scholarly journals The GoodHope Ehlers Danlos Syndrome Clinic: development and implementation of the first interdisciplinary program for multi-system issues in connective tissue disorders at the Toronto General Hospital

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Nimish Mittal ◽  
Daniel Santa Mina ◽  
Laura McGillis ◽  
Aliza Weinrib ◽  
P. Maxwell Slepian ◽  
...  
Keyword(s):  
Health Care ◽  
Connective Tissue ◽  
Health Care Providers ◽  
Diagnosis And Treatment ◽  
Care Providers ◽  
Connective Tissue Disorders ◽  
Ehlers Danlos Syndrome ◽  
Medical Specialties ◽  
Organ Systems ◽  
Danlos Syndrome

AbstractEhlers-Danlos Syndrome (EDS) are a heterogeneous group of genetic connective tissue disorders, and typically manifests as weak joints that subluxate/dislocate, stretchy and/or fragile skin, organ/systems dysfunction, and significant widespread pain. Historically, this syndrome has been poorly understood and often overlooked. As a result, people living with EDS had difficulty obtaining an accurate diagnosis and appropriate treatment, leading to untold personal suffering as well as ineffective health care utilization. The GoodHope EDS clinic addresses systemic gaps in the diagnosis and treatment of EDS. This paper describes a leap forward—from lack of awareness, diagnosis, and treatment—to expert care that is tailored to meet the specific needs of patients with EDS. The GoodHope EDS clinic consists of experts from various medical specialties who work together to provide comprehensive care that addresses the multi-systemic nature of the syndrome. In addition, EDS-specific self-management programs have been developed that draw on exercise science, rehabilitation, and health psychology to improve physical and psychosocial wellbeing and overall quality of life. Embedded into the program are research initiatives to shed light on the clinical presentation, underlying mechanisms of pathophysiology, and syndrome management. We also lead regular educational activities for community health care providers to increase awareness and competence in the interprofessional management of EDS beyond our doors and throughout the province and country.

scholarly journals Hereditary Connective Tissue Diseases in Young Adult Stroke: A Comprehensive Synthesis

2011 ◽  
Vol 2011 ◽  
pp. 1-18 ◽  
Author(s):  
Olivier M. Vanakker ◽  
Dimitri Hemelsoet ◽  
Anne De Paepe
Keyword(s):  
Connective Tissue ◽  
Metabolic Disorders ◽  
Type Iv Collagen ◽  
Connective Tissue Diseases ◽  
Haemorrhagic Stroke ◽  
Monogenic Disease ◽  
Connective Tissue Disorders ◽  
Ehlers Danlos Syndrome ◽  
Type Iv ◽  
Danlos Syndrome

Though the genetic background of ischaemic and haemorrhagic stroke is often polygenetic or multifactorial, it can in some cases result from a monogenic disease, particularly in young adults. Besides arteriopathies and metabolic disorders, several connective tissue diseases can present with stroke. While some of these diseases have been recognized for decades as causes of stroke, such as the vascular Ehlers-Danlos syndrome, others only recently came to attention as being involved in stroke pathogenesis, such as those related to Type IV collagen. This paper discusses each of these connective tissue disorders and their relation with stroke briefly, emphasizing the main clinical features which can lead to their diagnosis.

scholarly journals Respiratory Complications in Patients with Ehlers-Danlos Syndrome: A Systematic Review

2021 ◽  
Vol 7 (2) ◽  
pp. 1-7
Author(s):  
Christina Parducci ◽  
Keyword(s):  
Systematic Review ◽  
Connective Tissue ◽  
Connective Tissue Disorders ◽  
Respiratory Complications ◽  
Ehlers Danlos Syndrome ◽  
Danlos Syndrome

The Ehlers-Danlos Syndromes (EDS) are genetic connective tissue disorders that are currently categorized into 14 subtypes. Symptoms of each subtype overlap, with some distinct manifestations

scholarly journals Evaluating usability, effectiveness, and usage of telehealth technologies

2014 ◽  
Author(s):  
◽  
Mirna Becevic
Keyword(s):  
Health Care ◽  
Access To Care ◽  
Health Care Providers ◽  
New Technologies ◽  
Care Delivery ◽  
Traditional Approach ◽  
Additional Stress ◽  
Care Providers ◽  
Medical Specialties ◽  
Number Of Patients

