ArticlePDF Available

Abstract and Figures

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.
Content may be subject to copyright.
Cancers 2022, 14, 3724.
A Digital Cancer Ecosystem to Deliver Health and Psychosocial
Education as Preventive Intervention
Laura Ciria-Suarez
, Laura Costas
, Aida Flix-Valle
, Maria Serra-Blasco
, Joan C. Medina
and Cristian Ochoa-Arnedo
eHealth ICOnnecta’t and Psycho-Oncology Services, Institut Català d’Oncologia,
08908 L’Hospitalet de Llobregat, Spain; (L.C.-S.); (A.F.-V.); (M.S.-B.); (J.C.M.); (C.O.-A)
Cancer Epidemiology Research Programme, IDIBELL, Institut Català d’Oncologia,
08908 L’Hospitalet de Llobregat, Spain; (L.C.)
Consortium for Biomedical Research in Epidemiology and Public Health (CIBERESP), 28029 Madrid, Spain
Psycho-Oncology and Digital Health, Health Services Research in Cancer, Institut d’Investigació Biomèdica
de Bellvitge (IDIBELL), 08908 L’Hospitalet del Llobregat, Spain
Department of Clinical Psychology and Psychobiology, Universitat de Barcelona, 08035 Barcelona, Spain
Department of Psychology, Universitat Abat Oliba CEU, 08022 Barcelona, Spain
Department of Psychology and Education Sciences, Universitat Oberta de Catalunya,
08018 Barcelona, Spain
* Correspondence:
Simple Summary: With the recent increase in survival rates of breast cancer patients, it is of key
importance to also improve their life quality. Disinformation regarding illness is one of the major
stress sources for patients with breast cancer. The present study aimed to study the educational
section of the digital ecosystem ICOnnecta’t, analyzing which health information areas are most
relevant for breast cancer patients. The fact that patients mostly consulted emotional and medical
audiovisual material within the first three months after diagnosis underlines the need to create
significant health-related content and deliver it to patients shortly after diagnosis. Those preventive
interventions are essential to avoid the deterioration of emotional distress, which in turn has been
shown to influence, not only life quality, but also patient survival.
Abstract: 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.
Citation: Ciria-Suarez, L.; Costas, L.;
Flix-Valle, A.; Serra-Blasco, M.;
Medina, J.C.; Ochoa-Arnedo, C. A
Digital Cancer Ecosystem to Deliver
Health and Psychosocial Education
as Preventive Intervention. Cancers
2022, 14, 3724.
Academic Editors: Electra Diane
Paskett and Beti Thompson
Received: 28 June 2022
Accepted: 28 July 2022
Published: 30 July 2022
Publisher’s Note: MDPI stays
neutral with regard to jurisdictional
claims in published maps and
institutional affiliations.
Copyright: © 2022 by the authors.
Licensee MDPI, Basel, Switzerland.
This article is an open access article
distributed under the terms and
conditions of the Creative Commons
Attribution (CC BY) license
Cancers 2022, 14, 3724 2 of 14
Keywords: breast cancer; educational strategy; internet-based intervention; cancer survivors;
stepped-care; psychosocial intervention
1. Introduction
Breast cancer (BC) is the most common cancer worldwide [1], being the leading cause
of death in women aged 20–50 years [2]. In 2020, there were around 2.3 million new BC
diagnoses and 685,000 BC deaths worldwide [3]. Despite this increased incidence, survival
has improved in the recent years, mainly as a consequence of therapeutic advances and
early diagnosis [4]. These data evidence that prevention and screening are key to dealing
with this critical health and social problem [5].
Cancer is a life-threatening disease that affects all spheres of life, impacting on
emotional, mental, and behavioral reactions [6]. In effect, a diagnosis triggers a complex
set of implications, such as coping with the new situation, managing physical symptoms,
re-adjusting the relationship with the family, and dealing with the existential dimension
of the illness. Moreover, such impacts can be observed both in the short and medium term
after diagnosis [7]. The management of the illness and treatment side effects increases
stress and uncertainty; anxiety, pessimism, and depression; physical pain, discomfort, and
social isolation; which overall diminish the quality of life of BC patients [8–10].
To date, psychosocial interventions, including supportive information, social
support, and cognitive therapy, have been proven to have positive effects in patients [11].
In fact, increasing cancer knowledge, self-management skills, and self-efficacy in
communication could also improve the quality of life of BC patients [9]. Emotional distress
prevention through such strategies has become a key challenge in the cancer journey, as
evidence shows their impact on patient’s health and the possibility to reduce it with
proper psychosocial interventions [12]. In the same line, receiving a psychosocial
intervention during oncological treatment can improve a patient’s health [13]. Indeed, a
recent meta-analysis by Oh et al. (2016) showed that psychosocial interventions during
the early phase of cancer were associated with a reduction in mortality in 41% of cases
[14]. A crucial part of such psychosocial interventions consists of health literacy [15],
which is the degree to which individuals can obtain, process, and understand basic health
information. Such information is required to engage in healthier decisions, such as
adherence to cancer screening programs [16] or exercising after breast cancer treatment
In order to address the psychosocial burden observed in BC patients, innovative
interventions are needed, especially taking into account the most vulnerable populations
[18]. To this aim, eHealth (i.e., healthcare services provided electronically) is a growing
field, which is transforming health promotion and healthcare delivery, and which
provides a new opportunity to reach and engage with communities [19]. Interventions
through eHealth appear to be a solution to meet the psychosocial needs of BC patients,
helping them to improve their health literacy, such as their cancer information
management skills and emotional functioning, thus improving their quality of life [8].
eHealth has the potential to reach a large number of people; however, there are barriers
to digital technology engagement, such as limited digital and traditional health literacy
[20]. To assure equity, eHealth programs must address the variability of digital health
literacy of users (e.g., disadvantaged groups, older patients) [20], as well as capturing the
perspectives from all sociocultural communities [19].
ICOnnecta’t is a stepped eHealth ecosystem led from a public, monographic,
oncological hospital located in Southern Europe and supported by Horizon 2020, through
the European Institute of Innovation and Technology, which pursues the deployment of
new digital tools in cancer care. The objective of this program applied to BC patients is to
support them by, first, monitoring their symptoms and assessing psychosocial risk
through a mobile application, and, if needed, offering them educational information and
Cancers 2022, 14, 3724 3 of 14
psychosocial care [21,22]. Therefore, ICOnnecta’t is structured in four stepped levels: (1)
screening and monitoring, (2) education resources, (3) peer-support community, and (4)
online-group psychotherapy. The program has been developed together with BC patients
and professionals, with the focus on creating a platform adapted to the specific
circumstances of this target population. This digital program allows monitoring patients
and offering resources to patients who otherwise could not have access to them, either
due to constraints related to face-to-face visits (e.g., mobility or economic difficulties) or
to hospital capacity (e.g., limited staff availability). Indeed, the ecosystem was created to
democratize psychosocial care and health education in cancer. Recently, ICOnnecta’t has
proven to be a successful eHealth tool to monitor symptoms and psychosocial needs,
facilitating access to guided early interventions [22]. Digital psychosocial education
resources may promote equity in the access of knowledge, and therefore result in an
increased quality of life of BC patients
In ICOnnecta’t, BC patients can access the second care level, education resources,
both autonomously (directly from the app) or prescribed by a professional when they
detect distress during the screening and monitoring (first care level of the ecosystem).
Teaching strategies for patient education, such as audio and videotapes, and written
materials, have been shown to increase knowledge, decrease anxiety, and increase
satisfaction [23]. Therefore, the present study aimed to describe and assess the use of the
educational section of ICOnnecta’t (virtual campus, level 2) in a sample of recently
diagnosed BC patients during the first two years of the ecosystem’s implementation.
2. Materials and Methods
2.1. Study Design
This study follows a quasi-experimental, single-group, longitudinal design.
It was developed according to the 1964 Helsinki declaration and its later amendments
and was approved by the Clinical Research Ethics Committee of the leading institution on
25 October 2018 (PR343/18).
2.2. Recruitment and Participants
BC patients were recruited from the Catalan Institute of Oncology (ICO), a public
and monographic center specialized in cancer, located in north-eastern Spain. This
institute is made up of several facilities distributed in different locations, being the
reference oncologic center for more than 40% of the adult population of Catalonia. ICO
belongs to The Spanish National Healthcare System, which guarantees universal coverage
and free healthcare access to all Spanish nationals, regardless of economic situation or
participation in the social security network.
