Communication, understanding and engagement of patients with pancreatic cancer at time of diagnosis.

BACKGROUND: Objectives: To investigate communication clarity and understanding at the time of pancreatic adenocarcinoma (PDAC) diagnosis and whether they can influence patient engagement and compliance. METHODS: Consecutive PDAC patients were enrolled at the time of diagnosis after obtaining informed consent in a single-center study. The patients completed a validated scale (PHE-s®), and the understanding rate was assessed using standardized tools. Patient compliance was evaluated, and the correlation between the PHE-s®, understanding, and compliance was calculated. RESULTS: Thirty patients were enrolled (15 female) with a mean age 64.4, 13 were metastatic. The mean visit time was 31 min, being longer if visiting doctor was an oncologist (p = 0.002). The engagement level was high in 70% of the patients, and all but one were compliant. The analysis of doctor-patient interactions showed a median of 121 conversational turns for doctors, 75 for patients, and 20 for caregivers (p < 0.0001), and the median percentage of speaking time was 77% for doctors, 13% for patients, and 2% for caregivers (p < 0.0001). Female caregivers spent more time speaking than did male caregivers (median 11.6% vs. 1.3%; p = 0.06). There were 290 instances of problematic understanding, most of which occurred during the taking of patients' personal medical history for doctors, while for patients and caregivers, these occurred mainly during the discussion of diagnosis/treatment (p < 0.0001). In a multivariable analysis, only origin from central or southern Italy was associated with high engagement (p = 0.0087). CONCLUSION: In this first attempt to measure clarity of communication and engagement in patients with PDAC, typical features of conversation and problematic understanding emerged, which deserves further investigation.

Nurses' interventions to promote cancer patient engagement and related outcomes: a systematic review and meta-analysis protocol.

BACKGROUND AND AIM OF THE WORK: Due to the ageing of cancer patients, new approaches that require a more active participation in the self-management of cancer treatment at home are needed. Nurses are strategic in improving the patient's engagement capability in this regard. Knowing which interventions are more effective for the promotion of patient engagement could be useful to improve the effectiveness of the care provided. Therefore, this study aims to systematically review nursing interventions or programs that promote patient engagement in oncological nursing care and summarizing the main evidence related to their impact on relevant clinical and psychosocial outcomes. METHOD: This is a systematic review and meta-analysis protocol based on Cochrane Handbook for the systematic review of interventions. We will search the most important electronic databases (PUBMED, CINAHL, EMBASE, SCOPUS, ISI Web of Science, Cochrane library) to find out which patient engagement interventions (active adult patient involvement) are implemented in oncological settings and understand what is the effectiveness of these interventions on the outcomes reported in the literature. The GRADE methodology will be used to synthetize the evidence. If possible, also a meta-analysis will be performed. We registered the study protocol on the PROSPERO database (N° CRD42020146189). DISCUSSION AND CONCLUSION: To our knowledge, this is the first systematic review to address this clinical question in the field of oncology. This review will offer health professionals indications on the most frequently adopted patient engagement interventions and verify their clinical effectiveness. Furthermore, any gaps in the scientific literature will be highlighted.

COMMUNI.CARE (COMMUNIcation and Patient Engagement at Diagnosis of PAncreatic CAncer): Study Protocol.

Background: In many cases of pancreatic adenocarcinoma (PDAC), the diagnosis comes as a surprise to the patient, who often faces a disease that is already at an advanced stage, with poor prognosis. The clinical visit during which the diagnosis is communicated together with the first information regarding the planned treatments is of paramount importance. We hypothesize that the clarity of such information can influence patients' engagement and thus their level of compliance. Aims: This study aims to collect (a) quantitative data on the level of PDAC patient engagement, (b) data on the rate of understanding of the information received from the doctor, and (c) data on level of compliance; the possible associations between these variables will be analyzed. Methods: This is a single-center, observational, cross-sectional cohort study on patients diagnosed with PDAC, approved by the Ethics Committee of the San Raffaele Hospital. As no preliminary data are available on the association between PDAC patients' understanding rate and their level of engagement and of compliance, no power calculation is possible. This is a pilot study, aimed at enrolling at least 45 PDAC patients during a period of 3 months. Conclusion: COMMUNIcation and Patient Engagement at Diagnosis of PAncreatic CAncer (COMMUNI. CARE) will be the first study specifically investigating whether there is a relation between PDAC patients' engagement, rate of understanding at the time of diagnosis, and compliance.

