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ICOnnecta't: Development and Initial Results of a Stepped Psychosocial eHealth Ecosystem to Facilitate Risk Assessment and Prevention of Early Emotional Distress in Breast Cancer Survivors' Journey

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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.
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Citation: Medina, J.C.; Flix-Valle, A.;
Rodríguez-Ortega, A.;
Hernández-Ribas, R.; Lleras de
Frutos, M.; Ochoa-Arnedo, C.
ICOnnecta’t: Development 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.
https://doi.org/10.3390/
cancers14040974
Academic Editors: Tommaso Susini
and Laura Papi
Received: 15 January 2022
Accepted: 14 February 2022
Published: 15 February 2022
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Attribution (CC BY) license (https://
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4.0/).
cancers
Article
ICOnnecta’t: Development and Initial Results of a Stepped
Psychosocial eHealth Ecosystem to Facilitate Risk Assessment
and Prevention of Early Emotional Distress in Breast Cancer
Survivors’ Journey
Joan C. Medina 1,2,3,† , Aida Flix-Valle 1,3,4,† , Ana Rodríguez-Ortega 1,3 , Rosa Hernández-Ribas 1,3,4,5,6,
María Lleras de Frutos 1and Cristian Ochoa-Arnedo 1,3,4,*
1
E-Health ICOnnecta’t and Psycho-Oncology Services, Institut Catalàd’Oncologia, L’Hospitalet de Llobregat,
08908 Barcelona, Spain; jmedina1@uoc.edu (J.C.M.); aflixv@iconcologia.net (A.F.-V.);
crodriguez@iconcologia.net (A.R.-O.); mrhernandez@bellvitgehospital.cat (R.H.-R.);
mlleras@iconcologia.net (M.L.d.F.)
2
Department of Psychology and Education Sciences, Universitat Oberta de Catalunya, 08908 Barcelona, Spain
3Department of Clinical Psychology and Psychobiology, Universitat de Barcelona, 08035 Barcelona, Spain
4Psycho-Oncology and Digital Health, Health Services Research in Cancer, Institut d’InvestigacióBiomèdica
de Bellvitge (IDIBELL), L’Hospitalet del Llobregat, 08908 Barcelona, Spain
5Department of Psychiatry, Hospital Universitari de Bellvitge, 08908 Barcelona, Spain
6Centro de Investigación Biomédica en Red Salud Mental (CIBERSAM), 28029 Madrid, Spain
*Correspondence: cochoa@iconcologia.net; Tel.: +34-93-2607800 (ext. 3821)
These authors contributed equally to this work.
Simple Summary:
In current clinical practice, between one third and a half of patients diagnosed with
cancer experience distress. Moreover, many of these psychosocial needs often remain unaddressed,
although effective interventions exist. Nowadays, eHealth solutions like ICOnnecta’t offer new tools
to overcome these limitations and improve access to treatment. This digital ecosystem has been
proved to be feasible to implement, reaching good acceptability, use, and satisfaction between users.
In addition, it allowed symptom monitoring in real time, facilitating preventive early interventions.
Overall, fostering social support appears as a key to facilitate a resilient response after diagnosis.
Abstract:
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.
Keywords:
breast cancer; cancer survivors; internet-based intervention; patient monitoring; patient
reported outcomes measures; psychosocial intervention; stepped-care
Cancers 2022,14, 974. https://doi.org/10.3390/cancers14040974 https://www.mdpi.com/journal/cancers
Cancers 2022,14, 974 2 of 13
1. Introduction
It is widely agreed that comprehensive oncological treatments should consider early
educational and psychosocial preventive care [
1
] addressed to assess individualized psy-
chosocial risk and reduce the impact of cancer on mental health [
2
,
3
]. However, only
a minority of survivors are screened and referred to receive psychosocial support and
treatment. Apart from the shortage of psycho-oncologists, other factors that have been
highlighted are long wait lists; time or mobility restrictions; or poor early detection [
1
]. This
situation is especially alarming given the availability of effective psychosocial interventions
in cancer [4].
Several actions have been proposed to improve accessibility to educational and psy-
chosocial care. One option is to restructure their contents and intensity, delivering services
progressively depending on the individualized needs detected. In this sense, recent studies
have introduced psychosocial stepped-care (SC) interventions in breast cancer (BC) [
5
].
Although these alternatives showed high acceptance (between 51.8–84%) and tend to be
effective, comparing their results is complicated. Every SC program has a different number
of levels, characteristics, professionals involved, and criteria to step up. In consequence,
they all show variable results [6].
Another possibility is to improve access to psychosocial attention through Information
and Communication Technologies (ICT), developing internet-based health (i.e., eHealth) in-
terventions. Indeed, they have already shown their capacity to overcome many limitations
expressed for conventional care [
7
]. In the last decade, several web and mobile platforms
for screening, monitoring, or managing symptoms have been created, with BC being a
common focus [
8
]. These tools have provided faster, easier, more intense, and convenient
risk assessment means to identify warning signs [
9
]. Also, they have proved to improve
self-management, to promote communication between patients and professionals, and to
develop peer support [
10
]. These functionalities, inherent to eHealth, are facilitators of
patients’ satisfaction and of improved acceptance and use rates [11].
According to the Unified Theory of Acceptance and Use of Technology, the acceptance
of eHealth interventions could be described as participants’ intention to use the digital
tool [
12
]. A recent systematic review showed that acceptance rates for mobile interventions
in cancer range between 40–57% [
10
]. Regarding use, its definition and calculation accu-
mulates less consensus. Even considering the several definitions of the concept, Cho and
colleagues [
10
] concluded that 70–92% of patients use eHealth solutions at least once. It
should be noted that interactive systems with professionals’ follow-up and direct commu-
nication between patient and practitioner are the ones with the highest use [
10
,
13
]. Another
relevant indicator is attrition, understood as the proportion of patients opting out from
treatment [
14
]. The eHealth research refers attrition rates between 13–60% depending on
intervention characteristics [1416].
Moving on to patient-reported outcomes, several meta-analyses and systematic re-
views in cancer survivors have shown that internet-based interventions could improve
emotional distress, quality of life (QoL), social support, and symptom self-management,
among other clinical variables [
11
,
17
19
]. However, it is generally recognized that more
solid evidence is needed.
Certainly, there is a good deal of research in cancer reporting proper feasibility and
clinical results for the independent use of SC interventions based on screening and mon-
itoring, and online psychosocial treatments. However, only very few research groups
have recently explored internet-based psychosocial SC interventions with special focus in
prevention, showing heterogeneous results regarding psychological outcomes [20].
Building upon the evidence exposed, a European consortium has created a stepped
eHealth ecosystem (https://oncommun.eu/; accessed on 14 January 2022), named ICOn-
necta’t, that has the purpose of integrating screening and monitoring risk assessment tools
with early stepped educational and psychosocial interventions for BC survivors during
the acute phase of their illness (from diagnosis to the end of the primary treatments).
ICOnnecta’t was developed because, when its first design started in 2017, we did not find
Cancers 2022,14, 974 3 of 13
any solution encompassing all these features and oriented to the specific population we
were interested in targeting. The project is part of a Horizon 2020 proposal, under the
name ONCOMMUN and funded by the European Institute of Innovation & Technology,
which pursued to deploy new digital tools in cancer care, featuring a strong commitment
to innovation.
The present study aimed to examine the feasibility of ICOnnecta’t in a sample of target
users during its first-year implementation. Secondary aims were to assess the psychosocial
status of patients and measure their evolution in the first months within the program.
2. Materials and Methods
2.1. Study Design
This pilot study follows a quasi-experimental single-group longitudinal design. The
inclusion of a control group was not considered at this stage, focused on feasibility. This
article has been written following the SPIRIT statement [21].
All procedures performed in this study involving human participants were in accor-
dance with the ethical standards of the institutional and research committee and with the
1964 Helsinki declaration and its later amendments. The protocol was approved by the
Clinical Research Ethics Committee of the leading institution on the 25th of October 2018
(PR343/18).
2.2. Participants
Participants were recruited from a public healthcare institution specialized in cancer,
located in north-eastern Spain. The first participant was recruited on the 15th of March 2019.
Therefore, to analyze first-year results, the data tranche until the 14th of March 2020 was
extracted. 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. Patients were excluded and referred to more specialized care in the
same hospital if they showed: (1) major depressive disorder, psychosis, or substance abuse;
(2) autolytic ideation; or (3) impaired cognition.
