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 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 VitalSign6: A Primary Care First (PCP-First) Model for Universal Screening and Measurement-Based Care for Depression

2019 ◽  
Vol 12 (2) ◽  
pp. 71 ◽  
Author(s):  
Madhukar Trivedi ◽  
Manish Jha ◽  
Farra Kahalnik ◽  
Ronny Pipes ◽  
Sara Levinson ◽  
...  
Keyword(s):  
Mental Health ◽  
Primary Care ◽  
Mental Health Professionals ◽  
Health Professionals ◽  
Universal Screening ◽  
Primary Care Providers ◽  
The United States ◽  
Care Providers ◽  
Similar Treatment ◽  
Measurement Based Care

Major depressive disorder affects one in five adults in the United States. While practice guidelines recommend universal screening for depression in primary care settings, clinical outcomes suffer in the absence of optimal models to manage those who screen positive for depression. The current practice of employing additional mental health professionals perpetuates the assumption that primary care providers (PCP) cannot effectively manage depression, which is not feasible, due to the added costs and shortage of mental health professionals. We have extended our previous work, which demonstrated similar treatment outcomes for depression in primary care and psychiatric settings, using measurement-based care (MBC) by developing a model, called Primary Care First (PCP-First), that empowers PCPs to effectively manage depression in their patients. This model incorporates health information technology tools, through an electronic health records (EHR) integrated web-application and facilitates the following five components: (1) Screening (2) diagnosis (3) treatment selection (4) treatment implementation and (5) treatment revision. We have implemented this model as part of a quality improvement project, called VitalSign6, and will measure its success using the Reach, Efficacy, Adoption, Implementation, and Maintenance (RE-AIM) framework. In this report, we provide the background and rationale of the PCP-First model and the operationalization of VitalSign6 project.

scholarly journals Promoting rational antibiotics prescribing for non-complicated infections: Understanding social influence in primary care networks in Germany

2019 ◽  
Author(s):  
Regina Poss-Doering ◽  
Martina Kamradt ◽  
Katharina Glassen ◽  
Edith Andres ◽  
Petra Kaufmann-Kolle ◽  
...  
Keyword(s):  
Social Support ◽  
Primary Care ◽  
Social Influence ◽  
Health Professionals ◽  
Best Practice ◽  
Care Providers ◽  
Self Reflection ◽  
Physician Health ◽  
Depth Analysis ◽  
Improvement Programs

Abstract Primary care networks in Germany are formalized regional collaborations of physicians and other healthcare providers. Common goals are optimized healthcare processes and services for patients, enhanced communication, agency for professional concerns and strengthened economic power. In the ARena study (Sustainable reduction of antibiotic-induced antimicrobial resistance), 14 primary care networks in two federal German states aimed to promote appropriate antibiotics use for acute non-complicated infections by fostering awareness and understanding. Factors related to the role of primary care networks were to be identified. Methods For this study, audio-recorded telephone interviews were conducted with physicians, non-physician health professionals and stakeholder representatives. Pseudonymized verbatim transcripts were coded using thematic analysis. In-depth analysis was based on the inductive categories ‘social support’, ‘social learning’, ‘social normative pressures’ and ‘social contagion’ to reflect social influence processes. To foster understanding of the networks’ potential impact on antibiotics prescribing, data generated through surveys with physicians and non-physician health professionals were analyzed descriptively. Results : Social influence processes proved to be relevant regarding knowledge transfer, manifestation of best-practice care and self-reflection. Peer communication was seen as great asset, main reason for membership and affirmative for own perspectives. All interviewed physicians (n=27) considered their network to be a strong support factor for daily routines, introduction of new routines, and continuity of care. They utilized network-offered training programs focusing on best practice guideline-oriented use of antibiotics and considered their networks supportive in dealing with patient expectations. A shared attitude combined with ARena intervention components facilitated reflected management of antibiotics prescribing. Non-physician health professionals (n=11) also valued network peer exchange. They assumed their employers joined networks to offer improved and continuous care. Stakeholders (n=7) expected networks and their members to be drivers for care optimization. Conclusion: Primary care networks play a crucial role in providing a platform for professional peer exchange, social support and reassurance. With regards to their impact on antibiotics prescribing for acute non-complicated infections, networks seem to facilitate and amplify quality improvement programs by providing a platform for refreshing awareness, knowledge and self-reflection among care providers. They are well suited to promote a rational use of antibiotics. .

