Prognostic Uncertainty Research Articles

Precautionary planning at the end of life from the perspective of intensive care medicine

In recent years, the number of intensive care treatments has increased significantly. About every fourth patient who dies in hospital receives intensive care. Structured prevention planning is important in order to implement the patient's wishes in situations of serious illness in which patients cannot express their wishes themselves. However, the implementation in practice can be problematic since intensive care situations are complex and rarely correspond to the concrete pre-arranged situations. Communication of the prognosis and the prognostic uncertainty is therefore crucial in order to determine the presumed will of the patient, especially in the context of the process of weighing up the benefits and burdens of intensive care therapies. Hospital treatment can be the reason for targeted preventive planning and avoid unnecessary intensive care treatment during the same stay. Documentation templates can help to record the results of preventive care planning clearly and comprehensibly in the medical file.

Understanding patient views and experiences of the IDENTIfication of PALLiative care needs (IDENTI-PALL): a qualitative interview study.

Palliative care improves quality of life for people with life-threatening illnesses. There are longstanding inequalities in access to palliative care, with many people never identified as having palliative care needs, particularly frail older people, those with non-malignant disease, and people from ethnic minority backgrounds. Little is known about the process of identification of palliative care needs from a patient perspective. To provide new understanding into patient views and experiences of the process of identification of palliative care needs, and to explore the impact of identification on health care, if any, from a patient perspective. A qualitative interview study undertaken with patients and family carers in a major UK city. Semi-structured interviews were carried out with patients (and/or family carers) identified as being on general practice palliative care registers. An inductive thematic analysis was conducted to explore the data. Eleven participants were recruited: eight patients and three family carers. The following three interrelated themes were identified: 1) misconceptions about palliative care and unshared prognostic uncertainty hinder the identification of palliative care needs; 2) a compassionate, timely approach is required for identification of palliative care needs, with or without an identification tool; and 3) identification of palliative care needs is beneficial where it leads to proactive holistic care. A compassionate approach, sharing of prognostic uncertainty, and proactive primary care are key to timely, beneficial identification of palliative care needs. Future policy should ensure that identification is an adaptable, personalised process to meet the individual needs of people with advanced serious illnesses.

When the Unknown Is Unknowable: Confronting Diagnostic Uncertainty.

The neonatology literature often refers to medical uncertainty and specifically the challenges of predicting morbidity for extremely premature infants, who can have widely varying outcomes. Less has been written about situations in which diagnoses are simply unknown or unattainable. This case highlights the importance of communication amidst uncertainty from a lack of knowledge about aspects of a patient's condition. Using epidemiologic and clinical reasoning, the authors challenge the assumption that diagnostic uncertainty must necessarily portend prognostic uncertainty. When physicians' quest for a diagnosis becomes burdensome and detrimental to the infant's quality of life, this should be abandoned and replaced by focusing on prognosis. The authors focus on the shift of the physician's role toward one of support, assisting the family in ascribing meaning to the dying experience. By focusing on prognosis and support, communication can proceed with more clarity, understanding, and empathy.

The influence of muscle performance and fatigue on prognosis in patients with compensated liver disease

BackgroundPoor muscle function is associated with a negative prognosis in advanced liver disease but the impact in compensated chronic liver disease is unknown. Similar prognostic uncertainty applies to fatigue. We aimed to assess the prognostic value of muscle performance and fatigue in a cohort of patients with compensated chronic liver disease.MethodsWe followed 241 patients with compensated chronic liver disease included in a study between 2010 and 2014. Subjects were 52 ± 15 years (mean ± SD; 134 females). All subjects performed four muscle function tests: “Timed Up and Go” test, walking speed, handgrip strength, and standing heel-rises. Fatigue was evaluated by fatigue impact scale. Follow up data was acquired through hospital records and registries.ResultsDuring follow up of 6.75 ± 1.4 years, 13 patients died (5.5%) and 11 (4.5%) patients underwent liver transplantation. A timed up and go over 10 s was not significantly associated with a lower survival (Kaplan-Meier, log rank test p = 0.132), or with transplant free survival (p = 0.543), Fig. 3. It was also not specifically associated with liver related causes of death (p = 0.597). The other physical functioning tests and fatigue were not significantly associated with mortality or transplant-free survival (p > 0.05 for all) except for maximal walking speed (2.2 vs. 1.9 m/s, p = 0.007).ConclusionsOur study suggests that muscle function and fatigue are not key prognostic factors in compensated chronic liver disease. However, further confirmation in future studies is needed.

