Improving Social Media-Based Support Groups for the Rare Disease Community: Interview Study With Patients and Parents of Children with Rare and Undiagnosed Diseases.

Background: The rarity that is inherent in rare disease (RD) often means that patients and parents of children with RDs feel uniquely isolated and therefore are unprepared or unsupported in their care. To overcome this isolation, many within the RD community turn to the internet, and social media groups in particular, to gather useful information about their RDs. While previous research has shown that social media support groups are helpful for those affected by RDs, it is unclear what these groups are particularly useful or helpful for patients and parents of children with RDs.

Patient perceptions of genetic counselors' role and emotional support needs in adults with Parkinson's disease.

One of the roles of a genetic counselor, when returning genetic test results for Parkinson's disease (PD), is to provide emotional support to the patient. However, whether or not these needs are being met in the genetic counseling setting is unknown. In this cross-sectional qualitative study, semi-structured interviews with 15 PD research participants were conducted to evaluate their emotional needs and expectations throughout the genetic counseling process.

Social media use by patients with hypermobile Ehlers-Danlos syndrome.

Background: Patients with uncommon genetic conditions often face limited in-person resources for social and informational support. Hypermobile Ehlers-Danlos syndrome (hEDS) is a rare or underdiagnosed hereditary disorder of the connective tissue, and like those with similar diseases, patients with hEDS have begun to turn to social media in search of care and community. The aims of our study were to understand the usage habits and perceptions of utility of social media use for patients with hEDS in order to formulate suggestions for how clinicians may best engage these and similar patient populations about this topic.

Patient interest in the development of a center for Ehlers-Danlos syndrome/hypermobility spectrum disorder in the Chicagoland region.

Background: The Ehlers-Danlos Syndromes (EDS) are a group of connective tissue disorders that are hereditary in nature and characterized by joint hypermobility and tissue fragility. The complex nature of this unique patient population requires multidisciplinary care, but appropriate centers for such care do not exist in large portions of the country. Need for more integrated services has been identified in Chicagoland, or Chicago and its suburbs.

Effects of hypermobile Ehlers-Danlos syndrome patients on the workflow and professional satisfaction of genetic counselors.

The Ehlers-Danlos syndromes (EDS), a group of uncommon connective tissue disorders, are, paradoxically, an increasingly common referral to genetics specialists. Of the 13 types of EDS, the most common is hypermobile EDS (hEDS), which lacks a known genetic etiology and for which diagnosis is achieved via a robust set of clinical criteria. While previous investigations have characterized many clinical aspects of EDS as a syndrome and patients' lived experiences, a gap in the literature exists regarding clinicians' experience caring for these individuals.

Lost in translation: the history of the Ebers Papyrus and Dr. Carl H. von Klein.

While the Ebers Papyrus is understood to be one of the oldest and most complete contemporaneous perspectives on Ancient Egyptian healing practices, nothing has yet been said about the biography of its first English-language translator, Dr. Carl H. von Klein.

^{133}In: A Rosetta Stone for Decays of r-Process Nuclei.

The β decays from both the ground state and a long-lived isomer of ^{133}In were studied at the ISOLDE Decay Station (IDS). With a hybrid detection system sensitive to β, γ, and neutron spectroscopy, the comparative partial half-lives (logft) have been measured for all their dominant β-decay channels for the first time, including a low-energy Gamow-Teller transition and several first-forbidden (FF) transitions. Uniquely for such a heavy neutron-rich nucleus, their β decays selectively populate only a few isolated neutron unbound states in ^{133}Sn.

Patient Interest in the Development of a Center for Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorder in the Chicagoland Region.

Background: The Ehlers-Danlos Syndromes (EDS) are a set of connective tissue disorders that are hereditary in nature and characterized by joint hypermobility and tissue fragility. The complex nature of this unique patient population requires multidisciplinary care, but appropriate centers for such care do not exist in large portions of the country. Need for more integrated services has been identified in the Chicagoland region.

Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes.

