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An exploratory study in breast cancer of factors involved in the use and communication with health professionals of Internet information

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Objective To study the impact of the spontaneous use of Internet on breast cancer patients and on their relationship with health professionals.MethodsA 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.ResultsPatients 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.
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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) patientsuse of Internet for health-related information and (2) the
impact of this information on patientspsychological 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 Prescriptionand 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 7097% 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 dOncologia, Av. Gran
Via d e lHospitalet, 199-203, 08908 LHospitalet de
Llobregat, Barcelona, Spain
2
Universitat de Barcelona, Barcelona, Spain
3
Psico-oncologia, Recerca en serveis sanitaris en càncer, Institut
dInvestigació 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
patientsknowledge of the disease and emotional distress has
been widely explored, published results are contradictory,
with other areas such as patientsillness-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 7591% of practi-
tioners thought that Internet searches may harm patientsemo-
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
patientsneeds [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 professionalsand patientsperceptions of the use of
Internet and its impact on patientsknowledge 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 patientprofessional 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-
sionalsfocus 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.
Patientsquestionnaire
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 Citizens
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).
Professionalsquestionnaire
This tool assessed practitionersperceptions of the use and
impact of online information on patients in the same terms
as those described for the patientsversion. 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
Cohens linear weighted kappa (k).
Results
From the thematic analysis of focus groups, nine categories
were extracted from patientsand 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). Patientscharacteristics
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 041).
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
participantsscores, 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 = 1.630.44), 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=1.605.88). 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
patientsknowledge 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 patientsawareness
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 patientshope 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-
tientshope (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 2173
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 1183
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)
Cohens 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 patientscapacity 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 patientsdoubts,
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 patientsability
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 physicianpatient 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 patientsbeliefs 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 patientspartici-
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 healththat is,
the promotion of patientsempowerment, self-responsibility
Table 4 Frequency of sharing Internet information difficulties for
patients and professionals, and agreement between groups
Patients
(N=186)
Professionals
(N=59)
Cohens 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.
Authorscontributions 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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... The acquisition of online health information can pose a challenge to the patient-doctor relationship, principally due to a lack of consensus between the two parties about its utilisation [57,58]. It has been documented in the literature that most healthcare professionals believe that information gathered online may have adverse effects on patients [59]. ...
... In the context of BC, while physicians may engage in discussions pertaining to online-sourced information with their patients, they tend to downplay its potential benefits and overemphasise its risks. Healthcare providers have expressed concerns that such information could lead to misinformation, confusion, and uncertainty, ultimately resulting in increased worries and emotional distress [58]. Meanwhile, BC patients are often hesitant to share or discuss online information with their doctors, fearing that it might negatively affect their therapeutic alliance [58]. ...
... Healthcare providers have expressed concerns that such information could lead to misinformation, confusion, and uncertainty, ultimately resulting in increased worries and emotional distress [58]. Meanwhile, BC patients are often hesitant to share or discuss online information with their doctors, fearing that it might negatively affect their therapeutic alliance [58]. In addition to their concerns related to patient misinformation online, physicians have highlighted additional challenges that prevent them from engaging with patients through social media platforms and sharing their expertise [61]. ...
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Background: Female breast cancer (BC) is the most diagnosed cancer and the leading cause of malignancy-related death worldwide. With the widespread utilisation of the Internet, social media has presented an invaluable yet underemployed tool in the context of BC medical information dissemination, support hub formation, and patient empowerment. Summary: In this narrative review, we explore the untapped potential of social media in this context, caveats, and future directions that may aid in formulating a new era of patient led, in addition to patient-centred care. Key messages: Social media represents a powerful tool with significant potential to enable the seeking and sharing of BC-related information, and enhance patient education, communication, engagement, and empowerment. However, its use is associated with a number of limitations, including confidentiality and addiction issues, excessive and inaccurate information, and a possibility of jeopardising the patient-doctor relationship. Further research is needed to shed more light on this topic.
... Paralelamente, si atendemos al uso que hacen de internet los pacientes oncológicos, los estudios indican que un 70-97% de ellos buscan información médica online (23,24 ). Este uso de internet se incrementa significativamente después del diagnóstico y se mantiene en la fase de supervivencia extendida, lo que indicaría necesidades de información no cubiertas (25) . Y, a pesar de que los pacientes prefieren consultar webs estáticas de información médica, pasan mucho más tiempo en comunidades dinámicas, como redes sociales, lo que indicaría la necesidad de estar socialmente conectados (25,26) . ...
