Patient empowerment for cancer patients through a novel ICT infrastructure.

As a result of recent advances in cancer research and "precision medicine" approaches, i.e. the idea of treating each patient with the right drug at the right time, more and more cancer patients are being cured, or might have to cope with a life with cancer. For many people, cancer survival today means living with a complex and chronic condition. Surviving and living with or beyond cancer requires the long-term management of the disease, leading to a significant need for active rehabilitation of the patients. In this paper, we present a novel methodology employed in the iManageCancer project for cancer patient empowerment in which personal health systems, serious games, psychoemotional monitoring and other novel decision-support tools are combined into an integrated patient empowerment platform. We present in detail the ICT infrastructure developed and our evaluation with the involvement of cancer patients on two sites, a large-scale pilot for adults and a small-scale test for children. The evaluation showed mixed evidences on the improvement of patient empowerment, while ability to cope with cancer, including improvement in mood and resilience to cancer, increased for the participants of the adults' pilot.

Telemedicine Use Among Caregivers of Cancer Patients: Systematic Review.

BACKGROUND: The number of published studies and systematic reviews examining different telehealth interventions targeting patients and their effects on patients' well-being and quality of life have grown in recent decades. However, the use of telemedicine tools aimed at the family members and caregivers of adult cancer patients is less defined. OBJECTIVE: We aimed to conduct a systematic review to provide a more complete picture regarding telemedicine tools for informal caregivers (usually family members or close friends) implemented in all phases of cancer care. More specifically, the review aimed to better describe the study samples' characteristics, to analyze measured outcomes and the specific questionnaires used to assess them, and to describe in depth the implemented interventions and their formats. Finally, we examined the role of telehealth, and usability and feasibility trends in supporting patients' caregivers. METHODS: We systematically searched the literature in the following databases: Web of Science, Cochrane Library, PubMed, Scopus, CINAHL, MEDLINE, EMBASE, Google Scholar, and PsycINFO. Inclusion criteria were being written in English, published in peer-reviewed journals, describing a telehealth-implemented intervention, and focusing on caregivers of adult cancer patients at any stage of the disease. We selected studies published up to November 2017. We critically appraised included articles using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses and graded the quality of evidence by outcome using the Centre for Evidence-Based Medicine framework. RESULTS: We included 24 studies in the final selection. In 21 of the 24 studies, the patient-caregiver dyad was analyzed, and the study population dealt with different types of cancer at different stages. Included studies considered the caregiver's condition from both an individual and a relational point of view. Along with psychosocial variables, some studies monitored engagement and user satisfaction regarding Web-based platforms or telehealth interventions. All studies reported significant improvements in some of the investigated areas, but they often showed small effect sizes. Two types of telehealth intervention formats were used: Web-based platforms and telephone calls. Some of the included studies referred to the same project, but on study samples with different cancer diagnoses or with new versions of previously developed interventions. CONCLUSIONS: Reported outcomes seem to suggest that we are in an exploratory phase. More detailed and targeted research hypotheses are still needed. Clarifying caregivers' needs related to telehealth tools and better defining outcome measures may yield more significant results.

Maternal Care Determinant of Longevity?

Maternal care is an essential early environment in mammals that ensures emotional regulation and adaptive fitness of progeny. Longevity and healthy aging are associated with favorable environmental factors including fitting social and behavioral features. In the present review, we discuss the findings that link rearing conditions and early maternal care with life span and aging from an evolutionary, psychological, and molecular perspective. The quality of maternal care may influence internal adaptation through a variety of parallel mechanisms including emotional regulation, stress sensitivity, coping and other behavioral strategies in response to events requiring adaptation. From a biological perspective, it regulates physiological pathways that may persist in adulthood through epigenetic mechanisms, influencing disease susceptibility and, potentially, longevity. Abnormal maternal care induces maladaptation that persists over the life span, may accelerate the onset of aging associated diseases, and shorten life span. This may have important implications in the development of preventive approaches and early interventions.

Spatial remapping in the audio-tactile ventriloquism effect: a TMS investigation on the role of the ventral intraparietal area.