Affordable Care Act (ACA) has allowed more patients that did not previously have health care insurance to have coverage and access to care. This increase in the number of patients seeking medical care will only add additional stress to the existing disproportion of supply and demand for health care providers. In addition, rising health care costs have major effect on how, where, and even if consumers will get needed care. This study examined three different telehealth platforms in three different medical specialties in order to evaluate the perception that they would be appropriate vehicles for increasing access to care. I also wanted to find out what the users' perceptions of these technologies are, as that can be a driving factor in adoption of new technologies. The first study examined the usability and acceptance of new mobile application in teledermatology clinic. The second study focused on usability and acceptance of ICU Robots in a medical ICU. Finally, the third study evaluated if children and youth currently using telepsychiatry as a care delivery method would have other in-person options if telehealth was not available. The results of these three studies point at the complexity and richness of telehealth. The adoption and acceptance of mHealth was very fast and streamlined. In the same fashion, children might not have other appropriate options for care if telepsychiatry was not available in rural Missouri. Interestingly, though, the provider acceptance of ICU Robots was slow, with some provider disengagements observed. This research contributes to the field of health informatics and medical informatics by evaluating adoption and usability of technologies from the provider perspective, vs. the more traditional approach of examining patient satisfaction, or even provider satisfaction without fully understanding the implications of attitudes on the adoption itself. This study has focused purposefully on different groups of providers using different types of telehealth technologies so we could try to see the bigger picture of how telehealth actually contributes to the health care organizational structure.

scholarly journals Considerations for lactation with Ehlers-Danlos syndrome: a narrative review

2022 ◽  
Vol 17 (1) ◽  
Author(s):  
Jimi Francis ◽  
Darby D. Dickton
Keyword(s):  
Connective Tissue ◽  
Human Milk ◽  
Joint Hypermobility ◽  
Narrative Review ◽  
Diagnostic Methods ◽  
Care Providers ◽  
Ehlers Danlos Syndrome ◽  
Lack Of Information ◽  
Skin Fragility ◽  
Danlos Syndrome

Abstract Background Ehlers-Danlos syndrome (EDS) is a rare genetic connective tissue condition that is poorly understood in relation to lactation. As diagnostic methods improve, prevalence has increased. EDS, a disorder that impacts connective tissue, is characterized by skin extensibility, joint hypermobility, and fragile tissue which can affect every organ and body system leading to complications during pregnancy, delivery, and the postpartum period. Traits of this disease can cause mild to severe physiologic and functional obstacles during lactation. Unfortunately, there is little clinical evidence and minimal guidance for lactation management, and providers may feel uncomfortable and hesitant to address these concerns with patients due to a lack of readily available resources on the subject and inexperience with such patients. This narrative review describes and discusses the types of EDS, identifying symptoms, considerations, and precautions for care providers to implement during lactation and breastfeeding. Methods An electronic search of relevant citations was conducted using the databases Cochrane, PubMed, and Google Scholar from 1 January 2000 to 1 November 2021. Search terms used were Ehlers-Danlos syndrome, Hypermobility Syndrome, breastfeeding, lactation, breastmilk expression, breastmilk collection, human milk expression, human milk collection, and infant feeding. The search of these databases yielded zero results. As no research articles on EDS were directly related to lactation, this narrative review includes articles found that related to the health of mothers relevant to maternal function during lactation. Discussion For the healthcare provider, identifying characteristics of EDS can improve the management of lactation challenges. Mothers may experience generalized symptoms from gastrointestinal distress to fatigue or chronic pain, while they also may suffer from more specific joint complaints and injuries, such as dislocations / subluxations, or skin fragility. Such obstacles can generate impediments to breastfeeding and create unique challenges for breastfeeding mothers with EDS. Unfortunately, new mothers with these symptoms may have them overlooked or not addressed, impacting a mother’s ability to meet her breastfeeding intentions. While there are some published research manuscripts on EDS and pregnancy, there is a lack of information regarding breastfeeding and lactation. Additional research is needed to help guide EDS mothers to achieve their breastfeeding intentions.

Knowledge and attitudes of permanent chemotherapy-induced alopecia among health care providers.