Professional Guidelines for the Care of Extremely Premature Neonates: Clinical Reasoning versus Ethical Theory.

AbstractProfessional statements guide neonatal resuscitation thresholds at the border of viability. A 2015 systematic review of international guidelines by Guillen et al. found considerable variability between statements' clinical recommendations for infants at 23-24 weeks gestational age (GA). The authors concluded that differences in the type of data included were one potential source for differing resuscitation thresholds within this "ethical gray zone." How statements present ethical considerations that support their recommendations, and how this may account for variability, has not been as rigorously explored. We performed a mixed-methods exploratory analysis of 25 current international guidelines for neonatal resuscitation at 22+0-25+0 weeks GA. Qualitative analysis using a modified grounded theory yielded 34 distinct codes, eight categories, and four overarching themes. Three themes, consequentialism, principlism, and rights-based, consisted of concepts central to these ethical frameworks. The fourth theme, clinical reasoning, described counseling practices, medical management, outcomes data, and prognostic uncertainty, without any ethical context. The theme of clinical reasoning appeared in 22 of 25 guidelines. Ten guidelines lacked any ethical theme. Guidelines with an identified ethical theme were more likely to recommend comfort care than guidelines without an identified ethical theme, and recommended it at a higher average GA (22.7 weeks vs. 22.0 weeks, p = 0.03). Thus, how ethical concepts are incorporated into guidelines potentially impacts resuscitation thresholds. We argue that inclusion of explicit discussion of ethical considerations surrounding resuscitation in the "gray zone" would clarify values that inform recommendations and facilitate discussions about how neonatology ought to approach periviability as outcomes continue to evolve.

Acute and Chronic Kernicterus: MR Imaging Evolution of Globus Pallidus Signal Change during Childhood.

Despite its rarity in Western countries, kernicterus resulting from severe neonatal hyperbilirubinemia and its associated neurologic consequences still persists. Subtle MR imaging patterns may be overlooked, leading to diagnostic and prognostic uncertainties. The study systematically analyzes MR imaging pattern over time. A retrospective MR imaging study was conducted in Departments of Pediatric Neurology at the University Children's Hospitals in Leipzig, Germany, or Tübingen, Germany, between 2012 and 2022 in patients who presented beyond the neonatal period suspected of having chronic kernicterus. Eight patients with a total of 15 MR images were identified. The clinical diagnosis of kernicterus was confirmed in all cases on the basis of typical MR imaging findings: Bilateral, diffuse hyperintensity of the globus pallidus was observed in the neonatal period on T1WI (1 MR imaging, at 2 weeks), in infancy on T2WI (4 MR images, at 9-26 months). In children 2 years of age and older, bilateral hyperintensity on T2WI was limited to the borders of the globus pallidus (8 MR images, at 20 months -13 years). Notably, 2 children exhibited normal initial MR imaging findings at 2 months of age. Hence, MR imaging depiction of kernicterus pathology evolves with time, first evident on T1WI, subsequently on T2WI, with a "blind window" during early infancy. The T2WI signal change initially involves the entire globus pallidus and later is limited to the borders. Kernicterus had not been diagnosed in any except 2 patients by previous investigators. All patients presented with a characteristic clinical history and signs and an evolving MR imaging pattern. Nonetheless, the diagnosis of kernicterus was frequently missed. Abnormalities on later MR images appear to be underrecognized.

Access to device-aided therapies in advanced Parkinson's disease: navigating clinician biases, patient preference, and prognostic uncertainty.