Previous studies have suggested that the putative human homologue of the ventral intraparietal area (hVIP) is crucially involved in the remapping of tactile information into external spatial coordinates and in the realignment of tactile and visual maps. It is unclear, however, whether hVIP is critical for the remapping process during audio-tactile cross-modal spatial interactions. The audio-tactile ventriloquism effect, where the perceived location of a sound is shifted toward the location of a synchronous but spatially disparate tactile stimulus, was used to probe spatial interactions in audio-tactile processing. Eighteen healthy volunteers were asked to report the perceived location of brief auditory stimuli presented from three different locations (left, center, and right). Auditory stimuli were presented either alone (unimodal stimuli) or concurrently to a spatially discrepant tactile stimulus applied to the left or right index finger (bimodal stimuli), with the hands adopting either an uncrossed or a crossed posture. Single pulses of TMS were delivered over the hVIP or a control site (primary somatosensory cortex, SI) 80 msec after trial onset. TMS to the hVIP, compared with the control SI-TMS, interfered with the remapping of touch into external space, suggesting that hVIP is crucially involved in transforming spatial reference frames across audition and touch.

Processing of featural and configural aspects of faces is lateralized in dorsolateral prefrontal cortex: a TMS study.

Facial recognition relies on distinct and parallel types of processing: featural processing focuses on the individual components of a face (e.g., the shape or the size of the eyes), whereas configural (or "relational") processing considers the spatial interrelationships among the single facial components (e.g., distance of the mouth from the nose). Previous neuroimaging evidence has suggested that featural and configural processes may rely on different brain circuits. By using rTMS, here we show for the first time a double dissociation in dorsolateral prefrontal cortex for different aspects of face processing: in particular, TMS over the left middle frontal gyrus (BA8) selectively disrupted featural processing, whereas TMS over the right inferior frontal gyrus (BA44) selectively interfered with configural processing of faces. By establishing a causal link between activation in left and right prefrontal areas and different modes of face processing, our data extend previous neuroimaging evidence and may have important implications in the study of face-processing deficits, such as those manifested in prosopagnosia and autistic spectrum disorders.

The early-life stress induced by oxytocin inhibition in p53 knockout mouse dams increases adulthood tumorigenesis in first and second generations.

BACKGROUND: Early-life stress due to poor parental care has been suggested to increase cancer risk, though, so far, no experimental evidence established a link between defective parental behavior and spontaneous tumorigenesis in progeny. Essential maternal behavior is regulated, in particular, by the oxytocin (OT) hormonal circuit, which in turn responds to stimuli from the offspring and impinges on the central nervous systems. METHODS: By providing L-368,899 OT receptor (OTR) inhibitor to lactating mothers, we set up a model of defective maternal care in p53 knockout mice. RESULTS: The progeny of these dams showed, later in life, higher cortisol levels, shortened life span and increased tumorigenic potential of bone marrow cells (BMC). Notably, these phenotypes were transmitted to the following generation. CONCLUSIONS: Therefore, the inhibition of OT function in mothers is a novel paradigm of early-life stress that is inherited across generations and increases cancer risk in tumor-prone mice.

Not Just a Pill: Toward a Tailored Antismoking Intervention for Respiratory Diseases.

Tobacco cigarette smoking is a serious epidemic that kills several million people each year. Nevertheless, a significant percentage of patients with respiratory diseases continue to smoke after diagnosis, despite the assistance offered, thus reducing the efficacy of the treatments prescribed by the health providers and dramatically increasing the mortality rate. International guidelines have advocated the importance of including smoking cessation protocols in the management of patients' respiratory conditions and pointed out the need to deliver integrated and tailored interventions. Consistently with this framework, the commentary proposes a new clinical approach to smoking cessation in patients with respiratory diseases. This approach integrates, according to P5 personalized medicine, pharmacological and psychological aspects affecting smoking behaviors, overcoming the traditional approach mainly based on the pharmacological interventions.

Development and validation of the Family Resilience (FaRE) Questionnaire: an observational study in Italy.

