Hereditary haemorrhagic telangiectasia: development of a regional life-course collaborative clinical care pathway

2021 ◽  
pp. 1-9
Author(s):  
Emily Anderson ◽  
Richard Green ◽  
Andrew Swift ◽  
Malcolm G Semple
Keyword(s):  
Best Practice ◽  
Care Pathway ◽  
Genetic Disorder ◽  
Clinical Care ◽  
Quality Care ◽  
Reference Network ◽  
Hereditary Haemorrhagic Telangiectasia ◽  
Coordinated Care ◽  
Multiple Organs ◽  
European Reference Network

Hereditary haemorrhagic telangiectasia is a rare, genetic disorder that can present at any age. It is characterised by epistaxis, mucocutaneous telangiectasia and visceral arteriovenous malformations, which can affect multiple organs. Early diagnosis and management reduces the morbidity and mortality associated with the disease. There is a well-established hereditary haemorrhagic telangiectasia clinic in London, and excellent links across Europe via the European Reference Network. However, local coordinated care for patients with hereditary haemorrhagic telangiectasia across the UK can be variable and often absent for children and young people. Some patients travel long distances to receive care in London, while others are referred to local clinicians or lost to follow up entirely. This article presents the experience to date from two regional UK centres (Liverpool and Dundee) where care for patients with hereditary haemorrhagic telangiectasia is being coordinated and streamlined. While there is still a lot to learn, this article highlights some of the successes and challenges identified so far, with suggestions for how these could be addressed. Collaborative regional networks such as these can facilitate the sharing of best practice and ensure that all patients with hereditary haemorrhagic telangiectasia are able to access safe, high-quality care.

A clinical care pathway to improve the acute care of patients with glioma.

2014 ◽  
Vol 32 (30_suppl) ◽  
pp. 217-217
Author(s):  
Natalie Riblet ◽  
Jennifer Snide ◽  
Evelyn Schlosser ◽  
David Nalepinski ◽  
Lanelle Jalowiec ◽  
...  
Keyword(s):  
Urinary Tract ◽  
Acute Care ◽  
Urinary Tract Infections ◽  
Best Practice ◽  
Care Pathway ◽  
Clinical Care ◽  
Performance Outcomes ◽  
Care Pathways ◽  
Improvement Interventions ◽  
Tract Infections

217 Background: Gliomas account for nearly 80% of primary malignant brain tumors and are associated with poor survival. Developing clinical care pathways to ensure that patients receive coordinated, comprehensive and timely care may result in improved outcomes and patient satisfaction. Methods: A quality improvement (QI) project was chartered to improve the care provided to patients with glioma. A multidisciplinary team was convened and met weekly and then monthly from Feb 2013 – April 2014. Twenty best practice measures were identified from the literature. Using a Plan-Do-Study-Act framework, the team brainstormed and implemented various improvement interventions between Oct 2013 and Feb 2014. Statistical process control charts were used to evaluate progress. A dashboard of quality measures was generated to allow for ongoing reporting. Results: Retrospective data was available for 12 best practice measures; 6 of which could be abstracted from electronic medical records. Eight measures were not part of the current system of care. The baseline population consisted of 98 patients with gliomas. Review of their records suggested wide variation in performance, with compliance ranging from 30% to 100%. Unanticipated opportunities for improvement included a high proportion of outpatient falls (7%) and urinary tract infections (10%). The team hypothesized that lack of standardization in the current process may contribute to less-than-ideal performance. After implementing improvement interventions, the records of 19 consecutive patients with glioma were reviewed. The proportion of patients meeting criteria for 12 practice measures modestly improved (65% pre QI-work; 78% post-QI work). There were no additional cases of urinary tract infections. Barriers to pathway development included difficulties with transforming manual measures into electronic data sets and accounting for portions of care that occurred at outside facilities. Updated outcomes will be presented. Conclusions: Creating evidence based clinical care pathways for addressing the acute care needs of patients with glioma is important. There are many challenges, however, to developing sustainable systems for measuring and reporting performance outcomes overtime.

