .30  < .01 1297  + .15  < .01
Tongue mobility 1279 − .02 .46 1277 − .06  < .05 1274 − .22  < .01 1288  + .13  < .01
Mouth opening 1284 − .08  < .01 1283 − .10  < .01 1279 − .25  < .01 1294  + .16  < .01
Mandible mobility 1281 − .03 .31 1280 − .06  < .05 1277 − .23  < .01 1290  + .15  < .01
Neck mobility 1280 − .01 .80 1279 − .04 .18 1276 − .17  < .01 1289  + .11  < .01
Shoulder/arm mobility 1282 − .02 .49 1281 − .04 .14 1277 − .16  < .01 1291  + .08  < .01
Taste 1281 − .06  < .05 1280 − .09  < .01 1276 − .21  < .01 1290  + .14  < .01
Smell 1275 − .09  < .01 1274 − .09  < .01 1271 − .19  < .01 1284  + .15  < .01
Appearance 1282 − .07  < .05 1281 − .09  < .01 1277 − .21  < .01 1291  + .18  < .01
General condition 1284 − .03 .30 1283 − .07  < .05 1279 − .24  < .01 1293  + .14  < .01
Appetite 1284 − .07  < .05 1283 − .09  < .01 1279 − .24  < .01 1293  + .15  < .01
Breathing 1273 − .04 .20 1273 − .08  < .01 1268 − .18  < .01 1282  + .15  < .01
Pain 1282 − .07  < .01 1281 − .10  < .01 1277 − .23  < .01 1291  + .09  < .01
Swelling 1265 − .04 .22 1265 − .03 .28 1261 − .15  < .01 1275  + .12  < .01
Xerostomia 1283 − .03 .26 1282 − .04 .17 1278 − .16  < .01 1292  + .06  < .05
Halitosis 1264 − .06  < .05 1263 − .08  < .01 1260 − .21  < .01 1273  + .12  < .01
Gastric disorders 1278 − .07  < .05 1277 − .07  < .01 1274 − .23  < .01 1287  + .14  < .01
Psychological aspects
Anxiety 1327 − .09  < .01 1325 − .12  < .01 1321 − .23  < .01 1337  + .12  < .01
Depression 1319 − .10  < .01 1317 − .12  < .01 1314 − .22  < .01 1329  + .19  < .01
Depressive coping of disease 1314 − .07  < .05 1311 − .11  < .01 1308 − .21  < .01 1322  + .09  < .01
Quality of life 1346  + .10  < .01 1343  + .13  < .01 1340  + .24  < .01 1356 − .16  < .01
Future prospects 1324 − .17  < .01 1321 − .17  < .01 1319 − .27  < .01 1334  + .21  < .01
Being out in public compared to the past 1329  + .12  < .01 1327  + .14  < .01 1325  + .22  < .01 1339 − .15  < .01
Worry about tumor recurrence 1333 − .06  < .05 1331 − .09  < .01 1326 − .19  < .01 1341  + .08  < .01
Tumor- and operation-specific aspects
Tumor localization 1196 − .02 .61 1194 − .02 .46 1191 .00 .92 1206 − .02 .51
Tumor size (T-stage) 1346  + .05 .08 1343  + .03 .34 1340 − .01 .79 1356 − .01 .65
Regional lymph node metastasis (N-stage) 1324  + .01 .71 1321 − .01 .79 1318 − .03 .23 1334  + .05 .05
Distant metastatic spread (M-stage) 1069 − .02 .44 1065 − .05 .13 1061 − .05 .14 1076 − .03 .38
Selective neck dissection 1346  + .01 .65 1343  + .02 .58 1340 − .02 .40 1356 − .01 .75
Conservative neck dissection 1346  + .01 .82 1343  + .02 .42 1340 .00 .95 1356  + .03 .32
Radical neck dissection 1346  + .07  < .05 1343  + .03 .26 1340 − .05 .10 1356 − .02 .55
Defect reconstruction by local tissue 1235 − .05 .08 1231 − .06  < .05 1228 − .05 .11 1243  + .01 .82
Defect reconstruction by pedicled flap 1160  + .05 .09 1157  + .02 .45 1156  + .04 .21 1170 − .02 .50
Defect reconstruction by microvascular flap 1159  + .07  < .05 1156  + .09  < .01 1155  + .02 .60 1169  + .02 .45
Bone reconstruction of the mandible 1162  + .06 .06 1158  + .09  < .01 1157 − .01 .73 1171  + .04 .17

that adequate information had beneficial effects; however, were detected for all psychological aspects; r-values ranged
negative correlations were found for all other psychologi- from + 0.21 to − 0.16. A positive assessment (i.e., right/
cal aspects. Regarding retrospective assessment of agreeing rather right) was positively correlated with superior QoL
to the operation, highly significant correlations (p < 0.01) and unimpaired being out in public. A negative assessment

13
Quality of Life Research (2021) 30:169–180 177
(i.e., rather wrong, wrong) was negatively correlated with
all other psychological variables (see Table 5).