... Este uso de internet se incrementa significativamente después del diagnóstico y se mantiene en la fase de supervivencia extendida, lo que indicaría necesidades de información no cubiertas (25) . Y, a pesar de que los pacientes prefieren consultar webs estáticas de información médica, pasan mucho más tiempo en comunidades dinámicas, como redes sociales, lo que indicaría la necesidad de estar socialmente conectados (25,26) . Finalmente, cabe señalar que los pacientes no comparten la información que consultan por internet con su equipo sanitario por miedo a dañar la relación terapéutica de confianza. ...
... Finalmente, cabe señalar que los pacientes no comparten la información que consultan por internet con su equipo sanitario por miedo a dañar la relación terapéutica de confianza. Al mismo tiempo, los sanitarios minimizan el potencial de internet para crear conocimiento de calidad y maximizan el impacto psicológico negativo que tiene esa información sobre los pacientes (25,27) . ...
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Introducción: A pesar de que los tratamientos psico-oncológicos han demostrado su efectividad en disminuir el malestar emocional y mejorar la calidad de vida de las personas con cáncer, aún existen numerosas barreras que limitan su acceso. La transformación a online de esta atención se plantea como una solución para aumentar la cobertura del servicio y mejorar su coste-utilidad. Objetivo: Crear un ecosistema digital de salud para reducir el impacto del cáncer, aumentando el bienestar y la calidad de vida del ciudadano con cáncer. Método: Programa dirigido a pacientes diagnosticadas de cáncer de mama en fase de supervivencia aguda. Es un programa de atención escalonada dividido en 4 niveles de intervención jerarquizados por complejidad: Nivel 1, cribado y monitorización psicosocial; Nivel 2, Campus: psicoeducación y educación sanitaria; Nivel 3, soporte psicosocial comunitario; y Nivel 4, tratamiento psicoterapéutico grupal. Resultados: En 2019, 259 mujeres fueron incluidas en el programa (39,91% de los nuevos casos de cáncer de mama en los centros participantes). Solo el 3,47% (n = 9) requirió atención clínica especializada (Nivel 4). Conclusión: El programa Iconnecta’t adopta un modelo integrado de atención psicosocial en cáncer que se adecúa a las necesidades específicas de los supervivientes. Da solución a algunas de las barreras de la atención sanitaria tradicional, democratizando el acceso a los servicios mediante el uso de tecnologías de uso común en la mayoría de ciudadanos. En un futuro próximo se prevé la implementación progresiva a otras neoplasias, junto con un ensayo clínico controlado y aleatorizado que evaluará su eficacia.
... ICT can also foster shared decision-making, which can empower patients to make the best decisions for themselves [20]. Opinions among providers and patients may differ regarding the use of ICT, one study found patients reported empowerment from increased access to online resources, while physicians reported concerns about potential patient confusion and distress [23]. Patients report increased trust in medical professionals when they encourage seeking information using online resources [24]. ...
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Cancer care (CC) is incredibly complex and requires the coordination of multiple disciplines for optimal outcomes. Historically, this has been accomplished with multidisciplinary tumor boards (MDTBs), but the benefits, while perhaps intuitive, have not always been demonstrated with sufficient research robustness and validity. We hypothesize that this difficulty in demonstrating the benefit of MDTBs may be related to a delay in decision-making and operationalizing those decisions. The history and value of MDTBs are presented as well as their weaknesses and limited demonstration of improved outcomes. A major weakness highlighted by the challenges of MDTBs is the concept of total package time (TPT) (rather, the inability to keep it as short as possible); any significant delays in CC for any discipline may have a deleterious impact on any given patient's care outcome. Drawing on our own experience with utilizing information and communication technology (ICT) during an effort to apply accountability theory to improve specifically radiation therapy package time (RTPT), we argue that similar principles will be applicable in the improvement of not only the TPT which relies on multiple disciplines, but other factors of CC as well, such as coordination. Experience with improvement in RTPT is discussed and the underlying theory is demonstrated as a sound methodology to apply beyond RTPT to TPT involving coordination of multiple disciplines and stands to lead to the full realization of the benefits of the multidisciplinary approach. The complexity of cancer means that real solutions to optimal outcomes are also, by nature, complex, but here simple accountability theory is demonstrated that may unlock the next phase of multidisciplinary coordination. In this work, we argue that the benefits of the MDTB format can be fully realized with the addition of ICT, a technological breakthrough in the past two decades, while not forgetting about continued human factors.
