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Patient empowerment may be an effective approach to strengthen the role of cancer survivors and to reduce the burden on health care. However, it is not well conceptualized, notably in oncology. Furthermore, it is unclear to what extent information technology (IT) services can contribute to empowerment of cancer survivors.
We aim to define the conceptual components of patient empowerment of chronic disease patients, especially cancer survivors, and to explore the contribution of existing and new IT services to promote empowerment.
Electronic databases were searched to identify theoretical and empirical articles regarding empowerment. We extracted and synthesized conceptual components of patient empowerment (ie, attributes, antecedents, and consequences) according to the integrated review methodology. We identified recent IT services for cancer survivors by examining systematic reviews and a proposed inventory of new services, and we related their features and effects to the identified components of empowerment.
Based on 26 articles, we identified five main attributes of patient empowerment: (1) being autonomous and respected, (2) having knowledge, (3) having psychosocial and behavioral skills, (4) perceiving support from community, family, and friends, and (5) perceiving oneself to be useful. The latter two were specific for the cancer setting. Systematic reviews of IT services and our additional inventory helped us identify five main categories: (1) educational services, including electronic survivorship care plan services, (2) patient-to-patient services, (3) electronic patient-reported outcome (ePRO) services, (4) multicomponent services, and (5) portal services. Potential impact on empowerment included knowledge enhancement and, to a lesser extent, enhancing autonomy and skills. Newly developed services offer promising and exciting opportunities to empower cancer survivors, for instance, by providing tailored advice for supportive or follow-up care based on patients' input.
We identified five main components of empowerment and showed that IT services may especially contribute to empowerment by providing knowledge. The components of empowerment could be used to develop IT services for cancer survivors. It is important to take into account patients’ needs, follow up on these needs, and create a service that is attractive and easy to use.
A popular approach to improve the involvement of patients in their care is to provide them with information on how to make a decision about medical treatment (ie, shared decision making) [
Because of better screening, detection, and treatment, the number of cancer survivors is growing rapidly. We will use the term cancer survivor as the National Coalition of Cancer Survivorship defines cancer survivorship: “from the time of diagnosis and through the balance of life.” In 2008, 28.8 million people worldwide had survived cancer for at least 5 years [
Empowering interventions providing face-to-face support to patients require substantial resources and effort. A promising approach is the use of information technology (IT), which enables the provision of easily accessible, up-to-date, tailored information and automated feedback to patients. Many
The objective of this study is to identify conceptual components of patient empowerment in chronic patients and cancer survivors and to explore the contribution of existing and new IT services to promote their empowerment. This can guide the development of innovative and sustainable eHealth services that may improve empowerment in cancer survivorship care.
We conducted an integrative literature review using the methodology as proposed by Whittemore and Knafl [
We performed a literature search in PubMed (Medline), Scopus, and PsycINFO from January 1990 up to April 2014 to obtain definitions of patient empowerment in general, and specifically in cancer survivors. Search terms included “conceptual,” “theory,” and “cancer” either alone or combined, and always in combination with “patient empowerment.” The search query for PubMed is presented in
A predefined data sheet was used for data extraction. Data were extracted on study characteristics (ie, first author, year of publication, type of research, number of participants involved, and type of disease), defining attributes (ie, characteristics), antecedents (ie, events or circumstances that precede a concept), and consequences (ie, phenomena that follow an occurrence of the concept) of empowerment [
We searched the Medline (PubMed) database for papers in English that were published between January 2010 and January 2015. We used medical subject headings and free-text terms. A combination of any of the terms "cancer patient," "cancer survivor," "cancer survivorship," and “cancer” was combined with any combination of the terms “information and communication technology” (ICT), "ICT," "Web-based," and "Internet." The search query for PubMed is presented in
Apart from the services described in the systematic reviews, there were also emerging services that were in an early phase of development and had not yet been rigorously tested. We therefore additionally searched Google and PubMed up to April 2014. To our knowledge, no formal guidelines exist for surveying eHealth systems and applications. We purposely selected three groups of these IT services that may be particularly relevant for cancer survivors (but may be designed for other diseases as well), namely: (1) patient portals, (2) electronic patient-reported outcome (ePRO) systems, and (3) IT services related to survivorship care plans for cancer patients. Major keywords used, either alone or in combination, were as follows: "patient portal(s)," "patient empowerment," "electronic medical record," "patient reported outcomes," "survivorship care plan," "cancer," and "information and communication technology." References in reports and articles were checked for citations leading to other possible relevant IT services (ie, snowballing method). Suggestions from members of our project group were added to this inventory as well. Our inclusion criteria were as follows: (1) we included portal services that at least provided insight into the patient's medical record, (2) with regard to ePRO systems, we included systems that enable people with cancer to complete symptoms and/or quality-of-life questionnaires by computer, either at home or at the clinic, (3) for the survivorship care support services, we included those that were aimed at cancer survivors and provided an electronic survivorship care plan (SCP) or generated one from a digital registry, and (4) all IT services had to be in use and not only available as a test or beta version.
