scholarly journals Multisystem comorbidities in classic Rett syndrome: a scoping review

2020 ◽  
Vol 4 (1) ◽  
pp. e000731
Author(s):  
Cary Fu ◽  
Dallas Armstrong ◽  
Eric Marsh ◽  
David Lieberman ◽  
Kathleen Motil ◽  
...  
Keyword(s):  
Primary Care ◽  
Rett Syndrome ◽  
Care Coordination ◽  
Clinical Care ◽  
Primary Care Providers ◽  
Cardiac Conduction ◽  
Care Providers ◽  
Medical Comorbidities ◽  
Medical Needs ◽  
Organ Systems

BackgroundRett syndrome (RTT) is a severe, progressive neurodevelopmental disorder with multisystem comorbidities that evolve across a patient’s lifespan requiring attentive coordination of subspecialty care by primary care providers. A comprehensive, up-to-date synthesis of medical comorbidities in RTT would aid care coordination and anticipatory guidance efforts by healthcare providers. Our objective was to review and summarise published evidence regarding prevalence of RTT medical comorbidities across all relevant organ systems.MethodsSearch of PubMed from January 2000 to July 2019 was performed using the search terms (Rett and MECP2 AND patient) OR (Rett and MECP2 AND cohort). Articles reporting the prevalence of clinical findings in RTT were assessed with respect to the size and nature of the cohorts interrogated and their relevance to clinical care.ResultsAfter review of over 800 records, the multisystem comorbidities of RTT were summarised quantitatively from 18 records comprising both retrospective and prospective cohorts (31–983 subjects). Neurological comorbidities had the highest prevalence, occurring in nearly all individuals with gastrointestinal and orthopaedic concerns almost as prevalent as neurological. With the exception of low bone mineral content which was relatively common, endocrine comorbidities were seen in only around one-third of patients. Although more prevalent compared with the general population, cardiac conduction abnormalities were the least common comorbidity in RTT.ConclusionsEffective care coordination for RTT requires knowledge of and attention to multiple comorbidities across multiple unrelated organ systems. Many issues common to RTT can potentially be managed by a primary care provider but the need for sub-specialist referral can be anticipated. Since the median life expectancy extends into the sixth decade with evolving subspecialty requirements throughout this time, paediatric providers may be tasked with continued coordination of these comorbidities or transitioning to adult medicine and specialists with experience managing individuals with complex medical needs.

scholarly journals Consensus guidelines on managing Rett syndrome across the lifespan

2020 ◽  
Vol 4 (1) ◽  
pp. e000717
Author(s):  
Cary Fu ◽  
Dallas Armstrong ◽  
Eric Marsh ◽  
David Lieberman ◽  
Kathleen Motil ◽  
...  
Keyword(s):  
Primary Care ◽  
Rett Syndrome ◽  
Health Professionals ◽  
Best Practice ◽  
Neurodevelopmental Disorder ◽  
Primary Care Providers ◽  
Care Providers ◽  
Medical Comorbidities ◽  
Modified Delphi ◽  
Delphi Approach

BackgroundRett syndrome (RTT) is a severe neurodevelopmental disorder with complex medical comorbidities extending beyond the nervous system requiring the attention of health professionals. There is no peer-reviewed, consensus-based therapeutic guidance to care in RTT. The objective was to provide consensus on guidance of best practice for addressing these concerns.MethodsInformed by the literature and using a modified Delphi approach, a consensus process was used to develop guidance for care in RTT by health professionals.ResultsTypical RTT presents early in childhood in a clinically recognisable fashion. Multisystem comorbidities evolve throughout the lifespan requiring coordination of care between primary care and often multiple subspecialty providers. To assist health professionals and families in seeking best practice, a checklist and detailed references for guidance were developed by consensus.ConclusionsThe overall multisystem issues of RTT require primary care providers and other health professionals to manage complex medical comorbidities within the context of the whole individual and family. Given the median life expectancy well into the sixth decade, guidance is provided to health professionals to achieve current best possible outcomes for these special-needs individuals.