2.3. Intervention
ICOnnecta’t provides a SC intervention tailored to each patient throughout their cancer
experience. It consists of 4 levels of care ordered by psychosocial complexity (see Figure 1).
All patients enter the program at the first level and, whenever they step up, they retain
access to the previous levels [
22
,
23
]. The details of the levels and the step-up protocol are
outlined below:
-Level 1. Screening and monitoring symptoms and psychosocial risk assessment:
The first level is integrated in a central mobile application, named ICOnnecta’t, in which
patients may connect and communicate with their health professionals about their psy-
chosocial state and cancer symptoms, including treatments’ side effects. Thus, participants
are monitored within ICOnnecta’t by health professionals with a traffic light system devised
to this aim.
Symptom management. When participants report a symptom, a traffic light turns on.
Its colors correspond to the symptom severity classification set by the National Cancer
Institute in the guideline Common Terminology Criteria for Adverse Events (CTCAE) [
24
].
Green and yellow lights (CTCAE’s grade 1 and 2, respectively) mean low risk symptoms
(e.g., hair loss), and orange and red lights (CTCAE’s grade 3 and 4, respectively) mean high
risk (e.g., high fever). In all cases, participants receive tailored automatic health educational
feedback from the system according to their symptom severity (i.e., health recommenda-
tions for symptom management), while for red lights it also shows the emergency services
contact details. The health feedback messages were exhaustively developed by a working
group composed of nurses, oncologists, nutritionists, and pharmacists from the healthcare
institution. Apart from these automatic responses, the nurses of our team contact patients
afterwards.
Cancers 2022,14, 974 4 of 13
Psychosocial care. Patients are programmed psychometric questionnaires periodically
in this platform to screen and follow-up their psychosocial evolution. To step up to the
next intervention levels, the scores of an emotional thermometer (0–10 visual analogue
scale (VAS)) are considered. This thermometer is administered weekly, and its use has
been recommended in oncological settings to rapidly detect psychosocial morbidity [
25
],
with a sensitivity of 70% and specificity of 73% in southern Europe for a
6 cut-off [
26
].
These scores are interpreted as moderate emotional distress (i.e., orange light), while those
8 as high (i.e., red light). If any of these warnings is flagged for at least 2 weeks, the
Hospital Anxiety and Depression Scale (HADS) [
27
] is administered in addition to the
routine schedule of this instrument. This 2 week delay is intentionally introduced to give
the person time to explore the resources at each step. In case distress is confirmed (HADS
10) [
28
], a videoconference is scheduled to explore their needs and propose access to the
second level of care (i.e., Campus). If the patient agrees, specific contents within the Campus
are prescribed, tailoring the intervention to each of them. The same monitoring procedure
is followed at all four care levels, and whenever distress is identified in the routine quarterly
administrations of the HADS. Therefore, the patient journey in the ecosystem is always
guided and accompanied by the healthcare team.
-Level 2. Campus:
The second level of care offers a wide variety of educational
resources through a virtual campus, across several topics that have been found relevant for
cancer patients (e.g., lifestyle, mood, social relationships). All videos, posts, infographics,
and articles have been selected and co-created with BC patients and health professionals.
This level is available to patients in an unguided manner from the beginning to facilitate
access to reliable information. Differently, when they step up to the second level of care,
their Campus access is guided and therefore tailored to their needs.
-Level 3. Communities:
The social community hosted in the third level of ICOnnecta’t,
guided by health psychologists, is structured in 12 thematic areas mirroring the Campus
co-created topics. Its main objective is to foster peer emotional and social support and to
bridge the gap between users and their healthcare team, who stimulate debate and solve
specific doubts.
-Level 4. Group psychotherapy:
The most intensive and specialized intervention in
our digital ecosystem consists of group psychotherapy delivered through videoconfer-
ence. It comprises eight weekly 90 min sessions, and is based on a positive psychology
approach [
29
]. These sessions are led by a clinical psychologist specialized in psycho-
oncology.
ICOnnecta’t was developed through the cooperation between the hospital’s Informa-
tion Technology Unit and technological providers, after the signature of a legal agreement
to define data management and privacy standards compliant with the European General
Data Protection Regulation (GDPR; EC/2016/679). Patients’ sensitive personal data re-
mained hosted in the hospital’s secure servers in all cases, with communication means
point-to-point encrypted to maintain confidentiality and datasets anonymized.
Cancers 2022,14, 974 5 of 13
Cancers 2022, 14, x FOR PEER REVIEW 5 of 13
Figure 1. ICOnnecta’t stepped model.
2.4. Acceptance, Use, and Attrition of the eHealth Intervention
Acceptance. Following reference guidelines [10,13], in the present study the ac-
ceptance rate of the digital platform was operationalized as percentage of enrolled pa-
tients, that is, number of participants who accepted the eHealth program divided by num-
ber of eligible patients to whom the program was proposed.
Use. The participantsuse rate was calculated based on the number of participants
that reported their psychosocial status at least in one of the platform’s instruments divided
by the total accepting participants [10].
Attrition. The attrition rate was expressed as the number of participants who in-
formed on their willingness to stop using the platform after the initial acceptance divided
by the total accepting participants. In other words, participants who opted out from the
program [14].
2.5. Instruments
Distress. The HADS is a self-reported instrument to measure distress in individuals
with a physical illness [27]. It is composed by two subscales, anxiety and depression. The
Spanish validation in oncological patients proved high reliability (α = 0.82 for anxiety and
α = 0.84 for depression). The HADS was administered routinely every three months and
its overall score was considered the primary outcome, with scores 10 interpreted as mod-
erate and 16 as high distress [28].
Post-traumatic stress. The Post-traumatic Stress Disorder Checklist for DSM-5 (PCL-5)
is a self-report to measure post-traumatic symptoms [30]. It includes 20 items and has
shown good reliability (α = 0.94). The official Spanish version has not been published yet,
but it was provided by the United States National Center for Post-Traumatic Stress Disor-
der for the purpose of this study. The PCL-5 was administered every three months, with
scores 33 interpreted as moderate and 45 as high stress [31].
Post-traumatic growth. The Post-traumatic Growth Inventory (PTGI) is a self-reported
measure for growth experiences following traumatic events [32]. It features 21 items and
has been validated in Spain with an oncological sample, proving high reliability (α = 0.95).
The PTGI was administered every three months, with scores 46 interpreted as high
growth [33].
Quality of life. The EuroQoL-5D-3L (EQ-5D-3L) is a brief instrument to measure QoL
[34]. It covers five dimensions related to both physical and mental health. The Spanish
Figure 1. ICOnnecta’t stepped model.
2.4. Acceptance, Use, and Attrition of the eHealth Intervention
Acceptance. Following reference guidelines [
10
,
13
], in the present study the acceptance
rate of the digital platform was operationalized as percentage of enrolled patients, that is,
number of participants who accepted the eHealth program divided by number of eligible
patients to whom the program was proposed.
Use. The participants’ use rate was calculated based on the number of participants
that reported their psychosocial status at least in one of the platform’s instruments divided
by the total accepting participants [10].
Attrition. The attrition rate was expressed as the number of participants who informed
on their willingness to stop using the platform after the initial acceptance divided by
the total accepting participants. In other words, participants who opted out from the
program [14].
2.5. Instruments
Distress. The HADS is a self-reported instrument to measure distress in individuals
with a physical illness [
27
]. It is composed by two subscales, anxiety and depression. The
Spanish validation in oncological patients proved high reliability (
α
= 0.82 for anxiety
and
α
= 0.84 for depression). The HADS was administered routinely every three months
and its overall score was considered the primary outcome, with scores 10 interpreted as
moderate and 16 as high distress [28].
Post-traumatic stress. The Post-traumatic Stress Disorder Checklist for DSM-5 (PCL-5)
is a self-report to measure post-traumatic symptoms [
30
]. It includes 20 items and has
shown good reliability (
α
= 0.94). The official Spanish version has not been published yet,
but it was provided by the United States National Center for Post-Traumatic Stress Disorder
for the purpose of this study. The PCL-5 was administered every three months, with scores
33 interpreted as moderate and 45 as high stress [31].
Post-traumatic growth. The Post-traumatic Growth Inventory (PTGI) is a self-reported
measure for growth experiences following traumatic events [
32
]. It features 21 items and
has been validated in Spain with an oncological sample, proving high reliability (
α= 0.95
).
