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Supportive Care in Cancer
ISSN 0941-4355
Support Care Cancer
DOI 10.1007/s00520-020-05335-x
An exploratory study in breast cancer
of factors involved in the use and
communication with health professionals of
Internet information
Cristian Ochoa-Arnedo, Aida Flix-Valle,
Anna Casellas-Grau, Nuria Casanovas-
Aljaro, Olga Herrero, Enric C.Sumalla,
et al.
1 23
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ORIGINAL ARTICLE
An exploratory study in breast cancer of factors involved in the use
and communication with health professionals of Internet information
Cristian Ochoa-Arnedo
1,2,3
&Aida Flix-Valle
1,2
&Anna Casellas-Grau
1
&Nuria Casanovas-Aljaro
4
&Olga Herrero
4
&
Enric C. Sumalla
1
&María Lleras de Frutos
1,2
&Agustina Sirgo
5
&Ana Rodríguez
1
&Gloria Campos
1
&
Yolanda Valverde
1
&Noémie Travier
1,3
&Joan Carles Medina
1,2,3
Received: 23 October 2019 / Accepted: 30 January 2020
#Springer-Verlag GmbH Germany, part of Springer Nature 2020
Abstract
Objective To study the impact of the spontaneous use of Internet on breast cancer patients and on their relationship with health
professionals.
Methods A mixed methodology was used. Two questionnaires were designed through three focus groups, and then administered
to 186 patients and 59 professionals in order to assess: (1) patients’use of Internet for health-related information and (2) the
impact of this information on patients’psychological outcomes and on their relationship with professionals.
Results Patients spent more time looking for illness-related information after diagnosis, using interactive communities more than
static information websites. Patients and professionals disagreed about the use of Internet in terms of the knowledge it provides,
and its psychological impact. The main barrier reported by patients regarding the sharing of online information with their
professionals was the belief that it would damage their relationship.
Conclusions Both professionals and patients have a protectionist conception of the therapeutic relationship. This attitude tends to
dismiss the positive impact that the use of Internet and the new communication tools may have in cancer patients. New resources
should provide an “Internet Prescription”and modes of interaction to facilitate a more open digital communication.
Keywords Breast cancer .Oncology .Internet prescription .Therapeutic relationship
Introduction
People with life-threatening illnesses such as cancer common-
ly search for health information and support from other
sources than the medical staff [1]. In recent years, there has
been a significant increase in the number of people seeking
health-related information on Internet [2,3], with 70–97% of
patients doing so on a daily basis [4,5]. In addition, the use
made of online resources has also changed, evolving from an
initial need for information towards a need to stay connected
to cope with the disease [6]. This change has promoted a shift
from spontaneous use of Internet towards more targeted ap-
plications, as well as a greater involvement of professionals in
the provision of psychosocial services [7,8]. Thus, the impact
of Internet on patients and on their relationships with
healthcare providers has become an important study subject
[9,10].
To date, major discrepancies exist in this regard. Some
studies have associated Internet use with a deeper knowledge
of the disease and increased optimism [5,11]. However, on-
line information may not always be reliable, and the variabil-
ity in the quality, readability, and accuracy of contents in-
creases the possibilities of a negative impact on patients
[12]. Indeed, some studies have suggested that online infor-
mation may lead to greater confusion, worries, and distress
[13,14]. Therefore, although the impact of Internet on
*Cristian Ochoa-Arnedo
cochoa@iconcologia.net
1
Unidad de Psico-Oncología, Institut Català d’Oncologia, Av. Gran
Via d e l’Hospitalet, 199-203, 08908 L’Hospitalet de
Llobregat, Barcelona, Spain
2
Universitat de Barcelona, Barcelona, Spain
3
Psico-oncologia, Recerca en serveis sanitaris en càncer, Institut
d’Investigació Biomèdica de Bellvitge (IDIBELL), Hospitalet del
Llobregat, Barcelona, Spain
4
Universitat Ramon Llull de Barcelona, Barcelona, Spain
5
Hospital Sant Joan de Reus, Tarragona, Spain
Supportive Care in Cancer
https://doi.org/10.1007/s00520-020-05335-x
Author's personal copy
patients’knowledge of the disease and emotional distress has
been widely explored, published results are contradictory,
with other areas such as patients’illness-relatedhoperemain-
ing unexplored.