OBJECTIVE: Develop and validate an instrument to assess family resilience and, more specifically, the family dynamics and resources, estimating the adaptation flexibility to cancer disease. Cohesion, communication, coping style and relational style were considered as critical functional areas in the construction of the instrument. DESIGN: Two cross-sectional studies. Study 1: identification of factorial structure of the questionnaire in two samples with different cancer sites. Study 2: validation of the questionnaire in patients with cancer in two different phases of their therapeutic pathway. PARTICIPANTS AND SETTING: A total of 213 patients with a histologically confirmed non-metastatic breast or prostate cancer and 209 caregivers were recruited for the two studies from an oncological hospital in Italy. OUTCOME MEASURES: The Resilience Scale for Adults and the Family Resilience (FaRE) Questionnaire, developed by the researchers, were administered to all patients and caregivers who gave consent. RESULTS: In study 1, the 60-item version of the FaRE Questionnaire underwent discriminant and construct validity, internal consistency and factorial analysis. Comparisons between patient and caregiver populations showed that patients perceived higher levels of family resources (p=0.048) and that patients with prostate cancer perceived less social support compared with patients with breast cancer (p=0.002). Factor analysis demonstrated four domains: communication and cohesion, perceived social support, perceived family coping, and religiousness and spirituality. In study 2, the validity and factorial structure of the final scale, composed of 24 items, were confirmed. The Cronbach alpha of all subscales was above 82. Normative values for patients with breast cancer can provide indications of family resilience levels. CONCLUSIONS: Preliminary findings showed acceptable psychometric properties for the FaRE Questionnaire to evaluate family resilience in oncological patients and their caregivers. Further research should test its sensibility to change to assess its use as a psychoemotional monitoring tool and its validity in other medical contexts.

Family Resilience in the Oncology Setting: Development of an Integrative Framework.

Resilience is a concept that has received burgeoning interest in the last decades. Researchers have been fascinated by the ability of some individuals to bounce back from an adverse event and adapt to extremely challenging situations. More recently family resilience, namely the potential resources of the family's system, has been considered due to numerous individual studies highlighting the crucial influence of relationships with significant others in mediating adaptation and recovery. In this article, a brief overview of the theoretical literature on individual and family resilience is presented. Following, current empirical literature on resilience in the context of oncology is evaluated. Although family resilience is considered a dynamic process unique to each family unit, some common resources and strengths that can help families face significant adversities, such as cancer, can be identified. This said to date there is no family resilience framework applied specifically to the cancer trajectory. Drawing from previous studies, we sought to provide a clinical resilience model for families living with cancer, with the aim of mapping those resources that can empower families to deal with prolonged adversity. This framework can serve as general guideline for health professionals in assessing family strengths, promoting specific family processes and facilitating adaptation to the cancer experience.

Development of an eHealth tool for cancer patients: monitoring psycho-emotional aspects with the Family Resilience (FaRe) Questionnaire.

In the last decade, clinicians have started to shift from an individualistic perspective of the patient towards family-centred models of care, due to the increasing evidence from research and clinical practice of the crucial role of significant others in determining the patient's adjustment to cancer disease and management. eHealth tools can be considered a means to compensate the services gap and support outpatient care flows. Within the works of the European H2020 iManageCancer project, a review of the literature in the field of family resilience was conducted, in order to determine how to monitor the patient and his/her family's resilience through an eHealth platform. An analysis of existing family resilience questionnaires suggested that no measure was appropriate for cancer patients and their families. For this reason, a new family resilience questionnaire (named FaRe) was developed to screen the patient's and caregiver's psycho-emotional resources. Composed of 24 items, it is divided into four subscales: Communication and Cohesion, Perceived Family Coping, Religiousness and Spirituality, and Perceived Social Support. Embedded in the iManageCancer eHealth platform, it allows users and clinicians to monitor the patient's and the caregivers' resilience throughout the cancer trajectory.

mHealth and telemedicine apps: in search of a common regulation.

Developments in information and communication technology have changed the way healthcare processes are experienced by both patients and healthcare professionals: more and more services are now available through computers and mobile devices. Smartphones are becoming useful tools for managing one's health, and today, there are many available apps meant to increase self-management, empowerment and quality of life. However, there are concerns about the implications of using mHealth and apps: data protection issues, concerns about sharing information online, and the patients' capacity for discerning effective and valid apps from useless ones. The new General Data Protection Regulation has been introduced in order to give uniformity to data protection regulations among European countries but shared guidelines for mHealth are yet to develop. A unified perspective across Europe would increase the control over mHealth exploitation, making it possible to think of mHealth as effective and standard tools for future medical practice.