The PTGI was administered every three months, with scores
46 interpreted as high
growth [33].
Cancers 2022,14, 974 6 of 13
Quality of life. The EuroQoL-5D-3L (EQ-5D-3L) is a brief instrument to measure
QoL [
34
]. It covers five dimensions related to both physical and mental health. The Spanish
version has shown appropriate convergent and construct validity, and was administered
every three months in our sample with time trade-off scores
90 interpreted as high
QoL [35].
Social support. Participants’ perceived social support was measured with the Medical
Outcomes Study—Social Support Survey (MOS-SSS) [
36
]. The Spanish version has been
validated with cancer patients and it showed excellent reliability (
α
= 0.94). No cut-off
scores are applicable to this instrument.
Satisfaction and usability. Satisfaction with the digital ecosystem and its perceived
usability were assessed three weeks after registration with a 0–10 VAS. No clear cut-offs
have been found in the literature, we interpreted their scores
5 as some and
8 as high
satisfaction/usability.
Sociodemographic and clinical data were collected from patients’ clinical records after
obtaining their informed consent.
2.6. Procedure
All new patients treated in the BC unit of the recruiting institution were informed of
the study by their nurses. Those showing interest met with an ICOnnecta’t team member to
discuss about the program, check eligibility criteria, and sign the informed consent. Then,
participants were guided to install the digital ecosystem on their devices and were offered
a basic training to use it. Thereafter, the screening and monitoring of the participants
(i.e., level 1) could start. Participants who accepted the enrollment but finally did not
make use of the eHealth platform received usual face-to-face care in the health institution
(i.e., medical and nursing follow-up visits, referral to psychological care only if distress is
inferred by health professionals).
2.7. Statistical Analyses
The Rsoftware was used [
37
]. First, descriptive analyses were conducted to appraise
the implementation of the digital ecosystem, covering its acceptance, use and attrition rates,
as well as user satisfaction and usability. Differences between participants who used the
system and those who did not were also estimated with Chi-squared and Student’s ttests
as appropriate. Then, the platform’s functioning was assessed according to the number of
health education and psychosocial needs detected, and the time needed to provide care, in
addition to users’ distribution across its SC program.
Finally, we were interested in understanding patients’ psychosocial course imme-
diately after diagnosis. Therefore, we conducted independent multilevel linear models
(MLM) for all outcomes of interest (i.e., HADS, PCL-5, PTGI, and EQ-5D-3L). For each
model, we included only those participants who provided at least one score during the
first month immediately after inclusion and analyzed their evolution in the 3 months
afterwards.
Models were built parsimoniously and considered maximum likelihood as estimation
method. We always started by the simplest meaningful model with fixed intercept and time,
and increased complexity progressively in nested models supported by likelihood ratio
tests (LRT). In these subsequent models, we added social support at baseline and sociode-
mographic variables (i.e., age, marital status, education, and work status) as predictors. We
were especially interested in social support since its role in psychological adjustment after
diagnosis has been repeatedly highlighted [
38
,
39
]. Results reported herein are those for
the best-fitting model for each outcome. The covariance structures that best fitted our data
were first-order autoregressive.
Cancers 2022,14, 974 7 of 13
3. Results
3.1. Participant Characteristics
Up to 328 patients were referred to ICOnnecta’t from the BC unit of the recruiting
institution in the time frame of the study (i.e., one year). Among these, 189 patients were
finally enrolled, which entails an acceptance rate of 57.62%. Moreover, 141 participants
completed at least one of the scheduled instruments, which represents a use rate of 74.60%.
The other 48 participants (25.40%) did not make use of the platform and no outcome data
could be extracted from them. In turn, the attrition among users was of 4.26% (n= 6). All
six participants lost interest in the ecosystem. Added together non-users and those users
who opted out, global attrition can be established at 29.66%. The participants’ flowchart
can be seen in Figure 2.
Cancers 2022, 14, x FOR PEER REVIEW 7 of 13
finally enrolled, which entails an acceptance rate of 57.62%. Moreover, 141 participants
completed at least one of the scheduled instruments, which represents a use rate of
74.60%. The other 48 participants (25.40%) did not make use of the platform and no out-
come data could be extracted from them. In turn, the attrition among users was of 4.26%
(n = 6). All six participants lost interest in the ecosystem. Added together non-users and
those users who opted out, global attrition can be established at 29.66%. The participants
flowchart can be seen in Figure 2.
Figure 2. Participants’ flowchart.
Finally, the average satisfaction level with the platform among users was 6.22 (SD =
3.17), although only 63 participants answered this instrument. Up to 76.19% (n = 48) re-
ported being satisfied, with 41.27% (n = 26) specifically very satisfied. The mean platform
usability perceived by users was 7.09 (SD = 3.77), estimated with 79 respondents. For
75.95% (n = 60), the ecosystem was easy to use. Particularly, most of them (68.35%, n = 54)
reported it as very usable.
Participantsmain sociodemographic and clinical characteristics are shown in Table
1. No significant differences existed between users and non-users. However, it can be no-
ticed that the former were slightly younger and more educated.
Table 1. Demographic and clinical characteristics of users and non-users.
Users (n = 141)
Non-Users (n = 48)
t
p
Age M (SD)
52.35 (8.57)
55.15 (9.55)
1.90
0.059
Marital status n (%)
0.929
Single
9 (6.38)
2 (4.17)
Married/partnered
101 (71.63)
33 (68.75)
Divorced/separated
6 (4.26)
3 (6.25)
Widowed
2 (1.42)
1 (2.08)
Unknown
23 (16.31)
9 (18.75)
Education n (%)
0.063
Primary or no studies
5 (3.55)
2 (4.17)
Secondary
17 (12.06)
3 (6.25)
Tertiary
43 (30.50)
7 (14.58)
Unknown
76 (53.90)
36 (75.00)
Figure 2. Participants’ flowchart.
Finally, the average satisfaction level with the platform among users was 6.22
(SD = 3.17)
,
although only 63 participants answered this instrument. Up to 76.19% (n= 48) reported
being satisfied, with 41.27% (n= 26) specifically very satisfied. The mean platform usability
perceived by users was 7.09 (SD = 3.77), estimated with 79 respondents. For 75.95%
(n= 60)
,
the ecosystem was easy to use. Particularly, most of them (68.35%, n= 54) reported it as
very usable.
Participants’ main sociodemographic and clinical characteristics are shown in Table 1.
No significant differences existed between users and non-users. However, it can be noticed
that the former were slightly younger and more educated.
Table 1. Demographic and clinical characteristics of users and non-users.
Users (n= 141) Non-Users (n= 48) tX2p
Age M (SD) 52.35 (8.57) 55.15 (9.55) 1.90 0.059
Marital status n(%) 0.87 0.929
Single 9 (6.38) 2 (4.17)
Married/partnered 101 (71.63) 33 (68.75)
Divorced/separated 6 (4.26) 3 (6.25)
Widowed 2 (1.42) 1 (2.08)
Unknown 23 (16.31) 9 (18.75)
Education n(%) 7.30 0.063
Cancers 2022,14, 974 8 of 13
Table 1. Cont.
Users (n= 141) Non-Users (n= 48) tX2p
Primary or no studies 5 (3.55) 2 (4.17)
Secondary 17 (12.06) 3 (6.25)
Tertiary 43 (30.50) 7 (14.58)
Unknown 76 (53.90) 36 (75.00)
Work status n(%) 5.83 0.323
Active 54 (38.30) 12 (25.00)
Passive 13 (9.22) 6 (12.50)
Occupational disability 4 (2.84) 3 (6.25)
Work leave 21 (14.89) 5 (10.42)
Retired 9 (6.38) 6 (12.50)
Unknown 40 (28.37) 16 (33.33)
Cancer stage n(%) 3.77 0.438
0 16 (11.35) 3 (6.25)
I 53 (37.59) 22 (45.83)
II 52 (36.88) 15 (31.25)
III 15 (10.64) 4 (8.33)
IV 5 (3.55) 4 (8.33)
3.2. Symptom and Psychosocial Management
During this first year, 150 symptoms requiring attention (i.e., orange and red lights)
were detected from 61 participants. The average time elapsed from patients’ report and
professionals’ first response was 2.05 days (SD = 4.14). In turn, up to 293 psychosocial
warnings (i.e., orange and red lights) were identified from 71 individuals, with an average
of 5.91 days (SD = 7.83) from patients’ report and initial support provided by psychologists
in the team.