... Before creating the content, an exploratory study in BC, of the factors involved in the use and sharing of internet information with health professionals, was developed [26]. In this study, two focus groups were held with 13 BC patients, and a questionnaire was administered to 186 BC patients afterwards. ...
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Health education and psychosocial interventions prevent emotional distress, and the latter has been shown to have an impact on survival. In turn, digital health education interventions may help promote equity by reaching a higher number of cancer patients, both because they avoid journeys to the hospital, by and having a better efficiency. A total of 234 women recently diagnosed with breast cancer in a comprehensive cancer center used the digital ecosystem ICOnnecta’t from March 2019 to March 2021. ICOnnecta’t consists of four care levels, provided to patients according to their level of distress. The second level of this intervention consists of an educational campus, which was analyzed to track users’ interests and their information-seeking behavior. Overall, 99 out of 234 women (42.3%) used the educational campus. There were no significant differences in sociodemographic and clinical variables between the campus users and non-users. Among users, the median number of resources utilized per user was four (interquartile range: 2–9). Emotional and medical resources were the contents most frequently viewed and the audiovisual format the most consulted (p < 0.01). Resources were used mainly within the first three months from enrolment. Users who were guided to visit the virtual campus were more active than spontaneous users. Offering an early holistic health educational platform inside a digital cancer ecosystem, with health professionals involved, can reach more patients, promoting equity in the access of cancer information and prevention, from the very beginning of the disease.
... Two studies also reported that providers think their communication worsened with patients when there was electronic automatic release of pathology and radiology reports to the patients [10,34]. In one other study, providers discouraged cancer patients from the use of online health resources due to increased doubts, confusion, and misinformation which caused emotional distress, while patients felt their use of the internet increased their knowledge and awareness [21]. Furthermore, another quantitative study ((N = 267) patients and (N = 27) HCPs), explored the effect of cancer-related internet information on communication. ...
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Objective To ensure the well-being of their patients, health care providers (HCPs) are putting more effort into the quality of the communication they provide in oncology clinics. With the emergence of Health Information Technology (HIT), the dynamics between doctors and patients in oncology settings have changed. The purpose of this literature review is to explore and demonstrate how various health information technologies impact doctor-patient communication in oncology settings. Method A systematic literature review was conducted in 4 databases (PubMed, Cochrane, Web of Science, IEEE Xplore) to select publications that are in English, published between January 2009 and September 2020. This review reports outcomes related to the impacts of using health information technologies on doctor-patient communication according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Reviews and Meta-Analysis guidelines (PRISMA). Results We identified 31 studies which satisfied the selection and eligibility criteria. The review revealed a diverse range of HIT used to support communication between cancer patients and their HCPs in oncology settings. Outcomes related to communication efficiency were examined to demonstrate how technology can improve access to care in clinical settings and online. When technology is used effectively to support patient knowledge and shared understanding, this increases the patient’s satisfaction and ability to manage emotions, make decisions, and progress in their treatment, in addition to increasing social support and building a stronger therapeutic alliance based on shared knowledge and transparency between clinicians and patients. Conclusion Technology-based solutions can help strengthen the relationship and communication between patients and their doctors. They can empower the patient’s well-being, help doctors make better decisions and enhance the therapeutic alliance between them. Thus, using technology to enhance communication in healthcare settings remains beneficial if its use is structured and target oriented. Future studies should focus on comparing in-depth the difference between outpatient and inpatient settings in terms of the efforts required and the extent of the impacts from both clinicians’ and cancer patients’ perspectives.
... Although there is gradually a greater awareness of the role that certain websites and applications play in personal well-being, and governments exercise greater control over what type of information is offered from the Internet [72], there is still much progress to be made in this area. It is one area in which digital literacy of the population is most needed [73,74], with the due control and supervision of competent entities. ...