Healthcare professionals informed about the study to all BC patients recently
diagnosed, and those interested were referred to the ICOnnecta’t service to arrange a visit.
Afterwards, ICOnnecta’t personnel explained and clarified doubts about the program,
checked eligibility criteria, invited the participant to sign the informed consent, guided
them to install the digital ecosystem on their smartphones, and gave them basic
management training to use it. At this point, participants were in the first care level of the
program (i.e., screening and monitoring).
Participants recruited from 15 March 2019 (when the first patient accessed it) to 14
March 2021 were selected, so the first two years of the virtual campus data were analyzed.
To allow sufficient longitudinal follow-up data, the first year of each participant was
analyzed. Eligibility criteria were (1) adults (18 years), (2) diagnosed with a first episode
of BC in the previous 3 months, (3) internet access and user-level skills, and (4) fluent in
Catalan or Spanish. Exclusion criteria were: (1) major depressive disorder, psychosis, or
substance abuse; (2) autolytic ideation; or (3) impaired cognition.
Cancers 2022, 14, 3724 4 of 14
2.3. ICOnnecta’t Intervention
ICOnnecta’t is an eHealth program addressed to cancer patients, to offer them a dig-
ital intervention through an app. It is organized into four levels of care, offered progres-
sively, according to patients’ psychosocial needs. All patients join the program in the first
level and they retain access to the previous levels if they step up [22,24].
Level 1: This consists of a screening and monitoring risk assessment system. Patients
fill in periodical psychosocial questionnaires (reviewed by psychologists), while physical
symptoms are monitored by nurses. Patients receive automatic health advice for their
symptoms from the app, and tailored messages or (video)calls from health professionals,
if needed. Similarly, if moderate or high emotional distress is identified, a psychologist
offers the patient a videoconference to explore their needs and propose they access the
second level of care, the educational platform.
Level 2: The second level consists of a wide variety of educational resources, through
a virtual campus. Patients can access it directly from the ICOnnecta’t app, either sponta-
neously or guided by health professionals. The latter case occurs when distress is identi-
fied in level 1 and they are referred to level 2, as aforementioned. All education resources
were selected and co-created with BC patients and health professionals. This article fo-
cuses on this second level of ICOnnecta’t, and therefore it is further described below.
Level 3: This is a social community guided by health professionals, where BC patients
can, in an anonymous way, share their experiences and ask questions about their needs to
other patients. This community is structured by mirroring the campus co-created topics.
Level 4: This consists of a psychotherapy group offered by a specialized clinical psy-
chologist. It is conducted through videoconference and is structured in eight weekly 90-
min sessions, with a positive psychology approach [25].
Satisfaction with ICOnnecta’t and its usability as perceived by the participants were
assessed three weeks after registration in the program with a 0–10 VAS. No clear interpre-
tation bands were found in the literature. Therefore, we reported the scores 5 as satisfac-
tion/usability approved by patients.
2.4. Description of Level 2, the Virtual Campus
The development of the educational platform (virtual campus) for patients was co-
created in different steps, involving both BC patients and cancer health professionals.
There was an expert patient involved throughout the process, who gave support in con-
tent development. This patient, a BC survivor and pedagogue, had been part of a support
group with other patients, where she collected a varied range of experiences of survivors.
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 ad-
ministered to 186 BC patients afterwards. Through that questionnaire, the use and psy-
chological impact of searching for information on the Internet was assessed. Similarly,
focus groups were also held with 8 health professionals (i.e., psycho-oncologist, nurses,
oncologist, radiotherapist, medical radiologist, and gynecologist), who provided guid-
ance regarding the most demanded information in consultations. Afterwards, a question-
naire was administered to 59 health professionals about their perception of the use and
psychological impact of searching for information online on patients. Finally, within the
framework of hospital dissemination activities, some meetings were held with patients,
where their feedback on future developments was collected.
The knowledge generated through all these procedures led to a virtual campus orga-
nized in 6 different thematic areas, where patients can consult various types of resources.
On its homepage, participants can find a presentation of the space, describing the campus;
highlighting the information reliability, veracity, and rigorousness; and an endorsement
by professionals. In the same page, patients have access to the information of all the pro-
fessionals involved in the project.
Cancers 2022, 14, 3724 5 of 14
The 6 thematic areas are the following:
1. The first thematic area is called “my emotions”. Here, patients can find videos,
closed-questionnaires, experience-questions, and text information for the emotional
impact of cancer, sadness, fear, and irritability.
2. The second area is related to the disease and treatments. Resources in this area are
videos, closed-questionnaires, and experience-questions about surgery, chemother-
apy, radiotherapy, brachytherapy, breast reconstruction, and cancer-associated
3. The third area is about “my personal relationships”, where information about chil-
dren (both communication with them and their emotional experience), about the con-
spiracy of silence and on how to face the visits with the oncologist. Resources in this
area are again videos, closed-questionnaires, experience-questions, and text infor-
4. The fourth area is related to the body, concretely about body image, hereditary can-
cer, and sexuality. Resources in this area are videos, closed-questionnaires, experi-
ence-questions, text information, and one infographic.
5. The fifth area is about a healthy lifestyle, where information about nutrition and rest
(sleep and recommendations for insomnia) is featured. In this area, all type of formats
can be found.
6. The sixth area is related to daily life and activities. This last section contains infor-
mation about the taboo of cancer. Resources in this area are videos, closed-question-
naires, experience-questions, and text information.
These resources have been expanded over time, we restricted the present analyses to
those resources that were available before the first patient was recruited, to avoid a tem-
poral bias.
2.5. Statistical Analyses
Descriptive analyses were performed using a Chi-square test for categorical param-
eters and non-parametric Kruskal–Wallis test for non-normally distributed continuous
variables. Median and interquartile ranges were used as measures of central tendency and
dispersion. All analyses were conducted using Stata version 16.0 (Statacorp, Texas, US),
and graphs were performed using R version 4.1.2.(R Core Team, Vienna, Austria).
3. Results
3.1. Participant Characteristics
During the first two years of ICOnnecta’t, 348 BC patients were enrolled in the pro-
gram. Among these, 234 participants were considered “users of the first level”, since they
completed at least one psychosocial questionnaire or physical symptom in Level 1 of the
program. Of these 234 “users of the first level”, 99 consulted at least one resource from
Level 2 of the program, the virtual campus (considered “users” herein). The sociodemo-
graphic characteristics and clinical stage of the users (if they utilized at least one resource
of the virtual campus) and non-users (if they did not utilize any resources), are shown in
Table 1. Regarding the age, the mean age of the participants was 51.61 (SD = 8.78), the
median was 51 (IQR = 46–58), and the age ranged from 27 to 76. For users (n = 99), mean
age was 50.35 (SD = 7.93), median was 49 (IQR = 45–56), and the age ranged from 30 to 72.
For non-users (n=135), mean age was 52.53 (SD = 9.27), median was 52 (IQR = 46–60), and
age ranged from 27 to 76.
Cancers 2022, 14, 3724 6 of 14
Table 1. Description of participants.
Non-Users(n = 135) Users(n = 99)
-Value *
n (%) n(%)
Age (terciles)    0.116
<47 38 (28.1) 34(34.3)
47–55 44 (32.6) 39(39.4)
56+ 53 (39.3) 26(26.3)
Marital status    0.107
Married or common-law
partner 97 (71.9) 80(80.8)
Separated or divorced 15 (11.1) 4(4.0)
Single 8 (5.9) 8(8.1)
Widow 5 (3.7) 1(1.0)
missing 10 (7.4) 6(6.1)
Occupational status    0.182
Active 37 (27.4) 33(33.3)
Work leave 51 (37.8) 42(42.4)
Occupational disability 3 (2.2) 0(0.0)
Retired 13 (9.6) 4(4.0)
Passive 20 (14.8) 11(11.1)
missing 11 (8.1) 9(9.1)
Year of diagnosis    0.573
2019 80 (59.3) 54(54.5)
2020 54 (40.0) 43(43.4)
2021 1 (0.7) 2(2.0)
Stage    0.370
0-I 68 (50.4) 44(44.4)
II-IV 67 (49.6) 55(55.6)
* Chi squared, calculated without missing values, comparing participants and non-participants.