Interestingly, among potential correlations concern-
ing tumor- and operation-related aspects, a remarkably
lower and more heterogeneous pattern of correlations was
detected, with r-values ranging from + 0.09 to − 0.06. Here,
significant correlations were found only in groups concern-
ing inadequate information about tumor diagnosis and can-
cer disease and about the operative procedure and possible
complications for those items from the operative treatment.
Significant relationships (p < 0.05) were detected for perfor-
mance of radical neck dissection and reconstruction with a
microvascular free flap in the first group and for reconstruc-
tions with local soft tissue or a microvascular free flap and
for bone reconstruction of the mandible in the second group.
Microvascular free flap and mandibular bone reconstruction
were highly associated (p < 0.01). With regard to patients’
retrospective assessment of agreeing to the operation, corre-
lations regarding tumor- and operation-specific aspects were
very low; r-values ranged from + 0.05 to − 0.03, with no sig-
nificant relationships between these variables (see Table 5).
Discussion/conclusion
This study indicates that inadequate fulfillment of patients’
individual information needs can be found in a substantial
number of patients receiving surgical treatment for oral
cancer. With reference to posttherapeutic QoL, comparison
of the assessment of QoL with patient characteristics, and
individuals’ perception of received information revealed that
inadequate information was associated with unsatisfactory
QoL in many cases, nearly independent of patient charac-
teristics. Interestingly and exceptionally, information given
about possible physical and psychological consequences
from the operation was assessed over all QoL subgroups as
rather inadequate by a considerable percentage of patients.
Thus, information about these consequences appears to be
a main issue for surgical cancer therapy. Missing informa-
tion was found to be significantly associated with increased
perception of therapy-related disorders. An increased per-
ception of physical impairments known to be related to
oral cancer treatment (i.e., problems with speech, eating,
swallowing, taste, smell, appearance, appetite, pain, hali-
tosis, and gastric disorders) [1–3, 8, 9] was found in a high
number of patients with unmet information needs. Anxiety,
depression, depressive coping with disease, worse future
prospects, reduction in being out in public, worries about
tumor recurrence, and decreased QoL were evaluated as the
most important psychological aspects, paralleling the cur-
rent literature [2, 3, 7]. By contrast, no remarkable correla-
tions were detected with reference to specific tumor- and
operation-related parameters, implying that these aspects
are minor factors in patients’ posttherapeutic reflection. It
may be that physicians pretherapeutically focus more on the
tumor and its surgical treatment (providing extensive infor-
mation on these elements to the patient) than on potential
treatment consequences.
Nevertheless, the analysis revealed that despite these find-
ings, the majority of patients stated some level of QoL satis-
faction after therapy and, retrospectively, positively assessed
their decision to agree to the operation. In this context,
patients’ perception of being adequately informed positively
correlated with patients’ retrospective assessment of agree-
ing to the operation. Some outliers were detected, but a pos-
sible explanation for this may be that each therapy-related
disorder influenced QoL differently and that the estimation
may have strongly varied between patients. In this regard,
however, received information differed only moderately with
regard to patient characteristics, where being male, married,
and completed vocational qualification were associated with
a superior assessment of given information. Furthermore,
older patients seemed to arrange themselves more likely with
the posttherapeutic conditions (positive or negative), com-
monly resulting in a more positive assessment of therapy.