Most of these needs could be solved after this initial care, with only 43 symptoms
and 48 psychosocial needs requiring further attention. These contacts were conducted on
average 0.12 days (SD = 0.6) after the first response in case of symptoms, and 7.15 days
(SD = 11.1) for psychosocial warnings. This last estimation was extended by the two-week
interval set prior to decide whether to refer patients to higher levels of care.
Indeed, as for the escalation rates of the digital ecosystem, up to 102 (72.34%) of the
141 participants did not require further intervention beyond the first level of ICOnnecta’t.
For the remaining 39 individuals (27.66%), persistent distress was detected and were given
access to the second level of care (Campus). Then, 15 (10.64%) continued experiencing
distress at this level and were referred to the third (Communities) step. Finally, eight (5.67%)
reached the fourth and most intensive level (group psychotherapy).
3.3. Users’ Psychosocial Course in ICOnnecta’t after Diagnosis
Up to 14.74% of participants were found high and 31.58% moderate distress in the
HADS, whereas 13.33% scored high and 10.67% moderate stress in the PCL-5. On the
contrary, 43.48% of participants already showed high growth in the PTGI, despite 57.28%
scored below the QoL cut-off score in the EQ-5D-3L. Finally, participants reported strong so-
cial support in the MOS-SSS, with an average exceeding by ten points the mean estimations
reported in the literature [
40
,
41
]. Mean scores obtained by participants in all instruments
can be seen in Table 2.
The MLM results for the HADS (n= 95) showed significant variance in its intercepts
across participants (
χ2
(1) = 24.85, p< 0.001), and included time and social support as fixed
predictors. Time did not yield a significant effect (b=
0.012, p= 0.077, 95% CI =
0.025
to 0.001), but social support did (b=
0.251, p< 0.001, 95% CI =
0.334 to
0.167), with
lower scores in the HADS associated with higher support.
Cancers 2022,14, 974 9 of 13
Table 2. Participants’ mean scores and standard deviations after diagnosis.
Mean SD
HADS 9.89 6.52
PCL-5 24.6 15.6
PTGI 37.8 23.9
EQ-5D-3L 0.82 0.22
MOS-SSS 81.4 12.1
HADS: Hospital Anxiety and Depression Scale; PCL-5: Post-traumatic Stress Disorder Checklist for DSM-5;
PTGI: Post-traumatic Growth Inventory; EQ-5D-3L: EuroQoL-5D-3L; MOS-SSS: Medical Outcomes Study—Social
Support Survey.
For the PCL-5, the MLM (n= 75) showed again significant variance in participants’
intercepts (
χ2
(1) = 52.54, p< 0.001), and included time and social support as fixed. Time
was not significant (b= 0.017, p= 0.462, 95% CI =
0.028 to 0.061), but social support was
(b=
0.539, p< 0.001, 95% CI =
0.813 to
0.265), as high scores predicted lower levels in
the PCL-5.
Moving on to the PTGI model (n= 46), intercepts varied across participants
(χ2(1) = 8.59
,
p= 0.003) and included time and social support as fixed predictors. Like in the previous
models, time did not prove to be significant (b= 0.083, p= 0.265, 95% CI =
0.068 to 0.234).
For the PTGI, social support was not either (b= -0.146, p= 0.704, 95% CI =
0.896 to 0.604).
Finally, in the EQ-5D-3L model (n= 103), intercepts did not show significant variance
χ2
(1) = 1.46, p= 0.228), so it included fixed intercept and time, which again, was not a
significant predictor of EQ-5D-3L scores (b=0.001, p= 0.127, 95% CI = 0.001 to 0.001).
4. Discussion
This study sought to report, for the first time, the implementation and initial results
of ICOnnecta’t, an eHealth ecosystem designed to deliver preventive education and psy-
chosocial care in cancer based in individualized risk assessment. The acceptance and
use rates were within the expected ranges, with around half of the patients accepting the
platform and, among these, three quarters actually using it [
10
]. In our sample, there was a
tendency in users to be slightly younger and to have higher studies than non-users, but
the non-significance of these results strengthen the idea that sociodemographic barriers for
eHealth use are vanishing [42].
In turn, attrition was relatively low and within the expected ranges, which is a strength
of the program, but needs to be tested with more diagnoses, since attrition in BC tends to
be particularly low [
15
]. In addition, most users reported high levels of both satisfaction
with, and usability of, the platform. Although not all of them provided their views on these
matters, ICOnnecta’t seems to tackle some of the main limitations found among cancer
survivors’ experience with telehealth through personalization, trusting relationships, and
patient autonomy favored by symptom self-management [
11
]. Indeed, other recent eHealth
interventions have obtained similar results in terms of satisfaction and ease of use [9].
Regarding the detection of needs and the provision of appropriate care, the digital
ecosystem proved to facilitate patients’ follow-up as it has already been reported for
eHealth [
8
] and SC interventions [
6
]. An average of two days for health education, and
under six for psychosocial warnings, were established as waiting-times to be provided
with a professional first response. In addition, this fast management was also efficient since
most needs could be solved with a quick initial reply. This finding needs to be merged
with the fact that 94.33% of participants remained within the (preventive) first three levels
of the SC program. Therefore, ICOnnecta’t may be a valuable complement, and even an
alternative, to usual care. It is relevant to highlight in this regard that this digital ecosystem
does not seek to replace healthcare professionals, but to provide them with more responsive
means to deliver care. Indeed, the program pursues to foster the collaboration within the
patient-professional dyad, which articulates healthcare decisions in all cases.
The prevalence of distress found among patients after diagnosis was aligned with
the literature [
38
] with moderate rather than high scores. Similarly, the low proportion
Cancers 2022,14, 974 10 of 13
of stress was also coincident with extant research for BC [
43
], and the same applied for
the moderate levels of posttraumatic growth [
44
]. Regarding QoL, results proved most
patients to score below the population cut-off point at baseline [
35
], findings that must be
interpreted considering that participants were starting their primary oncological treatments.
This condition impacts on several areas covered by the EQ-5D-3L, such as the feeling of
pain and the performance of daily routines [45].
Finally, strong social support was perceived by most participants. This finding is
of interest given its stress-buffering role [
39
,
45
]. Indeed, in our longitudinal analyses we
consistently found stronger social support to be associated with better results, underlining
the relevance of this variable. Fostering fulfilling and supportive relationships seems to
be a key factor for attaining a better course and, if assessed from the beginning, it may
anticipate psychosocial trajectories during treatments. This finding confirms that the peer
support community featured in ICOnnecta’t could be one of its main assets.
It is true that, unlike other similar studies [
6
,
20
], we have not found significant im-
provements with time. However, these previous proposals often included only participants
who were already experiencing distress, while we offered the platform to all new patients
with a health promotion objective. The fact that the majority of users showed a resilient
response to cancer makes significant improvements unlikely to occur, as they are typically
found among patients with a poorer mental health status at baseline [
6
]. Consequently,
in our sample a steady trend means most users remain free from clinical symptoms, even
when active treatments are still in play [39,45].
Apart from the small sample size and the short-term longitudinal data collected, the
present work has other limitations. Although this was a feasibility study, the absence of a
control group limits the interpretation of results. In addition, not all patients completed all
questionnaires, as they were reminded of the importance of doing so, but did not receive
any kind of pressure given the real-world nature of the project. Also, we could not extract
any data from the non-users who accepted to participate, but finally did not make use of
the platform, who could not be provided care through it either. These patients continued
to receive usual in-person care in the hospital, they attended their medical and nursing
periodic visits, but did not receive any psychosocial support unless the healthcare team
perceived distress during their appointments. However, since we could not measure any
outcome variable from them, no comparisons between the effect of ICOnnecta’t and usual
care could be made. The results of future randomized controlled studies are expected to
contribute to this line of research. Similarly, although both patients and practitioners were
involved in the design of the eHealth solution, we focused on the former at this stage and
did not administer any instrument to the professionals involved in its implementation.
In the future, it may be relevant to study their insights as well, both in terms of patients’
progress and regarding their own satisfaction with, and usability assigned to the system.
Finally, although we found no sociodemographic differences between users and non-users,
we must acknowledge that the 25 patients reported in Figure 2to reject participation due to
no internet access might have changed these results. However, since they represented only
7.62% of all individuals who were offered the ecosystem, such influence is still mild.