The average satisfaction level with the platform among the 134 participants who
completed this measure was 5.72 (SD = 3.37). Up to 65.67% reported being satisfied. In
turn, the mean platform usability perceived by the 178 participants who completed this
measure was 7.74 (SD = 2.98), with 79.09% of them reporting the ecosystem as easy to use.
3.2. Resource Utilization
When the ecosystem was launched for BC patients, the campus had 66 educational
resources. These resources had different formats (videos, closed questions, open ques-
tions, text, and infographics) and dealt with different topics (medical, emotional manage-
ment, healthy lifestyle, social management, physical appearance, and daily life).
Among users, the median number of resources viewed was four (interquartile range:
2–9). Medical and psychological resources were the type of contents most frequently
viewed, more than others such as healthy lifestyle, social management, physical appear-
ance, and daily life (p < 0.01). The audiovisual content was the most consulted format,
followed by texts, while infographics and questions were less consulted (median propor-
tion of 13%, 7%, 0%, and 0% of the utilized resources, respectively, p < 0.01). Within the
different topics, the most viewed thematic area was “my emotions” (median = 6% of
viewed resources), followed by the disease and treatment area (median = 5% of viewed
resources, p-value < 0.01 for types of content). Among the users of the campus, the median
viewed four educational resources, and the 85.9% watched at least one video, see Table 2.
Cancers 2022, 14, 3724 7 of 14
Table 2. Utilization of resources by type.
Number of
Total Number
of Utilizations
Median Proportion of
Utilized Resources,
among Users (IQR)
Median Number of
Resources Utilized
per User, among
Participants (IQR)
Women Who Have Utilized
One Resource or More
p-Value * p-Value * n % (among
Type of format
Videos 16 323 13% (6–31%) <0.01 2 (1–5) <0.01 85 85.9% 36.3%
Closed questions 16 144 0% (0–13%) 0 (0–2) 41 41.4% 17.5%
Open questions 15 50 0% (0–0%) 0 (0–0) 23 23.2% 9.8%
Text 15 195 7% (0–20%) 1 (0–3) 66 66.7% 28.2%
Infographics 4 45 0% (0–25%) 0 (0–1) 31 31.3% 13.2%
Type of content
Medical 20 245 5% (0–15%) <0.01 1 (0–3) <0.01 67 67.7% 28.6%
management 17 275 6% (0–24%) 1 (0–4) 53 53.5% 22.6%
Healthy lifestyle 10 105 0% (0–10%) 0 (0–1) 41 41.4% 17.5%
Social management 8 49 0% (0–0%) 0 (0–0) 22 22.2% 9.4%
Physical appearance 7 70 0% (0–14%) 0 (0–1) 41 41.4% 17.5%
Daily life 4 13 0% (0–0%) 0 (0–0) 8 8.1% 3.4%
Total 66 757 6% (3–14%) 4 (2–9) 99 100.0% 42.3%
* Non-parametric Kruskal–Wallis test, across type of format and content categories. IQR: Interquar-
tile range.
3.3. Patterns of Utilization: Guided vs. Spontaneous Use
As exposed above, once patients have logged in ICOnnecta’t app, they can access the
virtual campus in two different ways. Guided use involves a health professional actively
recommending the campus (level 2) in one of the first level interactions. On the other
hand, spontaneous use was defined as autonomous use without any health professional
indication. Of the 99 campus’ users (BC patients who consulted at least one resource in
the virtual campus) 50 were guided and 49 made a spontaneous use. From the 135 patients
who were non-users, 28 BC patients were guided but, in the end, they did not use any of
the resources.
Guided users consulted a median of seven educational resources per person (IQR =
2–10), while spontaneous users consulted a median of three (IQR = 2–8). There were sta-
tistical differences between spontaneous use and guided use by type of format (p = 0.035
and 0.001 for text and infographics, respectively) and content (p = 0.033 and 0.048 for med-
ical and social management, respectively), see Table 3.
There were no significant differences in utilization by tumor stage (p = 0.536).
Table 3. Use of resources among users by type of use: guided use vs. spontaneous use.
Number of
Median Proportion of
Utilized Resources,
among Users (IQR)
Median Number
of Resources
Utilized per
User, among
Users (IQR)
Women Who Utilized One Resource or
Number of
Value * n
% (among
-Spontaneous or
USE (n = 49)
Type of format
Videos 16 125 13% (6–22%) 0.053 2 (1–4) 41 83.7% 41.4% 17.5%
Closed questions 16 40 0% (0–6%) 0.256 0 (0–1) 19 38.8% 19.2% 8.1%
Open questions 15 16 0% (0–0%) 0.783 0 (0–0) 11 22.4% 11.1% 4.7%
Text 15 68 7% (0–13%) 0.035 1 (0–2) 29 59.2% 29.3% 12.4%
Infographics 4 9 0% (0–0%) 0.001 0 (0–0) 8 16.3% 8.1% 3.4%
Type of content
Medical 20 83 5% (0–10%) 0.033 1 (0–2) 31 63.3% 31.3% 13.2%
management 17 104 0% (0–18%) 0.096 0 (0–3) 22 44.9% 22.2% 9.4%
Healthy lifestyle 10 30 0% (0–10%) 0.076 0 (0–1) 17 34.7% 17.2% 7.3%
Cancers 2022, 14, 3724 8 of 14
management 8 12 0% (0–0%) 0.048 0 (0–0) 7 14.3% 7.1% 3.0%
appearance 7 25 0% (0–14%) 0.170 0 (0–1) 18 36.7% 18.2% 7.7%
Daily life 4 4 0% (0–0%) 0.450 0 (0–0) 3 6.1% 3.0% 1.3%
Total 66 258 5% (3–11%) 0.026 3 (2–8) 49 100.0% 49.5% 20.9%
GUIDED USE (n = 50)
Type of format
Videos 16 198 19% (6–31%) 3 (1–5) 44 88.0% 44.4% 18.8%
Closed questions 16 104 0% (0–13%) 0 (0–2) 22 44.0% 22.2% 9.4%
Open questions 15 34 0% (0–2%) 0 (0–0) 12 24.0% 12.1% 5.1%
Text 15 127 10% (0–20%) 2 (0–3) 37 74.0% 37.4% 15.8%
Infographics 4 36 0% (0–25%) 0 (0–1) 23 46.0% 23.2% 9.8%
Type of content
Medical 20 162 13% (0–20%) 3 (0–4) 36 72.0% 36.4% 15.4%
management 17 171 9% (0–25%) 2 (0–4) 31 62.0% 31.3% 13.2%
Healthy lifestyle 10 75 0% (0–20%) 0 (0–2) 24 48.0% 24.2% 10.3%
management 8 37 0% (0–13%) 0 (0–1) 15 30.0% 15.2% 6.4%
appearance 7 45 0% (0–18%) 0 (0–1) 23 46.0% 23.2% 9.8%
Daily life 4 9 0% (0–0%) 0 (0–0) 5 10.0% 5.1% 2.1%
Total 66 499 10% (3–15%) 7 (2–10) 50 100.0% 50.5% 21.4%
* Non-parametric Kruskal–Wallis test, by guided use. IQR: Interquartile range.
3.4. Patterns of Utilixation over Time
The highest number of educational resource consultations occurred during the first
3 months after BC patients joined the ICOnnecta’t program (Figure 1). During the first
months, the most viewed were the emotional aspects. The consultation of all resources
decreased over time, for all topics. Notably, there was a small change in this trend between
9–12 months for physical appearance. Resources related to medical aspects decreased less
markedly than the rest, being the most viewed between 3 and 9 months.
Figure 1. Utilization of resources over time.
Cancers 2022, 14, 3724 9 of 14
4. Discussion
ICOnnecta’t is an eHealth ecosystem to deliver preventive education and psychoso-
cial care in cancer. This research describes the behavior of BC patients regarding the edu-
cational section of ICOnnecta’t during the first two years of its implementation. No sig-
nificant differences were found for sociodemographic and clinical variables (age, marital
status, occupational status, year of diagnosis, and clinical stage) between the patients who
accessed the virtual campus and consulted any resource (users), versus those who did not
view any resource (non-users), showing that the variables with an impact in SES and re-
lated with equity do not influence the access/use of eHealth care programs in the BC jour-
ney. Previous literature described that there are differences when accessing information
through electronic devices in BC patients. In particular, the degree of digitization de-
pended on age, education, and household size; although, the presence of internet access,
internet use, and the availability of mobile devices for internet use increased from 2012 to
2020 [27]. It is recommended to offer instruction and support services, especially for mid-
dle-aged and older patients to boost patient engagement [28]. But the eHealth behavior is
not only influenced by SES variables, as points out the study of Faber et al. [29], which
details the importance of eHealth interventions being aligned with the person's attitude.