In turn, there is also a growing interest among oncology
health professionals to use Internet and social media [15].
However, only a scarce minority of them already use these
resources for professional purposes [16]. Moreover, most
health providers have doubts about the emotional and behav-
ioral impact of non-professional-guided use of Internet.
Newnham and colleagues [17] noted that 75–91% of practi-
tioners thought that Internet searches may harm patients’emo-
tional state. In effect, although many professionals have ac-
knowledged some positive effects of spontaneous Internet
use, apparently they do not consider it to be sufficient to meet
patients’needs [18]. In addition, the disagreement between
patients and practitioners regarding their perceptions of
Internet may have consequences for the therapeutic relation-
ship [10]. Despite these caveats, online health resources like
“Smart patients,”provide an opportunity for practitioners to
collaborate with patients towards recovery [19], changing
their interactions and enabling patients to play a more active
role in their health [6]. However, a lack of communication
between the two parts regarding Internet use still exists [20].
The aim of this study was to study the spontaneous use of
Internet and its impact on patients following breast cancer
diagnosis, placing special emphasis on the patient–
professional relationship. We hypothesized that health-
related Internet use would significantly increase after diagno-
sis, and that patients would spend more time in interactive
online communities than on static websites. Moreover, and
building upon previous studies, we anticipated a disagreement
between professionals’and patients’perceptions of the use of
Internet and its impact on patients’knowledge of the disease,
their hopes regarding the illness, their cancer-related worries,
and their levels of emotional distress.
Methods
Design
We have developed a mixed methods research design [21].
Therefore, this study collected both qualitative and quantitative
data in two phases within a sequential exploratory design [22].
This approach was selected because we were interested
in understanding the personal experience of patients with
the use of Internet, and how it affected their relationship
with health professionals treating them. In order to achieve
this kind of understanding, first, two focus groups were
conducted with breast cancer patients and another one with
practitioners; data collected from these focus groups was
transcribed and analyzed.
Second, the results from the qualitative data were used to
adapt previous questionnaires which were administered to a
representative sample of patients and professionals. Thus, focus
groups permitted to look for emerging themes related to the use
of Internet and its impact on patient–professional relationship,
and to integrate them into subsequent questionnaires. This sec-
ond phase allowed us to have access to a bigger sample with the
potential to confirm or reject our previous hypothesis.
As we stated before, qualitative data helped us to better
understand the personal experience of patients, focusing on
how it is narrated. In turn, quantitative data helped us to
achieve a larger sample in order to generalize results [21].
Finally, following Denzin and Lincoln [23], who clearly rec-
ommended that researchers employing mixed methods should
be explicit about their paradigms, we share a constructivist
standpoint [24,25].
Participants
In the first phase, a convenience sample of 13 women with
breast cancer were consecutively recruited in an oncological
hospital in Barcelona metropolitan area, and invited to partic-
ipate in two focus groups. Inclusion criteria were (a) diagnosis
of breast cancer at least 1 month earlier and (b) having
searched for illness-related information online. In turn, pa-
tients were excluded if they (a) reported not using Internet
(n= 4), (b) had never searched for illness-related information
online (n= 3), or (c) reported impaired cognitive performance
(n= 1). Convenience sampling was also used for the profes-
sionals’focus group in order to have an interdisciplinary and
representative sample that had daily contact with breast cancer
patients. Eight practitioners were recruited: an oncologist, a
radiotherapist, a medical radiologist, a gynecologist, three
nurses, and a psycho-oncologist.
In the second phase, 296 women meeting the same inclu-
sion criteria from focus groups were recruited from four hos-
pitals in northeastern Spain. Patients attending routine visits
with professionals were invited to enter the study if they met
the inclusion criteria. Those who accepted were interviewed
by a psycho-oncologist and signed an informed consent.
Regardless of their participation, patients with significant dis-
tress were offered psychological care. Among the women re-
cruited, 60 did not reply, 37 reported not searching illness-
related information online, 12 did not complete the question-
naire, and one declined to participate. The final sample there-
fore comprised 186 participants. Similarly, a representative
sample of 93 professionals was also recruited at the same
hospitals to participate in the online questionnaire in the ser-
vice meetings. Thirty-four finally did not reply, and the final
sample comprised 59 participants. The study was conducted
in accordance with the Declaration of Helsinki, and approval
was granted by the ethics committees of all hospitals (approv-
al number PR012/12).