scholarly journals Promoting rational antibiotic prescribing for non-complicated infections: Understanding social influence in primary care networks in Germany

2020 ◽  
Author(s):  
Regina Poss-Doering ◽  
Martina Kamradt ◽  
Katharina Glassen ◽  
Edith Andres ◽  
Petra Kaufmann-Kolle ◽  
...  
Keyword(s):  
Social Support ◽  
Primary Care ◽  
Social Influence ◽  
Health Professionals ◽  
Best Practice ◽  
Antibiotic Prescribing ◽  
Care Providers ◽  
Self Reflection ◽  
Physician Health ◽  
Improvement Programs

Abstract Background Primary care networks in Germany are formalized regional collaborations of physicians and other healthcare providers. Common goals are optimized healthcare processes and services for patients, enhanced communication, agency for professional concerns and strengthened economic power. In the ARena study (Sustainable reduction of antibiotic-induced antimicrobial resistance), 14 primary care networks in two federal German states aimed to promote appropriate antibiotics use for acute non-complicated infections by fostering awareness and understanding. Factors related to the role of primary care networks were to be identified. Methods For this study, audio-recorded telephone interviews were conducted with physicians, non-physician health professionals and stakeholder representatives. Pseudonymized verbatim transcripts were coded using thematic analysis. In-depth analysis was based on the inductive categories ‘social support’, ‘social learning’, ‘social normative pressures’ and ‘social contagion’ to reflect social influence processes. Data generated through a survey with physicians and non-physician health professionals were analyzed descriptively to foster understanding of the networks’ potential impact on antibiotic prescribing. Results Social influence processes proved to be relevant regarding knowledge transfer, manifestation of best-practice care and self-reflection. Peer communication was seen as great asset, main reason for membership and affirmative for own perspectives. All interviewed physicians (n=27) considered their network to be a strong support factor for daily routines, introduction of new routines, and continuity of care. They utilized network-offered training programs focusing on best practice guideline-oriented use of antibiotics and considered their networks supportive in dealing with patient expectations. A shared attitude combined with ARena intervention components facilitated reflected management of antibiotic prescribing. Non-physician health professionals (n=11) also valued network peer exchange. They assumed their employers joined networks to offer improved and continuous care. Stakeholders (n=7) expected networks and their members to be drivers for care optimization. Conclusion Primary care networks play a crucial role in providing a platform for professional peer exchange, social support and reassurance. With regards to their impact on antibiotic prescribing for acute non-complicated infections, networks seem to facilitate and amplify quality improvement programs by providing a platform for refreshing awareness, knowledge and self-reflection among care providers. They are well suited to promote a rational use of antibiotics.

Medications Used Routinely in Primary Care to be Dose-Adjusted or Avoided in People With Chronic Kidney Disease: Results of a Modified Delphi Study

2020 ◽  
Vol 54 (7) ◽  
pp. 625-632 ◽  
Author(s):  
Leena Taji ◽  
Marisa Battistella ◽  
Allan K. Grill ◽  
Jessie Cunningham ◽  
Brenda L. Hemmelgarn ◽  
...  
Keyword(s):  
Primary Care ◽  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Delphi Study ◽  
Dose Adjustment ◽  
Sglt2 Inhibitor ◽  
Primary Care Providers ◽  
Delphi Panel ◽  
Care Providers ◽  
Modified Delphi