2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 142-142
Author(s):  
Jenna Rose Stoehr ◽  
Cory Kosche ◽  
Jennifer N. Choi
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Nurse Practitioners ◽  
Care Providers ◽  
Chi Square ◽  
Hospital System ◽  
Medical Specialties ◽  
General Internal ◽  
Correct Definition ◽  
Significant Difference

142 Background: Reports of permanent chemotherapy-induced alopecia (PCIA) are increasing in the field of oncodermatology, but there is a dearth of information regarding how it is recognized and managed by health care providers (HCPs) across different medical specialties. Methods: An electronic survey was distributed to HCPs (resident physicians, attending physicians, and nurse practitioners) in the departments of dermatology, oncology, and general internal medicine (GIM) within one Midwestern hospital system. Results: Of the 62 participants (response rate: 13%), there were 19 from dermatology, 20 from oncology, and 23 from GIM. Responses were analyzed with descriptive statistics, and chi-square and ANOVA tests. There was a significant difference in the number of subjects that had heard of PCIA prior to starting the survey (Derm: 79%, Onc: 30%, GIM: 22%, p<0.05). A larger percentage of dermatology and oncology HCPs knew the correct definition of the condition (alopecia persisting >6 months) than GIM (42% and 45% vs. 17%) and significantly more had encountered patients with the condition (47% and 45% vs. 17%). More providers in dermatology and GIM knew how to diagnose PCIA compared to oncology (84% and 83% vs. 70%). Dermatology HCPs were the only participants who had attempted to treat patients with PCIA. Most providers across the three specialties believed that patients would accept PCIA treatment that was topical, oral, injectable, and required frequent administration or monitoring, but not treatment that was expensive or high risk. A majority of HCPs surveyed (94%) agreed that the diagnosis of PCIA is important. However, there was a significant difference in the confidence of HCPs in diagnosing and managing PCIA. A minority of dermatology providers (2/19) specified that they would refer to an alopecia or oncodermatology specialist, while the majority of oncology and GIM providers would refer to dermatology. Conclusions: The results of this survey identify knowledge gaps about PCIA amongst health care providers. Therefore, education and multidisciplinary engagement should be pursued in order to improve awareness, diagnosis, referral, and management of PCIA as part of survivorship care.

scholarly journals The experience of patients with cancer during diagnosis and treatment planning: a descriptive study of Canadian survey results

2017 ◽  
Vol 24 (5) ◽  
pp. 332 ◽  
Author(s):  
A.C. Coronado ◽  
K. Tran ◽  
J. Chadder ◽  
J. Niu ◽  
S. Fung ◽  
...  
Keyword(s):  
Health Care ◽  
Patient Satisfaction ◽  
Treatment Planning ◽  
Health Care Providers ◽  
Cancer Diagnosis ◽  
Care Provider ◽  
Care Quality ◽  
Diagnosis And Treatment ◽  
Care Providers ◽  
Ambulatory Oncology

Background Communication with health care providers during diagnosis and treatment planning is of special importance because it can influence a patient’s emotional state, attitude, and decisions about their care. Qualitative evidence suggests that some patients experience poor communication with health care providers and have negative experiences when receiving their cancer diagnosis. Here, we use survey data from 8 provinces to present findings about the experiences of Canadian patients, specifically with respect to patient–provider communication, during the diagnosis and treatment planning phases of their cancer care.Methods Data from the Ambulatory Oncology Patient Satisfaction Survey, representing 17,809 survey respondents, were obtained for the study.Results Most respondents (92%) felt that their care provider told them of their cancer diagnosis in a sensitive manner. Most respondents (95%) also felt that they were provided with enough information about their planned cancer treatment. In contrast, more than half the respondents who had emotional concerns upon diagnosis (56%) were not referred to services that could help with their anxieties and fears. Also, 18% of respondents reported that they were not given the opportunity to discuss treatment options with a care provider, and 17% reported that their care providers did not consider their travel concerns while planning for treatment.Conclusions Measuring the patient experience allows for an understanding of how well the cancer control system is addressing the physical, emotional, and practical needs of patients during diagnosis and treatment planning. Although results suggest high levels of patient satisfaction with some aspects of care, quality improvement efforts are still needed to provide person-centred care.

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