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Cancer prevention and control services worldwide must actively rebuild and contribute to improved health systems resilience alongside and beyond the COVID-19 (SARS-CoV-2 coronavirus disease) pandemic, especially in low- and middle-income countries. Cancer advocacy groups should respond to this unprecedented challenge as an opportunity to bolster community and patient involvement in research and clinical practice that is adjusted to local needs and circumstances. This short communication provides a synthesis of these critical challenges and, stemming from the pioneering activities of Gordon McVie on patient empowerment, urges policy makers and researchers to develop new implementation strategies that start from the social, economic and health consequences of the COVID-19 pandemic to overcome roadblocks in the access to cancer care. We propose that developing the domain of collaborative implementation research in national cancer control plans will be the key to consolidate patient-centred services with both an equity lens and a focus on integration of new technologies as all countries drive towards the 2030 goals of universal health coverage. [ABSTRACT FROM AUTHOR]

Background: The impact of neobladder and urostomy on bladder cancer patient's health-related quality of life (HR-QoL) is controversial and many issues currently remain underinvestigated. Initial studies pointed out that the emotional responses of caregivers might be 'contagious', influencing emotional reactions in bladder cancer patients undergoing radical cystectomy. Methods: Three hundred and eighty-two bladder cancer patients (aged M = 67.29 years; SD = 9.23) (16.9% (65) were female and 82.9% (319) were male) and their caregivers were enrolled. Data were collected prospectively: at TO (1 month before the surgery), at T1 (2 weeks after the surgery, at patient discharge from the hospital) and at T2 (6-month follow-up). At each time point (TO, T1 and T2), a set of questionnaires (EORT QLQ-C30 and emotion thermometer) were given to patients and their caregivers. Results: All patients reported a general improvement in the HR-QoL and global health status/QoL from TO to T2 (p < 0.001). No significant differences were observed between neobladder and urostomy. At T0, the emotional thermometer total scoring in caregivers was positive in relation to HR-QoL (p < 0.001) and negative in relation to the patient's perception of QoL (p < 0.001) and global health (p < 0.001). Similar trends were observed at T1 and T2. Conclusions: These results suggest that patients and their caregiver's emotional reactions to cancer are deep-rooted and strongly interconnected, and they provide innovative insights for the clinical management of bladder cancer patients. [ABSTRACT FROM AUTHOR]

Integrating the psychosocial perspective in oncology is warranted. Here, we introduce a structured psychological intervention, the clinical-care focused psychological interview (CLiC), to address patients' needs in the relationship with health professionals, clinical pathway and decision-making process. The perceived utility and feasibility of the CLiC were evaluated in a preliminary sample of 30 patients who were candidates to undergo a radical cystectomy at the European Institute of Oncology, Milan, Italy. Patients reported a very high satisfaction with the interview, because it prepared them for their upcoming surgery by gathering more information about their clinical pathway and allowed them to discover the information they still needed. 30% stated that CLiC helped them to reorganise their thoughts and 36.7% understood the role of psychological intervention in the clinical pathway. Only 20% considered the CLiC useful in helping to build their relationship with the clinical staff. Before an invasive surgery such as radical cystectomy, patients' need for information regarding the upcoming surgery seems to prevail. Knowing the future consequences and adjusting toward the disease could be paramount for patients in facing uncertainty and they might feel that creating a relationship with physicians could be a secondary issue. However, our data show that a structured psychological intervention such as the CLiC interview can collect important information for patients and healthcare professionals to develop real patient-centred care. [ABSTRACT FROM AUTHOR]