Background: Chronic kidney disease (CKD) affects up to 18% of those over the age of 65 years. Potentially inappropriate medication prescribing in people with CKD is common. Objectives: Develop a pragmatic list of medications used in primary care that required dose adjustment or avoidance in people with CKD, using a modified Delphi panel approach, followed by a consensus workshop. Methods: We conducted a comprehensive literature search to identify potential medications. A group of 17 experts participated in a 3-round modified Delphi panel to identify medications for inclusion. A subsequent consensus workshop of 8 experts reviewed this list to prioritize medications for the development of point-of-care knowledge translation materials for primary care. Results: After a comprehensive literature review, 59 medications were included for consideration by the Delphi panel, with a further 10 medications added after the initial round. On completion of the 3 Delphi rounds, 66 unique medications remained, 63 requiring dose adjustment and 16 medications requiring avoidance in one or more estimated glomerular filtration rate categories. The consensus workshop prioritized this list further to 24 medications that must be dose-adjusted or avoided, including baclofen, metformin, and digoxin, as well as the newer SGLT2 inhibitor agents. Conclusion and Relevance: We have developed a concise list of 24 medications commonly used in primary care that should be dose-adjusted or avoided in people with CKD to reduce harm. This list incorporates new and frequently prescribed medications and will inform an updated, easy to access source for primary care providers.

First Link: Strengthening Primary Care Partnerships for Dementia Support

2008 ◽  
Vol 27 (2) ◽  
pp. 117-127 ◽  
Author(s):  
Carrie A. Mcainey ◽  
David Harvey ◽  
Mary E. Schulz
Keyword(s):  
Primary Care ◽  
Health Professionals ◽  
Support Services ◽  
Primary Care Providers ◽  
Disease Course ◽  
Collaborative Partnerships ◽  
Older Individuals ◽  
Care Providers ◽  
Innovative Program ◽  
Potential Benefits

While primary care faces many challenges, including an increasing prevalence of older individuals, emerging knowledge about the potential benefits of collaborative partnerships has encouraged the development of new means of providing and supporting primary care. First Link™ is an innovative program involving collaborations among primary care providers, Alzheimer Societies, and other health professionals. The program aims to support persons with Alzheimer's and related diseases after the diagnosis is made and to link them with support services earlier in the disease course. This paper describes the First Link program, provides an overview of a study currently underway to evaluate it, and identifies some of the benefits and challenges associated with this partnership.

Evaluation of an Inter-Professional Educational Intervention to Improve the Use of Arthritis Best Practices in Primary Care

2011 ◽  
Vol 38 (5) ◽  
pp. 931-937 ◽  
Author(s):  
SYDNEY C. LINEKER ◽  
MARY J. BELL ◽  
ELIZABETH M. BADLEY
Keyword(s):  
Primary Care ◽  
Best Practices ◽  
Nurse Practitioners ◽  
Professional Education ◽  
Best Practice ◽  
Healthcare Providers ◽  
Primary Care Providers ◽  
Care Providers ◽  
Rehabilitation Professionals ◽  
Knee Oa

Objective.To describe the evaluation of a community-based continuing health education program designed to improve the management of rheumatoid arthritis (RA) and osteoarthritis (OA), and to examine the results by discipline.Methods.The Getting a Grip on Arthritis©program was based on clinical practice guidelines adapted for the primary care environment (best practices). The program consisted of an accredited inter-professional workshop and 6 months of activities to reinforce the learning. Analyses compared best practice scores derived from responses to 3 standardized case scenarios (early and late RA; moderate knee OA) at baseline and 6 months post-workshop using the ACREU Primary Care Survey.Results.In total, 553 primary care providers (nurses/licensed practical nurses 30.9%, rehabilitation professionals 22.5%, physicians 22.5%, nurse practitioners 10.9%, other healthcare providers/non-clinical staff/students 13.1%) attended one of 27 workshops across Canada; 275 (49.7%) completed followup surveys. Best practice scores varied by discipline at baseline (p < 0.05) and improved for all 3 case scenarios, with nurse practitioners and rehabilitation therapists improving the most (p ≤ 0.05).Conclusion.Results suggest that inter-professional education may be an effective method for dissemination of guidelines and has potential to improve the delivery of arthritis care, particularly when nurse practitioners and rehabilitation therapists are involved in the care of patients.

