scholarly journals The Recognition, Assessment and Management of Dementing Disorders: Conclusions from the Canadian Consensus Conference on Dementia

Author(s):  
C. Patterson ◽  
A. Grek ◽  
S. Gauthier ◽  
H. Bergman ◽  
C. Cohen ◽  
...  

Objective:i) To develop evidence based consensus statements on which to build clinical practice guidelines for primary care physicians towards the recognition, assessment and management of dementing disorders; ii) to disseminate and evaluate the impact of these statements and guidelines built on these statements.Options:Structured approach to assessment, including recommended laboratory tests, choices for neuroimaging and referral; management of complications (especially behaviour problems and depression) and use of cognitive enhancing agents.Potential outcomes:Consistent and improved clinical care of persons with dementia; cost containment by more selective use of laboratory investigations, neuroimaging and referrals; appropriate use of cognitive enhancing agents.Evidence:Authors of each background paper were entrusted to: perform a literature search, discover additional relevant material including references cited in retrieved articles; consult with other experts in the field and then synthesize information. Standard rules of evidence were applied. Based upon this evidence, consensus statements were developed by a group of experts, guided by a steering committee of eight individuals from the areas of Neurology, Geriatric Medicine, Psychiatry, Family Medicine, Preventive Health Care and Health Care Systems.Values:Recommendations have been developed with particular attention to the context of primary care and are intended to support family physicians in their ongoing assessment and care of patients with dementia.Benefits, harms and costs:Potential for improved clinical care of individuals with dementia. A dissemination and evaluation strategy will attempt to measure the impact of the recommendations.Recommendations:See text.Validation:Four other sets of consensus statements and/or guidelines have been published recently. These recommendations are generally congruent with our own consensus statements. The consensus statements have been endorsed by relevant bodies in Canada.Sponsors:Funding was provided by equal contributions from seven pharmaceutical companies and by a grant from the Consortium of Canadian Centres for Clinical Cognitive Research (C5R). Contributions were received from two Canadian universities (McGill, McMaster). Several societies supported delegates to the conference.

2019 ◽  
Author(s):  
Patrick Saudan ◽  
Belen Ponte ◽  
Nicola Marangon ◽  
Chantal Martinez ◽  
Lena Berchtold ◽  
...  

Abstract Background: Optimal clinical care of patients with chronic kidney disease (CKD) requires collaboration between primary care physicians (PCP) and nephrologists. We undertook a randomised trial to determine the impact of superimposed nephrologist care compared to guidelines-directed management by PCPs in CKD patients after hospital discharge. Methods: Stage 3b-4 CKD patients were enrolled during a hospitalization and randomised in two arms: Co-management by PCPs and nephrologists (interventional arm) versus management by PCPs with written instructions and consultations by nephrologists on demand (standard care). Our primary outcome was death or rehospitalisation within the 2 years post-randomisation. Secondary outcomes were: urgent renal replacement therapy (RRT), decline of renal function and decrease of quality of life at 2 years. Results: From November 2009 to the end of June 2013, we randomised 242 patients. Mean follow-up was 51 + 20 months. Survival without rehospitalisation, GFR decline and elective dialysis initiation did not differ between the two arms. Quality of life was also similar in both groups . Compared to randomised patients, those who either declined to participate in the study or were previously known by nephrologists had a worse survival. Conclusion: These results do not demonstrate a benefit of a regular renal care compared to guided PCPs care in terms of survival or dialysis initiation in CKD patients. Increased awareness of renal disease management among PCPs may be as effective as a co-management by PCPs and nephrologists in order to improve the prognosis of moderate-to-severe CKD.


2019 ◽  
Author(s):  
Patrick Saudan ◽  
Belen Ponte ◽  
Nicola Marangon ◽  
Chantal Martinez ◽  
Lena Berchtold ◽  
...  