5. Conclusions
In conclusion, this study supports the use of eHealth in BC healthcare, with preliminary
results suggesting the absence of sociodemographic barriers for their acceptance and
use. ICOnnecta’t allowed professionals to timely monitor and manage needs throughout
patients’ journey, intervening before the clinical course of physical and psychological
symptoms worsen. This feature has the capacity to prevent suffering in patients, also
saving costs for health systems. While many users show a resilient response to their
diagnosis, many others do not. Consequently, it will be clinically relevant to refine the
individualized risk assessment to identify and model differential trajectories among the
whole sample in the future, in order to feed more precise and personalized treatments
and to better estimate effectiveness and cost-utility [
22
]. Future studies will also aim to
Cancers 2022,14, 974 11 of 13
replicate these results and to extend ICOnnecta’t to other diagnoses and countries, making
its services available to more patients who may benefit from them. Indeed, preliminary
versions of this digital ecosystem have already been developed in Portuguese and Polish,
following a careful adaptation process to each cultural background. We hope this work will
lead to increase the availability of comprehensive cancer care programs in more regions.
Author Contributions:
Conceptualization, C.O.-A.; Data curation, J.C.M. and A.F.-V.; Formal anal-
ysis, J.C.M.; Funding acquisition, A.F.-V. and C.O.-A.; Investigation, J.C.M., A.F.-V., A.R.-O., R.H.-
R., M.L.d.F. and C.O.-A.; Methodology, J.C.M. and C.O.-A.; Project administration, J.C.M., A.F.-V.
and C.O.-A.; Resources, C.O.-A.; Supervision, C.O.-A.; Writing—original draft, J.C.M. and A.F.-V.;
Writing—review and editing, A.R.-O., R.H.-R., M.L.d.F. 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’. Fi-
nally, the Generalitat de Catalunya through the consolidated research group “Research in health
services in cancer” (2017SGR00735) has also partially funded this research. We thank CERCA Pro-
gramme/Generalitat de Catalunya for institutional support.
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 CATALÀD’ONCOLOGIA on the 25th of October 2018 (PR343/18).
Informed Consent Statement:
Informed consent was obtained from all subjects involved in the
study.
Data Availability Statement:
The anonymized datasets of this study may be obtained from the
corresponding author upon reasonable request.
Acknowledgments:
Authors want to express their gratitude to all BC patients who generously
accepted to participate in this project.
Conflicts of Interest: The authors declare no conflict of interest.
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... 28 A recent preliminary study has shown its feasibility. 26 In this secondary analysis we aim to: (a) compare the development of therapeutic alliance between ICOnnecta't and psychosocial treatment as usual (PTAU) from the perspectives of breast cancer patients and their therapists; (b) analyse the level of agreement between patients' and therapists' therapeutic alliance ratings for both treatment conditions; (c) explore potential variables associated with therapeutic alliance during ICOnnecta't intervention, in particular age, platform usability and satisfaction, and type and amount of patient-therapist communication. We hypothesised that: (a) there will not be significant differences in the development of therapeutic alliance between ICOnnecta't and PTAU from patients' and therapists' perspectives; (b) therapists will report lower levels of therapeutic alliance compared with patients in both interventions; (c) younger age, high usability and satisfaction, greater communication and video consultations will be positively associated with therapeutic alliance scores for both patients and therapists. ...
... Extensive methodological and intervention protocols were previously published. 26,28 All procedures performed in this study involving human participants were conducted in accordance with the ethical standards of the institutional and research committee and with the Helsinki Declaration of 1975, as revised in 2013. The protocol was approved by the Clinical Research Ethics Committee of the participant institutions on 7 November 2019 (PR289/19). ...
... The literature does not provide a clear cutoff, so we considered scores ≥5 as indicating some level of satisfaction, while scores ≥8 were considered high. 26 Communication type. Experimental group patients' communications were categorised based on the intervention format employed: (a) unanswered asynchronous communication, for patients who received and read the therapist text messages but never answered; (b) asynchronous communication, for patients who interacted with therapist through text messages; and (c) mixed communication, for patients who interacted through text messages and video consultations. ...
Article
Full-text available
Background Action mechanisms of therapeutic alliance in stepped and digital interventions remain unclear. Aims (a) To compare the development of therapeutic alliance between psychosocial treatment as usual (PTAU) and a stepped digital intervention designed to prevent distress in cancer patients; (b) to analyse the level of agreement between patients’ and therapists’ therapeutic alliance ratings; and (c) to explore variables associated with therapeutic alliance in the digital intervention. Method A multicentre randomised controlled trial with 184 newly diagnosed breast cancer women was conducted. Patients were assigned to digital intervention or PTAU. Therapeutic alliance was assessed at 3, 6 and 12 months after inclusion using the working alliance inventory for patients and therapists. Age, usability (system usability scale), satisfaction (visual analogue scale), type and amount of patient–therapist communication were analysed as associated variables. Results Patients and therapists established high therapeutic alliance in the digital intervention, although significantly lower compared with PTAU. The development of patients’ therapeutic alliance did not differ between interventions, unlike that of the therapists. No agreement was found between patients’ and therapists’ therapeutic alliance ratings. Patients’ therapeutic alliance was associated with usability and satisfaction with app, whereas therapists’ therapeutic alliance was associated with satisfaction with monitoring platform. Conclusions A stepped digital intervention for cancer patients could develop and maintain strong therapeutic alliance. Neither the type nor amount of communication affected patients’ therapeutic alliance, suggesting that flexible and available digital communication fosters a sense of care and connection. The association between usability and satisfaction with digital tools highlights their importance as key therapeutic alliance components in digital settings.
... The number of papers was whittled down to 71 after the titles and abstracts were reviewed. Finally, a total of 14 studies that met the inclusion criteria remained [34][35][36][37][38][39][40][41][42][43][44][45][46][47]. The literature screening process is shown in Fig. 1. ...
... Studies were published between 2017 and 2023, across nine countries-Switzerland [34], America [35,43,45], Norway [36], Germany [37], France [38], Australia [39,40,46], Spain [41], Sweden [42,47], and the Netherlands [44]. Eight studies [34, 36-38, 43-45, 47] were randomized controlled trials, 3 studies [35,40,41] were feasibility studies, 2 studies [39,46] were mixed-methods studies, and only 1 study [42] was a qualitative study. ...
... Studies were published between 2017 and 2023, across nine countries-Switzerland [34], America [35,43,45], Norway [36], Germany [37], France [38], Australia [39,40,46], Spain [41], Sweden [42,47], and the Netherlands [44]. Eight studies [34, 36-38, 43-45, 47] were randomized controlled trials, 3 studies [35,40,41] were feasibility studies, 2 studies [39,46] were mixed-methods studies, and only 1 study [42] was a qualitative study. The basic characteristics of the included studies are shown in Table 1 and Table 2. ...
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Purpose To clarify the implementation steps, characteristics, effects, acceptability, and feasibility of the stepped care model (SCM) while also offering a resource for pertinent interventions in cancer care. Methods We searched the PubMed, Embase, CINAHL, Web of Science, the Cochrane Library, and PsycINFO databases from inception to October 22, 2023. Two key concepts were used: cancer and stepped care model. Two reviewers independently screened the articles and extracted data by repeatedly reading the abstracts and full texts. The included literature was analyzed according to the updated framework for scoping reviews proposed by the Joanna Briggs Institute (JBI). Results A total of 14 studies were included. Most of the reviewed SCMs comprised two steps: self-management interventions in the first step and cognitive-behavior interventions in the second step. Most often, interventions were delivered electronically. The main applications of SCM included providing psychological support, treating insomnia and relieving cancer-related fatigue. SCM was effective in improving multiple outcomes for cancer patients with feasibility and acceptability. Conclusions SCM has a promising future and is applicable to oncology care. Further research on facilitators and barriers to the application of this model in cancer care is needed to enhance patients’ quality of life.
... An interdisciplinary team approach and collaboration among departments are seen as making the referral and uptake easier for patients [74,[78][79][80]. A tiered or stepped approach to psychosocial referral and intervention is recommended as a more tailored response for patients [70,81,82] as well as a cost-efficient model [83]. Authors also identified the need for clearly stated role expectations and responsibilities for screening and follow-up, which are promoted by the leadership of the health facility [76,84]. ...