The complex relationship between diet, quality of life and life expectancy: a narrative review of potential determinants based on data from Italy.

The increasing life expectancy at birth and the improvement of general health observed worldwide over the previous years are likely due to many factors. In this regard, the Organisation for Economic Cooperation and Development (OECD) has highlighted the favourable situation of the Italian population, which is amongst the most privileged in the world. In Italy, the national healthcare system is easily accessible to the whole population without direct costs, and alcohol abuse and cigarette smoke are less widespread compared to neighbouring countries. Moreover, the population still largely follows a dietary pattern characterised by the consumption of foods rich in protective compounds (plant foods and their components, such as fibre, polyphenols and polyunsaturated fatty acids). According to recent data, a significant consumption of these foods, which are key components of the Mediterranean model, is likely to play a more important role compared to the limited consumption of nutrients considered less favourable (essentially, saturated fat and sugar). Based on these assumptions, it can be inferred that the adoption of coercive legislative interventions-which have been introduced in other western countries to improve diet quality-may not be an optimal strategy in a country like Italy. Such an intervention would contend with psychological and social aspects (namely with the belief that participating in decision-making is an essential right) and with broader indications emerging in the research within this field (the effectiveness of a nudge approach as opposed to constraining interventions). These factors may limit any expected positive impact on health within this context. LEVEL OF EVIDENCE: Level V, narrative review.

Patient Health Engagement (PHE) model in enhanced recovery after surgery (ERAS): monitoring patients' engagement and psychological resilience in minimally invasive thoracic surgery.

In the last decade, the humanization of medicine has contributed to an important shift in medical paradigms (from a doctor-centered to a patient-centered approach to care). This paradigm shift promoted a greater acknowledgement of patient engagement as a crucial asset for healthcare due to its benefits on both clinical outcomes and healthcare sustainability. Particularly, patient engagement should be considered a vital parameter for the healthcare system as well as it is a marker of the patients' ability to be resilient to the illness experience and thus to be an effective manager of his/her own health after the diagnosis. For this reason, measuring and promoting patient engagement both in chronic and acute care is today a priority for healthcare systems all over the world. In this contribution, the authors propose the Patient Health Engagement (PHE) model and the PHE scale as scientific and reliable tools to orient clinical actions and organizational strategies based on the patient engagement score. Particularly, this work discusses the implication of the adoption of these scientific tools in the enhanced recovery after surgery (ERAS) experience and their potentialities for healthcare professionals working in thoracic surgery settings.

Personal history and quality of life in chronic myeloid leukemia patients: a cross-sectional study using narrative medicine and quantitative analysis.

BACKGROUND: Tyrosine kinase inhibitors (TKIs) drastically changed the outcome of patients diagnosed with chronic myeloid leukemia (CML). Several reports indicated the advantage of continue long-term adherence associated with positive outcome. Therefore, it is important to better understand from the patient's standpoint the experience of living with the disease and the related treatment. OBJECTIVES: In this study, quantitative analysis and narrative medicine were combined to get insights on this issue in a population of 257 patients with CML in chronic phase treated with TKIs (43 % men, with a median age of 58 years, 27 % aged 31-50 years), followed for a median time of 5 years. Sixty-one percent of patients enrolled were treated in first line, whereas 37 % were treated in second line. RESULTS: The results showed more positive perceptions and acceptance in males compared to females, without impact of disease on relationships. Level of positive acceptance was more evident in elderly compared to younger patients, with a close connection with median time from diagnosis. Overall, female patients reported negative perceptions and an impact of disease on family daily living. The majority of patients understood the importance of continue adherence to treatment, with 27 % resulting less adherent (60 % for forgetfulness), even if well informed and supported by his/her physician. DISCUSSION AND CONCLUSIONS: Narrative medicine, in association to quantitative analysis, can help physicians to understand needs of their patients in order to improve communication.

