Serena Barello

eHealth for patient engagement: A Systematic Review

eHealth interventions are recognized to have a tremendous potential to promote patient engagement. To date, the majority of studies examine the efficacy of eHealth in enhancing clinical outcomes without focusing on patient engagement in its specificity. This paper aimed at reviewing findings from the literature about the use of eHealth in engaging patients in their own care process. We undertook a comprehensive literature search within the peer-reviewed international literature. Eleven studies met the inclusion criteria. eHealth interventions reviewed were mainly devoted to foster only partial dimensions of patient engagement (i.e., alternatively cognitive, emotional or behavioral domains related to healthcare management), thus failing to consider the complexity of such an experience. This also led to a great heterogeneity of technologies, assessed variables and achieved outcomes. This systematic review underlines the need for a more holistic view of patient needs to actually engage them in eHealth interventions and obtaining positive outcomes. In this sense, patient engagement constitute a new frontiers for healthcare models where eHealth could maximize its potentialities.

How to engage type-2 diabetic patients in their own health management: implications for clinical practice.

BackgroundPatient engagement (PE) is increasingly regarded as a key factor in the improvement of health behaviors and outcomes in the management of chronic disease, such as type 2 diabetes. This article explores (1) the reasons for disengagement of diabetic patients and their unique subjective attitudes from their experience and (2) the elements that may hinder PE in health management.Methods29 Type-2 uncontrolled diabetes patients were asked to keep a one-week diary related to their experience of disease management, according to the narrative inquiry qualitative approach. They were interviewed to ascertain reasons for PE. The elicited narratives were subjected to interpretive content analysis.ResultsThe findings suggest that patients give meaning to their diabetes and its management through a complex frame of subjective experiential dimensions (cognitive/thinking, behavioral/conative and emotional/feeling), which have an impact on the spheres of daily life that are considered to be crucial in the management of diabetes (diet, physical activity, therapy, doctor-patient relationship) for each patient. These results suggest that PE develops along a continuum featuring four subsequent phases (blackout, arousal, adhesion, eudaimonic project). Several unmet needs related to the different phases of the PE continuum were discovered and illuminated possible types of support.ConclusionsOur findings appear to confirm some features of PE detected by previous research, such as a behavioral component. We were also able to shed light on the synergic roles played by other subjective dimensions of patient experience (the cognitive/thinking and the emotional/feeling components) in orienting PE towards the care process. The article suggests a possible framework to deeply understand the PE process useful to orient really attuned actions to support it. These results suggest the importance of developing patient engagement assessment tools that are more firmly grounded in the individual patient experience.

Technologies For Patient Engagement

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

PurposeChronic 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.MethodsIn-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).ResultsPatient 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.ConclusionsQoL 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.

‘Engage me in taking care of my heart’: a grounded theory study on patient–cardiologist relationship in the hospital management of heart failure

Objective In approaching the study and practice of heart failure (HF) management, authors recognise that the patient–doctor relationship has a central role in engaging patients in their care. This study aims at identifying the features and the levers of HF patient engagement and suggestions for orienting clinical encounters. Design Using a grounded theory approach, we conducted 22 in-depth interviews (13 patients with HF, 5 physicians and 4 caregivers). Data were collected and analysed using open, axial and selective coding procedures according to the grounded theory principles. Settings All interviews were conducted in an office in a university hospital located in a metropolitan area of Milan, Italy. Participants The data comprised a total of 22 patient, hospital cardiologist and caregiver interviews. Patients aged ≥18 years with New York Heart Association (NYHA) Functional Class of II or III were eligible to take part. Patients were recruited primarily through their referral cardiologist. Results The HF patient engagement process develops in four main phases that are characterised by different patients’ emotional, cognitive and behavioural dynamics that contribute to shape the process of a patients meaning making towards health and illness regarding their care. The emerging model illustrates that HF patient engagement entails a meaning-making process enacted by the patient after the critical event. This implies patients’ ability to give sense to their care experience and to their disease, symptomatology and treatments, and their changes along their illness course. Doctors are recognised as crucial in fostering patients’ engagement along all the phases of the process as they contribute to providing patients with self-continuity and give new meaning to their illness experience. Conclusions This study identifies the core experiential domains and the main levers involved in driving patients with HF to effectively engage in their disease management. The model emerging from this study may help clinicians think in a fresh way about encounters with patients and their role in fostering their patients’ health engagement.

Engaged patients, engaged partnerships: Singles and partners dealing with an acute cardiac event

A few studies examine patients’ (and partners’) individual and relational functioning after an acute cardiac event and no research focuses on the individual and relational factors associated with the patient’s engagement in his/her disease management. The present study aimed at exploring these variables in male and female patients as well as their partners. We pursued our objectives by taking advantage of a dyadic research design that involved both partners in the data collection, when present, and by including women patients in the sample. Findings showed that patients in a couple, compared to single patients, perceive that their illness had less serious consequences for their life and they were more engaged in their health care; that patients and partners showed comparable levels of distress; and that less depressed, more confident, and better informed patients were more likely to actively engage in their treatment. Findings are discussed in light of their implications for clinical practice.