Device-aided therapies (DAT), which include deep brain stimulation and pump-based continuous dopaminergic stimulation with either levodopa or apomorphine, are among the major advances in the clinical management of Parkinson's disease (PD). Although DAT are being increasingly offered earlier in the disease course, their classical indication remains advanced PD. Theoretically, every patient should be offered transition to DAT when faced with refractory motor and nonmotor fluctuations and functional decline. Worldwide clinical reality is far from these ideal, and, therefore, question the "real-world" equal opportunity of access to DAT for PD patients with advanced PD-even within a single health care system. Differences in access to care, referral pattern (timing and frequency), as well as physician biases (unconscious/implicit or conscious/explicit bias), and patients' preferences or health-seeking behaviour are to be considered. Compared to DBS, little information is available concerning infusion therapies, as well as neurologists' and patients' attitudes towards them. This viewpoint aims to be thought-provoking and to assist clinicians in moving through the process of DAT selection, by including in their decision algorithm their own biases, patient perspective, ethical concerns as well as the current unknowns surrounding PD prognosis and DAT-related long-term side effects for a given patient.

"I won't get to live my life the way I planned it":A qualitative analysis of the experiences of adolescents and young adults with advanced cancer.

Individuals with advanced cancer face complex challenges, including prognostic uncertainty and evolving goals of care. Despite the unique psychosocial support needs of adolescents and young adults (AYAs), few studies have specifically examined AYA perspectives of and experiences with advanced cancer. The objective of this study was to describe the experience, needs, and perspectives of pediatric AYAs with advanced cancer. We invited English-speaking AYAs (age 14-25 years) who were receiving treatment for advanced cancer at our single tertiary pediatric cancer center to participate in semi-structured interviews. We used directed content analysis for codebook development and then applied in-depth thematic network analysis to describe their perspectives and experiences with advanced cancer. A total of 32 AYAs (86% of approached) completed interviews. A slight majority were male (59%) and non-Hispanic White (56%). Most were diagnosed with leukemia/lymphoma, had recurrent disease (84%), and were a mean 53 months from initial diagnosis. Organizing themes of "not being able to beat this," "not wanting to miss out," and "living each day" generated the global theme "do I have a future?" "Making tough medical decisions," "adjusting life/plans/perspectives," and "decisions about dying" were organized into the global theme "those decisions … were really hard." "Feeling like there is no one to talk to," "being away from family and friends," and "feeling like a burden" generated the global theme "I felt very alone." Pediatric AYAs with advanced cancer describe unique challenges. Psychological support interventions are needed to empower AYAs to navigate difficult decisions and to cope with isolation.

Silent Conversations: Goals of Care and End-of-Life Quality in Relapsed High-Risk Leukemia.

Advanced practice providers (APPs) affect high-quality health care through leadership, evidence-based practice implementation, and quality improvement projects. When planning solutions to clinical problems, leadership must solicit APP input to promote success. Hematology patients are more likely to receive poor-quality end-of-life (EOL) care than those with solid tumors. Regardless of disease, aggressive EOL care is increasing despite evidence that it is often inconsistent with patients' goals of care (GOC). Data regarding this phenomenon in hematology specifically is lacking. The distorted association of "end of life" with "goals of care" has "silenced" crucial goals discussions in patients with relapsed or refractory high-risk leukemia, which raises concerns for the provision of care that is inconsistent with patients' values and preferences. Hematologists may possess certain traits and distinct barriers leading to what one might call an aversion to GOC discussions in the inpatient setting. (1) Quantify hematologists' rate of participation in a GOC pathway initiative during two separate months. (2) Explore the hematologists' definition of and barriers to having GOC discussions. This is a mixed-methods, explanatory sequential design (follow-up explanations variant). Quantitative: Hematology inpatient admissions during two nonconsecutive months in 2021. Qualitative: Eighteen leukemia hematologists from one dedicated cancer center. During the 2 months, an average of 36% of admissions met the criteria for GOC pathway initiation, 19% of those had an appropriate initiation order, and < 1% had a properly documented and billed GOC discussion. Nine hematologists responded to a SurveyMonkey poll with two questions. All nine included clinical situation and communication in their definition of GOC discussions. Time limitations and prognostic uncertainty were the two most reported barriers. The findings demonstrate that the apprehension of hematologists to have GOC conversations is similarly seen in the APPs' reluctance to initiate a pathway intended to lead to GOC conversations. The percentage of eligible inpatient admissions meeting the specified criteria was similar between the 2 months; however, the number of appropriate referrals and documented or billed GOC discussions was higher in the earlier month, demonstrating temporal decline. Further research inquiry is needed to explore causation of this phenomenon.