scholarly journals Promoting rational antibiotic prescribing for non-complicated infections: Understanding social influence in primary care networks in Germany

2020 ◽  
Author(s):  
Regina Poss-Doering ◽  
Martina Kamradt ◽  
Katharina Glassen ◽  
Edith Andres ◽  
Petra Kaufmann-Kolle ◽  
...  
Keyword(s):  
Social Support ◽  
Primary Care ◽  
Social Influence ◽  
Health Professionals ◽  
Best Practice ◽  
Antibiotic Prescribing ◽  
Care Providers ◽  
Self Reflection ◽  
Physician Health ◽  
Improvement Programs

Abstract Background Primary care networks in Germany are formalized regional collaborations of physicians and other healthcare providers. Common goals are optimized healthcare processes and services for patients, enhanced communication, agency for professional concerns and strengthened economic power. In the ARena study (Sustainable reduction of antibiotic-induced antimicrobial resistance), 14 primary care networks in two federal German states aimed to promote appropriate antibiotics use for acute non-complicated infections by fostering awareness and understanding. Factors related to the role of primary care networks were to be identified. Methods For this study, audio-recorded telephone interviews were conducted with physicians, non-physician health professionals and stakeholder representatives. Pseudonymized verbatim transcripts were coded using thematic analysis. In-depth analysis was based on the inductive categories ‘social support’, ‘social learning’, ‘social normative pressures’ and ‘social contagion’ to reflect social influence processes. Data generated through a survey with physicians and non-physician health professionals were analyzed descriptively to foster understanding of the networks’ potential impact on antibiotic prescribing. Results Social influence processes proved to be relevant regarding knowledge transfer, manifestation of best-practice care and self-reflection. Peer communication was seen as great asset, main reason for membership and affirmative for own perspectives. All interviewed physicians (n=27) considered their network to be a strong support factor for daily routines, introduction of new routines, and continuity of care. They utilized network-offered training programs focusing on best practice guideline-oriented use of antibiotics and considered their networks supportive in dealing with patient expectations. A shared attitude combined with ARena intervention components facilitated reflected management of antibiotic prescribing. Non-physician health professionals (n=11) also valued network peer exchange. They assumed their employers joined networks to offer improved and continuous care. Stakeholders (n=7) expected networks and their members to be drivers for care optimization. Conclusion Primary care networks play a crucial role in providing a platform for professional peer exchange, social support and reassurance. With regards to their impact on antibiotic prescribing for acute non-complicated infections, networks seem to facilitate and amplify quality improvement programs by providing a platform for refreshing awareness, knowledge and self-reflection among care providers. They are well suited to promote a rational use of antibiotics.

Identifying critical data elements for a provincial transition plan from a primary care perspective.

2017 ◽  
Vol 35 (5_suppl) ◽  
pp. 54-54
Author(s):  
Stacey Hunter ◽  
Stefanie De Rossi ◽  
Angelika Gollnow ◽  
Grace Kim ◽  
Ed Kucharski ◽  
...  
Keyword(s):  
Primary Care ◽  
Cancer Care ◽  
Primary Care Providers ◽  
The United States ◽  
Provincial Government ◽  
Care Providers ◽  
Care Plans ◽  
Delphi Approach ◽  
Transition Plan ◽  
Data Elements