scholarly journals A retrospective cohort study on European Reference Network for Rare Vascular Diseases 5 outcome measures for Hereditary Haemorrhagic Telangiectasia in Denmark

2021 ◽  
Author(s):  
Troels Hvelplund ◽  
Bibi Lange ◽  
Susanne Djernes Bird ◽  
Malene Korsholm ◽  
Anette Kjeldsen
Keyword(s):  
Iron Deficiency ◽  
Outcome Measures ◽  
Health Care Providers ◽  
Clinical Symptoms ◽  
Vascular Diseases ◽  
Reference Network ◽  
Hereditary Haemorrhagic Telangiectasia ◽  
Care Providers ◽  
Autosomal Dominant Disorder ◽  
European Reference Network

Abstract Background Hereditary Haemorrhagic Telangiectasia (HHT) is an autosomal dominant disorder characterized by several clinical symptoms including epistaxis, arteriovenous malformations (AVM), and telangiectasia. In 2018, European Reference Network for Rare Vascular Diseases (VASCERN) recommended five outcome measures for HHT-patients to guide health care providers, some with limited experience in treating HHT, and thereby maximizing the number of HHT-patients receiving good care. The outcome measures cover the following aspects: 1) 90% of the patients should receive a pulmonary AVM (PAVM) screening; 2) 90% of the patients should receive written advice on nosebleed; 3) 70% should be assessed for iron deficiency; 4) 100% of the patients should receive written advice on antibiotic (AB) prophylaxis prior to dental and surgical procedures, and; 5) 100% of relevant patients should receive written advice on pregnancy. We have introduced the outcome measures as Benchmarks in our HHT-centre and wanted to evaluate the extend of implementation we have achieved. We constantly struggle to secure the best possible treatment of our HHT-patients.Methods The study was a non-interventional retrospective study. All data was collected from medical journals and from the Danish HHT-database. Results A total of 180 HHT-patients were included, all diagnosed in the period from January 1st 2016 to December 31st 2020. All patients were screened for PAVM. We could confirm that 66% of patients who had epistaxis received thoroughly advice. Assessment for iron deficiency was performed in 80 % of the adult patients. Thoroughly advice on antibiotic prophylaxis was documented in 75%. Thoroughly advice on pregnancy was documented in 80% of female patients 15-45 years of age. There were no significant differences over time for any of the outcome measures. Conclusions The Danish HHT-centre reached the target threshold for outcome measures 1 and 3. We could not document reaching the target thresholds for outcome measures 2, 4, and 5. As information and education is a very important part of HHT care, we will focus on and document that all patients receive the relevant advice and as part of our care, we will in the near future implement an electronic solution with advice for HHT patients.

ROLE OF ANAESTHETIST IN POST ANAESTHESIA VISIT - QUESTIONNAIRE STUDY AMONG ANAESTHESIOLOGISTS

2021 ◽  
pp. 26-28
Author(s):  
Manjula Devi S ◽  
Ravi Madhusudhana
Keyword(s):  
Online Survey ◽  
Care Pathway ◽  
Clinical Care ◽  
Quality Care ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
Operative Care ◽  
Anaesthesia Service ◽  
Clinical Care Pathway

Background The role of anaesthetist has increased tremendously from just being in the operative team to the recovery of the patient in the post-operative period. The recovery without any complication requires multidisciplinary team which should be embedded in a clinical care pathway with focus on enhancing patient recovery. Objectives: To evaluate the need for post anaesthesia visit, among Anaesthesiologists to improve the post-operative and post anaesthesia quality care. Methodology: This was a cross sectional study conducted among 275 anaesthesiologists by an online survey using a validated pretested questionnaire Results: Majority of the study participants were males. 92.4 % had regular post-anaesthesia service available in their hospitals. More than 70% of the patients had post-operative visits. Majority of the post-operative visit was on the day of surgery and on the rst post-operative day. Conclusion: It is the responsibility of the anaesthesiologist to guarantee that patients have completely recovered from the given anaesthesia and to detect and treat any probable anaesthetic-related complications. Hence, a post-operative care team involving the surgeons and anaesthetist can alleviate the complications, shorten the duration of hospital stay and improved recovery.