Interestingly, fulfillment of information needs about possible
physical and psychological consequences of the operation
showed no relationship with patient characteristics, possibly
because the occurrence of such consequences with a lasting
effect on patients’ daily lives may have led to their negative
retrospective assessment of information given.
As previously noted, literature examining correlations
between inadequate fulfillment of patients’ information
needs and occurrence of treatment-related disorders is
lacking. Given that consultation with and learning from a
healthcare professional is patients’ most preferred modal-
ity to obtain adequate information [6, 15], improvement of
information transfer focused on patients’ individual concerns
is recommended, and its failure seems to be a serious prob-
lem in clinical practice. Obtaining sufficient information is
not restricted to one point or person before treatment and
will be linked with the amount of posttreatment support that
patients receive from doctors, specialists, and other health-
care providers. Enhancement of communication, familiarity,
and relationships among physicians, patients, and caregiv-
ers, comprehensive information transfer, and knowledge
about clinical-demographic influences on QoL outcomes are
important topics for research. Rogers et al.’s “‘What will I
be like’ after my diagnosis of head and neck cancer” pro-
vides information on potential physical and psychological
consequences of cancer treatment and puts QoL informa-
tion in a format that patients and oncology teams can easily
interpret as a guide to likely outcomes [18]. In regard to
this, QoL questionnaire analysis detected various adverse
associations with physical functioning domains and provided
important reference data and understanding about predictive
13

178
clinical-demographic factors for QoL outcomes and infor-
mation relevant to patients at the outset of their cancer jour-
ney [18]. Structured question-prompt lists operate as simple,
inexpensive communication tools in medical consultations
and as an effective intervention to ensure that patients’ indi-
vidual information needs are met, as shown by Miller and
Rogers [13]. Furthermore, a patient concerns inventory used
to identify individual concerns that patients want to discuss
during healthcare consultation has been developed [14]. For
both tools, patient-initiated and patient-focused consultation
throughout follow-up has been indicated as part of purpose-
ful provision of multiprofessional supportive care.
As digital transfer of information becomes increasingly
important, the internet has become an increasingly used
modality for health information delivery [12]. Up to 83% of
cancer survivors make use of the internet to obtain health-
related information and support; the most popular online
topics for them concern how to live a healthy lifestyle after
treatment, followed by strategies to improve eating and
speaking problems, information about side effects after
therapy, and management of psychological impairments
[11]. Furthermore, recent research has highlighted the desire
for mobile app interventions to help patients acquire infor-
mation [19]. However, current mobile interventions only
meet treatment- or symptom-related information needs and
do not cover psychosocial concerns or long-term effects of
treatment [20]. Development and evaluation of appropriate
resources, such as the internet, mobile technologies, and
printed pamphlets, are therefore needed to better inform
patients about supportive interventions matched to indi-
vidual stages and courses of disease [21].
Patients’ lifestyle patterns following treatment for head
and neck cancer are highly complex, and challenges remain
regarding how best to address patients’ needs holistically
[22]. In particular, ongoing access to information about life-
style factors possibly affecting the risk of recurrence, teach-
ing about signs and symptoms of recurrence, and informa-
tion about recent developments in cancer diagnostics and
treatment must be offered by healthcare providers during
routine care. In this context, the use of both local and digital-
based sources of information may improve patients’ sup-
port and their coping with the disease [23]. Additionally,
supportive rehabilitation interventions must be constantly
modulated during follow-up. McEwen et al. recently pos-
tulated the need for a rehabilitation planning consultation
session to assess patients’ individual concerns after head
and neck tumor therapy [24, 25]. Previous efforts in this
direction appear to promise effective, feasible rehabilitation
interventions and may provide further knowledge about ther-
apy-related disorders and concerns and their relationship to
patients’ unmet information needs, which would be help-
ful to improve cancer patients’ long-term function and QoL
[23, 24]. In this context, our results may help to illustrate
13
Quality of Life Research (2021) 30:169–180
the requirement of fulfillment of patients’ information needs
during treatment of oral cancer and its impacts on therapeu-
tic outcomes. Despite all efforts, it will be inevitable that
some patients still choose to have less information and then
feel in hindsight that not enough information was given or
individual needs were not fulfilled.