FINCA syndrome

FINCA (fibrosis, neuro-degeneration, cerebral angiomatosis) syndrome is a rare autosomal recessive early onset fatal disorder characterised by progressive cerebropulmonary symptoms, malabsorption, progressive growth failure, recurrent infection, chronic haemolytic anaemia and transient liver dysfunction. A 5 year old female baby born as a preterm 33 weeks (2nd twin of dichorionic diamniotic twin) to nonconsanguineous parents via intra-cytoplasmic sperm injection and surrogacy, delivered by emergency caesarean section (indication- pre-eclampsia in mother) with a birth weight of 1.8 kg. She had a stormy neonatal period and had anaemia requiring blood transfusion. Developmental delay was noted from early infancy which was not responding to developmental therapy, along with recurrent episodes of aspiration pneumonia. Her twin on the other hand had normal mile stones without any remarkable medical history. Examination and evaluation revealed features of chronic hemolysis. In view of constellation of developmental delay, recurrent infection, chronic hemolytic anaemia and cerebral atrophy beyond documented perinatal issues and dysmorphism, clinical exome sequencing was done which revealed missense variation in exon of NHLRC2 gene on chromosome 10 suggestive of FINCA syndrome. This case emphasized the need of genetic testing to resolve uncertainty in etiology and accurate prognostication.

A narrative review on palliative care in the emergency department: dealing with the uncertainty of death

In the last decades emergency physicians have observed a steep increase in the emergency department (ED) admissions of palliative care patients who rely on the hospital for symptoms’ relief and management of acute exacerbations of their chronic disease. Previous studies have suggested that palliative care interventions in the ED could prevent unnecessary admissions and reduce both the length of hospitalization and costs. However, emergency medicine physicians might have limited specialistic education and resources to provide a correct management of palliative care patients and avoid futile interventions. Thus, we aim in this narrative review to provide the reader with an introduction on the principles that should guide the emergency physician in a correct approach to palliative care patients in the ED. We will explain how to deal with the intrinsic prognostic uncertainty of palliative care patients by implementing a correct ethical approach which encompasses the understanding of both appropriateness and futility of intervention; furthermore, we will present practical tools such as scores and trials.

#4188 PREFERENCES FOR PROGNOSTIC INFORMATION PROVISION AMONGST PATIENTS WITH CHRONIC KIDNEY DISEASE: A SURVEY

Abstract Background and Aims Patients with chronic kidney disease (CKD) often experience various symptoms and have an increased risk for many adverse outcomes. The varying nature of the course of the disease comes with much prognostic uncertainty, and patients have expressed a wish for more information about their future with the disease. However, the extent to which patients want to know more about their future with CKD varies highly per individual. By identifying which topics patients are interested in regarding their prognosis, more attention can be given to these topics in clinical practice and future research. Therefore, the aim of this study was to explore whether CKD patients want to know more about their future, and if so, which topics they find most important in regards to their prognosis. Method To gather information on what CKD patients want to know regarding their future, a survey was constructed by an expert panel of researchers and nephrologists. Before distributing the survey, it was tested during a two-phase pilot, in which volunteers of the Dutch patients association provided detailed feedback. Feedback was incorporated into a final version, available both on paper and online in Castor EDC. The survey was developed in Dutch, and was fully anonymous. The final survey consisted of three main sections containing multiple questions: 1) demographic questions, 2) ‘do you think about your future with a kidney disease?’, 3) ‘what would you want to know about your future with CKD?’. The survey was specifically developed for all patients that currently have chronic kidney disease, including patients undergoing any form of dialysis or those that have received a kidney transplant in the past. Descriptive statistics were used to summarize the results. Results A total of 145 patients filled in the survey. Respondents had a mean age of 63.0 (SD 14.1) and 49.7% was male. The majority of patients (57.9%) had undergone a kidney transplant in the past and 23 (15.9%) patients were undergoing dialysis at the time of responding. When asked whether patients ever thought about their future with CKD, most replied that they think about it every now and then (57.2%) or often (36.6%), and only nine (6.2%) patients reported that they never think about it. Half of the patients (50.3%) reported that they discuss the future with their nephrologist. Some patients (19.3%) mentioned that they currently do not discuss it, but would like to, and 23 (15.9%) patients stated that they do not want to discuss their future at all. Furthermore, patients were asked in which scenarios they would be interested in knowing more about their future. Most patients (77.9%) mentioned they always wanted to know more about their future, regardless of whether the information is positive or negative. Contrarily, two patients (1.4%) only wanted to know in case of good news, 32 (22.1%) when the outcomes in question can be prevented, and 37 (25.5%) if it would help them make a treatment decision. Four patients (2.8%) were not sure whether they wanted more prognostic information and four patients (2.8%) preferred not to know anything in terms of prognosis at all. Patients were asked to rate the importance of receiving more prognostic information for nine outcome categories on a scale from 0 to 100. Outcome categories that were rated the highest were laboratory measurements, health complaints, and physical well-being. Per category, patients chose specific subjects that they deemed important in terms of prognosis. The top ten most chosen subjects per patient group (CKD, dialysis, kidney transplantation, and all patients) are presented in Figure 1. Conclusion Most patients with chronic kidney disease think about their future, and there is interest in receiving individualised prognostic information on what to expect for a variety of subjects. Based on these research results more attention can be paid to specific prognostic information provision tailored to the preferences of and based on subjects that matter to patients, both in future research and clinical practice.