Abstract Background: Optimal clinical care of patients with chronic kidney disease (CKD) requires collaboration between primary care physicians (PCP) and nephrologists. We undertook a randomised trial to determine the impact of superimposed nephrologist care compared to guidelines-directed management by PCPs in CKD patients after hospital discharge. Methods: Stage 3b-4 CKD patients were enrolled during a hospitalization and randomised in two arms: Co-management by PCPs and nephrologists (interventional arm) versus management by PCPs with written instructions and consultations by nephrologists on demand (standard care). Our primary outcome was death or rehospitalisation within the 2 years post-randomisation. Secondary outcomes were: urgent renal replacement therapy (RRT), decline of renal function and decrease of quality of life at 2 years. Results: From November 2009 to the end of June 2013, we randomised 242 patients. Mean follow-up was 51 + 20 months. Survival without rehospitalisation, GFR decline and elective dialysis initiation did not differ between the two arms. Quality of life was also similar in both groups . Compared to randomised patients, those who either declined to participate in the study or were previously known by nephrologists had a worse survival. Conclusion: These results do not demonstrate a benefit of a regular renal care compared to guided PCPs care in terms of survival or dialysis initiation in CKD patients. Increased awareness of renal disease management among PCPs may be as effective as a co-management by PCPs and nephrologists in order to improve the prognosis of moderate-to-severe CKD.


PLoS ONE ◽  
2021 ◽  
Vol 16 (7) ◽  
pp. e0254157
Author(s):  
Catherine H. Yu ◽  
Maggie McCann ◽  
Joanna Sale

Background Shared decision-making is a central component of person-centred care and can be facilitated with the use of patient decision aids (PtDA). Barriers and facilitators to shared decision-making and PtDA use have been identified, yet integration of PtDAs into clinical care is limited. We sought to understand why, using the concepts of complexity science. Methods We conducted 60-minute in-depth interviews with patients with diabetes, primary care physicians, nurses and dietitians who had participated in a randomized controlled trial examining the impact of MyDiabetesPlan (an online goal-setting PtDA). Relying on a qualitative description approach, we used a semi-structured interview guide to explore participants’ experiences with using MyDiabetesPlan and how it was integrated into the clinical encounter and clinical care. Audiotapes were transcribed verbatim, then coded independently by two analysts. Findings 17 interviews were conducted (5 physicians, 3 nurses, 2 dietitians, 7 patients). Two themes were developed: (1) MyDiabetesPlan appeared to empower patients by providing tailored patient-important information which engaged them in decision-making and self-care. Patients’ use of MyDiabetesPlan was however impacted by their competing medical conditions, other life priorities and socioeconomic context. (2) MyDiabetesPlan emphasized to clinicians a patient-centred approach that helped patients assume greater ownership for their care. Clinicians’ use of MyDiabetesPlan was impacted by pre-existing clinical tools/workplans, workflow, technical issues, clinic administrative logistics and support, and time. How clinicians adapted to these barriers influenced the degree to which MyDiabetesPlan was integrated into care. Conclusions A complexity lens (that considers relationships between multiple components of a complex system) may yield additional insights to optimize integration of PtDA into clinical care. A complexity lens recognizes that shared decision-making does not occur in the vacuum of a clinical dyad (patient and clinician), and will enable us to develop a family of interventions that address the whole process, rather than individual components. Trial registration ClinicalTrials.gov NCT02379078.


2020 ◽  
Author(s):  
Patrick Saudan ◽  
Belen Ponte ◽  
Nicola Marangon ◽  
Chantal Martinez ◽  
Lena Berchtold ◽  
...  