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The university is currently involved in complex processes of open innovation through permanent dialogue with institutions and companies in the economic, social, and political fields. Professors, researchers, students, and other members of the institution take part in these processes. This is a phenomenon that has emerged in today’s network society due to digitalization and globalization. It is therefore essential, in this context of open innovation, to know the behaviors, habits, consumption, or lifestyles of university staff and students to achieve, in the best and most effective way, integration of higher education in this new reality. How we interact and communicate with the surrounding people has transformed with wider access to the Internet and the development of information and communication technologies (ICTs), especially through smartphones and the use of apps and social networks (WhatsApp, Twitter, Facebook, etc.). This digital revolution has reconfigured our interests, dispositions, and social participation. From the university field, knowing the interests of students who access the Internet is of vital importance to guide teaching methodologies, adapt content, facilitate communication processes, develop digital literacy practices, etc. The present research, focused on the Latin American sociocultural space, has a double objective: (GO1) to know which are the issues of most interest and consumption for university students; (GO2) to determine which issues they reject while they surf on the Internet. A quantitative research has been developed (n = 2482) based on the validated questionnaire COBADI®. The topics of greatest interest to the Latin American university students were, in this order: “use of social networks”, “news”, “music”, “education”, “work”, and “videos”. The fact that they put education in fourth place, as students, shows that it is not a high priority in their use of the network. On the opposite side, those that show more rejection are “celebrity journalism”, “online games”, and “pornography”. Among their topics of rejection is also “politics”, which is not prioritized by university students. These topics have been presented in different proportions according to the country analyzed, depending on their specific social and political circumstances, and have experienced a different evolution from 2012 to 2019—the time covered by the study.
Article
Objective: Previous studies have suggested the benefit of routine screening for biopsychosocial symptoms among patients with cancer. In recognition of the lack of data from low- and middle-income countries, this study sought to test and determine the effect of a mHealth program to screen biopsychological symptoms among patients with advanced breast or gynecological cancer. Methods: This was a quasi-experimental pre-post study conducted in a public hospital located in central western Brazil. Patients diagnosed with advanced breast of gynecological cancer who were about to initiate chemotherapy treatment at this institution and had access to Internet by smartphone, computer or tablet were invited to participate. Patients received training on using the app Comfort, a program developed to rate their physical and emotional symptoms during the 6-month of the proposed study. Patients were also asked to complete the EuroQOL 5D (EQ-5D-3L) every month. Mann-Whitney U test was used to determine differences among groups of patients (engaged and non-engaged). RM-ANOVA was used to determine the effect of time on mean visual analog scale (VAS) score. Results: A total of 125 patients were recruited (median age = 46.6 years old, 41.6% married). Mostly, patients possessed lower levels of education and had relatively low monthly incomes. Notably, 67.2% of patients engaged with the Comfort program, and few patients (4%) withdrew due to lack of engagement with the program or issues with internet connection. In general, patients who engaged with the program reported improvement in physical and emotional symptoms (p < 0.01), as well as in their overall quality of life (VAS; p = 0.009), compared with patients who did not engage with the program. Conclusions: This is the first mHealth program developed in Brazil for patients in a low resource setting. Our findings suggest that Comfort could be an effective resource to assist patients and health care providers track symptoms and improve patients' quality of life.
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Background eHealth interventions may represent the way forward in following up patients with colorectal cancer (CRC) after hospital discharge to support them in coping with the illness, strengthen their self-management, and increase their quality of life. By involving end users of eHealth in cocreation processes when designing eHealth solutions, an acceptable and relevant product can be secured. Stakeholders’ perspectives could aid in closing the gap between research-developed products and the implementation of eHealth services in real-life scenarios. Objective This study aims to explore the views of patients with CRC, their informal caregivers, and health care professionals (HCPs) on information technology and the design of eHealth support in CRC care. Methods A qualitative, explorative design was used to conduct 31 semistructured individual interviews with 41% (13/31) patients with CRC, 29% (9/31) informal caregivers, and 29% (9/31) HCPs recruited from the gastrosurgical ward of a university hospital in southwestern Norway. A semistructured interview guide was used for data collection, and the data were analyzed by systematic text condensation. Results Participants described the diverse experiences of patients with CRC seeking web-based information. Age and digital competence were highlighted as influencers of the use of information technology. Patients rarely received advice from HCPs about relevant and secure websites containing information on CRC diagnosis and treatment. Features of desired eHealth interventions in following up patients with CRC were patient education, health monitoring, and communication with HCPs. Conclusions Several elements affect the activities of patients with CRC seeking health information. Age, inexperience with computer technology, and lack of access to web-based health information may reduce the ability of patients with CRC to engage in decision-making processes regarding illness and treatment. An eHealth service for patients with CRC should comprise features for information, education, and support for self-management and should aim to be individually adapted to the patient’s age and digital competence. Involving end users of eHealth services is necessary to ensure high-quality tailored services that are perceived as user friendly and relevant to the end users.