Such research, which investigates the eHealth attitudes of people living in a neighborhood
with low SES, identify two general attitudes. The first one, which represented approxi-
mately half of the sample, was optimistically engaged, involved light-heartedness toward
health, loyalty toward healthcare, and eagerness to adopt eHealth. These results are in
line with other studies that also show that participants with low SES can engage in eHealth
interventions [30–33]. The second attitude, embodied roughly a quarter of the sample,
were doubtfully disadvantaged, feeling hesitance toward eHealth adoption. They pro-
pose, among others, that eHealth intervention should suit the day-to-day of the person,
have personal communication, and adapt it to literacy level and life situation. In this re-
gard, there are other studies that detail the importance of coaches in studies with partici-
pants with low SES [30,33,34]. In our sample, we have not seen differences by sociodem-
ographic variables between users and non-users, of the educational campus (level 2). It is
important to point that the relationship of the patient with the ICOnnecta’t eHealth plat-
form is always mediated by a healthcare professional. Therefore, offering an education
platform integrated into a more comprehensive online digital health program (ICOn-
necta’t), offered personally and with installation and problem-solving support provided
to each patient, probably facilitates adherence to the platform and promotes equity in its
Regarding the preferred format of consulted materials, videos were the most ac-
cessed, while text, infographics or questions were less consulted. This finding is in line
with the fact that the second most visited website in the world is YouTube, which contains
60% of all videos of Internet and may be used as a health educational resource [35,36].
Studies that investigated the quality of YouTube videos about several cancer types (colo-
rectal, prostate and breast) found poor quality and accuracy in health content [35–37]. The
virtual campus from ICOnnecta’t constitutes a user-friendly content-provider offering in-
formation created by hospital professionals, thus guaranteeing validity and fostering pre-
vention in disease management.
Respecting the type of content, emotional and medical resources were the most fre-
quently visualized, over healthy lifestyle, social management, physical appearance and
daily life. Hongru Lu et al. [38], in the synthesis about information needs of BC patients,
detailed that 94% of the studies reported that patients were concerned about treatment
information, such as intervention procedures, side effects and preoperative procedures.
In general, disease-focused information are the most engaging type of information [39,40].
Hongru Lu et al. [38] also pointed out that doctors do not pay enough attention to the
emotional pressure that patients feel during the diagnosis and treatment, remarking the
need to address this kind of information. This finding agrees with the literature regarding
Cancers 2022, 14, 3724 10 of 14
the high rates (30–60%) of cancer-related distress after a BC diagnosis [7,41], and the few
of them (fewer than 30%) receiving psychosocial care [41].
Regarding patterns of visualization, differences were observed between patients who
were guided (those for whom a healthcare professional, having interacted with them at
level 1, has proposed to consult a/some specific resources) versus those who accessed the
virtual campus in a spontaneous way. Those guided visualized more resources than spon-
taneous users. Patients may sometimes feel that they are receiving too much information
while, at some other times, they feel that the information is not enough ; therefore, it is
important to ensure that they receive a balanced information, in the appropriate format,
and at the right time [42]. In order to reach such a challenging goal, a plausible approach
is to tailor the information to each patient [43], and offering step-by-step guidance [44],
which could favor the patient comfort to search the specific information needed. Thus, the
strategy used in ICOnnecta’t, helps the patient receiving the information they lack, as a
health professional also detects patients’ needs.
Regarding the utilizations over time, the highest number occurred during the first
three months of joining ICOnnecta’t. As the literature remarks, patients value information
early in the disease pathway [45]. After cancer diagnosis, patients’ information needs are
broad; there is a significant level of adjustment [45] and they are interested in the diagno-
sis, treatments, side effects, finances, and strategies for coping with social and emotional
aspects [46]. Furthermore, the moment of diagnosis is surrounded by a high emotional
impact that entails an emotional whirlwind, which must be managed gradually [7]. This
situation could explain the high number of emotional resource views, especially as a major
need from the beginning. Healthy lifestyle information, such as nutrition and rest, were
also resources viewed during these first months, which could imply the need of patients
to take care of themselves and to feel active in their own recovery. BC patients are known
to be one of the most active populations regarding their disease. As has been highlighted,
medical information is one of the most important areas to consider [39,40], and we also
saw that its access decreased more gradually, since many of the patients were receiving
aggressive medical treatments during 3 to 9 months. Finally, it should be noted that the
interest in physical appearance showed a small peak at 9–12 months, which could be ex-
plained by many factors. First of all, in many situations this timing coincides with breast
reconstruction. Secondly, it is also the time when patients must prepare to return to “nor-
mality” [7]. Finally, physical concerns may appear once the most threating aspects of the
illness are diminishing. It is important to note that patients can access this information
from the beginning of their disease, offering prevention and offering a higher feeling of
satisfaction [33].
When we detailed the views by stage (0–I vs. II–IV) and type of use (spontaneous vs.
guided use), we found that most views were also made in the first 0–3 months (with emo-
tional management resources the most consulted), and that the tendency was to progres-
sively decrease over time in a similar way to the total views. In the case of the comparison
between cancer stages 0-I and II-IV, we observed that in the 3–6 months period, the most
prominent content for the II-IV stages was the medical content, but for those of lower
stages, the physical aspect was slightly above the medical aspect in this period. In the later
stages, physical appearance rebounded between 9–12 months. As stages 0–I do not receive
chemotherapy, the active treatment (surgery and radiotherapy) is administered for 5–6
months, while more advanced stages usually have a duration of active treatment (surgery,
chemotherapy, and radiotherapy) of about 1 year. In line with what we stated above,
physical appearance is a content that is displayed in a more relevant way once the active
treatments have finished.
There are some limitations that should lead to taking some results cautiously and
serve as recommendations for further studies. The organization of the resources in the
virtual campus could have affected their utilization, with the ones presented in the first
locations being more viewed (first thematic area was “my emotions” and the second area
was related with the disease and treatments). During the two first years of ICOnnecta’t
Cancers 2022, 14, 3724 11 of 14
implementation, some resources were added; this extension of resources could have in-
terfered with the results of the utilization. Moreover, due to technical issues, the views
were registered only the first time that the resource was consulted (not each time it was
accessed). Finally, this study was carried out with a single group, of a small sample size;
therefore, it would be more valuable to validate the information with a larger sample size
and educational resources, as well as with a randomized and more controlled design. In
any case, this study serves as a starting point for future studies, investigating the best
content, format, and time to deliver health knowledge to BC patients. Similarly, we deem
it crucial to estimate the cost-effectiveness of eHealth programs, in order to inform their
future uptake by health providers. This aim is being pursued in a RCT, which is currently
in the recruiting phase [24]. Once a program is developed, the main costs are related to
the update and expansion of the educational resources, patient follow up from an educa-
tional psychologist, and maintenance of the technological platform. Such investment
needs to be contemplated by providers interested in solutions such as ICOnnecta’t, which
are foreseen to be surpassed by their advantages.
5. Conclusions
The findings of this study provide clear recommendations regarding the information
about which BC patients are interested. Following the increasing interest in BC mobile
apps that focus on secondary and tertiary prevention [47], the virtual campus integrated
in the digital ecosystem ICOnnecta’t provides a secure environment with rigorous infor-
mation that can be prescribed by professionals, to cover BC patients’ health-related infor-
mation requirements. We would like to highlight that such requirements comprise, not
only medical, but also emotional information, from the very beginning of the disease. In
addition, the video format is the preferred way to receive health information, and patients
are more likely to use it if prescribed by a health professional. Finally, the current findings
show that patients’ information requirements change, depending on the moment of their
cancer journey. By covering the lack of information frequently experienced by patients,
we are promoting prevention from the very beginning of their disease.