From the identified IT services, key features and user interaction aspects were collected from websites, published manuscripts, or by demos of the service when possible. Lastly, convenience sample-based site visits were made to developers of the OncoKompas system (Free University Medical Center, Amsterdam, Netherlands), the ChipSoft patient portal (University Medical Center [UMC] Utrecht, Netherlands), the digital in vitro fertilization (IVF) clinic (Radboud UMC, Nijmegen, Netherlands), and the electronic patient-reported outcome system of UMC Leiden, Netherlands. The developers of Care Companion (Sanofi Aventis, Gouda, Netherlands) visited us to demonstrate their application. Demo software of the Computer-based Health Evaluation System (CHES) for ePRO (Innsbruck, Austria) was obtained for review. References to the services can be found in
The possible contribution of identified IT services to attributes of patient empowerment was determined by relating the reviewed features and effects to the attributes of empowerment as identified by the integrative review. Results are presented qualitatively and several exemplary IT services are described in detail.
The initial search resulted in 2248 hits. After screening titles and abstracts, 94 papers were selected and read in full text. A total of 22 papers met our inclusion criteria and four articles were added by checking reference lists. A total of 11 reviews were included [
Flowchart of selection of articles according to PRISMA.
Antecedents that appeared from the literature were to a large extent based on the excellent review of Holmström et al [
There are several antecedents of patient empowerment that relate to health care providers (HCPs) and their approach to patients. When HCPs respect patients’ beliefs and surrender their need to control and decide for patients, they create an atmosphere of mutual trust and respect [
Three main attributes emerged from the literature review concerning chronic patients.
Patients must have the opportunity to make their own decisions and choose their own health or life goals [
Conceptual components of empowerment in chronic patients, including cancer survivors. HCP: Health care provider. A detailed overview of attributes is provided in
Having knowledge about one’s health situation is another attribute of empowerment. It refers to having knowledge about one’s disease [
Nearly every article that we reviewed described having skills to positively influence one’s situation as an attribute of patient empowerment. These skills could be subdivided into those related to internal thought processes (ie, internal/personal) and those more behaviorally and externally oriented (ie, external/interactional). Internal/personal skills are, in general, referred to as personal psychological strengths, such as having a sense of self-efficacy, self-esteem, optimism, and personal competence [
External/interactional skills are needed to positively influence one’s current situation by one’s own behavior and/or by interaction with others. These skills are generally related to the effectiveness of patients in managing their disease through preventive self-management [
A diversity of consequences of empowerment was reported in the reviewed literature. Empowerment is associated with increased self-esteem and a better self-concept [
Identified attributes of patient empowerment and the possible contributing role of reviewed educational and patient-to-patient ITaservices.
