Patient empowerment reflects the ability of patients to positively influence their health and health behavior such as physical activity. While interactive Web-based interventions are increasingly ...used in various chronic disease settings to enhance empowerment and physical activity, such interventions are still uncommon for cancer survivors.
The objective of this study was to systematically review the literature regarding interactive Web-based interventions. We focused on interventions aimed at increasing patient empowerment and physical activity for various chronic conditions, and explored their possible relevance for cancer survivors.
Searches were performed in PubMed, Embase, and Scopus to identify peer-reviewed papers reporting on randomized controlled trials that studied the effects of Web-based interventions. These interventions were developed for adults with diabetes, cardiovascular disease, chronic obstructive pulmonary disease, heart failure, or cancer. Intervention characteristics, effects on patient empowerment and physical activity, information on barriers to and facilitators of intervention use, users' experiences, and methodological quality were assessed. Results were summarized in a qualitative way. We used the recommendations of the Institute of Medicine (IOM) regarding cancer survivorship care to explore the relevance of the interventions for cancer survivors.
We included 19 papers reporting on trials with 18 unique studies. Significant, positive effects on patient empowerment were reported by 4 studies and 2 studies reported positive effects on physical activity. The remaining studies yielded mixed results or no significant group differences in these outcomes (ie, no change or improvement for all groups). Although the content, duration, and frequency of interventions varied considerably across studies, commonly used elements included education, self-monitoring, feedback/tailored information, self-management training, personal exercise program, and communication (eg, chat, email) with either health care providers or patients. Limited information was found on barriers, facilitators, and users' experiences. Methodological quality varied, with 13 studies being of moderate quality. The reported Web-based intervention elements appeared to be highly relevant to address the specific needs of cancer survivors as indicated by the IOM.
We identified 7 common elements of interactive, Web-based interventions in chronic disease settings that could possibly be translated into eHealth recommendations for cancer survivors. While further work is needed to determine optimal intervention characteristics, the work performed in other chronic disease settings provides a basis for the design of an interactive eHealth approach to improve patient empowerment and physical activity in cancer survivors. This may subsequently improve their health status and quality of life and reduce their need for supportive care.
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Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, UILJ, UKNU, UL, UM, UPUK
•Distance-based interventions may increase physical activity levels of cancer survivors.•Overall, reviewed distance-based interventions showed a very small and limited effect on physical activity ...behavior.•Studies are targeting a subset of cancer survivors which limits generalizability.•Many studies have methodological limitations that limits inferences that can be drawn.•New approaches are needed to facilitate and support physical activity levels of cancer survivors.
Physically active cancer survivors have a reduced risk of cancer recurrence and mortality. Given the health advantages of active lifestyles in cancer survivorship, as well as the barriers preventing physical activity (e.g., geography, time) there is a need to develop and evaluate effective physical activity interventions that employ distance-based (i.e., non face-to-face) approaches. The primary objective of this study was to provide a systematic review and meta-analysis of present-day (2013–2018) distance-based physical activity behaviour change interventions for cancer survivors.
PubMed and Embase databases were searched from November 2012 up to June 2018. Studies were included that met the following criteria: (1) written in English, (2) included adult cancer survivors (either undergoing or completed treatment), (3) was a controlled intervention study, and (4) the intervention was distance-based (delivered via distance) with no more than one face-to-face contact. Review Manager 5 (RevMan 5) software was used to perform a meta-analysis on all randomized controlled trials (RCTs) that presented self-reported or objectively measured physical activity post-intervention means and standard deviations. Risk of bias for each study was assessed using The Cochrane Risk of Bias Tool.
We included 29 RCTs. Across the 29 studies, the total number of participants in these studies was 5218. Median sample size was 95 and ranged from 19 to 463. Thirteen (45%) studies focused on breast cancer survivors and median months since diagnosis was 24 (range 6–79). Moderate-to-vigorous intensity physical activity data from 24 RCTs were included in the meta-analysis and indicated an overall small effect (standardized mean difference) of 0.21 (95% CI 0.11–0.32) favoring the interventions.
Intervention effects on physical activity were small. Drawing conclusions from these trials remains challenging given major limitations of these trials included poor methodological design, small sample sizes, lack of statistical power, homogeneous samples (e.g., caucasian, young, well-educated), and poor measures of physical activity (e.g., self-report). Relying on the present landscape of distance-based programs aiming to facilitate physical activity among cancer survivors may not be prudent.