Author Contributions: Conceptualization, C.O.-A. and L.C.-S.; Data curation, L.C., L.C.-S. and
J.C.M.; Formal analysis, L.C.; Funding acquisition, C.O.-A.; Investigation, L.C.-S., L.C., A.F.-V., M.S.-
B., J.C.M. and C.O.-A.; Methodology, L.C.-S. and C.O.-A.; Project administration, L.C.-S. and A.F.-
V.; Resources, C.O.-A., M.S.-B. and J.C.M.; Supervision, C.O.-A.; Writing–original draft, L.C.-S.;
Writing—review and editing, L.C.-S., L.C., A.F.-V., M.S.-B., J.C.M. and C.O.-A. All authors have
read and agreed to the published version of the manuscript.
Funding: This research was funded by the European Institute of Innovation and Technology (EIT)
(19046 [1st year], 20536 [2nd year]; ONCOMMUNITIES: Online Cancer Support Communities). This
work has also been supported by the Carlos III Health Institute under the FIS grant PI19/01880, co-
financed by the European Regional Development Fund (ERDF) ‘a way to build Europe’, and by the
Secretaria d’Universitats i Recerca of the Generalitat de Catalunya and The European Social Fund
under the FI grant 2020 FI_B 00288. It also counts with support from CIBERESP C06/02/0073. Finally,
the Generalitat de Catalunya through the consolidated research groups “Research in health services
in cancer” (2017SGR00735) and "Epidemiologia Molecular i Genètica en Infeccions i Càncer (EMG)”
(2017SGR1085) has also partially funded this research.
Institutional Review Board Statement: The study was conducted according to the guidelines of the
Declaration of Helsinki and approved by the Institutional Review Board (or Ethics Committee) of
the INSTITUT CATALÀ D’ONCOLOGIA on the 25 October 2018 (PR343/18).
Informed Consent Statement: Informed consent was obtained from all subjects involved in the
Data Availability Statement: The anonymized datasets of this study may be obtained from the cor-
responding author upon reasonable request.
Cancers 2022, 14, 3724 12 of 14
Acknowledgments: Authors want to express their gratitude to all BC patients who generously
agreed to participate in this project. We thank also Noemie Travier and all the ICOnnecta’t team for
their invaluable contributions.
Conflicts of Interest: The authors declare no conflicts of interest.
1. WHO. Breast Cancer Now Most Common Form of Cancer: WHO Taking Action. Available online: (accessed on
20 March 2021).
2. Iacoviello, L.; Bonaccio, M.; de Gaetano, G.; Donati, M.B. Epidemiology of Breast Cancer, a Paradigm of the “Common Soil”
Hypothesis. In Seminars in Cancer Biology; Academic Press: Cambridge, MA, USA, 2021; pp. 4–10.
3. Sung, H.; Ferlay, J.; Siegel, R.L.; Laversanne, M.; Soerjomataram, I.; Jemal, A.; Bray, F. Global Cancer Statistics 2020: GLOBOCAN
Estimates of Incidence and Mortality Worldwide for 36 Cancers in 185 Countries. CA Cancer J. Clin. 2021, 71, 209–249.
4. Clèries, R.; Rooney, R.M.; Vilardell, M.; Espinàs, J.A.; Dyba, T.; Borras, J.M. Assessing Predicted Age-Specific Breast Cancer
Mortality Rates in 27 European Countries by 2020. Clin. Transl. Oncol. 2017, 20, 313–321.
5. Grassi, L. Psychiatric and Psychosocial Implications in Cancer Care: The Agenda of Psycho-Oncology. Epidemiol. Psychiatr. Sci.
2020, 29, e89.
6. lzkan, M. Psychosocial Adaptation during and after Breast Cancer. In Breast Disease: Management and Therapies; Springer: Ber-
lin/Heidelberg, Germany, 2016. ISBN: 9783319260129.
7. Ciria-Suarez, L.; Jiménez-Fonseca, P.; Palacín-Lois, M.; Antoñanzas-Basa, M.; Fernández-Montes, A.; Manzano-Fernández, A.;
Castelo, B.; Asensio-Martínez, E.; Hernando-Polo, S.; Calderon, C. Breast cancer patient experiences through a journey map: A
qualitative study. PLoS ONE 2021, 16, e0257680.
8. Kim, S.C.; Hawkins, R.P.; Shah, D.V.; Gustafson, D.H.; Baker, T.B. Understanding how e-health interventions meet psychosocial
needs of breast cancer patients: The pathways of influence on quality of life and cancer concerns. Psycho-Oncology 2020, 29,
9. Yanez, B.R.; Buitrago, D.; Buscemi, J.; Iacobelli, F.; Adler, R.F.; Corden, M.E.; Perez-Tamayo, A.; Guitelman, J.; Penedo, F.J. Study
design and protocol for My Guide: An e-health intervention to improve patient-centered outcomes among Hispanic breast
cancer survivors. Contemp. Clin. Trials 2017, 65, 61–68.
10. Calderon, C.; Carmona-Bayonas, A.; Hernández, R.; Ghanem, I.; Castelo, B.; de Castro, E.M.; Ferreira, E.; Ciria, L.; Muñiz, M.;
Jimenez-Fonseca, P. Effects of pessimism, depression, fatigue, and pain on functional health-related quality of life in patients
with resected non-advanced breast cancer. Breast 2019, 44, 108–112.
11. Kumar, K.; Mattoo, S.K. Psychosocial Aspects of Breast Cancer. In Breast Cancer; Sharma, S.C., Mazumdar, A., Kaushik, R., Eds.;
Springer: Singapore, 2022; pp. 567–571.
12. Ochoa-Arnedo, C.; Prats, C.; Travier, N.; Marques-Feixa, L.; Flix-Valle, A.; de Frutos, M.L.; Domingo-Gil, E.; Medina, J.C.; Serra-
Blasco, M. Stressful Life Events and Distress in Breast Cancer: A 5-Years Follow-Up. Int. J. Clin. Health Psychol. 2022, 22, 100303.
13. Chen, Y.; Ahmad, M. Effectiveness of adjunct psychotherapy for cancer treatment: A review. Futur. Oncol. 2018, 14, 1487–1496.
14. Oh, P.J.; Shin, S.R.; Ahn, H.S.; Kim, H.J. Meta-analysis of psychosocial interventions on survival time in patients with cancer.
Psychol. Health 2015, 31, 396–419.
15. Samoil, D.; Kim, J.; Fox, C.; Papadakos, J.K. The importance of health literacy on clinical cancer outcomes: A scoping review.
Ann. Cancer Epidemiol. 2021, 5, 30.
16. Baccolini, V.; Isonne, C.; Salerno, C.; Giffi, M.; Migliara, G.; Mazzalai, E.; Turatto, F.; Sinopoli, A.; Rosso, A.; De Vito, C.; et al.
The association between adherence to cancer screening programs and health literacy: A systematic review and meta-analysis.
Prev. Med. 2021, 155, 106927.
17. Plummer, L.C.; Chalmers, K.A. Health literacy and physical activity in women diagnosed with breast cancer. Psycho-Oncology
2016, 26, 1478–1483.
18. Hand, T.; Rosseau, N.A.; Stiles, C.E.; Sheih, T.; Ghandakly, E.; Oluwasanu, M.; Olopade, O.I. The global role, impact, and limi-
tations of Community Health Workers (CHWs) in breast cancer screening: A scoping review and recommendations to promote
health equity for all. Glob. Health Action 2021, 14, 1883336.
19. Brewer, L.C.; Fortuna, K.L.; Jones, C.; Walker, R.; Hayes, S.N.; A Patten, C.; A Cooper, L. Back to the Future: Achieving Health
Equity Through Health Informatics and Digital Health. JMIR mHealth uHealth 2020, 8, e14512.
20. Kemp, E.; Trigg, J.; Beatty, L.; Christensen, C.; Dhillon, H.M.; Maeder, A.; Williams, P.A.H.; Koczwara, B. Health literacy, digital
health literacy and the implementation of digital health technologies in cancer care: The need for a strategic approach. Health
Promot. J. Aust. 2020, 32, 104–114.
Cancers 2022, 14, 3724 13 of 14
21. Ochoa-Arnedo, C.; Flix-Valle, A.; Medina, J.C.; Escriche, E.; Rodríguez, A.; Villanueva, C.; Sumalla, E.C.; Alabèrnia-Segura, M.;
Prats, C.; Corral, M.J.; et al. E-Health Iconnecta’t Program: An Ecosystem to Promote Wellbing in Cancer towards Oncommun
European Proposal. Psicooncologia 2020, 17, 41–58.