scholarly journals Asylum Seekers and Swiss Nationals with Low-Acuity Complaints: Disparities in the Perceived level of Urgency, Health Literacy and Ability to Communicate—A Cross-Sectional Survey at a Tertiary Emergency Department

2020 ◽  
Vol 17 (8) ◽  
pp. 2769 ◽  
Author(s):  
Karsten Klingberg ◽  
Adrian Stoller ◽  
Martin Müller ◽  
Sabrina Jegerlehner ◽  
Adam D. Brown ◽  
...  
Keyword(s):  
Primary Care ◽  
Health Literacy ◽  
Primary Care Providers ◽  
Control Group ◽  
Care Providers ◽  
Health Seeking ◽  
Health Seeking Behavior ◽  
Medical Needs ◽  
Seeking Behavior ◽  
Attending Physicians

Background: Emergency departments (EDs) are being increasingly used for low-acuity conditions and as primary care providers. Research indicates that patients with the status of asylum seeker (AS) may be seeking care in EDs at higher levels than nationals. The aim of this study was to identify disparities in the use of emergency care between AS and Swiss nationals (SN) with non-urgent complaints. Methods: Data were obtained from a survey in the period 01/12/2016–31/07/2017 of walk-in low-acuity patients attending the ED of the University Hospital Bern (Switzerland). AS and a gender, age-matched control group of SN of ≥16 years of age were included. Sociodemographic and survey data comprised information about health-seeking behavior in the home and reception country, knowledge of health care systems (HCSs), barriers to care and perceived acuity of the visit. Furthermore, attending physicians assessed the level of urgency of each case. Results: Among AS patients, 30.2% reported that they had no knowledge of the Swiss HCS. In total, 14.2% considered that their medical needs were non-urgent. On the other hand, 43.4% of the attending physicians in the ER considered that the medical needs were non-urgent. This contrast was less pronounced in SN patients. The majority of AS (63.2%) and SN (67.6%) patients sought care from the ED without first contacting a GP. In 53.8% of cases, an interpreter was needed during the ED consultation. Conclusions: Several factors associated with health-seeking behavior in the ED differed between AS and SN patients. Measures to increase health literacy, provision of easily accessible primary care services and intercultural-trained staff could improve quality of care and reduce the usage of EDs as primary care providers.

"Team Dynamics, Clinical Work Satisfaction, and Care Coordination Between Primary Care Providers"

2015 ◽  
Vol 2015 (1) ◽  
pp. 13538
Author(s):  
Hummy Song ◽  
Molly Ryan ◽  
Shalini A Tendulkar ◽  
Alyna T Chien ◽  
Josephine Fisher ◽  
...  
Keyword(s):  
Primary Care ◽  
Care Coordination ◽  
Work Satisfaction ◽  
Clinical Work ◽  
Primary Care Providers ◽  
Team Dynamics ◽  
Care Providers

Evaluation of coordination of cancer care between designated cancer hospitals and primary care providers: Results from a nationwide survey in Japan.

2018 ◽  
Vol 36 (7_suppl) ◽  
pp. 84-84
Author(s):  
Taro Tomizuka ◽  
Tomone Watanabe ◽  
Satoru Kamitani ◽  
Takahiro Higashi
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Care Coordination ◽  
Cancer Care ◽  
Critical Path ◽  
Primary Care Providers ◽  
Care Providers ◽  
Follow Up Care ◽  
Cancer Specialist