... Several articles emphasized the need for the on-going evaluation of a screening program and the benefit of having data stored electronically [57,78,79,81,87,96]. Data about program performance (e.g., screening rates, follow-up rates) [48,80,81] as well as levels of distress [93] contribute a basis for practice and for understanding where improvements can be made [46,61,70,89,91]. ...
... Several articles emphasized the need for the on-going evaluation of a screening program and the benefit of having data stored electronically [57,78,79,81,87,96]. Data about program performance (e.g., screening rates, follow-up rates) [48,80,81] as well as levels of distress [93] contribute a basis for practice and for understanding where improvements can be made [46,61,70,89,91]. These data can be utilized to identify gaps in service delivery, for decision making about new initiatives, or as the basis for policy design [21,53,93,96]. ...
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Purpose: Psychosocial care is an integral component of caring for individuals living with cancer. The identification of psychosocial distress has been acknowledged as a hallmark of quality cancer care, and screening for distress standards has been established in several countries. The purpose of this brief review is to highlight recent developments in screening for distress in oncology populations; to provide insight into significant trends in research and implementation; and to explore implications for oncology nursing practice. Methods: This paper reports a brief review of the literature from March 2021 to July 2024 on the topic of screening for distress in oncology. The literature was accessed through PubMed and reviewed by two authors. Trends in the topics presented were identified independently and then discussed to achieve consensus. Results: The search within the designated period produced 47 publications by authors in North America, Australasia, and Europe. Topic trends included the design and adaptation of tools for special populations, the use of technology, descriptions of programs, identification of benefits, challenges, and overcoming barriers to screening for distress. Conclusions: Screening for distress is endorsed as part of the provision of quality oncology care. Nurses have an important role in screening individuals at risk for developing psychosocial problems and acting to reduce the associated morbidity. By continuing to be informed and educated about the emerging developments in screening for distress, nurses can understand and overcome barriers to implementation.
... 25 In this context, information and communication technologies (ICTs) have emerged as a crucial component of eHealth, offering a viable solution to ensure cognitive care for patients with BC. 26,27 Leveraging eHealth can enhance the monitoring of warning signs, facilitate improved communication with healthcare professionals, 28 and provide clinical treatments that are more accessible 29 and costefficient compared to traditional modalities. 30 While the potential benefits of eHealth in emotional distress 31,32 and QoL along the cancer journey 33 have been demonstrated, studies assessing eHealth psychosocial interventions which also address cognitive care are scarce. 19 Considering the complex nature of cognitive challenges experienced by breast cancer survivors, it is urgent to develop interventions that address both objective deficits and subjective cognitive dysfunction in a tailored manner, depending on individual patient needs. ...
... 34,35 In this sense, a quasi-experimental single-group pilot study was conducted to examine its feasibility, as well as the evolution of psychological outcomes (i.e., emotional distress, social support, post-traumatic stress) in a sample of target patients during it first-year implementation. 32 It was concluded that ICOnnecta't intervention is feasible to implement, showing high rates of intervention acceptance (i.e., the percentage of enrolled patients relative to the eligible patients to whom the program was offered), use and satisfaction with the digital tool among BC survivors. ...
... According to prior mention, the ICOnnecta't psychosocial intervention was examined in a pilot study 32 and a RCT comparing this eHealth intervention versus care as usual (i.e., face-to-face psychosocial intervention) is currently in progress (NCT04372459). These experiences represent a significant strength for the present study as both researchers and health psychologists are well-versed in implementation, participant recruitment and eHealth intervention protocols. ...
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Introduction Breast cancer often leads to cancer-related cognitive impairment (CRCI), which includes both objective and subjective cognitive deficits. While psychosocial interventions benefit quality of life and distress reduction, their impact on cognitive deficits is uncertain. This study evaluates the integration of a cognitive module into a digital psychosocial intervention for breast cancer patients. Methods In this randomized controlled trial (RCT), 88 recently diagnosed breast cancer (BC) patients will receive the ICOnnecta't program (control group) – a digital stepped intervention addressing a variety of psychosocial needs. The experimental group (n = 88) will receive ICOnnecta’t plus a cognitive module. Assessments at baseline, 3, 6, and 12 months will measure the interventions’ impact on cognition, emotional distress, medication adherence, quality of life, post-traumatic stress, work functioning and healthcare experience. Feasibility and cost-utility analyses will also be conducted. Results The cognitive module includes three levels. The first level contains a cognitive screening using FACT-Cog Perceived Cognitive Impairment (PCI). Patients with PCI <54 progress to a cognitive psychoeducational campus (Level 2) with content on cognitive education, behavioural strategies and mindfulness. Patients with persistent or worsened PCI (≥6) after 3 months move to Level 3, an online cognitive training through CogniFit software delivered twice a week over 12 weeks. Conclusions This study assesses whether integrating a cognitive module into a digital psychosocial intervention improves objective and subjective cognition in breast cancer patients. Secondary outcomes explore cognitive improvement's impact on psychosocial variables. The research will contribute to testing efficacious approaches for detecting and addressing cognitive dysfunction in breast cancer patients. Trial registration ClinicalTrials.gov, NCT06103318. Registered 26 October 2023, https://classic.clinicaltrials.gov/ct2/show/NCT06103318?term=serra-blasco&draw=2&rank=4
... 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. ...
... However, existing research has usually centered on physical symptoms, not the emotional and spiritual concerns of patients. Furthermore, patients benefit most from psychosocial interventions when they have elevated baseline emotional distress (Jansen et al., 2019;Medina et al., 2022;Nissen et al., 2021), stressing the importance of individualized strategies that allocate resources to patients with at-risk profiles. ...
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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: ClinicalTrials.gov ID "NCT05497973".
... The Computer-Aided Diagnosis (CAD) framework proves beneficial in identifying breast abnormalities without requiring expert radiologists and offers a model capable of achieving earlier and more accurate breast tumor detection [44]. Medina's study presented the development and initial outcomes of a step-by-step psychosocial eHealth ecosystem designed to facilitate risk assessment and prevention of early emotional distress among breast cancer survivors [45]. Despite evidence supporting the effectiveness of using the Internet as a valuable tool for successful breast cancer patient care, methodological limitations in the existing evidence base underscore the need for further well-planned and high-quality research [46]. ...
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Background: In the battle against the COVID-19 pandemic, Internet-based diagnosis and treatment services offer a promising technological avenue for effective healthcare delivery. However, there remains a scarcity of bibliometric analyses on Internet-based diagnosis and treatment services within the healthcare domain. This study aims to address this gap by conducting a comprehensive examination of research advancements, highlighting prevalent themes, and delineating emerging trends in Internet-based diagnosis and treatment research using CiteSpace V. Methods: The Web of Science Core Collection (WoSCC) was utilized to gather literature on Internet-based diagnosis and treatment within the healthcare sector spanning from 2001 to 2021. CiteSpace V facilitated keyword analysis, created dual-map overlays of journals, generated timeline views of co-cited references, and analyzed literature information. This encompassed variables such as involved countries and institutions, journals publishing relevant research, authors and cited authors, cited references, highly cited works, H-index, average citations, prevalent subjects of interest, and emerging frontiers in the field. Results: WoSCC identified a total of 1259 papers on Internet-based diagnosis and treatment for bibliometric analysis. Annual publications generally exhibited an upward trend. The United States contributed the most publications (465 papers) and the highest number of highly cited papers (9). Poland had the highest average citations per item (42.12). Gerhard Andersson emerged as the most influential author, with 16 publications and a co-citation count of 216. The six primary topics in Internet-based diagnosis and treatment services were health anxiety, randomized controlled trials, IoT platforms, health-related quality, Chinese men, and Internet gaming disorder. The eight emerging topics were medical devices, artificial intelligence, health-related quality, breast cancer, prostate cancer, patient care, treatment decisions, and HIV. With the development of Internet-based diagnosis and treatment technology, major ongoing research trends include the deep application of artificial intelligence in the medical field, enhancing patient satisfaction in clinical practice, improving health-related quality, and treating breast cancer patients. Conclusions: This study provides a comprehensive examination of Internet-based diagnosis and treatment services within the healthcare sector, offering valuable insights that provide significant guidance for future development in the field.
... During the ongoing coronavirus disease 2019 (COVID-19) pandemic, telemedicine-based psychosocial intervention appears to be a promising option for BC patients. It not only maintains BC patients' access and continuity of care, optimizes face-to-face services, and minimizes infectious transmission, but also caters to patients with individualized needs and social stigma [69,70]. Based on the evidence provided in this review, the use of telemedicine-based psychosocial interventions has revealed some effectiveness and highlights several directions for future research. ...