22. Medina, J.C.; Flix-Valle, A.; Rodríguez-Ortega, A.; Hernández-Ribas, R.; de Frutos, M.L.; Ochoa-Arnedo, C. ICOnnecta’t: De-
velopment and Initial Results of a Stepped Psychosocial eHealth Ecosystem to Facilitate Risk Assessment and Prevention of
Early Emotional Distress in Breast Cancer Survivors’ Journey. Cancers 2022, 14, 974.
23. Friedman, A.J.; Cosby, R.; Boyko, S.; Hatton-Bauer, J.; Turnbull, G. Effective Teaching Strategies and Methods of Delivery for
Patient Education: A Systematic Review and Practice Guideline Recommendations. J. Cancer Educ. 2010, 26, 12–21.
24. Ochoa-Arnedo, C.; Medina, J.C.; Flix-Valle, A.; Anastasiadou, D. E-health ecosystem with integrated and stepped psychosocial
services for breast cancer survivors: Study protocol of a multicentre randomised controlled trial. BMJ Open 2021, 11, e041548.
25. Arnedo, C.O.; Casellas-Grau, A. Positive Psychotherapy in Cancer: Facilitating Posttraumatic Growth in Assimilation and Ac-
commodation of Traumatic Experience. In Comprehensive Guide to Post-Traumatic Stress Disorder; Springer: Cham, Switzerland,
2015; p. 114.
26. Ochoa-Arnedo, C.; Flix-Valle, A.; Casellas-Grau, A.; Casanovas-Aljaro, N.; Herrero, O.; Sumalla, E.C.; de Frutos, M.L.; Sirgo, A.;
Rodríguez, A.; Campos, G.; et al. An exploratory study in breast cancer of factors involved in the use and communication with
health professionals of Internet information. Support. Care Cancer 2020, 28, 4989–4996.
27. Mallmann, C.A.; Domröse, C.M.; Schröder, L.; Engelhardt, D.; Bach, F.; Rueckel, H.; Abramian, A.; Kaiser, C.; Mustea, A.; Faridi,
A.; et al. Digital Technical and Informal Resources of Breast Cancer Patients From 2012 to 2020: Questionnaire-Based Longitu-
dinal Trend Study. JMIR Cancer 2021, 7, e20964.
28. Crouch, E.; Gordon, N.P. Prevalence and Factors Influencing Use of Internet and Electronic Health Resources by Middle-Aged
and Older Adults in a US Health Plan Population: Cross-Sectional Survey Study. JMIR Aging 2019, 2, e11451.
29. Faber JS, Al-Dhahir I, Reijnders T, Chavannes NH, Evers AWM, Kraal JJ, et al. Attitudes Toward Health, Healthcare, and
eHealth of People With a Low Socioeconomic Status: A Community-Based Participatory Approach. Front Digit Heal. 2021, 3, 1–
15. doi:10.3389/fdgth.2021.690182
30. Silfee VJ, Lopez-Cepero A, Lemon SC, Estabrook B, Nguyen O, Wang ML, et al. Adapting a behavioral weight loss intervention
for delivery via facebook: A pilot series among low-income postpartum women. JMIR Form Res. 2018, 2, 18. doi:10.2196/forma-
31. Cavallo DN, Martinez R, Webb Hooper M, Flocke S. Feasibility of a social media-based weight loss intervention designed for
low-SES adults. Transl. Behav. Med. 2021, 11, 981–992. doi:10.1093/tbm/ibaa070
32. Greene, E.M.; O’Brien, E.C.; Kennelly, M.A.; O’Brien, O.A.; Lindsay, K.L.; McAuliffe, F.M. Acceptability of the pregnancy, ex-
ercise, and nutrition research study with smartphone app support (PEARS) and the use of mobile health in a mixed lifestyle
intervention by pregnant obese and overweight women: Secondary analysis of a randomized controlled trial. JMIR mHealth
uHealth. 2021, 9, 17189. doi:10.2196/17189
33. Mayberry LS, Berg CA, Harper KJ, Osborn CY. The Design, Usability, and Feasibility of a Family-Focused Diabetes Self-Care
Support mHealth Intervention for Diverse, Low-Income Adults with Type 2 Diabetes. J. Diabetes Res. 2016,
34. Patten CA, Fu S, Vickerman K, Bock MJ, Nelson D, Zhu SH, et al. Support person interventions to increase use of quitline
services among racially diverse low-income smokers: A pilot study. Addict. Behav. Reports. 2019, 9, 100171. doi:10.1016/j.ab-
35. Bae, S.S.; Baxter, S. YouTube videos in the English language as a patient education resource for cataract surgery. Int. Ophthalmol.
2017, 38, 1941–1945.
36. Sahin, A.N.; Sahin, A.S.; Schwenter, F.; Sebajang, H. YouTube Videos as a Source of Information on Colorectal Cancer: What
Do Our Patients Learn? J. Cancer Educ. 2018, 34, 1160–1166.
37. Yurdaisik, I. Analysis of the Most Viewed First 50 Videos on YouTube about Breast Cancer. BioMed Res. Int. 2020, 2020, 1–7.
38. Lu, H.; Xie, J.; Gerido, L.H.; Cheng, Y.; Chen, Y.; Sun, L. Information Needs of Breast Cancer Patients: Theory-Generating Meta-
Synthesis. J. Med Internet Res. 2020, 22, e17907.
39. Singleton, A.C.; Raeside, R.; Hyun, K.K.; Partridge, S.R.; Di Tanna, G.L.; Hafiz, N.; Tu, Q.; Tat-Ko, J.; Sum, S.C.M.; Sherman,
K.A.; et al. Electronic Health Interventions for Patients with Breast Cancer: Systematic Review and Meta-Analyses. J. Clin. Oncol.
2022, 40, 2257.
40. McRoy, S.; Rastegar-Mojarad, M.; Wang, Y.; Ruddy, K.J.; Haddad, T.C.; Liu, H. Assessing Unmet Information Needs of Breast
Cancer Survivors: Exploratory Study of Online Health Forums Using Text Classification and Retrieval. JMIR Cancer 2018, 4,
Cancers 2022, 14, 3724 14 of 14
41. Lally, R.M.; Kupzyk, K.A.; Bellavia, G.; Hydeman, J.; Gallo, S.; Helgeson, V.S.; Erwin, D.; Mills, A.C.; Brown, J.K. CaringGuid-
ance™ after breast cancer diagnosis eHealth psychoeducational intervention to reduce early post-diagnosis distress. Support.
Care Cancer 2019, 28, 2163–2174.
42. Ormel, I.; Magalhaes, M.; Josephson, D.; Tracey, L.; Law, S. How to know what to know: Information challenges for women in
the diagnostic phase of breast cancer. Patient Educ. Couns. 2020, 104, 179–185.
43. Sheehy, E.M.; Lehane, E.; Quinn, E.; Livingstone, V.; Redmond, H.P.; Corrigan, M.A. Information Needs of Patients with Breast
Cancer at Years One, Three, and Five After Diagnosis. Clin. Breast Cancer 2018, 18, e1269–e1275.
44. Drageset, S.; Lindstrøm, T.C.; Underlid, K. Coping with breast cancer: Between diagnosis and surgery. J. Adv. Nurs. 2009, 66,
45. Tran, Y.; Lamprell, K.; Easpaig, B.N.G.; Arnolda, G.; Braithwaite, J. What information do patients want across their cancer jour-
neys? A network analysis of cancer patients’ information needs. Cancer Med. 2018, 8, 155–164.
46. Jacobs, M.; Johnson, J.; MyPath: Investigating Breast Cancer Patients’ Use of Personalized Health Information. Proc. ACM Hum.
-Comput. Interact. 2018, 2, 1–21.
47. Houghton, L.C.; Howland, R.E.; McDonald, J.A. Mobilizing Breast Cancer Prevention Research Through Smartphone Apps: A
Systematic Review of the Literature. Front. Public Health 2019, 7, 298.
... Qualitative research offers a solution to the gap in the literature on PS as it can further our understanding of the patient's experience of participating in PS. Specifically, meta-ethnography, a well-known method to synthesize qualitative research, is useful in the area of analyzing individuals' experiences (Adams et al., 2011;Atkins et al., 2008;Wanat et al., 2016), which can then be used to understand patient needs, as information and support are frequently sought by patients (Ciria-Suarez et al., 2022;Medina et al., 2022). To the best of our knowledge, no previous meta-ethnography has been conducted to explore the experience of PS in BC. ...