Abstract Background: Optimal clinical care of patients with chronic kidney disease (CKD) requires collaboration between primary care physicians (PCP) and nephrologists. We undertook a randomised trial to determine the impact of superimposed nephrologist care compared to guidelines-directed management by PCPs in CKD patients after hospital discharge. Methods: Stage 3b-4 CKD patients were enrolled during a hospitalization and randomised in two arms: Co-management by PCPs and nephrologists (interventional arm) versus management by PCPs with written instructions and consultations by nephrologists on demand (standard care). Our primary outcome was death or rehospitalisation within the 2 years post-randomisation. Secondary outcomes were: urgent renal replacement therapy (RRT), decline of renal function and decrease of quality of life at 2 years. Results: From November 2009 to the end of June 2013, we randomised 242 patients. Mean follow-up was 51 + 20 months. Survival without rehospitalisation, GFR decline and elective dialysis initiation did not differ between the two arms. Quality of life was also similar in both groups . Compared to randomised patients, those who either declined to participate in the study or were previously known by nephrologists had a worse survival. Conclusion: These results do not demonstrate a benefit of a regular renal care compared to guided PCPs care in terms of survival or dialysis initiation in CKD patients. Increased awareness of renal disease management among PCPs may be as effective as a co-management by PCPs and nephrologists in order to improve the prognosis of moderate-to-severe CKD.


2020 ◽  
Author(s):  
Patrick Saudan ◽  
Belen Ponte ◽  
Nicola Marangon ◽  
Chantal Martinez ◽  
Lena Berchtold ◽  
...  

Abstract Background: Optimal clinical care of patients with chronic kidney disease (CKD) requires collaboration between primary care physicians (PCP) and nephrologists. We undertook a randomised trial to determine the impact of superimposed nephrologist care compared to guidelines-directed management by PCPs in CKD patients after hospital discharge. Methods: Stage 3b-4 CKD patients were enrolled during a hospitalization and randomised in two arms: Co-management by PCPs and nephrologists (interventional arm) versus management by PCPs with written instructions and consultations by nephrologists on demand (standard care). Our primary outcome was death or rehospitalisation within the 2 years post-randomisation. Secondary outcomes were: urgent renal replacement therapy (RRT), decline of renal function and decrease of quality of life at 2 years. Results: From November 2009 to the end of June 2013, we randomised 242 patients. Mean follow-up was 51 + 20 months. Survival without rehospitalisation, GFR decline and elective dialysis initiation did not differ between the two arms. Quality of life was also similar in both groups . Compared to randomised patients, those who either declined to participate in the study or were previously known by nephrologists had a worse survival. Conclusion: These results do not demonstrate a benefit of a regular renal care compared to guided PCPs care in terms of survival or dialysis initiation in CKD patients. Increased awareness of renal disease management among PCPs may be as effective as a co-management by PCPs and nephrologists in order to improve the prognosis of moderate-to-severe CKD.


2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 168.2-168
Author(s):  
L. Wagner ◽  
S. Sestini ◽  
C. Brown ◽  
A. Finglas ◽  
R. Francisco ◽  
...  