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Instruments
Focus groups
The topics raised in these groups were (a) reason and time of
Internet use; (b) type of information searched; (c) its psycho-
logical impact; and (d) communication barriers between pa-
tients and professionals. As said, these themes were integrated
into the two subsequent questionnaires described below.
Patients’questionnaire
This instrument assessed two main factors: Internet use and
Internet impact. The Internet use part was based on the self-
report questionnaire by Fogel and colleagues [26], together
with relevant topics published in The European Citizen’s
Digital Health Literacy report [27]. It comprised two catego-
ries: (a) time spent looking on Internet and (b) source of online
information, including static websites and interactive re-
sources. In turn, the impact of Internet information section
included items developed to assess (c) psychological domains
(i.e., awareness/knowledge, hope, cancer-related worries, and
emotional distress) and (d) therapeutic relationship (i.e., agree-
ment on the impact of Internet use, discussion of Internet
information, and communication barriers).
Professionals’questionnaire
This tool assessed practitioners’perceptions of the use and
impact of online information on patients in the same terms
as those described for the patients’version. It was adapted
from the self-report questionnaire by Helft, Hlubocky, and
Daugherty [28]. It included questions regarding whether they
had felt intimidated while discussing and clarifying the infor-
mation patients found online.
Thematic and statistical analysis
The qualitative analysis was performed using thematic analy-
sis [29], while statistical analyses of quantitative information
were performed using IBM SPSS v.21 [30]. Intention-to-treat
(ITT) multilevel linear models (MLM) were used to analyze
questionnaire data, and Likelihood ratio test guided the
modeling process for nested models. The agreement between
answers of patients and professionals was assessed with
Cohen’s linear weighted kappa (k).
Results
From the thematic analysis of focus groups, nine categories
were extracted from patients’and eight from professionals’
groups (see Table 1). These findings were used to adapt
previous questionnaires and to design new ones, leading to
the obtention of the quantitative results below, which are report-
ed in order to emphasize the most generalizable results [21].
Sample characteristics
Of the 296 patients who met the inclusion criteria, 186 com-
pleted the questionnaires. Age was the only significant differ-
ence between patients who entered the study and those who
did not (participants were younger). Patients’characteristics
are summarized in Table 2.
The online questionnaire for practitioners was sent to 93
participants, and 59 completed it (44 women, 15 men). The
professional sample comprised oncologists (n= 13), radio-
therapists (n= 10), surgeons (n= 8), nurses (n= 8), palliative
care doctors (n= 4), and other specialties (n= 16). The aver-
age experience was 13.9 years (SD = 10; min-max 0–41).
There were no significant differences between professionals
who completed the questionnaire and those who did not.
Internet use
Patients were asked about the amount of time spent looking
for illness-related information before and after diagnosis, as
well as after active treatment completion. The MLM for the
effect of time was built parsimoniously. The covariance struc-
ture that best fitted the data was heterogeneous first-order
autoregressive for level 1, and diagonal for level 2, while the
residual plots did not reveal obvious deviations from normal-
ity and homoscedasticity. A quadratic trend was observed for
participants’scores, which improved the fit of the model, as
did setting both intercept and slope as random. Variance was
found in intercept (Var(u
0j
) = 6.46, p< 0. 001) and slope
(Var(u
1j
) = 0.54, p= 0.012), while covariation between them
was also observed (Cov(u
0j,
u
1j
)=−0.73, p<0.001).
A statistically significant effect for time was found (b=−
1.04, p= 0.001, 95% CI = −1.63–−0.44), with Internet use in-
creasing from an average of 1.51 h (SD = 4.46) per week before
diagnosis to 2.80 h (SD = 3.16) afterwards, and then slightly
decreasing to 2.61 h (SD = 6.514) after active treatment. On
the other hand, although patients reported their preference for
static medical information websites (50.5%) rather than interac-
tive resources like social networks (26.9%), the reported time
spent on these latter resources (6.83 h/week; SD = 9.56) almost
tripled the time spent on static websites (2.3 h/week; SD = 2.55).