Attributes of empowerment | Possible contributing role of reviewed IT services | |||
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Educational services | Patient-to-patient services | ||
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Patients make their own decisions and choose their own health or life goals | oc | +d,e | |
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There is an atmosphere of mutual trust | o | o | |
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HCPs bring their power to a level that provokes equal participation of the patient and act as coaches to work toward negotiated health goals | o | o | |
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HCPs share knowledge and resources in such a way that patients feel fully recognized | ++f,g | o | |
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Having knowledge about one’s disease and treatments and about oneself | ++h | +i | |
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Having knowledge about available supporting resources | ++h | +i | |
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Having self-efficacy, self-esteem, optimism, and personal competence | o | o |
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Ability to accept diagnosis and cope with emotions (eg, anxiety or depression) | +j | o |
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Capacity to identify one’s needs and psychosocial problems and set goals to improve self-selected goals | o | o |
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Increase and maintain motivation to pursue health goals | o | o |
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Effectiveness of patients in managing their disease through preventive self-management | +k | o |
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Effective collaborative interaction with HCPs, such as negotiating, asking for clarification, etc | o | o |
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Being able to obtain emotional and practical support from family and friends | +k | o |
Perceiving support from community, family, and friends | o | +l | ||
Perceiving oneself to be useful through having paid employment and/or by contributing to family and friends | o | o |
aIT: information technology.
bHCP: health care provider.
co: no positive contribution to empowerment.
d+: weak positive contribution to empowerment.
ePatients can ask questions regarding their most relevant issues in online communities.
f++: strong positive contribution to empowerment.
gKnowledge and resources are shared between HCPs and patients.
hProviding Information about, for example, diagnosis, treatments, side effects, late effects, follow-up scheme, and healthy lifestyle, and information on, or links to, supporting resources.
iInformation could be obtained through online communities, however quality may be limited.
jTraining programs could enhance coping with emotions.
kProviding information about diagnosis, treatments, side effects, late effects, follow-up scheme, and healthy lifestyle, and information on, or links to, supporting resources. Provision of skill-building programs to effectively obtain social support.
lPatients could perceive more support from community (ie, fellow patients).
Identified attributes of patient empowerment and the possible contributing role of reviewed ePROaservices and patient portals.
Attributes of empowerment | Possible contributing role of reviewed ITbservices | |||
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ePRO services | Patient portals | ||
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Patients make their own decisions and choose their own health or life goals | +c,d | oe | |
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There is an atmosphere of mutual trust | o | o | |
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HCPs bring their power to a level that provokes equal participation of the patient and act as coaches to work toward negotiated health goals | +d | o | |
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HCPs share knowledge and resources in such a way that patients feel fully recognized | o | ++f.g | |
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Having knowledge about one’s disease and treatments and about oneself | +h | ++i | |
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Having knowledge about available supporting resources | o | ++i | |
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Having self-efficacy, self-esteem, optimism, and personal competence | o | o |
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Ability to accept diagnosis and cope with emotions (eg, anxiety or depression) | o | o |
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Capacity to identify one’s needs and psychosocial problems and set goals to improve self-selected goals | +j | o |
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Increase and maintain motivation to pursue health goals | +j | o |
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Effectiveness of patients in managing their disease through preventive self-management | o | o |
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Effective, collaborative interaction with HCPs, such as negotiating, asking for clarification, etc | ++k | +l |
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Being able to obtain emotional and practical support from family and friends | o | o |
Perceiving support from community, family, and friends | o | o | ||
Perceiving oneself to be useful through having paid employment and/or by contributing to family and friends | o | o |
aePRO: electronic patient-reported outcome.
bIT: information technology.
c+: weak positive contribution to empowerment.
dePROs give patients the opportunity to identify personally relevant issues and health goals.
eo: no positive contribution to empowerment.
f++: strong positive contribution to empowerment.
gMedical knowledge in the electronic medical record (EMR) is shared between HCPs and patients.
hProviding knowledge of personal symptoms and physical and psychosocial functioning by providing graphic overview of symptom and quality-of-life scores.
iProviding information about diagnosis, test results, treatments, etc, by providing access to parts of the EMR during and after treatment. Providing knowledge about available supporting resources through tailored patient educational material.
jIdentification of personal needs and psychosocial problems by providing graphic overview of symptoms and quality-of-life scores, with or without reference values.
kWhen ePROs are fed back to patients with coaching statements, it may improve the effectiveness of the encounters with health professionals.
lE-consultations may enhance patient-provider interaction.