54 Background: Cancer Care Ontario is the provincial government advisor on the cancer and renal systems, as well as access to care for key health services. Enhancing flow of patient information and care plans are priorities to improve continuity and quality of survivorship care. Cancer Care Ontario’s Primary and Community Care and Survivorship Programs have initiated work to identify required information that primary care providers (PCPs) should receive about a patient’s cancer care at the point of transition back to primary care. Methods: Fifteen focus groups were conducted with PCPs in Ontario using a guide to facilitate group discussions on the utility and content of transition plans. Based on the collective feedback, thematic analysis was conducted on data elements that were expressed as critical with 12 common themes identified. Transition plan materials across Ontario’s Local Health Integration Networks and relevant jurisdictions in Canada and the United States were also reviewed to abstract a list of all documented data elements. A comprehensive matrix of data elements was then created by incorporating the list of all documented data elements with the 12 common themes. Using this matrix, prevalence of data elements amongst reviewed materials was ranked by frequency. A Modified-Delphi approach was used to validate and prioritize data elements with Cancer Care Ontario provincial and regional primary care clinical leadership. Results: In total, 21 documents were reviewed and 30 standard data elements were identified and ranked by frequency. The 10 most frequent data elements were classified as required for a standard transition plan. The remaining data elements were presented to 29 Cancer Care Ontario Cancer Leads to reach consensus on a core set of data elements to be required for inclusion in a transition plan. Conclusions: Essential data elements for inclusion in a transition plan have been identified from the perspective of PCPs. Next steps include engaging patient and family advisors, oncologists, and health system administrators through a phased regional consultation process. The role of synoptic reporting for a future standard survivorship transition plan will also be explored.

scholarly journals Promoting rational antibiotic prescribing for non-complicated infections: Understanding social influence in primary care networks in Germany

2020 ◽  
Author(s):  
Regina Poss-Doering ◽  
Martina Kamradt ◽  
Katharina Glassen ◽  
Edith Andres ◽  
Petra Kaufmann-Kolle ◽  
...  
Keyword(s):  
Social Support ◽  
Primary Care ◽  
Social Influence ◽  
Health Professionals ◽  
Best Practice ◽  
Antibiotic Prescribing ◽  
Care Providers ◽  
Self Reflection ◽  
Physician Health ◽  
Improvement Programs

Abstract Background Primary care networks in Germany are formalized regional collaborations of physicians and other healthcare providers. Common goals are optimized healthcare processes and services for patients, enhanced communication, agency for professional concerns and strengthened economic power. In the ARena study (Sustainable reduction of antibiotic-induced antimicrobial resistance), 14 primary care networks in two federal German states aimed to promote appropriate antibiotics use for acute non-complicated infections by fostering awareness and understanding. Factors related to the role of primary care networks were to be identified. Methods For this study, audio-recorded telephone interviews were conducted with physicians, non-physician health professionals and stakeholder representatives. Pseudonymized verbatim transcripts were coded using thematic analysis. In-depth analysis was based on the inductive categories ‘social support’, ‘social learning’, ‘social normative pressures’ and ‘social contagion’ to reflect social influence processes. Data generated through a survey with physicians and non-physician health professionals were analyzed descriptively to foster understanding of the networks’ potential impact on antibiotic prescribing. Results Social influence processes proved to be relevant regarding knowledge transfer, manifestation of best-practice care and self-reflection. Peer communication was seen as great asset, main reason for membership and affirmative for own perspectives. All interviewed physicians (n=27) considered their network to be a strong support factor for daily routines, introduction of new routines, and continuity of care. They utilized network-offered training programs focusing on best practice guideline-oriented use of antibiotics and considered their networks supportive in dealing with patient expectations. A shared attitude combined with ARena intervention components facilitated reflected management of antibiotic prescribing. Non-physician health professionals (n=11) also valued network peer exchange. They assumed their employers joined networks to offer improved and continuous care. Stakeholders (n=7) expected networks and their members to be drivers for care optimization. Conclusion Primary care networks play a crucial role in providing a platform for professional peer exchange, social support and reassurance. With regards to their impact on antibiotic prescribing for acute non-complicated infections, networks seem to facilitate and amplify quality improvement programs by providing a platform for refreshing awareness, knowledge and self-reflection among care providers. They are well suited to promote a rational use of antibiotics.

Sign in / Sign up

Export Citation Format

Share Document