From Epigenetic Associations to Biological and Psychosocial Explanations in Mental Health.

The development of mental disorders constitutes a complex phenomenon driven by unique social, psychological and biological factors such as genetics and epigenetics, throughout an individual's life course. Both environmental and genetic factors have an impact on mental health phenotypes and act simultaneously to induce changes in brain and behavior. Here, we describe and critically evaluate the current literature on gene-environment interactions and epigenetics on mental health by highlighting recent human and animal studies. We furthermore review some of the main ethical and social implications concerning gene-environment interactions and epigenetics and provide explanations and suggestions on how to move from statistical and epigenetic associations to biological and psychological explanations within a multi-disciplinary and integrative approach of understanding mental health.

Memories of paternal relations are associated with coping and defense mechanisms in breast cancer patients: an observational study.

BACKGROUND: Breast cancer diagnosis and treatment represent stressful events that demand emotional adjustment, thus recruiting coping strategies and defense mechanisms. As parental relations were shown to influence emotion regulation patterns and adaptive processes in adulthood, the present study investigated whether they are specifically associated to coping and defense mechanisms in patients with breast cancer. METHODS: One hundred and ten women hospitalized for breast cancer surgery were administered questionnaires assessing coping with cancer, defense mechanisms, and memories of parental bonding in childhood. RESULTS: High levels of paternal overprotection were associated with less mature defenses, withdrawal and fantasy and less adaptive coping mechanisms, such as hopelessness/helplessness. Low levels of paternal care were associated with a greater use of repression. No association was found between maternal care, overprotection, coping and defense mechanisms. Immature defenses correlated positively with less adaptive coping styles, while mature defenses were positively associated to a fighting spirit and to fatalism, and inversely related to less adaptive coping styles. CONCLUSIONS: These data suggest that paternal relations in childhood are associated with emotional, cognitive, and behavioral regulation in adjusting to cancer immediately after surgery. Early experiences of bonding may constitute a relevant index for adaptation to cancer, indicating which patients are at risk and should be considered for psychological interventions.

A Qualitative Investigation on Patient Empowerment in Prostate Cancer.

Purpose: Men with prostate cancer often describe low levels of empowerment. eHealth interventions may represent useful tools to deliver care and education and to meet patients' needs within an empowerment framework. In order to design a platform for cancer patients' empowerment within the H2020 iManageCancer project, the perspective of the target population for the platform was assessed. The present study aims to assess the qualitative experience of prostate cancer patients during treatment in order to provide insights for clinical practice with a particular focus on the design of a web platform to promote cancer patients' empowerment. Methods: Ten patients undergoing radiation therapy treatment took part in a semi-structured interview to explore different aspects of patient empowerment. Four main thematic areas were addressed: patient-healthcare providers' communication, decision-making, needs, and resources. A qualitative approach using thematic analysis was followed. Results: Half of the patients reported little to no possibility to share information and questions with healthcare providers. With regards to decision-making, the role of healthcare providers was perceived as directive/informative, but half of the patients perceived to assume an active role in at least one interaction. Difficulties and needs included the choice of the specialist or of the structure after diagnosis, clinicians' support in self-management, surgical consequences, and side effects, preparation for radiation therapy. Resources included family and social support both from a practical and from an emotional perspective, coping style, and work schedule management. Conclusions: These results suggest that relations with healthcare providers should be supported, especially immediately after diagnosis and after surgery. Support to self-management after surgery and at the beginning of radiation therapy treatment also constitutes a priority. The adoption of a personalized approach from the beginning of prostate cancer care flow may promote patient empowerment, overcoming the aforementioned needs and mobilizing resources. The social network represents an important resource that could be integrated in interventions. These considerations will be taken into account in the design of a cancer self-management platform aiming to increase patients' empowerment.

The choice dilemma in chronic hematological conditions: Why choosing is not only a medical issue? A psycho-cognitive perspective.