Clinical Uncertainty Influences Antibiotic Prescribing for Upper Respiratory Tract Infections: A Qualitative Study of Township Hospital Physicians and Village Doctors in Rural Shandong Province, China.

This study aimed to explore how clinical uncertainty influences antibiotic prescribing practices among township hospital physicians and village doctors in rural Shandong Province, China. Qualitative semi-structured interviews were conducted with 30 township hospital physicians and 6 village doctors from rural Shandong Province, China. A multi-stage random sampling method was used to identify respondents. Conceptual content analysis together with Colaizzi's method were used to generate qualitative codes and identify themes. Three final thematic categories emerged during the data analysis: (1) Incidence and treatment of Upper Respiratory Tract Infections (URTIs) in township hospitals and village clinics; (2) Antibiotic prescribing practices based on the clinical experience of clinicians; (3) Influence of clinical uncertainty on antibiotic prescribing. Respondents from both township hospitals and village clinics reported that URTIs were the most common reason for antibiotic prescriptions at their facilities and that clinical uncertainty appears to be an important driver for the overuse of antibiotics for URTIs. Clinical uncertainty was primarily due to: (1) Diagnostic uncertainty (establishing a relevant diagnosis is hindered by limited diagnostic resources and capacities, as well as limited willingness of patients to pay for investigations), and (2) Insufficient prognostic evidence. As a consequence of the clinical uncertainty caused by both diagnostic and prognostic uncertainty, respondents stated that antibiotics are frequently prescribed for URTIs to prevent both prolonged courses or recurrence of the disease, as well as clinical worsening, hospital admission, or complications. Our study suggests that clinical uncertainty is a key driver for the overuse and misuse of prescribing antibiotics for URTIs in both rural township hospitals and village clinics in Shandong province, China, and that interventions to reduce clinical uncertainty may help minimize the unnecessary use of antibiotics in these settings. Interventions that use clinical rules to identify patients at low risk of complications or hospitalization may be more feasible in the near-future than laboratory-based interventions aimed at reducing diagnostic uncertainty.

Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope.

Fetal neurology is a rapidly evolving and expanding field. Discussions about diagnosis, prognosis, treatment options, and goals of care often begin in the antenatal period. However, there are inherent challenges to fetal counseling of neurological diagnoses due to limitations of fetal imaging, prognostic uncertainty, and variability in neurodevelopmental outcomes. In the midst of uncertainty, families are challenged with preparing a care plan for their baby while simultaneously experiencing profound grief. The paradigms of perinatal palliative care can assist with the grieving process and help frame diagnostic testing and complex decision-making within the context of a family's spiritual, cultural, and social belief system. This ultimately leads to a shared decision-making process and value driven medical care. While perinatal palliative care programs have expanded, many families faced with such diagnoses never meet with a palliative care team prior to delivery. Moreover, there is significant variability in the availability of palliative care services throughout the country. Using an illustrative vignette of a patient with a prenatally diagnosed encephalocele, this review aims to provide a basic framework of perinatal palliative care for fetal neurology diagnoses that emphasizes 1) importance of clear, consistent, and transparent communication among all subspecialists and families, 2) creation of a palliative care birth plan, 3) importance of consistent care providers and longitudinal points of contact prenatally and post-delivery, 4) close communication between the prenatal and post-natal providers to allow for optimal continuity of care, and 5) recognize that information, care plans, and goals of care often evolve over time.