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Objectives This review aimed to synthesize the available evidence on the effectiveness of telemedicine-based psychosocial interventions among breast cancer (BC) patients regarding quality of life (QOL), depression, anxiety, distress, fatigue, sleep disorders, sexual function, and fear of cancer recurrence (FCR). Methods A search of 10 databases was conducted to identify RCTs of the effects of telemedicine-based psychosocial interventions on outcomes. Selection of studies, quality appraisal, and data extraction were performed by two reviewers independently. GRADE and Cochrane risk of bias assessment tools were used for quality appraisal. Heterogeneity was determined by I², standardized mean differences (SMD) were used to determine intervention effects, and meta-analyses, subgroup analysis, and sensitivity analysis were performed. Results In total, 29 RCTs were included. Telemedicine-based psychosocial interventions improved the primary outcomes of QOL (SMD = 0.32), distress (SMD = − 0.22), and anxiety (SMD = − 0.16) in BC patients with moderate effect size. There were some improvements in the secondary outcomes of sleep disorders (SMD = − 056), sexual function (SMD = 0.19), and FCR (SMD = − 0.41). After sensitivity analysis, the effect size of fatigue was moderate (SMD = − 0.24). Conclusion Telemedicine-based psychosocial interventions are superior to usual care in BC patients with improved QOL, sexual function, and less distress, anxiety, fatigue, sleep disorders, and FCR. Due to the heterogeneity of the results for QOL, anxiety, fatigue, sleep disturbance, and FCR, these results should be interpreted cautiously. In the future, more rigorous RCTs need to be designed to identify better delivery models and intervention times to further test their effectiveness.
... 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. ...
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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.
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Burgeoning technologies and the COVID-19 pandemic resulted in a boom of telehealth for immunocompromised patients, such as those with cancer. Telehealth modalities overcome barriers and promote accessibility to care. Currently, efficacious psychosocial interventions exist to address negative aftereffects of a cancer diagnosis and treatment. Many of these interventions often incorporate asynchronous telehealth (e.g., web-based, smartphone mobile app) features. However, asynchronous platforms are limited by suboptimal engagement. Subjective indicators of perceived engagement in the forms of acceptability, feasibility, and adherence are often captured, yet prior research has found discrepancies between perceived and actual engagement. The FITT (frequency, intensity, time/duration, type of engagement) model, originally developed for use to quantify engagement within exercise trials, provides a framework to assess objective engagement of psychosocial interventions for breast cancer. Using 14 keywords and searching six databases through 11/2023, 56 studies that used asynchronous telehealth interventions in breast cancer were identified. All FITT domains were reported at least once across studies with intensity metrics most commonly reported. Nine metrics were described across FITT domains. Human-centered design principles to guide telehealth development and privacy considerations are discussed. Findings offer suggestions for how to represent and optimize objective engagement in asynchronous telehealth cancer care.
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Breast cancer (BC) is a leading topic in medical research as it is the most common cancer occurring in women worldwide; its incidence is progressively increasing in all age groups [...]
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Cancer is a very distressing disease, not only for the patients themselves, but also for their family members and relatives. Therefore, patients are regularly monitored to decide whether psychological treatment is necessary and applicable. However, such monitoring processes are costly in terms of required staff and time. Mobile data collection is an emerging trend in various domains. The medical and psychological field benefits from such an approach, which enables experts to quickly collect a large amount of individual health data. Mobile data collection applications enable a more holistic view of patients and assist psychologists in taking proper actions. We developed a mobile application, FeelBack, which is designed to support data collection that is based on well-known and approved psychological instruments. A controlled pilot evaluation with 60 participants provides insights into the feasibility of the developed platform and it shows the initial results. 31 of these participants received paper-based questionnaire and 29 followed the digital approach. The results reveal an increase of the overall acceptance by 58.5% in the mean when using a digital screening as compared to the paper-based. We believe that such a platform may significantly improve cancer patients’ and relatives’ psychological treatment, as available data can be used to optimize treatment.
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Background Electronic symptom self-reporting systems (e-SRS) have been shown to improve symptoms and survival in patients with cancer. However, patient engagement in using e-SRS for voluntary symptom self-reporting is less optimal. Multiple factors can potentially affect patients’ acceptance and engagement in using home-based e-SRS. However, such factors have not been fully explored in cancer populations. Objective The aim of this study is to understand the acceptance and use of home-based e-SRS by patients with cancer and identify associated facilitators and barriers. Methods PubMed, CINAHL, Scopus, and PsycINFO (January 2010 to March 2020) were searched using a combination of Medical Subject Headings (MeSH) terms and keywords such as symptom self-reporting, electronic/technology, cancer, and their synonyms. Included studies focused on the use of home-based e-SRS by patients with cancer and their families. Studies on patients’ use of e-SRS in clinical settings only were excluded. Of the 3740 papers retrieved, 33 were included in the final review. Factors associated with patient acceptance and use of e-SRS were extracted and synthesized. Results Most e-SRS were web based (22/33, 66%) or mobile app based (9/33, 27%). The e-SRS initial acceptance, represented by patient enrollment rates, ranged from 40% (22/55) to 100% (100/100). High e-SRS acceptance was rated by 69% (59/85) to 77.6% (337/434) of the patients after they used the system. The e-SRS use, measured by patients’ response rates to questionnaires (ranging from 1596/3521, 45.33% to 92%) or system log-on rates (ranging from 4/12, 33% to 99/100, 99%), declined over time in general patterns. Few studies (n=7) reported e-SRS use beyond 6 months, with the response rates ranging from 62% (40/64) to 85.1% (541/636) and the log-on rates ranging from 63.6% (103/162) to 77% (49/64). The availability of compatible devices and technical support, interactive system features, information accessibility, privacy, questionnaire quality, patient physical/psychosocial status, and age were associated with patient acceptance and use of home-based e-SRS. Conclusions Acceptance and use of home-based e-SRS by patients with cancer varied significantly across studies, as assessed by a variety of approaches. The lack of access to technology has remained a barrier to e-SRS adoption. Interactive system features and personalized questionnaires may increase patient engagement. More studies are needed to further understand patients’ long-term use of home-based e-SRS behavior patterns to develop personalized interventions to support symptom self-management and self-reporting of patients with cancer for optimal health outcomes.
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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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Background: eHealth mindfulness-based programs (eMBPs) are on the rise in complex oncology and palliative care. However, we are still at the beginning of answering the questions of how effective eMBPs are and for whom, and what kinds of delivery modes are the most efficient. Objective: This systematic review aims to examine the feasibility and efficacy of eMBPs in improving the mental health and well-being of patients with cancer, to describe intervention characteristics and delivery modes of these programs, and to summarize the results of the included studies in terms of moderators, mediators, and predictors of efficacy, adherence, and attrition. Methods: In total, 4 databases (PubMed, PsycINFO, Scopus, and Web of Knowledge) were searched using relevant search terms (eg, mindfulness, program, eHealth, neoplasm) and their variations. No restrictions were imposed on language or publication type. The results of the efficacy of eMBPs were synthesized through the summarizing effect estimates method. Results: A total of 29 published papers describing 24 original studies were included in this review. In general, the results indicate that eMBPs have the potential to reduce the levels of stress, anxiety, depression, fatigue, sleep problems, and pain, and improve the levels of mindfulness, posttraumatic growth, and some parameters of general health. The largest median of Cohen d effect sizes were observed in reducing anxiety and depression (within-subject: median −0.38, IQR −0.62 to −0.27; between-group: median −0.42, IQR −0.58 to −0.22) and facilitating posttraumatic growth (within-subject: median 0.42, IQR 0.35 to 0.48; between-group: median 0.32, IQR 0.22 to 0.39). The efficacy of eMBP may be comparable with that of parallel, face-to-face MBPs in some cases. All studies that evaluated the feasibility of eMBPs reported that they are feasible for patients with cancer. Potential moderators, mediators, and predictors of the efficacy, attrition, and adherence of eMBPs are discussed. Conclusions: Although the effects of the reviewed studies were highly heterogeneous, the review provides evidence that eMBPs are an appropriate way for mindfulness practice to be delivered to patients with cancer. Thus far, existing eMBPs have mostly attempted to convert proven face-to-face mindfulness programs to the eHealth mode. They have not yet fully exploited the potential of eHealth technology.