Objectives: We performed an observational prospective cohort study to investigate post-traumatic stress symptoms, emerging after cancer diagnosis, which could influence patients’ short- and long-term adjustment to illness, in order to foster screening measures and management of psychological factors in daily clinical pathways. Methods: Patients’ post-traumatic stress symptoms, psychological well-being and perceived quality of life were assessed through standardised questionnaires. The Profile of Mood States questionnaire was administered at pre-operative assessment (T0), surgical admission (T1) and discharge from hospital (T2). The Impact of Event Scale and the State-Trait Anxiety Inventory were administered at T0, T1, T2 and 2 years after discharge (T3). At 2-year follow-up, women were also asked to rate their perceived quality of life on a 0–10 visual analogue scale. Results: Between January 2014 and April 2015, 150 women were enrolled. Results showed that more than 90% of patients experienced post-traumatic stress symptoms after cancer diagnosis (14% with severe symptoms and 76.7% with moderate symptoms) and post-traumatic stress disorder (PTSD) symptoms that persisted up to the 2-year from discharge follow-up, with significant improvement only 2 years after hospital discharge. In particular, mediation models showed that intrusive thoughts impede mood adjustment to the disease during the pre-surgical phase, with anxiety amplifying the negative effect, while symptoms of avoidance are more detrimental in the long term for patients’ quality of life. Conclusion: PTSD symptom clusters have different influence on short- and long-term reaction to illness. Based on this evidence, appropriate interventions to manage PTSDs in the context of oncology should be developed. [ABSTRACT FROM AUTHOR]

Introduction: Despite the attempt to make decisions based on evidence, doctors still have to consider patients’ choices which often involve other factors. In particular, emotions seem to influence the way that options and the surrounding information are interpreted and used. Objective: The objective of the present review is to provide a brief overview of research on decision making and cancer with a specific focus on the role of emotions. Method: Thirty-nine studies were identified and analysed. Most of the studies investigated anxiety and fear. Worry was the other psychological factor that, together with anxiety, played a crucial role in cancer-related decision-making. Results: The roles of fear, anxiety and worry were described for detection behaviour, diagnosis, choice about prevention and curative treatments and help-seeking behaviour. Results were inconsistent among the studies. Results stressed that cognitive appraisal and emotional arousal (emotion’s intensity level) interact in shaping the decision. Moderate levels of anxiety and worry improved decision-making, while low and high levels tended to have no effect or a hindering effect on decision making. Moderating factors played an under-investigated role. Conclusions: Decision making is a complex non-linear process that is affected by several factors, such as, for example, personal knowledge, past experiences, individual differences and certainly emotions. Research studies should investigate further potential moderators of the effect of emotions on cancer-related choice. Big data and machine learning could be a good opportunity to test the interaction between a large amount of factors that is not feasible in traditional research. New technologies such as eHealth and virtual reality can offer support for the regulation of emotions and decision making. [ABSTRACT FROM AUTHOR]

Patient empowerment is a multi-factorial concept and its relevance has led to a growing body of literature; despite this attention, there is still no agreement regarding the elements that define its expression. While several studies have already investigated the positive effect of empowerment interventions on the care process outcome, the aim of this study is to investigate which factors can foster an empowered management of the cancer condition from the patient’s perspective. To examine patients’ perception of empowerment enablers, we asked for participants’ input on the role of three factors frequently cited as positively affected by empowerment: care quality, perception of direct control and relationships within the care context, during the care process. Three focus groups were conducted with 34 cancer patients. The results highlight the perception of direct control on their treatment as the least valued element (2.87, SD 0.566) when compared with care quality (3.75, SD 0.649) and relational support in the care context (3.91, SD 0.274). Unlike traditional approaches to empowerment, patient’s expression of empowerment does not mainly reside in the direct control of their condition as much as in an active role within the relationship with caretakers, such as the ability to choose the doctor, the care team or the health organisation in charge of their healthcare. Emerging aspects from this analysis of patient’s perspective are central in order to adequately consider empowerment in the care process and to provide more effective care strategies. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objective: To investigate patients' satisfaction and perceived utility for psychological consultations delivered by clinical psychologists in a sample of gynaecological cancer patients hospitalised for surgery. Methods: A total of 51 gynaecological cancer patients who scored higher than four on the distress thermometer (DT) were proposed and received a psychological consultation during hospitalisation for surgery. After six months from discharge, patients were asked, during a telephone interview, to rate their level of distress post-treatment, their perceived satisfaction, and usefulness of the psychological intervention received. Results: At the time of the telephone interview, the distress levels stated by patients tended to be lower than those at hospital admission, and around 61% of the patients expressed maximum satisfaction with psychological intervention. Among these, 60.8% rated the psychological consultation useful for dealing with the hospitalisation itself, 45.1% useful for dealing with personal issues and 58.8% for dealing with issues related to returning home. People who were at their first diagnosis and those who had no other reason to be distressed beyond their cancer found psychological support significantly more useful for facing up to personal issues. Conclusions: Patients are highly satisfied with integrative psychological interventions delivered by clinical psychologists in a medical setting such as that of gynaecological cancer surgery and from the six-month follow-up, it emerged that such interventions help in promoting patients' adjustment to the phase of hospitalisation and post-hospital discharge. [ABSTRACT FROM AUTHOR]