Uncertainty and coping in patients with newly diagnosed indolent non-Hodgkin’s lymphoma (iNHL).

7568 Background: iNHLs are a heterogenous group of incurable diseases with prolonged illness courses requiring intermittent periods of surveillance and treatment. Due to illness uncertainty, patients with iNHL struggle with immense psychological distress. Yet, studies exploring coping, prognostic uncertainty and distress in this population are limited. Methods: We conducted a cross sectional study of adults (age ≥ 18) newly diagnosed with iNHL at a single academic center. We enrolled consecutive patients who were diagnosed ≤ 3 months prior to study enrollment. At baseline, we collected patient reported outcomes to assess QOL (Functional Assessment of Cancer Therapy), psychological symptoms (Hospital Anxiety and Depression Scale), prognostic understanding (Prognostic Awareness Impact Scale), and coping (Brief COPE). We categorized coping as approach-oriented (active coping, use of emotional support, positive reframing, acceptance) and avoidant (behavioral disengagement, denial, and self-blame). We used median split to differentiate between low and high utilizers of approach or avoidant coping. Results: We enrolled 70.6% (48/68) of eligible patients newly diagnosed with iNHL (mean age 66.8 yrs; 39.6% chronic lymphocytic leukemia/ lymphoma; 33.3% follicular lymphoma). At baseline, nearly one-third (31.2%) experience clinically significant symptoms of anxiety and depression. 45.8% of patients identified prognostic uncertainty as the “the most stressful part of being a patient,” and 31.2% reported having “difficulty letting go of thoughts about their prognosis.” Notably, patients had significant misperceptions about their prognosis with incurable iNHL, as 47.9% reporting that a cure was at least ‘somewhat’ likely. Patients with iNHL most often used acceptance (56.3%), denial (47.9%), and emotional support (47.9%) as coping strategies. Patients who were high utilizers of multiple approach-oriented coping strategies experienced fewer anxiety (B = -2.66, p = 0.01) and depression (B = -1.73, p = 0.02) symptoms and improved QOL (B = 9.43, p = 0.001). Patients who highly utilized any avoidant-oriented coping strategies experienced increased anxiety symptoms (B = 2.16, p = 0.05), but no difference in depression symptoms or QOL. Conclusions: Patients with iNHL report immense prognostic uncertainty and psychological distress. Use of multiple approach oriented coping strategies was associated with decreased psychological distress and improved QOL. Interventions to address prognostic uncertainty and to promote approach oriented coping in patients with iNHL are sorely needed and have the potential to ameliorate psychological distress and improve QOL in this vulnerable population.

A prognostic driven predictive maintenance framework based on Bayesian deep learning

Recent years have witnessed prominent advances in predictive maintenance (PdM) for complex industrial systems. However, the existing PdM literature predominately separates two inter-related stages—prognostics and maintenance decision making—and either studies remaining useful life (RUL) prognostics without considering maintenance issues or optimizes maintenance plans based on given/assumed prognostic information. In this paper, we propose a prognostic driven dynamic PdM framework by integrating the two stages. In the prognostic stage, we characterize the latent structure between degradation features and RULs through a Bayesian deep learning model. By doing so, the framework is capable of generating a predictive RUL distribution that can well describe prognostic uncertainties. In the maintenance decision-making stage, we dynamically update maintenance and spare-part ordering decisions with the latest predictive RUL information, while satisfying operational constraints. The advantage of the proposed PdM framework is validated by comparison with several benchmark polices, based on the famous C-MAPSS turbofan engine data set.

Parent communication with care teams and preparation for family meetings in the paediatric cardiac ICU: a qualitative study.