... Our review clearly demonstrates that patients have a desire not only to feel emotionally supported but also to feel comfortable enough navigating the cancer experience and receiving the information they need related to the illness. Literature describes that women with BC often have unmet information needs and experience difficulties when communicating with healthcare professionals (Collie et al., 2005;Parker et al., 2009) and that emotional aspects and more disease-specific information are the most demanded (Benedict et al., 2022;Ciria-Suarez et al., 2022;PDQ Supportive and Palliative Care Editorial Board, 2015). It seems that achieving the right balance between information and emotional support is a core challenge as, on the one hand, patients appear to appreciate relevant illness information, but on the other hand, there is a risk that too much information reduces emotional connection and can contribute to increasing fears in PS users' experience. ...
Full-text available
Breast cancer is associated with adverse physical and psychological consequences. Although research has identified the various benefits linked to psychosocial interventions, mixed results have been found in relation to peer support. The aim of the present systematic review and meta-ethnography is to explore the qualitative evidence on the experience of breast cancer survivors in peer support. A systematic search of the literature was conducted until June 2023, and a meta-ethnographic approach was used to synthesize the included papers. Eleven articles were included, collecting the experience of 345 participants. The following four core areas involved in peer support implementation were identified from the synthesis: Peer support can create understanding and a mutual therapeutic and emotional connection; peer support can facilitate an educational and supportive patient-centered journey ; peer support should monitor group members for unpleasant emotional experiences; peer support should have professional supervision of recruitment and Derek Clougher and Laura Ciria-Suarez contributed equally to this work.
... The tiered intervention has four levels, starting with screening and monitoring of psychosocial needs and offering more intensive interventions as patients need them, and the last level is group psychotherapy. This has shown promising early results in breast cancer (Ciria-Suarez et al., 2022;Medina et al., 2022) and the potential to address the psychosocial needs in lung cancer (Graves et al., 2007). It is anticipated that a stepped, tailored, psychosocial eHealth intervention based on this model will detect distress in patients with lung cancer quickly and facilitate the provision of personalized solutions through psychological counseling, health literacy, and social support in the community. ...
... In addition to reaching more patients, the proposed eHealth ecosystem should contribute to improved patient empowerment, health literacy, and involvement in actions designed to improve health. By promoting greater access, this program will also promote equity (Ciria-Suarez et al., 2022) during the process of improving QoL. ...
Full-text available
Background: Receiving a diagnosis of lung cancer is an emotional event, not least because it is usually diagnosed at advanced stages with limited life expectancy. Although evidence-based educational, emotional, and social interventions exist, they reach few patients and usually when it is too late. Objective: This project will be carried out in a comprehensive center for cancer care and health research, aiming to study the efficacy, costs, and utility of an eHealth ecosystem to meet the psychosocial needs of patients with advanced lung cancer. Method: We will enroll 76 patients with advanced lung cancer into an eHealth ecosystem of stepped and personalized psychosocial care for 9 months. These patients will be compared with another 76 receiving usual care in a non-inferiority randomized controlled trial. The following main outcomes will be measured every 3 months: emotional distress, spirituality, demoralization, quality of life, and medication adherence. Secondary outcomes will include symptomatology, health education, cost-utility analyses, usability and satisfaction with the platform, and time to detect emotional needs and provide care. Baseline differences between groups will be measured with the Student t-test or chi-square test, as appropriate. We will then compare the main outcomes between groups over time using multilevel linear models, report effect sizes (Hedges' g), and assess non-inferiority. The cost-utility of both interventions will be considered in terms of quality adjusted life years and quality of life given the costs of providing each treatment. Discussion: This randomized controlled trial should provide new evidence on the efficacy and cost-utility of an eHealth ecosystem to deliver personalized and timely psychosocial care to patients with advanced lung cancer. Trial registration: ID "NCT05497973".
Full-text available
PURPOSE Ongoing supportive care using electronic health (eHealth) interventions has the potential to provide remote support and improve health outcomes for patients with breast cancer. This study aimed to evaluate the effectiveness of eHealth interventions on patient-reported outcomes (quality of life [QOL], self-efficacy, and mental or physical health) for patients during and after breast cancer treatment and patient-reported experience measures (acceptability and engagement). METHODS Systematic review with meta-analyses (random-effects model) of randomized controlled trials was conducted following Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Nine databases were searched using a prespecified search strategy. Patient-directed eHealth interventions for adult patients during or after active breast cancer treatment measuring QOL, self-efficacy, and mental (depressive, anxiety, and distress symptoms) or physical (physical activity, nutrition, and fatigue) health outcomes were included. Data from eligible full-text articles were independently extracted by six observers. RESULTS Thirty-two unique studies (4,790 patients) were included. All were health self-management interventions, and most were multicomponent (videos, forums, and electronic reminder systems) websites. Meta-analyses revealed a significant effect of eHealth interventions on QOL (standardized mean difference [SMD], 0.20 [95% CI, 0.03 to 0.36]), self-efficacy (SMD, 0.45 [95% CI, 0.24 to 0.65]), distress (SMD, –0.41 [95% CI,–0.63 to –0.20]), and fatigue (SMD, –0.37 [95% CI, –0.61 to –0.13]). Twenty-five studies (78.1%) measured patient-reported experience measures. Acceptability (n = 9) was high, with high ratings for satisfaction (range, 71%-100%), usefulness (range, 71%-95%), and ease-of-use (range, 73%-92%). Engagement (n = 25) decreased over time, but disease-focused information and interactive support were most engaging. CONCLUSION eHealth interventions may provide an acceptable and effective strategy for improving QOL, distress, self-efficacy, and fatigue among patients with breast cancer.
Full-text available
Background/Objective Environmental factors such as psychosocial stress have demonstrated to have an impact on the breast cancer (BC) course. This study aims to explore the impact of psychotherapy and stressful life events (SLE) on BC survivors’ illness trajectories. Method 68 women with BC underwent Positive Psychotherapy or Cognitive-Behavioral Stress Management and 37 patients were included as a control group. The effects of distress reduction and SLE on their 5-year recurrence were investigated. Additional analyses examined the effect of receiving vs. not receiving psychotherapy and of the type of therapy on survival and disease-free interval, DFI. Results A one-point decrease of the Hospital Anxiety and Depression Scale (HADS) after psychotherapy predicted a lower risk of 5-year recurrence, OR = 0.84, p = .037, 95% CI = 0.71-0.99). Also, a one point-increase in the number threatening SLE (OR = 1.92; p = .028, 95% CI = 1.07-3.43) was related to higher 5-year recurrence. Conclusions The findings highlight the necessity of studying not only a given situation (i.e., psychotherapy, SLE) but its specific impact on individuals.
Full-text available
Psychosocial interventions prevent emotional distress and facilitate adaptation in breast cancer (BC). However, conventional care presents accessibility barriers that eHealth has the potential to overcome. ICOnnecta’t is a stepped digital ecosystem designed to build wellbeing and reduce psychosocial risks during the cancer journey through a European-funded project. Women recently diagnosed with BC in a comprehensive cancer center were offered the ecosystem. ICOnnecta’t consists of four care levels, provided according to users’ distress: screening and monitoring, psychoeducation campus, peer-support community, and online-group psychotherapy. Descriptive analyses were conducted to assess the platform’s implementation, while multilevel linear models were used to study users’ psychosocial course after diagnosis. ICOnnecta’t showed acceptance, use and attrition rates of 57.62, 74.60, and 29.66%, respectively. Up to 76.19% of users reported being satisfied with the platform and 75.95% informed that it was easy to use. A total of 443 patients’ needs were detected and responsively managed, leading 94.33% of users to remain in the preventive steps. In general, strong social support led to a better psychosocial course. ICOnnecta’t has been successfully implemented. The results showed that it supported the development of a digital relation with healthcare services and opened new early support pathways.