There are several limitations of the present study. First,
patient questionnaire data did not cover the period prior to
cancer diagnosis, the time point of diagnosis, or the period
of passing through surgical therapy. Patients’ psyches, self-
perceptions, and social environments change immediately
and irrevocably at the time of diagnosis. Therefore, the ques-
tion remains whether the evaluated physical and psycho-
logical impairments only occurred after treatment or were
preexisting. Increased occurrence of psychological impair-
ments in particular might then be interpreted not necessarily
as resulting only from lacking information but also from
preexisting psychological disorders (e.g., depressed or anx-
ious patients), which might lead to a disproportional demand
for fulfillment of information needs and a higher percep-
tion of therapy-related impairments. In clinical practice,
those patients might need more information and/or might
retrospectively report that they received insufficient infor-
mation. Furthermore, the occurrence of potential complica-
tions during surgical therapy (e.g., disturbed wound healing,
scar contractures, or nerve injuries) and those who achieved
poorer therapeutic outcomes (e.g., due to advanced tumor
stage or limitations in reconstruction) were not evaluated
separately, all of which would likely result in more nega-
tive responses. Next, the present study assessed patients’
fulfillment of information needs prior to therapy, whereas
assessment of patients’ information gain during therapy at
different time points has to be taken into account and might
also be influenced by patients’ course of disease and post-
treatment support (e.g., consulting specialists, family work-
ers) as well as by the individual patient characteristics. In
this regard, the retrospective design of the current study is
limited because of the absence of additional data on these
matters. Additionally, in this multicenter study, informa-
tion given in the different units might be heterogeneous and
not standardized between participating healthcare centers,
meaning that minute comparison of patients’ individual
information need fulfillment is unfeasible. Furthermore, the
time to treat factor might also vary between participating
units, and getting information, processing it, and preparing
for surgery does take some time in general. Hence, taking
enough time for decision to treat (i.e., not “rushing” to have
surgery) is important and may additionally influence thera-
peutic outcome.
Consequently, further investigation of the influence of
unmet information needs concerning cancer diagnosis and
treatment, patients’ individual pre- and posttherapeutic
physical and psychological constitution, and their impacts
Quality of Life Research (2021) 30:169–180 179
on posttreatment outcomes are all needed. Detailed factor
analysis of potential associations between the absence of
certain elements of information and the perception of post-
therapeutic disorders and potential disproportionate percep-
tion of inadequate information in terms of therapy-related
realization of an impairment must be performed to eliminate
the most decisive factors. Furthermore, the development of
purposeful strategies for improving the transfer of informa-
tion and the assessment of patients’ individual care needs
should be expedited to positively influence patients’ post-
treatment QoL.
Author contributions  PJ analyzed the data and drafted the article. PK,
MTN, and NCG reviewed the literature review and critically revised the
manuscript. ANZ, FT, and RZ analyzed the data and created the tables.
GK designed the study and acquired the data. SS conceived the study
and critically revised the article for important intellectual content. All
authors have reviewed the manuscript and agreed to its submission.
Funding  No specific funding was obtained for this work.
Compliance with ethical standards  Cancer, 123(11), 1949–1957.
Conflicts of interest  The authors have no conflicts of interest to de-
clare.
Ethical approval  The study was conducted in accordance with the Dec-
laration of Helsinki and approved by the institutional review board
of the Ruhr University of Bochum. No specific approval number was
assigned to this study.
Consent to participate  All participants in the DÖSAK study provided
written informed consent to this work and agreed with the scientific
use of their data.
Consent to publish  Patients signed informed consent regarding pub-
lishing their data.
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