The number of patient portals is rising, and although portals can have positive effects, their implementation has major impacts on the providing health care institutions. However, little is known ...about the organizational factors affecting successful implementation. Knowledge of the specific barriers to and facilitators of various stakeholders is likely to be useful for future implementations.
The objective of this study was to identify the barriers to and facilitators of patient portal implementation facing various stakeholders within hospital organizations in the Netherlands.
Purposive sampling was used to select hospitals of various types. A total of 2 university medical centers, 3 teaching hospitals, and 2 general hospitals were included. For each, 3 stakeholders were interviewed: (1) medical professionals, (2) managers, and (3) information technology employees. In total, 21 semistructured interviews were conducted using the Grol and Wensing model, which describes barriers to and facilitators of change in health care practice at 6 levels: (1) innovation; (2) individual professional; (3) patient; (4) social context; (5) organizational context; and (6) economic and political context. Two researchers independently selected and coded quotes by applying this model using a (deductive) directed content approach. Additional factors related to technical and portal characteristics were added using the model of McGinn et al, developed for implementation of electronic health records.
In total, we identified 376 quotes, 26 barriers, and 28 facilitators. Thirteen barriers and 12 facilitators were common for all stakeholder groups. The facilitators' perceived usefulness (especially less paperwork) was mentioned by all the stakeholders, followed by subjects' positive attitude. The main barriers were lack of resources (namely, lack of staff and materials), financial difficulties (especially complying with high costs, lack of reimbursements), and guaranteeing privacy and security (eg, strict regulations). Both similarities and differences were found between stakeholder groups and hospital types. For example, managers and information technology employees mainly considered guaranteeing privacy and security as a predominant barrier. Financial difficulties were particularly mentioned by medical professionals and managers.
Patient portal implementation is a complex process and is not only a technical process but also affects the organization and its staff. Barriers and facilitators occurred at various levels and differed among hospital types (eg, lack of accessibility) and stakeholder groups (eg, sufficient resources) in terms of several factors. Our findings underscore the importance of involving multiple stakeholders in portal implementations. We identified a set of barriers and facilitators that are likely to be useful in making strategic and efficient implementation plans.
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Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, UILJ, UKNU, UL, UM, UPUK
In patients with chronic disease, many health care professionals are involved during treatment and follow-up. This leads to fragmentation that in turn may lead to suboptimal care. Shared care is a ...means to improve the integration of care delivered by various providers, specifically primary care physicians (PCPs) and specialty care professionals, for patients with chronic disease. The use of information technology (IT) in this field seems promising.
Our aim was to systematically review the literature regarding the effectiveness of IT-supported shared care interventions in chronic disease in terms of provider or professional, process, health or clinical and financial outcomes. Additionally, our aim was to provide an inventory of the IT applications' characteristics that support such interventions.
PubMed, Scopus, and EMBASE were searched from 2006 to 2015 to identify relevant studies using search terms related to shared care, chronic disease, and IT. Eligible studies were in the English language, and the randomized controlled trials (RCTs), controlled trials, or single group pre-post studies used reported on the effects of IT-supported shared care in patients with chronic disease and cancer. The interventions had to involve providers from both primary and specialty health care. Intervention and IT characteristics and effectiveness-in terms of provider or professional (proximal), process (intermediate), health or clinical and financial (distal) outcomes-were extracted. Risk of bias of (cluster) RCTs was assessed using the Cochrane tool.
The initial search yielded 4167 results. Thirteen publications were used, including 11 (cluster) RCTs, a controlled trial, and a pre-post feasibility study. Four main categories of IT applications were identified: (1) electronic decision support tools, (2) electronic platform with a call-center, (3) electronic health records, and (4) electronic communication applications. Positive effects were found for decision support-based interventions on financial and health outcomes, such as physical activity. Electronic health record use improved PCP visits and reduced rehospitalization. Electronic platform use resulted in fewer readmissions and better clinical outcomes-for example, in terms of body mass index (BMI) and dyspnea. The use of electronic communication applications using text-based information transfer between professionals had a positive effect on the number of PCPs contacting hospitals, PCPs' satisfaction, and confidence.