This difference was significant as shown by a second MLM for
which the best fit was achieved with a heterogeneous first-order
autoregressive matrix again, and fixed intercept and slope (b=
3.74, p=0.001,95%CI=1.60–5.88). Finally, when patients and
professionals were asked what proportion of patients they
thought looked for online information, no agreement was ob-
served (k =−0.044): most patients estimated a rate of between
75 and 100%, and professionals a rate of between 51 and 75%.
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Impact of Internet
Psychological impact
When both groups were asked if online searches improved
patients’knowledge and awareness about cancer, the vast ma-
jority of patients reported an increase (69.6%), or no impact
(21.2%) (see Table 3). In contrast, physicians declared that
online information considerably reduced patients’awareness
or knowledge of their illness (86.5%). Thus, no significant
agreement was found (k=−0.017).
Another indicator explored referred to the worries that on-
line information could generate. Again, disagreement was
found (k= 0.037), as most patients reported either a decrease
in their illness-related worries (39.4%), or a lack of effect
(32%), whereas professionals thought that online information
increased worries (86.4%).
Regarding the impact of online information on patients’
distress, groups disagreed as well (k= 0.052), since patients
reported that it had no impact (36.6%) or made them feel
slightly more distressed (33.1%), while most professionals
thought that information definitely increases distress (67.8%).
Table 1 Categories arising from
the thematic analysis of the focus
groups of patients and health
professionals
Category
Questions that generate the category
Patients (N= 13) Health professionals (N=8)
1. Internet use
In general, do you use the Internet in relation
to your breast cancer? Why?
What percentage of patients do you estimate,
based on your professional practice, using
the Internet in relation to breast cancer?
2. Timing of use
When did you need to use the Internet? At what moments of the oncological process
according to your clinical practice do patients
consult the Internet, especially in relation to
breast cancer? Why?
3. Reference source
Where (websites, social networks, emails...)
do you consult?
What Internet sources according to your clinical
practice do patients consult in relation to breast
cancer?
4. Motivation of use
What do you think motivated your consult
on the Internet?
What do you think motivates patients to consult
on the Internet?
5. Internet usefulness (psychological impact)
Did the search on the Internet help you or
solve doubts?
Do you think the use of the Internet in cancer
patients is useful?
6. Sharing with health professionals
Have you shared the information you find
online with your healthcare team?
Is there Internet information that you do not
share with the physicians?
Do patients share the information they find
online with you according to your
clinical practice?
7. Online support system/health assistance
What things would help you and what things
would stop you from participating in an
online support group?
What advantages and disadvantages do you
think an online support group has?
Do you give any kind of online or telematics
assistance (email, telephone, videoconference,
patient forums…)? What is your opinion about
these resources and your willingness to use them?
What advantages and disadvantages do you find?
8. Reference sources most used
What reference sources in relation to cancer
have you used the most and why?
9. Online support experience
Have you participated in support groups,
mutual help or directed by psychologists
(face-to-face or online) to give or receive
help?
8. Time spent on Internet inquiries
Has the time you spent discussing or clarifying
information that patients have
found on the Internet increased?
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Finally, when patients and professionals were asked about
the effect of online information on patients’hope about their
illness, differences were also found (k=−0.055). In this case,
patients declared no change (54.3%) or greater hope (28%),
while for professionals, online information either reduced pa-
tients’hope (37.7%) or lacked effect (37.7%).
Therapeutic relationship
As shown in Table 4, the two groups were also asked how
frequently they discussed online information during their
medical appointments. Again, no agreement was found (k=
0.001), as patients declared they never (42.5%) or sometimes
(22.6%) shared the information with their physicians, while
these stated that they always (40.7%) or usually (28.8%)
discussed such information. Finally, when patients and profes-
sionals were asked whether they had difficulties discussing
online information with the other group, no agreement was
found (k=−0.001): most patients (45.2%) declared no diffi-
culties, but 47.5% of professionals reported problems in this
regard. The barriers reported by patients who have difficulties
(n= 102) primarily focused on the belief that sharing informa-
tion would damage the therapeutic relationship (83.4%).
Finally, when physicians were asked whether they felt in-
timidated by discussing Internet information with patients,
45.6% of them reported never having felt intimidated,
38.6% rarely, and 15.8% sometimes.