Research in cognitive psychology focused on risk perception and decision making was shown to facilitate treatment choice and patient's satisfaction with decision in a number of medical conditions, increasing perceived alliance between patient and physician, and adherence to treatment. However, this aspect has been mostly neglected in the literature investigating choice of treatment for chronic hematological conditions. In this paper, a patient centered model and a shared decision making (SDM) approach to treatment switch in chronic hematological conditions, in particular chronic myeloid leukemia, atrial fibrillation, and ß-thalassemia is proposed. These pathologies have a series of implications requiring important decisions about new available treatments. Although new generation treatments may provide a significant improvement in patient's health and health-related quality of life (HrQoL), a significant percentage of them is uncertain about or refuse treatment switch, even when strongly suggested by healthcare guidelines. Possible cognitive and emotional factors which may influence decision making in this field and may prevent appropriate risk-and-benefits evaluation of new treatment approaches are reviewed. Possible adaptive strategies to improve quality of care, patient participation, adherence to treatment and final satisfaction are proposed, and implications relatively to new treatment options available are discussed.

Stress Exposure in Significant Relationships Is Associated with Lymph Node Status in Breast Cancer.

OBJECTIVE: Life stress exposure may impact on health and disease. Previous literature showed that stressful life events are associated with cancer incidence, survival and mortality. In animal models, patterns of maternal care have been shown to critically affect stress sensitivity and immunity trajectories later in life, by modifying DNA methylation during critical periods early in life. However, the role of parental care in breast cancer progression and survival has only limitedly been explored. Here, we investigated whether these factors may be linked to biological prognostic variables. METHODS: One hundred twenty-three women hospitalized for surgery of primary breast cancer completed a questionnaire assessing parental bonding. Stressful events throughout the life span were also assessed. RESULTS: We found that the absence of optimal parental relationships is significantly associated with an increased risk of lymph node involvement, adjusting for confounders, while cumulative stress in the area of sentimental relationships is borderline significantly associated with the same prognostic factor. CONCLUSIONS: Our results suggest that parental bonding and sentimental relations may have a role in breast cancer progression. These variables represent an important evolutionary aspect which may modulate cancer progression through psycho-physiological stress pathways and influence the immune system.

Psycho-emotional tools for better treatment adherence and therapeutic outcomes for cancer patients.

Personalized medicine should target not only the genetic and clinical aspects of the individual patients but also the different cognitive, psychological, family and social factors involved in various clinical choices. To this direction, in this paper, we present instruments to assess the psycho-emotional status of cancer patients and to evaluate the resilience in their family constructing in such a way an augmented patient profile. Using this profile, 1) information provision can be tailored according to patients characteristics; 2) areas of functioning can be monitored both by the patient and by the clinicians, providing suggestions and alerts; 3) personalized decision aids can be develop to increase patient's participation in the consultation process with their physicians and improve their satisfaction and involvement in the decision-making process. Our preliminary evaluation shows promising results and the potential benefits of the tools.

The role of the occipital face area in holistic processing involved in face detection and discrimination: A tDCS study.

OBJECTIVE: The aim of this study was to examine the role of occipital face area (OFA) in mediating observers' tendency to perceive faces as "wholes" (holistic processing) both when detecting and discriminating faces. To investigate this issue, we modulated OFA activity using transcranial direct current stimulation (tDCS). METHOD: In Experiment 1, participants performed a face detection task (the Mooney faces task) and a face discrimination task (the Composite faces task), which both assess holistic face processing. In Experiment 2, participants were asked to detect both Mooney faces and Mooney objects, to test face selectivity of OFA. In each experimental session, the tasks were presented once before (pre) and once after (post) administration of 20 min of excitability increasing anodal tDCS (real) and sham stimulation over the putative OFA. RESULTS: Compared with sham stimulation, we found that real anodal tDCS interfered with both Mooney faces and objects detection, whereas it had no effect on holistic processing involved in face discrimination, as measured by the Composite faces task. CONCLUSIONS: Our results suggest that OFA is causally implicated in facial detection at least in degraded conditions (i.e., when the "face" signal needs to be extracted from a noisy background). In turn, our data do not implicate OFA in holistic processing in face discrimination. Finally, our data suggest a possible role of OFA in categorization of other nonface stimuli, a conclusion that must be taken with caution, as stimulation over OFA may affect object-selective adjacent regions.