Full-text available
The effectiveness of a cancer screening program relies on its adherence rate. Health literacy (HL) has been investigated among the factors that could influence such participation, but the findings are not always consistent. The aim of this meta-analysis was to summarize the evidence between having an adequate level of HL (AHL) and adherence to cancer screening programs. PubMed, Scopus, and Web of Science were searched. Cross-sectional studies, conducted in any country, that provided raw data, unadjusted or adjusted odds ratio (OR) on the associations of interest were included. The quality of the studies was assessed with the Newcastle-Ottawa Scale. Inverse-variance random effects methods were used to produce pooled ORs and their associated confidence interval (CI) stratified by time interval (e.g., undergoing screening in the last period, or at least once during lifetime) for each cancer type, considering unadjusted and adjusted estimates separately. A sensitivity analysis was performed for those studies providing more estimates. Overall, 15 articles of average-to-good quality were pooled. We found a significant association between AHL and higher screening participation for breast, cervical and colorectal cancer, independently of other factors, both overall (N = 7, aOR = 1.73; 95% CI: 1.27–2.36; N = 3, aOR = 1.64; 95% CI: 1.30–2.09; and N = 5, aOR = 1.25, 95% CI: 1.12–1.39, respectively) and in most time-stratified analyses. The sensitivity analyses confirmed these results. Health literacy seems to be critical for an effective cancer prevention. Given the high prevalence of illiterate people across the world, a long-term action plan is needed.
Full-text available
Background Breast cancer is one of the most prevalent diseases in women. Prevention and treatments have lowered mortality; nevertheless, the impact of the diagnosis and treatment continue to impact all aspects of patients’ lives (physical, emotional, cognitive, social, and spiritual). Objective This study seeks to explore the experiences of the different stages women with breast cancer go through by means of a patient journey. Methods This is a qualitative study in which 21 women with breast cancer or survivors were interviewed. Participants were recruited at 9 large hospitals in Spain and intentional sampling methods were applied. Data were collected using a semi-structured interview that was elaborated with the help of medical oncologists, nurses, and psycho-oncologists. Data were processed by adopting a thematic analysis approach. Results The diagnosis and treatment of breast cancer entails a radical change in patients’ day-to-day that linger in the mid-term. Seven stages have been defined that correspond to the different medical processes: diagnosis/unmasking stage, surgery/cleaning out, chemotherapy/loss of identity, radiotherapy/transition to normality, follow-up care/the “new” day-to-day, relapse/starting over, and metastatic/time-limited chronic breast cancer. The most relevant aspects of each are highlighted, as are the various cross-sectional aspects that manifest throughout the entire patient journey. Conclusions Comprehending patients’ experiences in depth facilitates the detection of situations of risk and helps to identify key moments when more precise information should be offered. Similarly, preparing the women for the process they must confront and for the sequelae of medical treatments would contribute to decreasing their uncertainty and concern, and to improving their quality-of-life.
Full-text available
Low socioeconomic status (SES) is associated with a higher prevalence of unhealthy lifestyles compared to a high SES. Health interventions that promote a healthy lifestyle, like eHealth solutions, face limited adoption in low SES groups. To improve the adoption of eHealth interventions, their alignment with the target group's attitudes is crucial. This study investigated the attitudes of people with a low SES toward health, healthcare, and eHealth. We adopted a mixed-method community-based participatory research approach with 23 members of a community center in a low SES neighborhood in the city of Rotterdam, the Netherlands. We conducted a first set of interviews and analyzed these using a grounded theory approach resulting in a group of themes. These basic themes' representative value was validated and refined by an online questionnaire involving a different sample of 43 participants from multiple community centers in the same neighborhood. We executed three focus groups to validate and contextualize the results. We identified two general attitudes based on nine profiles toward health, healthcare, and eHealth. The first general attitude, optimistically engaged, embodied approximately half our sample and involved light-heartedness toward health, loyalty toward healthcare, and eagerness to adopt eHealth. The second general attitude, doubtfully disadvantaged, represented roughly a quarter of our sample and was related to feeling encumbered toward health, feeling disadvantaged within healthcare, and hesitance toward eHealth adoption. The resulting attitudes strengthen the knowledge of the motivation and behavior of people with low SES regarding their health. Our results indicate that negative health attitudes are not as evident as often claimed. Nevertheless, intervention developers should still be mindful of differentiating life situations, motivations, healthcare needs, and eHealth expectations. Based on our findings, we recommend eHealth should fit into the person's daily life, ensure personal communication, be perceived usable and useful, adapt its communication to literacy level and life situation, allow for meaningful self-monitoring and embody self-efficacy enhancing strategies.
Full-text available
Introduction: Innovative interventions are needed to address the growing burden of breast cancer globally, especially among vulnerable patient populations. Given the success of Community Health Workers (CHWs) in addressing communicable diseases and non-communicable diseases, this scoping review will investigate the roles and impacts of CHWs in breast cancer screening programs. This paper also seeks to determine the effectiveness and feasibility of these programs, with particular attention paid to differences between CHW-led interventions in low- and middle-income countries (LMICs) and high-income countries (HICs).Methods: A scoping review was performed using six databases with dates ranging from 1978 to 2019. Comprehensive definitions and search terms were established for 'Community Health Workers' and 'breast cancer screening', and studies were extracted using the World Bank definition of LMIC. Screening and data extraction were protocolized using multiple independent reviewers. Chi-square test of independence was used for statistical analysis of the incidence of themes in HICs and LMICs.Results: Of the 1,551 papers screened, 33 were included based on inclusion and exclusion criteria. Study locations included the United States (n=27), Bangladesh (n=1), Peru (n=1), Malawi (n=2), Rwanda (n=1), and South Africa (n=1). Three primary roles for CHWs in breast cancer screening were identified: education (n=30), direct assistance or performance of breast cancer screening (n=7), and navigational services (n=6). In these roles, CHWs improved rates of breast cancer screening (n=23) and overall community member knowledge (n=21). Two studies performed cost-analyses of CHW-led interventions.Conclusion: This review extends our understanding of CHW effectiveness to breast cancer screening. It illustrates how CHW involvement in screening programs can have a significant impact in LMICs and HICs, and highlights the three CHW roles of education, direct performance of screening, and navigational services that emerge as useful pillars around which governments and NGOs can design effective programs in this area.
Full-text available
Background Digitalization offers enormous potential in medicine. In the era of digitalization, the development of the use of digital, technical, and informal resources of breast cancer patients and factors influencing the degree of digitization of patients has been insufficiently researched. Objective The aim of this study was to assess the development of the use of digital technical and informal resources in a well-defined patient cohort. MethodsA longitudinal study on 513 breast cancer patients from 2012 to 2020 was conducted using a questionnaire that included the main aspects of the degree of digitalization, including digital device availability and use, stationary and mobile internet access and use, and communication and information seeking regarding breast cancer diagnosis and treatment. ResultsThe majority of patients (421/513, 82.1%) owned the technical resources to benefit from eHealth, used the internet to obtain information (292/509, 57.4%), and were willing to use new eHealth solutions (379/426, 89%). Two-thirds of the patients discussed information about their cancer on the internet with their doctor, one-third found additional treatment options on the internet, and 15.3% (44/287) of the patients stated that this had changed their cancer therapy. The degree of digitization is increasing yet still significantly depends on 3 factors: (1) age (whereas 100% [39/39] of the 70-year-old group used the internet), (2) education (internet use significantly depended on education, as only 51.8% [59/114] of patients with primary school education used the internet, but 82.4% [126/153] with middle school education and 90.3% [213/236] with high school education used the internet; P
The psychosocial problems associated with breast cancer have commanded more and more attention. Historical developments in medicine and society have altered the context in which breast cancer is diagnosed and treated. There are many new issues for researchers interested in quality-of-life issues surrounding breast cancer, and findings from past research must be evaluated carefully as many as one-quarter of women with breast cancer suffer marked psychological morbidity associated with diagnosis and treatment, though for many women psychological distress declines substantially within a year after treatment. Research regarding treatment options has shown that, for women who can be treated with breast-conserving surgery, less invasive surgery may result in less body image concern and better sexual functioning. Factors which appear to moderate the impact of breast cancer on women’s psychological health include coping styles, information preferences, social support, and pre-treatment psychiatric morbidity. Studies of psychosocial interventions suggest positive effects of social support, cognitive therapy, and supportive information. Future research efforts should be directed toward understanding special subgroups of women, and developing and testing behavioral interventions to improve psychosocial adjustment among women at high risk. Approaches which enhance patient-provider communication and patient involvement in care may be most beneficial. This chapter will try to fill in this vacuum by providing information on the psychosocial issues of breast cancer patients in India in particular.KeywordsPsychosocial aspectsImpacting factorsPsychosocial interventionsEffect of treatment options