84 Background: To improve coordination of cancer care between cancer specialist hospitals and primary care providers (PCPs), the Japanese government accredited cancer specialist hospitals, so called “designated cancer care hospitals (DCCHs)” and introduced “Cancer care coordination instruction fee” which PCPs can receive if they share a cancer critical path (Japanese version of Survivorship Care Plans) of each cancer patient with DCCHs. We sought to assess the current status of coordination of cancer care in Japan and communication between DCCHs and PCPs from PCPs’ point of view. Methods: A cross-sectional mail survey was administered to randomly selected clinic-based PCPs (4,000 clinics) from a nation-wide database of medical institutions authorized by Ministry of Health, Labour and Welfare Japan to treat patients with health insurance (87,869 clinics). The survey evaluated how much PCPs provided cancer follow-up care and how well DCCHs coordinated care and communicated with PCPs in cancer survivorship. Results: 1,873 PCPs returned the questionnaire (response rate: 46.8%). 1,223 (65.3%) answered to provide cancer follow-up care in outpatient setting. Most of the PCPs which provided cancer follow-up care evaluated the care coordination and support by DCCHs were satisfactory (946, 77.4%) but the degree of good evaluation varied by region (highest: 91.3%, lowest: 45.8%). In regression analysis, provision of palliative care by PCPs (OR 1.52 95%CI 1.05-2.17) and use of cancer critical path (OR 2.10 95%CI 1.63-2.71) were significantly correlated with better evaluation of communication and care coordination. Conclusions: DCCHs communicated well with PCPs and PCPs were satisfied with the communication and care coordination by DCCHs. Provision of palliative care by PCPs and use of cancer critical path are likely to lead good care coordination in cancer care.

scholarly journals MP05: Injuries in refugee children presenting to a paediatric emergency department

CJEM ◽  
2018 ◽  
Vol 20 (S1) ◽  
pp. S41-S42
Author(s):  
E. Zhang ◽  
F. Razik ◽  
S. Ratnapalan
Keyword(s):  
Primary Care ◽  
Emergency Department ◽  
Primary Care Physicians ◽  
Clinical Care ◽  
Tertiary Care ◽  
Primary Care Providers ◽  
Refugee Children ◽  
Medical Attention ◽  
Care Providers ◽  
Ed Visits

Introduction: The number of refugees accepted to Canada grew from 24,600 in 2014 to 46,700 in 2016. Many of these refugees have young families and the number of child refugees has increased accordingly. Although child refugee health care has been in the forefront of media and medical attention recently, there is limited data on injury patterns in this population. Canadian Hospitals Injury Reporting and Prevention Program (CHIRPP) collects data on injuries in children presenting to the emergency department (ED). Our objective is to examine the clinical presentations and outcomes of refugee children with injuries presenting to a tertiary care paediatric ED. Methods: Our paediatric hospital has approximately 70,000 ED visits per year of which 13,000 are due to injuries and/or poisonings. The CHIRPP database was accessed to identify children with injuries presenting to our ED from April 2014 to March 2017 with Interim Federal Health Program (IFHP) registration status. All patient charts were reviewed to extract demographic and clinical care information. Results: There were 74 children with 81 ED visits during the study period of whom 19% were transferred from other facilities. Most of them (72%) were males with a mean age of 8.7 years (standard deviation 4.29). There were significant medical histories in 32% of children. The presentation to our ED (greater than 24 hours post-injury) was seen in 25% of visits. Twenty five percent of injured children were seen in our ED. The distribution of Canadian Triage Acuity Score (CTAS) scores 1, 2, 3, 4, and 5 were 0%, 16%, 37%, 46% and 1% respectively. However, subspecialty consultations were required in 69%, 60% and 27% of CTAS 2, 3 and 4 children respectively. Overall, 46% of all patients required subspecialty consults. The top three categories of injuries include fractures (23%), soft tissue injuries (20%) and lacerations (17%). More than half (56%) required diagnostic imaging. Most (89%) were treated in ED and discharged (average length-of-stay 3 hours 55 minutes) and 11% required admissions. 47% of children lacked primary care physicians. Conclusion: Almost half of refugee children with IFHP status require DI testing, sub-specialty consultations and primary care referrals when presenting to our ED with injuries. Follow up arrangements are needed as many do not have access to primary care providers. This demonstrates a need for securing primary care providers early for this vulnerable population.

scholarly journals Effect of a Digital Precision Public Health Intervention for Care Coordination During Covid-19 Pandemic in Australia: A Real World Study