Background:Inborn metabolic disorders (IMDs) currently encompass more than 1,500 diseases with new ones still to be identified1. Each of them is characterised by a genetic defect affecting a metabolic pathway. Only few of them have curative treatments, that target the respective metabolic pathway. Commonly, treatment examples include diet, substrate reduction therapies, enzyme replacement therapies, gene therapy and biologicals, enabling IMD-patient now to survive to adulthood. About 30 % of all IMDs involve the musculoskeletal system and are here referred to as rare metabolic RMDs. Generally, IMDs are very heterogenous with respect to symptoms and severity, often being systemic and affecting more children than adults. Thus, challenges include certified advanced training of adult metabolic experts, standardised transition plans, social support and development of therapies for diseases that do not have any cure yet.Objectives:Introduction of MetabERN, its structure and objectives, highlighting on the unique features and challenges of metabolic RMDs and describing the involvement of patient representation in MetabERN.Methods:MetabERN is stratified in 7 subnetworks (SNW) according to the respective metabolic pathways and 9 work packages (WP), including administration, dissemination, guidelines, virtual counselling framework, research/clinical trials, continuity of care, education and patient involvement. The patient board involves a steering committee and single point of contacts for each subnetwork and work package, respectively2. Projects include identifying the need of implementing social science to assess the psycho-socio-economic burden of IMDs, webinars on IMDs and their transition as well as surveys on the impact of COVID-193 on IMD-patients and health care providers (HCPs), social assistance for IMD-patients and analysing the transition landscape within Europe.Results:The MetabERN structure enables bundling of expertise, capacity building and knowledge transfer for faster diagnosis and better health care. Rare metabolic RMDs are present in all SNWs that require unique treatments according to their metabolic pathways. Implementation of social science to assess the psycho-socio-economic burden of IMDs is still underused. Involvement of patient representatives is essential for a holistic healthcare not only focusing on clinical care, but also on the quality of life for IMD-patients. Surveys identified unmet needs of patient care, patients having little information on national support systems and structural deficits of healthcare systems to ensure HCP can provide adequate clinical care during transition phases. These results are collected by MetabERN and forwarded to the Directorate-General for Health and Food Safety (DG SANTE) of the European Commission (EC) to be addressed further.Conclusion:MetabERN offers an infrastructure of virtual healthcare for patients with IMDs. Thus, in collaboration with ERN ReCONNET, MetabERN can assist in identifying rare metabolic disorders of RMDs to shorten the odyssey of diagnosis and advise on their respective therapies. On the other hand, MetabERN can benefit from EULAR’s longstanding experience regarding issues affecting the quality of life, all RMD patients are facing, such as pain, stiffness, fatigue, rehabilitation, maintaining work and disability claims.References:[1]IEMbase - Inborn Errors of Metabolism Knowledgebase http://www.iembase.org/ (accessed Jan 29, 2021).[2]MetabERN: European Refence Network for Hereditary Metabolic Disorders https://metab.ern-net.eu/ (accessed Jan 29, 2021).[3]Lampe, C.; Dionisi-Vici, C.; Bellettato, C. M.; Paneghetti, L.; van Lingen, C.; Bond, S.; Brown, C.; Finglas, A.; Francisco, R.; Sestini, S.; Heard, J. M.; Scarpa, M.; MetabERN collaboration group. The Impact of COVID-19 on Rare Metabolic Patients and Healthcare Providers: Results from Two MetabERN Surveys. Orphanet J. Rare Dis.2020, 15 (1), 341. https://doi.org/10.1186/s13023-020-01619-x.Acknowledgements:The authors thank the MetabERN collaboration group, the single point of contacts (SPOC) of the MetabERN patient board and the Transition Project Working Group (TPWG)Disclosure of Interests:None declared


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Kristie C. Waterfield ◽  
Gulzar H. Shah ◽  
Gina D. Etheredge ◽  
Osaremhen Ikhile

Abstract Background With the indiscriminate spread of COVID-19 globally, many populations are experiencing negative consequences such as job loss, food insecurity, and inability to manage existing medical conditions and maintain preventive measures such as social distancing and personal preventative equipment. Some of the most disadvantaged in the COVID-19 era are people living with HIV/AIDS and other autoimmune diseases. Discussion As the number of new HIV infections decrease globally, many subpopulations remain at high risk of infection due to lack of or limited access to prevention services, as well as clinical care and treatment. For persons living with HIV or at higher risk of contracting HIV, including persons who inject drugs or men that have sex with men, the risk of COVID-19 infection increases if they have certain comorbidities, are older than 60 years of age, and are homeless, orphaned, or vulnerable children. The risk of COVID-19 is also more significant for those that live in Low- and Middle-Income Countries, rural, and/or poverty-stricken areas. An additional concern for those living the HIV is the double stigma that may arise if they also test positive for COVID-19. As public health and health care workers try to tackle the needs of the populations that they serve, they are beginning to realize the need for a change in the infrastructure that will include more efficient partnerships between public health, health care, and HIV programs. Conclusion Persons living with HIV that also have other underlying comorbidities are a great disadvantage from the negative consequences of COVID-19. For those that may test positive for both HIV and COVID-19, the increased psychosocial burdens stemming from stress and isolation, as well as, experiencing additional barriers that inhibit access to care, may cause them to become more disenfranchised. Thus, it becomes very important during the current pandemic for these challenges and barriers to be addressed so that these persons living with HIV can maintain continuity of care, as well as, their social and mental support systems.


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