Discussion
Online health resources are encouraging patients to take a
more active role in their healthcare, and at the same time
Table 2 Patient characteristics (N=186)
Age (years)
Mean 46.62
SD 8.21
Min-max 21–73
Marital status N (%)
Married/partnered 144 (77.4)
Separated/divorced 21 (11.3)
Never married 14 (7.5)
Wido wed 5 (2.7)
Unknown 2 (1.1)
Education
High school or less 43 (23.1)
College 82 (44.1)
University studies 55 (29.6)
Unknown 6 (3.2)
Working status
Active 55 (29.6)
Unemployed 30 (16.1)
Sick leave 67 (36)
Pensioner 22 (11.8)
Unknown 2 (1.1)
Time since diagnosis (months)
Mean 25.22
SD 32.52
Min-max 1–183
Cancer stage
08(4.3)
I 55 (29.6)
II 89 (47.8)
III 24 (12.9)
IV 7 (3.8)
Unknown 3 (1.6)
Cancer surgery
Yes 173 (93)
No 13 (7)
Cancer treatment undergone
Chemotherapy 151 (81.2)
Radiotherapy 139 (75.1)
Hormone therapy 142 (76.8)
Current treatment
Follow-up no hormone therapy 22 (11.9)
Follow-up hormone therapy 104 (56.2)
Chemotherapy 39 (21.1)
Radiotherapy 19 (10.3)
Table 3 Psychological impact of Internet use on patients and agreement
between groups
Patients
(N=186)
Professionals
(N=59)
Cohen’s Kappa (k)
N(%) N(%)
Knowledge/awareness −0.017
Increase 128 (69.6) 5 (8.5)
No impact 39 (21.2) 3 (5.1)
Decrease 17 (9) 51 (86.5)
Worries .037
Increase 51 (28) 51 (86.4)
No impact 57 (32) 2 (3.4)
Decrease 70 (39.4) 6 (10.2)
Distress .052
Increase 58 (33.1) 40 (67.8)
No impact 64 (36.6) 9 (15.3)
Decrease 53 (30.3) 10 (17)
Hope −0.055
Increase 52 (28) 15 (25.4)
No impact 101 (54.3) 22 (37.3)
Decrease 33(17.7) 22 (37.3)
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enabling professionals to support patients’capacity to take
decisions regarding their health [10,13,31]. Consequently,
the use of Internet and its impact on patients and their rela-
tionship with practitioners have become important challenges
that health systems need to address [2,10].
With respect to present study, qualitative data helped us to
understand the phenomena and make themes emerge, while
quantitative data allows us draw conclusions that may be gen-
eralized to the population of interest more easily. As hypoth-
esized, we found that the use of Internet as a source of health
information significantly increased after the cancer diagnosis
and extended through the survival phase, in line with previous
findings [13,32], and indicating possible unmet needs.
Moreover, even though our patients reported preferring the
use of static information websites, indeed they spent more
time in interactive communities, indicating a desire to stay
connected [32].
We also expected a disagreement between professionals
and patients regarding the use of Internet and its impact on
several psychological domains. Our findings confirmed this
hypothesis, revealing that patients felt their searches increased
their knowledge and awareness of the disease without affect-
ing their hope, emotional distress, or illness concerns, much as
other studies have found [5,13,31]. In contrast, professionals
reported that the use of Internet increased patients’doubts,
confusion, and misinformation, deriving in emotional distress
and worries. These professional statements have also been
reported in similar studies [17]. One potential and highly re-
ported reason for this discrepancy is that professionals may
fear a “leveling effect,”in which the expertise of the doctor is
subverted, and promote a paternalistic model also with digital
information [6]. Indeed, recent studies conclude that it is im-
portant for practitioners to seriously consider patients’ability
to access, understand, and use illness-related online informa-
tion [14,32,33]. It is striking that health professionals seemed
to distrust the quality of available information online and dis-
claim the validity of the wealth of expert resources that are
available to their patients in sites such as Cancer.Net.
Another major obstacle in physician–patient interactions is
the lack of communication regarding the use of Internet.
Although most patients in our study (45.2%) declared no dif-
ficulties discussing online information, a majority of them
reported never (42.5%) or rarely (21%) sharing and discussing
online information with their professionals, which is consis-
tent with previous publications [20]. The reason for such ap-
parently contradictory finding may be that their difficulties are
related to patients’beliefs about the damaging effect that the
disclosure would have on the therapeutic relationship, instead
of difficulties in the communication per se, confirming the
barriers posed by the protectionist nature of the therapeutic
relationship [20,34]. However, our data suggested practi-
tioners never (45.6%) or rarely (38.6%) feel intimidated when
patients ask about information acquired online.