Six papers were specifically aimed at cancer patients: three methodological papers describing the development and psychometric testing of a questionnaire designed to measure empowerment [
Taken together, the cancer-specific papers reflected many aspects already identified from literature on patients with a chronic disease. No cancer-specific antecedents or consequences could be identified from these studies. Most attributes were related to having knowledge and having psychosocial and behavioral skills. Cancer-specific attributes that could be added to the three already described above are as follows:
1. Perceiving support from community, family, and friends [
2. Perceiving oneself to be useful through having paid employment and/or by contributing to family and friends [
Also, one specific subattribute could be added to the attribute,
The initial search identified 216 potentially relevant reviews. We selected 26 reviews for full-text screening and four met all of our inclusion criteria [
Below, we report on the main features of the services per category, including several examples and a summary of the evidence regarding the effectiveness or hypothesized benefits in supporting the attributes of patient empowerment, as identified in the previous step. For convenience, the possible contributions to attributes of empowerment are indicated as follows: being autonomous and respected (AR); having knowledge (HK); having skills (SK); and perceived support from community, family, and friends (PS). We felt that IT could not/hardly contribute to the attribute,
Educational services often are interactive systems provided via the Internet or offline via computer or CD-ROM. Many provide disease- and treatment-related information to improve knowledge of survivors (HK). Some are specifically aimed at improving decision making (SK), for example, regarding surgical treatment for breast or prostate cancer. An example is the Interactive Digital Education Aid (IDEA) intervention [
Other services contain educational programs about symptoms and how to cope with them (HK and SK). For example, the Sleep Healthy Using The Internet (SHUTi) program is based on a well-validated, face-to-face cognitive behavioral therapy (CBT) program and includes six interactive modules [
The electronic survivorship care plan support is based on the recommendation of the Institute of Medicine that survivors should be provided with a personalized structured overview of one’s disease, treatments, and possible short- and long-term side effects (HK). Furthermore, it may include information on available resources, recommended follow-up visits, and on healthy lifestyle (AR and HK). Several electronic SCP initiatives exist. The LIVESTRONG Care Plan provides an online SCP based on the data that patients provide themselves [
Beneficial effects of educational services related to patient empowerment include increased levels of knowledge, skill development through better decision making, increased levels of satisfaction, and, to a lesser extent, a better quality of life. However, the number of high-quality studies supporting those claims remains limited [
Patient-to-patient services consist of online support groups or bulletin boards in which patients can exchange experiences with fellow patients and ask about their most bothersome issues (AR, HK, and PS). These services are quite unstructured and the quality of feedback may be limited because fellow patients may have different treatments and may lack proper medical knowledge. An example is the Internet peer support offered to a large group of cancer survivors as described by Hoybye et al [
Patient-to-patient services may contribute to empowerment through increased autonomy, because patients can ask questions about their most bothersome issues, and through increased knowledge about one’s health/disease. Furthermore, it may improve perceived support from the community, in this case fellow patients. To date, however, there are few studies available to make firm claims on effectiveness related to patient empowerment. Results of controlled studies range from positive effects on depression, cancer-related trauma, and perceived stress [
Several national and international services have been developed whereby cancer survivors can complete validated questionnaires about symptoms and/or quality-of-life issues at home or in the waiting room of the clinic. All identified systems possess the ability to graphically show questionnaire data to clinicians, and some have the feature of adding norm values derived from healthy individuals, such as the CHES [
ePRO systems are hypothesized to contribute to patient empowerment by enabling survivors to identify their most relevant issues (ie, increased autonomy) and by enhancing their knowledge of their current health status and patterns of change in their health over time. Having such information may also increase the effectiveness of the encounters of patients with their HCPs; both patients and their HCPs may be motivated to talk about the patients' most bothersome issues. Two RCTs of the ESRA-C have demonstrated its effectiveness in terms of the number of bothersome issues discussed (HK and SK) and a small improvement in symptom distress (SK) [