Career development for early career academics: benefits of networking and the role of professional societies.

Whilst effective networking is vitally important for early career academics, understanding and establishing useful networks is challenging. This paper provides an overview of the benefits and challenges of networking in the academic field, particularly for early career academics, and reflects on the role of professional societies in facilitating networking.

Behavioral Epigenetics of Family-Centered Care in the Neonatal Intensive Care Unit

The study used existing deidentified data and was exempt from human participant review. Children’s race/ ethnicity and sex were obtained from the parent and/or school records. Children were classified into quintiles of a composite socioeconomic scale constructed by the ECLS-K,5 capturing parents’ education, occupation, and household income. The proportion of children who were overweight or obese and the proportion of children who were obese were estimated overall and separately by sex, socioeconomic quintile, and race/ethnicity. Socioeconomic disparity was measured as the difference in proportion between the highest quintile and other quintiles. Racial/ethnic disparities were measured by the difference in proportion between non-Hispanic black and nonHispanic white children and Hispanic and non-Hispanic white children. Weighted estimates were generated in Stata version 12.1 (StataCorp Inc) to adjust for the multistage sampling design of the ECLS-K. Our analysis sample (rounded to the nearest 10 per the National Center for Education Statistics data-use restrictions) included approximately 17 000 and 15 560 kindergarteners who were representative of 3 442 716 and 4 003 224 US kindergarteners in the fall of 1998 and 2010, respectively.

Enteral vs. intravenous ICU sedation management: study protocol for a randomized controlled trial

BackgroundA relevant innovation about sedation of long-term Intensive Care Unit (ICU) patients is the ‘conscious target’: patients should be awake even during the critical phases of illness. Enteral sedative administration is nowadays unusual, even though the gastrointestinal tract works soon after ICU admission. The enteral approach cannot produce deep sedation; however, it is as adequate as the intravenous one, if the target is to keep patients awake and adapted to the environment, and has fewer side effects and lower costs.Methods/DesignA randomized, controlled, multicenter, single-blind trial comparing enteral and intravenous sedative treatments has been done in 12 Italian ICUs. The main objective was to achieve and maintain the desired sedation level: observed RASS = target RASS ± 1. Three hundred high-risk patients were planned to be randomly assigned to receive either intravenous propofol/midazolam or enteral melatonin/hydroxyzine/lorazepam. Group assignment occurred through online minimization process, in order to balance variables potentially influencing the outcomes (age, sex, SAPS II, type of admission, kidney failure, chronic obstructive pulmonary disease, sepsis) between groups. Once per shift, the staff recorded neurological monitoring using validated tools. Three flowcharts for pain, sedation, and delirium have been proposed; they have been designed to treat potentially correctable factors first, and, only once excluded, to administer neuroactive drugs. The study lasted from January 24 to December 31, 2012. A total of 348 patients have been randomized, through a centralized website, using a specific software expressly designed for this study. The created network of ICUs included a mix of both university and non-university hospitals, with different experience in managing enteral sedation. A dedicated free-access website was also created, in both Italian and English, for continuous education of ICU staff through CME courses.DiscussionThis ‘educational research’ project aims both to compare two sedative strategies and to highlight the need for a profound cultural change, improving outcomes by keeping critically-ill patients awake.Trial registration numberClinicaltrials.gov #NCT01360346

Ethics and Etiquette in Neonatal Intensive Care: The Value of Parents’ Engagement in Everyday Ethics and Recommendations for Further Advancing the Field

by study, which group-level meta-analyses may introduce.Their concerns regarding our noninclusion of vesicoureteralreflux in the model may result from misinterpretation of ourstudy’s aims. Our prediction model was not designed to de-termine an epidemiological causal pathway for scarring, butrather,todevelopariskpredictionmodeltoassistphysiciansto identify children most at risk using routinely collected in-formation.Wedidnotincludevesicoureteralrefluxinmodel1 (the clinical model) because vesicoureteral reflux was notknownatthetimeoftheinitialdiagnosisandmayhaveneverbeenknown.However,wedidpresentdataona modelinwhichvesicoureteral reflux was included (model 3), which showedthat adding vesicoureteral reflux to the clinical model im-provedaccuracyonlymarginally.Therefore,weconcludedthatusingasimplemodelwithonly3clinicalvariablesprovidedareasonable screening strategy for the identification of chil-drenwithafirsturinarytractinfectionwhowereatriskforre-nal scarring.Nader Shaikh, MD, MPHJonathan C. Craig, MD, MBChB, PhDTimothy R. Shope, MD, MPH