IT-supported shared care can improve proximal outcomes, such as confidence and satisfaction of PCPs, especially in using electronic communication applications. Positive effects on intermediate and distal outcomes were also reported but were mixed. Surprisingly, few studies were found that substantiated these anticipated benefits. Studies showed a large heterogeneity in the included populations, outcome measures, and IT applications used. Therefore, a firm conclusion cannot be drawn. As IT applications are developed and implemented rapidly, evidence is needed to test the specific added value of IT in shared care interventions. This is expected to require innovative research methods.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, UILJ, UKNU, UL, UM, UPUK
Mutations in the RNA binding protein fused in sarcoma/translated in liposarcoma (FUS/TLS) cause amyotrophic lateral sclerosis (ALS). Although ALS-linked mutations in FUS often lead to a cytosolic ...mislocalization of the protein, the pathogenic mechanisms underlying these mutations remain poorly understood. To gain insight into these mechanisms, we examined the biochemical, cell biological and functional properties of mutant FUS in neurons. Expression of different FUS mutants (R521C, R521H, P525L) in neurons caused axonal defects. A protein interaction screen performed to explain these phenotypes identified numerous FUS interactors including the spinal muscular atrophy (SMA) causing protein survival motor neuron (SMN). Biochemical experiments showed that FUS and SMN interact directly and endogenously, and that this interaction can be regulated by FUS mutations. Immunostaining revealed co-localization of mutant FUS aggregates and SMN in primary neurons. This redistribution of SMN to cytosolic FUS accumulations led to a decrease in axonal SMN. Finally, cell biological experiments showed that overexpression of SMN rescued the axonal defects induced by mutant FUS, suggesting that FUS mutations cause axonal defects through SMN. This study shows that neuronal aggregates formed by mutant FUS protein may aberrantly sequester SMN and concomitantly cause a reduction of SMN levels in the axon, leading to axonal defects. These data provide a functional link between ALS-linked FUS mutations, SMN and neuronal connectivity and support the idea that different motor neuron disorders such as SMA and ALS may be caused, in part, by defects in shared molecular pathways.
Abstract Mutations in the valosin-containing protein (VCP) gene were recently reported to be the cause of 1%–2% of familial amyotrophic lateral sclerosis (ALS) cases. VCP mutations are known to cause ...inclusion body myopathy (IBM) with Paget's disease (PDB) and frontotemporal dementia (FTD). The presence of VCP mutations in patients with sporadic ALS, sporadic ALS-FTD, and progressive muscular atrophy (PMA), a known clinical mimic of inclusion body myopathy, is not known. To determine the identity and frequency of VCP mutations we screened a cohort of 93 familial ALS, 754 sporadic ALS, 58 sporadic ALS-FTD, and 264 progressive muscular atrophy patients for mutations in the VCP gene. Two nonsynonymous mutations were detected; 1 known mutation (p.R159H) in a patient with familial ALS with several family members suffering from FTD, and 1 mutation (p.I114V) in a patient with sporadic ALS. Conservation analysis and protein prediction software indicate the p.I114V mutation to be a rare benign polymorphism. VCP mutations are a rare cause of familial ALS. The role of VCP mutations in sporadic ALS, if present, appears limited.
Background Physical exercise is an intervention that might protect against doxorubicin-induced cardiotoxicity. In this meta-analysis and systematic review, we aimed to estimate the effect of exercise ...on doxorubicin-induced cardiotoxicity and to evaluate mechanisms underlying exercise-mediated cardioprotection using (pre)clinical evidence. Methods and Results We conducted a systematic search in PubMed, Embase, and Cochrane Central Register of Controlled Trials (CENTRAL) databases. Cochrane's and Systematic Review Centre for Laboratory Animal Experimentation (SYRCLE) risk-of-bias tools were used to assess the validity of human and animal studies, respectively. Cardiotoxicity outcomes reported by ≥3 studies were pooled and structured around the type of exercise intervention. Forty articles were included, of which 3 were clinical studies. Overall, in humans (sample sizes ranging from 24 to 61), results were indicative of exercise-mediated cardioprotection, yet they were not sufficient to establish whether physical exercise protects against doxorubicin-induced cardiotoxicity. In animal studies (n=37), a pooled analysis demonstrated that forced exercise interventions significantly mitigated in vivo and ex vivo doxorubicin-induced cardiotoxicity compared with nonexercised controls. Similar yet slightly smaller effects were found for voluntary exercise interventions. We identified oxidative stress and related pathways, and less doxorubicin accumulation as mechanisms underlying exercise-induced cardioprotection, of which the latter could act as an overarching mechanism. Conclusions Animal studies indicate that various exercise interventions can protect against doxorubicin-induced cardiotoxicity in rodents. Less doxorubicin accumulation in cardiac tissue could be a key underlying mechanism. Given the preclinical evidence and limited availability of clinical data, larger and methodologically rigorous clinical studies are needed to clarify the role of physical exercise in preventing cardiotoxicity in patients with cancer. Registration URL: https://www.crd.york.ac.uk/prospero; Unique identifier: CRD42019118218.