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Introduction Psychosocial interventions for patients with breast cancer (BC) have demonstrated their effectiveness at reducing emotional distress and improving quality of life. The current digitisation of screening, monitoring and psychosocial treatment presents the opportunity for a revolution that could improve the quality of care and reduce its economic burden. The objectives of this study are, first, to assess the effectiveness of an e-health platform with integrated and stepped psychosocial services compared with usual psychosocial care, and second, to examine its cost–utility. Methods and analysis This study is a multicentre randomised controlled trial with two parallel groups: E-health intervention with integrated and stepped psychosocial services vs usual psychosocial care. An estimated sample of 338 patients with BC in the acute survival phase will be recruited from three university hospitals in Catalonia (Spain) and will be randomly assigned to one of two groups. All participants will be evaluated at the beginning of the study (T1: recruitment), 3 months from T1 (T2), 6 months from T1 (T3) and 12 months from T1 (T4). Primary outcome measures will include number of clinical cases detected, waiting time from detection to psychosocial intervention and proportion of cases successfully treated in the different steps of the intervention, as well as outcomes related to emotional distress, quality of life, post-traumatic stress and growth, treatment adherence and therapeutic alliance. Secondary outcomes will include the acceptability of the platform, patients’ satisfaction and usability. For the cost–utility analysis, we will assess quality-adjusted life years and costs related to healthcare utilisation, medication use and adherence, work absenteeism and infrastructure-related and transport-related costs. Ethics and dissemination This study was approved by the Ethics committee of the Institut Català d’Oncologia network in Hospitalet, Spain. Findings will be disseminated through peer-reviewed journals, reports to the funding body, conferences among the scientific community, workshops with patients and media press releases. Trial registration number Online Psychosocial Cancer Screening, Monitoring and Stepped Treatment in Cancer Survivors (ICOnnectat-B),NCT04372459.
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Objectives Online resources are changing patient‐professional relationship and care delivery by empowering patients to engage in decisions in order to cope with their illness and modify behaviors. This review analyses the psychological factors associated with spontaneous and health professional–guided internet use in cancer patients. Methods Searches were performed in the PubMed (MEDLINE), PsycINFO, and Scopus databases. Studies were included if they involved cancer patients or focused on the relationship between cancer patients and health professionals, describing either patients' spontaneous use of interne or a guided‐structured eHealth psychosocial intervention. Results Seventy‐seven scientific papers were finally included. Results described emotional and behavioral outcomes in cancer patients who accessed online information. Internet has long been used spontaneously not only as a source of medical information or symptom management but also for decision making or emotional and social support. Health professionals can guide internet use, providing specific web‐based recommendations and developing intervention programs to better meet patients' needs, such as educational or information programs. Conclusion Online access is a complementary form of care that physicians can provide. Patients benefit from online resources, especially when both they and their health professionals increase their engagement with online interventions such as integrated systems or online communities.
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People living with and beyond cancer suffer with a wide range of physical and psychological symptoms. To manage the challenges associated with cancer, patients use a variety of self-management resources, including the Internet. People living with and beyond cancer use the Internet to make decisions regarding their self-care, through information provision, online communities, and support groups. Using the Internet may empower patients, enabling them to feel they have the required knowledge to discuss complementary and alternative treatment options with their health care team. Patients use the Internet because of its practicality; however, there are also several barriers affecting patients with cancer using the Internet, such as lack of information technology skills, lack of computer access, and concerns over the quality of information. Health care professionals need to be aware that the information available on the Internet plays a factor in the decision-making processes regarding using complementary and alternative medicine for self-management. With the use of the Internet as a tool for self-management continuing to grow, it is recommended that more emphasis is placed on health care professionals discussing the role the Internet plays in the decision-making process, to further support their patients regarding self-management for living with and beyond cancer.
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