The uniqueness of a patient as determined by the integration of clinical data and psychological aspects should be the aspired aim of a personalized medicine approach. Nevertheless, given the time constraints usually imposed by the clinical setting, it is not easy for physicians to collect information about the patient's unique mental dimensions and needs related to her illness. Such information may be useful in tailoring patient-physician communication, improving the patient's understanding of provided information, her involvement in the treatment process, and in general her empowerment during and after the therapeutic journey. The primary objective of this study is to evaluate the effect of an interactive empowerment tool (IEm) on enhancing the breast cancer patient-physician experience, in terms of increasing empowerment, i.e. by providing physicians with a personalised patient's profile, accompanied by specific recommendations to advise them how to interact with each individual patient on the basis of her personal profile. The study will be implemented as a two-arm randomised controlled trial with 100 adult breast cancer patients who fill in the ALGA-BC questionnaire, a computerised validated instrument to evaluate the patient's physical and psychological characteristics following a breast cancer diagnosis. The IEm tool will collect and analyse the patient's answers in real time and send them, together with specific recommendations to the physician's computer immediately before physician's first encounter with the patient. Patients will be randomised to either the intervention group using the IEm tool or to a control group who will only fill in the questionnaire without taking advantage of the tool (physicians will not receive the patient's profile). The proposed approach is supposed to improve the patient-physician communication leading to increased patient participation in the therapeutic process as a consequence leading to improvement in patient empowerment and personalisation of care. [ABSTRACT FROM AUTHOR]

In an epoch where shared decision making is gaining importance, a patient's commitment to and knowledge about his/her health condition is becoming more and more relevant. Health literacy is one of the most important factors in enhancing the involvement of patients in their care. Nevertheless, other factors can impair patient processing and understanding of health information: psychological aspects and cognitive style may affect the way patients approach, select, and retain information. This paper describes the development and validation of a short and easy to fill-out questionnaire that measures and collects psycho-cognitive information about patients, named ALGA-C. ALGA-C is a multilingual, multidevice instrument, and its validation was carried out in healthy people and breast cancer patients. In addition to the aforementioned questionnaire, a patient profiling mechanism has also been developed. The ALGA-C Profiler enables physicians to rapidly inspect each patient's individual cognitive profile and see at a glance the areas of concern. With this tool, doctors can modulate the language, vocabulary, and content of subsequent discussions with the patient, thus enabling easier understanding by the patient. This, in turn, helps the patient formulate questions and participate on an equal footing in the decision-making processes. Finally, a preview is given on the techniques under consideration for exploiting the constructed patient profile by a personal health record (PHR). Predefined rules will use a patient's profile to personalise the contents of the information presented and to customise ways in which users complete their tasks in a PHR system. This optimises information delivery to patients and makes it easier for the patient to decide what is of interest to him/her at the moment. [ABSTRACT FROM AUTHOR]