Patients with hypermobile Ehlers Danlos Syndrome often experience psychological distress resulting from the perceived hostility and disinterest of their clinicians. We conducted 26 in-depth interviews with patients to understand the origins of this trauma and how it could be addressed in practice. We found that the cumulative effects of numerous negative encounters lead patients to lose trust in their healthcare providers and the healthcare system, and to develop acute anxiety about returning to clinic to seek further care.

Content Analysis of Emoji and Emoticon Use in Clinical Texting Systems.

Importance: Emoji and emoticons are quickly becoming an omnipresent feature of virtual communication. As health care systems increasingly adopt clinical texting applications, it is critical to understand how clinicians use these ideograms with colleagues and how it may affect their interactions.

Objective: To evaluate the functions that emoji and emoticons serve in clinical text messages.

Rare Disease, Advocacy and Justice: Intersecting Disparities in Research and Clinical Care.

Rare genetic diseases collectively impact millions of individuals in the United States. These patients and their families share many challenges including delayed diagnosis, lack of knowledgeable providers, and limited economic incentives to develop new therapies for small patient groups. As such, rare disease patients and families often must rely on advocacy, including both self-advocacy to access clinical care and public advocacy to advance research.

Comorbidity, misdiagnoses, and the diagnostic odyssey in patients with hypermobile Ehlers-Danlos syndrome.

Purpose: The extent of comorbidity and misdiagnosis had been unclear for patients with hypermobile Ehlers-Danlos Syndrome (hEDS), a hereditary connective tissue disorder. The objectives of the study were to (1) describe the prevalence of alternative diagnoses that these patients have received, (2) assess their endorsement and rejection of these diagnoses, and (3) characterize their experience on their "diagnostic odysseys."

Methods: We circulated a survey through the Ehlers-Danlos Society's Global Registry, asking participants which diagnoses they had received and whether they believed they were still accurate.

Patients' strategies for numeric pain assessment: a qualitative interview study of individuals with hypermobile Ehlers-Danlos Syndrome.

Purpose: Chronic pain is a common feature of hypermobile Ehlers-Danlos Syndrome (hEDS), yet how patients assess and communicate their pain remains poorly understood. The objective of the present study was to explore the use of numeric pain assessment in individuals with hEDS, from a patient-centered perspective.

Materials And Methods: Our analysis is based on in-depth qualitative interviews.

Use of complementary and alternative medicine by patients with hypermobile Ehlers-Danlos Syndrome: A qualitative study.

Background: Patients with hypermobile Ehlers-Danlos Syndrome (hEDS) often make use of complementary and alternative medical (CAM) techniques to manage their chronic pain and other symptoms. Nevertheless, how they use CAM, which techniques they favor, and how CAM use affects their allopathic care remain unclear. The purpose of this qualitative study was to understand patients' personal experiences with CAM and its role in their symptom management.

Creating a culture of support for nursing surveillance.

Background: An estimated 98,000 deaths annually result from medical errors. Preventing these deaths must be a US healthcare goal. Surveillance decreases adverse events.

Genetic Essentialism and Social Warranting.

Genetic essentialism is the notion that genes can reveal to us the core of what it means to be humans and individuals, that our genes are the ultimate source of who we are and who we have been and will be. A recent collection of articles in a special issue of the Hastings Center Report describes the current standing of this term as embattled and potentially oversold but not necessarily without merit. This article highlights particularly valuable insights from the special issue and provides a novel insight into the movement of genetic essentialist attitudes into historically separate domains of medical knowledge-making, or the "social warranting" of genetic epistemology.

Nursing surveillance of respiratory adverse events among hospitalized adults: A systematic review to guide evidence-based practice.

Background: Nursing surveillance (NS) involves the purposeful, ongoing acquisition, interpretation, and synthesis of patient data for clinical decision-making. Surveillance is used to identify patients with early signs of distress and prevent adverse events. The processes that support and measure the outcomes of nursing surveillance are not clearly specified.

Nursing surveillance: A concept analysis.

Aim: To provide a framework to assess and evaluate nursing surveillance of patients.

Background: The Nursing Interventions Classifications define surveillance as the purposeful and ongoing acquisition, interpretation, and synthesis of patient data for clinical decision making and is essential for improving patient safety.

Data Source: The existing literature was searched using CINAHL, OVID, EmCare, and 11 ScienceDirect databases.