An optimal relative dose intensity (RDI) of adjuvant chemotherapy is associated with better survival in patients with breast cancer. Little is known about the role of physical fitness in attaining an ...adequate RDI in patients with early-stage breast cancer. We investigated the association between pretreatment physical fitness and RDI in this population.
We pooled individual patient data from two randomized exercise trials that studied exercise programs in early breast cancer: the Physical Exercise During Adjuvant Chemotherapy Effectiveness Study (n = 230) and the Physical Activity during Chemotherapy Treatment (n = 204) study. Logistic regression models were used to evaluate the association between pretreatment fitness and achieving an optimal RDI (≥85%). In addition, we added an interaction term to the model to explore the potential moderating effect of participating in an exercise program.
Data were available for 419 patients (mean age at diagnosis, 50.0 ± 8.6 yr). In the total sample, lower pretreatment physical fitness was associated with significantly lower odds of achieving ≥85% RDI: age-adjusted odds ratio (OR) of 0.66 (95% confidence interval (CI), 0.46-0.94). In patients allocated to the supervised exercise intervention during chemotherapy (n = 173), the association between pretreatment physical fitness and RDI was almost completely mitigated (OR, 0.95 (95% CI, 0.54-1.56)), whereas it was more pronounced in patients who received care as usual (n = 172; OR, 0.31 (95% CI, 0.13-0.63); Pinteraction = 0.022).
Early-stage breast cancer patients with relatively lower levels of pretreatment physical fitness have lower odds of achieving an optimal dose of chemotherapy. Given that physical fitness is modifiable and our results suggest that following a moderate-to-high intensity exercise training during chemotherapy could improve treatment completion, clinicians should not refrain from referring patients to supportive exercise programs because of low fitness.
Within long-term care, a culture change (e.g. focus on increasing autonomy in everyday life) is leading to the development of innovative living arrangements for older adults. Insight into ...characteristics of innovative living arrangements, which are described as an alternative to regular nursing homes, is lacking. This review aims to provide an overview of innovative living arrangements and to describe their defining characteristics.
A scoping review was performed following the framework of Arksey and O'Malley. The preferred reporting items for systematic reviews and meta-analyses with extension, for scoping reviews (PRISMA-ScR) was also followed. The databases PubMed, PsycInfo, CINAHL, and Web of Science were searched. Articles, published between 2012 and 2023 were included when they presented an innovative living arrangement as an alternative to regular nursing homes. A thematic analysis was performed, describing the physical, social, and organizational environment of the innovative living arrangements.
Fifty-six articles were identified describing seven types of distinct innovative living arrangements: small-scale living, the green house model, shared housing arrangements, green care farms, dementia villages, group homes, intergenerational living, and an 'other' category. The themes included supporting autonomy and creating a small-scale and/or homelike environment, which were emphasized in most innovative living arrangements. Other themes, such as involvement of the community, focus on nature, integration of work tasks, and involvement of family members, were emphasized in a subsection of the described living arrangements. Twenty-eight articles reported on the effects of the innovative living environment on residents, family members, or staff members. Most articles (N = 22) studied resident-related outcomes, focusing mainly on quality of life and aspects of daily life.
More insight into the mechanisms of the social and organizational environments is needed, which may lead to greater transparency and homogeneity regarding the description of living arrangements. This review shows that more knowledge is needed about the potential key elements of innovative living arrangements, especially related to their social and organizational environment. This may provide a better guide for developers within long-term care.
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.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, UILJ, UKNU, UL, UM, UPUK
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