Many services contain a mix of the aforementioned features. Most services combine educational support with patient-to-patient support as described above. One such service is the Comprehensive Health Enhancement Support System (CHESS) [
Because this category of services is quite broad, the evidence regarding effects on enhancing empowerment is also variable. There is some evidence that these services contribute to enhanced knowledge and skills, mostly from studies of CHESS. However, other services also show improved knowledge [
Most patient portals offer patients access to their EMR (AR and HK) and provide additional services like tailored patient education (HK), questionnaire administration, posing questions electronically to clinicians (ie, e-consultation) (SK), making notes/keeping a diary for oneself (HK), ordering medication, and appointment keeping (SK). Most portals are directly integrated with the EMR, although some are separate applications that connect to the EMR and transfer data to a freestanding Web-based portal [
No controlled studies have investigated the effect of patient portals on improving aspects of empowerment in cancer survivors, but they may contribute to patient empowerment in several ways. First, by accessing their EMR, patients have the same clinical information available as their clinicians, thus potentially enhancing perceptions of being respected and of autonomy. Second, portals may enhance patients’ knowledge of their disease and treatments, either via access to their EMR or via tailored patient education. To date, there appears to be limited contribution of patient portals to skill development. E-consultation might enhance the effectiveness of the interaction of patients with their HCPs.
By using the integrative review methodology, we were able to identify conceptual components of patient empowerment of chronic patients including cancer survivors. We illustrated the various ways in which selected IT services may contribute to patient empowerment of cancer survivors. This is a first attempt to link empowerment theory to existing IT services for cancer survivors.
We identified five main attributes related to patient empowerment. The first is
The second attribute is
The third identified attribute is
The fourth and fifth attributes were derived from cancer-specific studies.
Empowerment appears to be a relatively new concept in its application to cancer survivors. This may be due to a recent paradigm shift; many cancer types are no longer regarded as a deadly disease, but as a disease with a chronic nature, requiring ongoing support and care. This is highlighted by the fact that existing theories and models of chronic disease management, such as the Chronic Care Model (CCM) and the Chronic Disease Self-Management Program have recently been introduced to cancer survivorship [
Recently, others have attempted to conceptualize patient empowerment by systematically reviewing questionnaires purporting to capture patient empowerment [
For patients with a chronic disease we previously found that there are many IT services available that are aiming to increase aspects of empowerment through Web-based interventions [
Educational services may greatly contribute to patient empowerment by providing patients with knowledge and skills. The approaches taken and the use of IT differs greatly, ranging from interactive decision tools to services that interactively deliver cognitive behavioral therapy to electronically provided survivorship care plans. Although appealing, the empowering potential of the latter service, either generated online or printed from an electronic tumor registry, seems to be mainly restricted to knowledge provision. To date, there is very little evidence of the effectiveness of providing patients with a survivorship care plan on aspects of patient empowerment [
Patient-to-patient services seemed to offer little benefit in terms of empowerment and some negative effects have been reported as well. In focus group sessions, we found that some survivors would find such a service useful, mainly for practical tips such as where to find good wigs; however, in general, they did not endorse such a feature. Many doubted the quality of the information due to lack of moderation by an HCP, and they were also reluctant in sharing their emotions via this medium [
A recent review shows that routine use of patient-reported outcomes (PROs) in clinical practice leads to better communication between patient and physician [
It remains unclear what positive effects are related to what mix of components, but a study of Baker et al [
Most portals that we reviewed are likely to make some contribution to patient empowerment. A recent systematic review questions the effectiveness of patient portals, as the data to date provide limited evidence for improved health outcomes or reduced costs [
Based on this study, we conclude that services that are able to elicit survivors´ most bothersome issues and provide them with guidance to improve these issues have great potential to empower them. Preferably, an active attempt to improve or reinforce skills (eg, their ability to cope with emotions or to deal with fatigue) is used. Services that are particularly promising in this regard are tailored ePRO systems such as SAM, ESRA-C, and OncoKompas [