2021 ◽  
Author(s):  
Andre Q Andrade ◽  
Jean-Pierre Calabretto ◽  
Nicole L Pratt ◽  
Lisa M Kalisch-Ellett ◽  
Vanessa T LeBlanc ◽  
...  
Keyword(s):  
Public Health ◽  
Primary Care ◽  
Continuity Of Care ◽  
Care Coordination ◽  
Real World ◽  
Primary Care Providers ◽  
Patient Specific ◽  
Specific Information ◽  
Care Providers ◽  
Precision Public Health

Abstract Background: Emergencies disproportionally affect vulnerable populations. The COVID-19 pandemic affected older patients with co-morbidities both directly due to more severe infection and indirectly by affecting care provision. To promote continuity of care, public health professionals require tools to quickly and precisely coordinate with primary care providers. This study evaluated whether digital interventions powered by current existing infrastructure are more effective than conventional interventions in promoting primary care appointments during the COVID-19 pandemic. Methods: We developed a digital intervention delivered by secure messaging and compared it to a post delivered intervention to promote continuity of care for vulnerable veterans during COVID-19 in a real world, non-randomised, interventional study. The study was implemented as part of the Veterans’ MATES program, an Australian Government Department of Veterans’ Affairs program to promote improvements in health care for veterans. The intervention provided patient specific information to general practitioners (GPs) to support continuity of care, alongside mailed education to veterans. The intervention key messages were to maintain regular contact with care providers and to continue to adhere to health plans. The intervention took place in April 2020, during the first weeks of COVID-19 social distancing rules in Australia. The main outcome was time to first appointment with the primary general practitioner (GP) measured using a Cox proportional hazards model.Results: GPs received digital messaging for 51,052 veterans and post messaging for 26,859 veterans. The proportion of patients seeing their primary GP during the three months following intervention was higher in the digital group (77.8%) than the post group (61.5%) (p<0.01). Being in the digital group was associated with earlier appointments. Conclusion: Current infrastructure coupled with innovative solutions is effective in promoting care coordination at scale during national emergencies, opening up new perspectives for precision public health initiatives.

Improving home-based providers’ communication to primary care providers to enhance care coordination

2014 ◽  
Vol 19 (10) ◽  
pp. 921-931 ◽  
Author(s):  
Amber M. Gum ◽  
Natalie D. Dautovich ◽  
Jennifer Greene ◽  
Anne Hirsch ◽  
Lawrence Schonfeld
Keyword(s):  
Primary Care ◽  
Care Coordination ◽  
Primary Care Providers ◽  
Care Providers ◽  
Home Based

scholarly journals Challenges and insights in implementing coordinated care between oncology and primary care providers: a Canadian perspective

2017 ◽  
Vol 24 (2) ◽  
pp. 120 ◽  
Author(s):  
J.R. Tomasone ◽  
M. Vukmirovic ◽  
M.C. Brouwers ◽  
E. Grunfeld ◽  
R. Urquhart ◽  
...  
Keyword(s):  
Primary Care ◽  
Care Coordination ◽  
Cancer Care ◽  
Program Planning ◽  
Primary Care Providers ◽  
Models Of Care ◽  
Future Research ◽  
Care Providers ◽  
Coordinated Care ◽  
Program Support

We report here on the current state of cancer care coordination in Canada and discuss challenges and insights with respect to the implementation of collaborative models of care. We also make recommendations for future research. This work is based on the findings of the Canadian Team to Improve Community-Based Cancer Care Along the Continuum (canimpact) casebook project. The casebook project identified models of collaborative cancer care by systematically documenting and analyzing Canadian initiatives that aim to improve or enhance care coordination between primary care providers and oncology specialists. The casebook profiles 24 initiatives, most of which focus on breast or colorectal cancer and target survivorship or follow-up care.Current key challenges in cancer care coordination are associated with establishing program support, engaging primary care providers in the provision of care, clearly defining provider roles and responsibilities, and establishing effective project or program planning and evaluation. Researchers studying coordinated models of cancer care should focus on designing knowledge translation strategies with updated and refined governance and on establishing appropriate protocols for both implementation and evaluation.

Sign in / Sign up

Export Citation Format

Share Document