Engaging patients to recover life projectuality: an Italian cross-disease framework.

PURPOSE: Chronic disease is recognized as having a large impact on patient quality of life (QoL), which can be defined as an individual's satisfaction or happiness with life in domains he or she considers important. Policy makers and clinicians recognize increasingly that patients can safeguard their QoL by making healthy lifestyle choices and being actively engaged in their health care. However, in the emphasis on promoting patient engagement to enhance patients' QoL, there is no consensus regarding the relationship between QOL and patient engagement, resulting in a lack of shared guidelines among clinicians on interventions. Furthermore, no studies have provided an in-depth exploration of the perspective of patients with chronic conditions who are engaged in their health care and their requirements to achieve an improved QoL. Given this theoretical gap, the present study attempted to explore the patient engagement experience and its relationship with patient QoL in the context of the Italian healthcare system and in relation to different chronic diseases. METHODS: In-depth qualitative interviews on a sample of 99 patients with a wide variety of chronic conditions (heart failure, chronic obstructive pulmonary disease, stroke, diabetes, and cancer). RESULTS: Patient engagement in health care can be defined as a context-based and cross-disease process that appears to enable patients to recover their life projectuality, which had been impaired by the onset of chronic disease. Successful patient engagement may also be related to a positive shift in the ways in which patients perceive self and life and experience empowerment to realize their life potential, thus improving quality of life. Patient engagement is a powerful concept capable of reflecting significant psychosocial changes that promote patient QoL along the care process. There appears to be theoretical and empirical justification for a broad definition of QoL. CONCLUSIONS: QoL deeply depends on the patient ability to engage in their care and on the health expectations they have. We propose a model of the relation between patient engagement and patients' trajectories in critical event responses and use it to illustrate a new perspective on QoL. This research showed the heuristic value patient engagement as a is a key concept in the promotion of a patients' experience-sensitive QoL interventions and assessment measures.

Assisting a child with tuberous sclerosis complex (TSC): a qualitative deep analysis of parents' experience and caring needs.

OBJECTIVE: This study was aimed to explore parents' experience of assisting children affected by tuberous sclerosis complex (TSC) with subependymal giant-cell astrocytoma (SEGA) manifestation, in order to understand their caring needs and expectation of support. SETTING AND PROCEDURE: The study was designed according to the qualitative method of interpretative description and implied two sequential phases of data collection. The first phase was based on in-depth interviews with 18 Italian caregivers of children living with TSC. The second phase of the research was based on an online forum with 30 caregivers of children living with TSC. PARTICIPANTS: 48 Italian caregivers, assisting patients with TSC with SEGA manifestation have been involved in the study. RESULTS: When a TSC diagnosis is made, the whole family is affected psychologically. TSC has a great impact on families' quality of life and on their ability to cope with the disease and support the child's ability to recover and reach an acceptable level of well-being. Caregivers report the experience of losing control and the feeling of loneliness and abandon from the healthcare system. CONCLUSION AND PRACTICE IMPLICATIONS: Families of children affected by TSC need targeted psychosocial assistance in order to support patients and caregivers and facilitate their social integration.

Understanding the meaning of fatigue at the end of life: an ethnoscience approach.