Consequently, several research priorities can be pointed out. First, research needs to focus on how to best measure what survivors identify as key areas or goals that they want to work on regarding their health, and how these could be best met by existing health services, either on- or offline, in preferably a stepped-care manner. Second, research is needed to determine the optimal information provision to survivors given their informational coping styles. Third, it is important to determine the key skills that cancer survivors need, as well as the most effective ways to enhance these skills, possibly differentiated for different types of cancer. And finally, an important issue with health IT services is that there is a limited uptake. According to a large study in the United States (n=3959), overall use ranged from 3% to 78% for online diary keeping and health information seeking on the Internet, respectively. They also found that older persons, males, and those with a lower socioeconomic status were less likely to engage in a number of eHealth activities (odds ratio ~ 0.5) compared to their counterparts [
First, regarding the integrative literature search on empowerment, we did not include or exclude articles based on quality criteria, which makes it impossible to objectively assign more weight to one article over another. Furthermore, it is an inherent limitation of this review that there is a limited number of studies specifically focusing on cancer patients. However, as findings with regard to patient empowerment in the larger body of literature on chronically diseased patient populations were also reflected in the more limited literature specifically focusing on patients with cancer, we can assume that the conceptualization of empowerment applies to the cancer setting as well. Second, the review of IT services may not include every IT service available at the time of this review. This is a rapidly developing area, and thus it is difficult to be comprehensive. Rather, we have provided an overview of some of the more widely publicized IT services that serve cancer survivors. Although there are no established methods for reviewing newly developed IT services, we have suggestions for future attempts. Reviews in this area may be strengthened by searching multiple databases (eg, PubMed and Scopus), having at least two persons evaluating the eligibility, extracting features/functionalities of the services, and relating the features/functionalities to predefined quality criteria when available. For example, Williams et al reviewed online decision aids and rated them on International Patient Decision Aid Standards (IPDAS) criteria [
The major strength of this review is that it addresses both the literature on defining patient empowerment, and the literature on current IT services for cancer survivors and their possible contribution to enhancing empowerment. Another strength is the use of the integrated review method, which facilitates inclusion and integration of different sources and types of information (eg, theoretical and empirical manuscripts) in a single review [
In this paper, we have identified the key attributes of the concept of patient empowerment for chronic disease patients including cancer survivors, and we have illustrated the ways in which IT services can contribute to enhancing empowerment of cancer survivors. We found that IT services were mainly related to knowledge provision (eg, about the patients’ medical conditions) and that active approaches for skill development were limited. Future challenges will be to make these services aimed truly at the patients’ needs, effective in following up on their identified needs, and making these services attractive and easy to use for patients with varying levels of eHealth literacy and sociodemographic characteristics.
Electronic PubMed searches.
Examples of IT services with potential for empowerment of cancer survivors.
Alpe d’HuZes Cancer Rehabiliation
being autonomous and respected
cognitive behavioral therapy
Chronic Care Model
Computer-based Health Evaluation System
Comprehensive Health Enhancement Support System
electronic medical record
electronic patient-reported outcome
Electronic Self-Report Assessment for Cancer
health care provider
having knowledge
Health Level Seven
information and communication technology
Interactive Digital Education Aid
International Patient Decision Aid Standards
information technology
in vitro fertilization
Dutch Cancer Society
no positive contribution to empowerment
Preferred Reporting Items for Systematic Reviews and Meta-Analyses
patient-reported outcome
perceived support from community, family, and friends
randomized controlled trial
Reach Effectiveness Adoption Implementation Maintenance
Registrationsystem Oncological GYnecology
self-assessment and management
survivorship care plan
Sleep Healthy Using The Internet
having skills
University Medical Center
weak positive contribution to empowerment
strong positive contribution to empowerment
This research was supported by Alpe d'HuZes, a foundation which is part of the Dutch Cancer Society (KWF Kankerbestrijding). This study was part of the Alpe d’HuZes Cancer Rehabiliation (A-CaRe) Program. The authors acknowledge the A-CaRe2Move Research Group.
None declared.