The paediatric cardiac ICU presents unique challenges to optimal communication practices, which may impact participation in medical decision-making and long-term psychosocial outcomes for families. This study characterised parent perceptions of (1) team practices that impeded or facilitated communication and (2) preparation for family meetings with interprofessional care teams during extended cardiac ICU admissions. A purposive sample of parents of children admitted to the cardiac ICU was selected to participate in interviews about their communication experiences. Data were analysed using a grounded theory approach. Twenty-three parents of 18 patients participated with an average length of stay of 55 days at the time of interview. Team practices that impeded communication included inaccurate/incomplete communication, inconsistent within team communication/coordination, and feeling overwhelmed by too many team members/questions. Team practices that facilitated communication included valuing parent preferences, provider continuity, explaining jargon, and eliciting questions. Preparation for family meetings included team practices, parental preferences, and experiences when learning about family meetings (including apprehension about meetings). Family meetings were described as valued opportunities to improve communication. Communication with medical teams represents a modifiable determinant of long-term outcomes for families of children in the cardiac ICU. When parents are included as valued members of their child's care team, they are more likely to feel a sense of control over their child's outcomes, even in the face of prognostic uncertainty. Family meetings represent an important opportunity to repair fractures in trust between families and care teams and overcome barriers to communication between parties.

Temporal uncertainty in disease diagnosis.

There is a profound paradox in modern medical knowledge production: The more we know, the more we know that we (still) do not know. Nowhere is this more visible than in diagnostics and early detection of disease. As we identify ever more markers, predictors, precursors, and risk factors of disease ever earlier, we realize that we need knowledge about whether they develop into something experienced by the person and threatening to the person's health. This study investigates how advancements in science and technology alter one type of uncertainty, i.e., temporal uncertainty of disease diagnosis. As diagnosis is related to anamnesis and prognosis it identifies how uncertainties in all these fields are interconnected. In particular, the study finds that uncertainty in disease diagnosis has become more subject to prognostic uncertainty because diagnosis is more connected to technologically detected indicators and less closely connected to manifest and experienced disease. These temporal uncertainties pose basic epistemological and ethical challenges as they can result in overdiagnosis, overtreatment, unnecessary anxiety and fear, useless and even harmful diagnostic odysseys, as well as vast opportunity costs. The point is not to stop our quest for knowledge about disease but to encourage real diagnostic improvements that help more people in ever better manner as early as possible. To do so, we need to pay careful attention to specific types of temporal uncertainty in modern diagnostics.

Functional Neuroimaging in Patients With Disorders of Consciousness: Caution Advised.

Functional Neuroimaging in Patients With Disorders of Consciousness: Caution Advised.

Hippocampal rotation is associated with ventricular atrial size.

Fetal ventriculomegaly is a source of apprehension for expectant parents and may present prognostic uncertainty for physicians. Accurate prenatal counseling requires knowledge of its cause and associated findings as the differential diagnosis is broad. We have observed an association between ventriculomegaly and incomplete hippocampal inversion. To determine whether ventricular size is related to incomplete hippocampal inversion. We retrospectively evaluated pre- and postnatal brain MRIs in normal subjects (mean GA, 31weeks; mean postnatal age, 27days) and patients with isolated ventriculomegaly (mean GA, 31weeks; mean postnatal age, 68days) at a single academic medical center. Lateral ventricular diameter, multiple qualitative and quantitative markers of hippocampal inversion, and evidence of intraventricular hemorrhage were documented. Incomplete hippocampal inversion and ventricular size were associated in both normal subjects (n=51) and patients with ventriculomegaly (n=32) (P<0.05). Severe ventriculomegaly was significantly associated with adverse clinical outcome in postnatal (P=0.02) but not prenatal (P=0.43) groups. In all additional cases of isolated ventriculomegaly, clinical outcome was normal over the time of assessment (mean 1±1.9years; range 0.01 to 10years). Lateral ventricular atrial diameter and incomplete hippocampal inversion are associated. Less hippocampal inversion correlates with larger atria. For every 1-mm increase in fetal ventricular size, the odds of incomplete hippocampal inversion occurring increases by a factor of 1.6 in normal controls and 1.4 in patients with ventriculomegaly.