PURPOSE: Fatigue is a devastating state of body and mind associated with distress at the end of life. We report the results of the third in a series of papers outlining a novel approach we have developed for understanding the meaning of fatigue by exploring how this meaning is shaped by beliefs and values. The aims of the study were to examine the perception and experiences of fatigue held by patients attending a hospice in England; identify the behavioural patterns that distinguish fatigue from tiredness and exhaustion; provide conceptual definitions of tiredness, fatigue and exhaustion. METHOD: An Ethnoscience design was selected. The sample comprised nine people who attended a hospice between May and December 2009. Inclusion criteria included: at least 18 years of age, experiencing fatigue, able to provide informed consent and resident in the selected city in northern England for 10 years. Data were collected from two consecutive semi-structured interviews for each participant. RESULTS: We found that tiredness, fatigue and exhaustion are markers of progressive functional decline. Fatigue had two dimensions: 1) Mental Challenge, which included: emotional effects, cognitive realisation of decline and mental tenacity and 2) Physical Challenge, which included: limitations in leisure activities, limitations in functional roles and re-patterning routines. CONCLUSIONS: This study provides evidence that symptom experience is socially constructed, which has potential implications for the development of effective interventions.

Comparing the meanings of fatigue in individuals with cancer in Thailand and Canada.

BACKGROUND: Illness is experienced in social contexts; its meaning is rooted in local beliefs and values as well as one's personal and family situation. Health professionals are steeped in knowledge of disease but know much less about illness. OBJECTIVES: The objective of the study was to learn more about the social construction of illness by comparing the meanings of fatigue in Thai and Canadian individuals with cancer. METHODS: Using an ethnoscience design, 10 Thai adults receiving chemotherapy for advanced lung cancer or colorectal cancer were interviewed twice. They were asked to sort words and phrases about fatigue from their first interview using Q-sort, triadic, and dyadic approaches; to name each pile; and to describe the similarities and differences between the piles. The card sorts were used to understand the relationships among key ideas in each interview. A table summarizing the card sorts was constructed, and patterns in the data were identified. RESULTS: Two segregates in the Thai data were identified: essential/constant and intermittent, with essential/constant including 2 segregates (feeble and altered cognition), and intermittent including 2 segregates (loss of mental strength and difficulty sleeping). The primary meanings of fatigue in the Thai data were related to temporality, whereas the primary meanings of fatigue in the Canadian data were related to the location of the fatigue (mind/body). CONCLUSION: These findings help us understand the social construction of fatigue, a common symptom in cancer. IMPLICATIONS FOR PRACTICE: Further research in relation to links between fatigue and other related-symptoms is needed with the goal of developing cross-cultural interventions for managing fatigue in the future.

Studying the social construction of cancer-related fatigue experience: the heuristic value of Ethnoscience.

OBJECTIVES: Patients' lived experience of illness and health is receiving increased attention in the medical field. Understanding patients' perspective and experiences is an undoubted asset for efficient health interventions and improved clinical concordance. Patients' experiences of care and cure, however, are influenced by the cultural setting in which these experiences take place. This implies that health interventions should be "ecological" and attuned to the specific sociocultural context of the patients. METHODS: Our research group is conducting a cross-cultural qualitative study aimed ad exploring how fatigue (a symptom very common in cancer) is perceived and manifested by patients in different countries (Canada, Thailand, England and Italy). In order to achieve this, the study was design according to the method of Ethnoscience, that appeared to us the best suited to explore the meanings that patients attribute to their state and the linguistic patterns they use to describe it. In this paper we will describe in details the process of Ethnoscience and will discuss the heuristic value of this research approach. RESULTS: Ethnoscience was an effective research strategy for exploring how beliefs and values shape symptoms and the behavioural manifestations of cancer related fatigue. CONCLUSIONS: This paper discusses the heuristic value of Ethnoscience and its applicability to the study of health relate topics, particularly those where issues of social construction are important. PRACTICAL IMPLICATIONS: Ethnoscience is a promising and innovative research approach, able to cast light on the way people experience and make sense of their illness.