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Background: Chronic disease represents a large and growing burden to the health care system worldwide. One method of managing this burden is the use of app-based interventions; however attrition, defined as lack of patient use of the intervention, is an issue for these interventions. While many apps have been developed, there is some evidence that they have significant issues with sustained use, with up to 98% of people only using the app for a short time before dropping out and/or dropping use down to the point where the app is no longer effective at helping to manage disease. Objective: Our objectives are to systematically appraise and perform a meta-analysis on dropout rates in apps for chronic disease and to qualitatively synthesize possible reasons for these dropout rates that could be addressed in future interventions. Methods: MEDLINE (Medical Literature Analysis and Retrieval System Online), PubMed, Cochrane CENTRAL (Central Register of Controlled Trials), and Embase were searched from 2003 to the present to look at mobile health (mHealth) and attrition or dropout. Studies, either randomized controlled trials (RCTs) or observational trials, looking at chronic disease with measures of dropout were included. Meta-analysis of attrition rates was conducted in Stata, version 15.1 (StataCorp LLC). Included studies were also qualitatively synthesized to examine reasons for dropout and avenues for future research. Results: Of 833 studies identified in the literature search, 17 were included in the review and meta-analysis. Out of 17 studies, 9 (53%) were RCTs and 8 (47%) were observational trials, with both types covering a range of chronic diseases. The pooled dropout rate was 43% (95% CI 29-57), with observational studies having a higher dropout rate (49%, 95% CI 27-70) than RCTs in more controlled scenarios, which only had a 40% dropout rate (95% CI 16-63). The studies were extremely varied, which is represented statistically in the high degree of heterogeneity (I2>99%). Qualitative synthesis revealed a range of reasons relating to attrition from app-based interventions, including social, demographic, and behavioral factors that could be addressed. Conclusions: Dropout rates in mHealth interventions are high, but possible areas to minimize attrition exist. Reducing dropout rates will make these apps more effective for disease management in the long term. Trial registration: International Prospective Register of Systematic Reviews (PROSPERO) CRD42019128737; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42019128737.
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Purpose The aim was to evaluate the effects of co‐created internet‐based stepped care (iCAN‐DO) on anxiety, depression, posttraumatic stress, and health‐related quality of life (HRQoL) in individuals with cancer and self‐reported anxiety and/or depression symptoms, compared with standard care. Patients and methods Clinically recruited individuals with breast, colorectal, or prostate cancer underwent online screening with the Hospital Anxiety and Depression Scale (HADS). Those with anxiety and/or depression symptoms (> 7 on any of the HADS subscales) were randomized to iCAN‐DO or standard care. iCAN‐DO comprised psychoeducation and self‐care strategies (step 1) and internet‐based cognitive behavioral therapy (iCBT, step 2). Data were collected before randomization and at 1, 4, 7, and 10 months and analyzed with ITT regression analysis and randomization tests. Results Online screening identified 245 (27%) of 909 individuals who reported anxiety and/or depression symptoms. They were randomized to iCAN‐DO (n=124) or standard care (n=121). Of them 49% completed the 10‐month assessment, and in the iCAN‐DO group 85% accessed step 1 and 13% underwent iCBT. iCAN‐DO decreased the levels of symptoms of depression (‐0.54, 95% CI: (‐1.08)– (‐0.01), p<.05) and the proportion of individuals with symptoms of depression (p<.01) at 10 months, compared with standard care, according to HADS. There were no significant effects on anxiety, posttraumatic stress, or HRQoL. Conclusion Internet‐based stepped care improves symptoms of depression in individuals with cancer. Further studies are needed to gain knowledge on how to optimize and implement internet‐based support in oncology care. This article is protected by copyright. All rights reserved.
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Objective This study assesses the effectiveness of face‐to‐face group positive psychotherapy for cancer survivors (PPC) compared to its online adaptation, online group positive psychotherapy for cancer survivors (OPPC), which is held via videoconference. A two‐arm, pragmatic RCT was conducted to examine the effects of both interventions on emotional distress, posttraumatic stress (PTSS) and posttraumatic growth (PTG) among cancer survivors and analyze attrition to treatment. Methods Adult women with a range of cancer diagnoses were invited to participate if they experienced emotional distress at the end of their primary oncological treatment. Emotional distress, PTSS and PTG were assessed at baseline, immediately after treatment and three months after treatment. Intention‐to‐treat analyses were carried out using general linear mixed models to test the effect of the interventions overtime. Logistic regressions were performed to test differential adherence to treatment and retention to follow‐up. Results A total of 269 individuals participated. The observed treatment effect was significant in both modalities, PPC and OPPC. Emotional distress (b = − 2.24, 95%CI = ‐3.15‐ −1.33) and PTSS (b = − 3.25, 95%CI = ‐4.97‐ −1.53) decreased significantly over time, and PTG (b = 3.08, 95%CI = 0.38‐5.78) increased significantly. Treatment gains were sustained across outcomes and over time. Analyses revealed no significant differences between modalities of treatment, after adjusting for baseline differences, finding that OPPC is as effective and engaging as PPC. Conclusions The OPPC treatment was found to be effective and engaging for female cancer early survivors. These results open the door for psycho‐oncology interventions via videoconference, which are likely to lead to greater accessibility and availability of psychotherapy. This article is protected by copyright. All rights reserved.
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Objective: The study sought to determine which patient characteristics are associated with the use of patient-facing digital health tools in the United States. Materials and methods: We conducted a literature review of studies of patient-facing digital health tools that objectively evaluated use (eg, system/platform data representing frequency of use) by patient characteristics (eg, age, race or ethnicity, income, digital literacy). We included any type of patient-facing digital health tool except patient portals. We reran results using the subset of studies identified as having robust methodology to detect differences in patient characteristics. Results: We included 29 studies; 13 had robust methodology. Most studies examined smartphone apps and text messaging programs for chronic disease management and evaluated only 1-3 patient characteristics, primarily age and gender. Overall, the majority of studies found no association between patient characteristics and use. Among the subset with robust methodology, white race and poor health status appeared to be associated with higher use. Discussion: Given the substantial investment in digital health tools, it is surprising how little is known about the types of patients who use them. Strategies that engage diverse populations in digital health tool use appear to be needed. Conclusion: Few studies evaluate objective measures of digital health tool use by patient characteristics, and those that do include a narrow range of characteristics. Evidence suggests that resources and need drive use.
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Introduction Comorbid posttraumatic stress disorder (PTSD) in patients with chronic pain may have a negative effect on the course and outcome of both disorders. Nevertheless, the co-occurrence of the two conditions is often overlooked in clinical settings. Further, little is known about how PTSD is associated with biopsychosocial characteristics in this patient group. The first objective was to assess the prevalence of posttraumatic stress symptoms (PTSS) in patients with chronic pain in a Norwegian university hospital outpatient pain clinic. The second objective was to investigate possible associations between PTSS and adverse outcomes such as pain intensity, disability, and distress. The third objective was to compare the PTSS prevalence rates between primary versus secondary pain conditions. Materials and methods Six hundred and ninety-two patients meeting for pain assessment completed self-report questionnaires about PTSS and possibly associated factors. The Life Events Checklist and the Stressful Life Events Screening Questionnaire were used to screen for potentially traumatic life events. The Impact of Events Scale – Revised and the PTSD Checklist for DSM-5 were used to assess PTSS. Differences between patients with and without severe PTSS on the possibly associated variables were analyzed by chi-squared-, and t-tests. Results 20.7% of the participants reported a level of PTSS qualifying for a PTSD diagnosis. These patients reported higher levels of pain intensity, pain bothersomeness, disability, and psychological distress, as well as lower levels of self-efficacy. They also reported higher levels of pain catastrophizing, perceived injustice, fatigue, and sleep difficulties. Finally, there was not a significant difference in prevalence rates between primary and secondary pain conditions. Discussion PTSS are frequent in patients with chronic pain, and a range of psychological characteristics is associated with a high level of such symptoms in this patient group. Patients with both conditions report a significantly higher symptom load, and the potential impact on the individual’s life is major. In terms of pain condition, there were no differences in PTSS between primary pain conditions and secondary pain conditions in this pain population. This study emphasizes the importance of increased attention on PTSS when seeing patients with chronic pain conditions in clinical practice.
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