Finally, regarding professionals, the vast majority of our
sample reported always (40.7%) or usually (28.8%)
discussing online information with patients, although they
do not encourage its use. Similar studies reported analogous
professional attitudes in other countries [18]. All these find-
ings stress the importance of fostering the healthcare relation-
ship, especially considering how valuable is for patients re-
ceiving the support of their physicians [35].
A number of limitations need to be mentioned. First, the
study involved only breast cancer patients, which may restrict
the generalizability of the results to other samples. Second, the
influence of sociodemographic variables was not analyzed, as
it was not the focus of this research. Finally, the use of Internet
before the illness was assessed ex post facto. We acknowledge
the possible recall bias that the use of this method may entail.
Conclusions
New online health resources are updating the relationship be-
tween patients and professionals, increasing patients’partici-
pation in their health. The present results reveal the existence
of a protectionist conception of the therapeutic relationship, in
both professionals and patients, with the latter avoiding shar-
ing information to safeguard the therapeutic alliance. In turn,
professionals tend to minimize the potential benefits of
Internet, while maximizing its risks with regard to reducing
hope and increasing worries and emotional distress. Thus,
physicians avoid encouraging the use of online health re-
sources, while patients avoid sharing this information with
them. This current digital gap needs to be addressed, since it
is holding back the advantages of Internet for health—that is,
the promotion of patients’empowerment, self-responsibility
Table 4 Frequency of sharing Internet information difficulties for
patients and professionals, and agreement between groups
Patients
(N=186)
Professionals
(N=59)
Cohen’s Kappa (k)
N(%) N(%)
Sharing information 0.001
Always 10 (5.4) 24 (40.7)
Usually 16 (8.6) 17 (28.8)
Sometimes 42 (22.6) 12 (20.3)
Rarely 39 (21) 6 (10.2)
Never 79 (42.5) 0 (0)
Sharing difficulties −0.001
Always 20 (10.8) 0 (0)
Usually 11 (5.9) 2 (3.4)
Sometimes 26 (14) 28 (47.5)
Rarely 45 (24.2) 26 (44.1)
Never 84 (45.2) 3 (5.1)
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and autonomy, its support for social connection, and its ability
to provide valuable knowledge [10,13,31].
Acknowledgments The authors thank the CERCA Programme
Generalitat de Catalunya for the institutional support.
Authors’contributions All authors contributed to the study conception
and design. Material preparation and data collection were performed by
Cristian Ochoa-Arnedo, Nuria Casanovas-Aljaro, Enric C. Sumalla,
María Lleras de Frutos, Agustina Sirgo, Ana Rodríguez, Gloria
Campos, and Yolanda Valverde. Data analysis was performed by Aida
Flix-Valle, Anna Casellas-Grau, Noémie Travier, and Joan Carles
Medina. The first draft of the manuscript was written by Aida Flix-
Valle, Nuria Casanovas-Aljaro, and Olga Herrero. All authors
commented on previous versions of the manuscript. All authors read
and approved the final manuscript.
Funding information This study has been funded by the Instituto de
Salud Carlos III through the project (FIS PI15/01278) co-funded by the
European Regional Development Fund, ERDF, “a way to build Europe”
//FONDOS FEDER “una manera de hacer Europa.”Grup de recerca
consolidat: Recerca en serveis sanitaris en càncer, 2017SGR00735. It
wasalsopartiallysupportedbygrants from Asociación Española
Contra el Cáncer and the Generalitat de Catalunya (grant number
2014SGR0635). None of the sponsors was involved in the implementa-
tion of the study.
Data availability The data of this study are available from the correspond-
ing author upon reasonable request.
Compliance with ethical standards
Conflict of interest The authors declare that they have no conflict of
interest.
Ethical approval The authors assert that all participants gave their in-
formed consent prior to their inclusion in the study. All procedures con-
ducted complied with the ethical standards of the relevant institutional
committees on human experimentation, and with the Helsinki Declaration
as revised in 2008.
Informed consent Informed consent was obtained from all individual
participants included in the study.
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