Good practices in Italian therapeutic communities. Outcomes 2020 of quality accreditation program “Visiting DTC Project”

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Simone Bruschetta
Keyword(s):  
Best Practice ◽  
Care Pathway ◽  
Clinical Care ◽  
Good Practice ◽  
Therapeutic Communities ◽  
Content Type ◽  
Good Practices ◽  
Therapeutic Environment ◽  
Clinical Care Pathway ◽  
Five Phases

Purpose This paper aims to present results achieved by the first, and to date only, Democratic Therapeutic Communities (DTC) quality improvement program developed in Italy, in the past 10 years, named “Visiting DTC Project.” Process of bottom-up identification, definition and evaluation of good practices of TCs for adult users with long term severe mental disorders will be described. In addition, a five-phase clinical care pathway will be presented for the same user category, developed by the “Visiting DTC Project” to comply with Italian National Health Service accreditation standards for TCs. Design/methodology/approach “Visiting DTC Project” involved 40 Italian TCs, since 2012 until 2020, in an action research on good practices developed throw a democratic and bottom-up methodology. Project’s methodology is the “Democratic Peer-to-peer Accreditation,” a kind of professional scientific quality accreditation and continuous improvement process for community mental health services. Scientific model for the definition of service standards and principles of treatment is the British “Democratic Therapeutic Community,” which the “Visiting DTC Project” is organizationally inspired by. Findings In the eighth annual cycle of the program for TC with adult users of mental health services a significantly effective good practice procedure (GPP), with good practical efficacy, was finally identified (for the first time after eight years), but still no best practice. GPP with the title “Multi-family Community Meeting” is the Good Practice of the year 2020. No Best Practice has yet been identified. An integrated clinical care pathway for Adult DTCs Users in five phases is also presented. This care pathway organizes advanced standards of Community Group Quality in a map, to support the description and planning of the five phases of the user’s clinical work in DTC treatment. Originality/value Cooperation with local community services, organizations and networks, as well as a therapeutic environment based on informal coexistence and cooperation between TC members, are thus, together with care of family relationships, the main characteristics of the Italian experience of implementing and developing the Italian DTC treatment model. These characteristics make it clear how fragile Italian DTCs are at this moment. They are still in an early stage of development. All the most applied and effective best practice procedures are dependent on a wide and dense network of relationships, formal and informal, which cross the therapeutic environment and interconnect TC members with all other stakeholders.

scholarly journals A clinical care pathway to improve the acute care of patients with glioma

2015 ◽  
Vol 3 (3) ◽  
pp. 145-153 ◽  
Author(s):  
Natalie B.V. Riblet ◽  
Evelyn M. Schlosser ◽  
Jennifer A. Snide ◽  
Lara Ronan ◽  
Katherine Thorley ◽  
...  
Keyword(s):  
Acute Care ◽  
Best Practice ◽  
Care Pathway ◽  
Clinical Care ◽  
Performance Outcomes ◽  
Care Needs ◽  
Statistical Process ◽  
Increased Risk ◽  
Improvement Strategies ◽  
Clinical Care Pathway

AbstractBackgroundPatients with glioma are at increased risk for tumor-related and treatment-related complications. Few guidelines exist to manage complications through supportive care. Our prior work suggests that a clinical care pathway can improve the care of patients with glioma.MethodsWe designed a quality improvement (QI) project to address the acute care needs of patients with gliomas. We formed a multidisciplinary team and selected 20 best-practice measures from the literature. Using a plan-do-study-act framework, we brainstormed and implemented various improvement strategies starting in October 2013. Statistical process control charts were used to assess progress.ResultsRetrospective data were available for 12 best practice measures. The baseline population consisted of 98 patients with glioma. Record review suggested wide variation in performance, with compliance ranging from 30% to 100%. The team hypothesized that lack of process standardization may contribute to less-than-ideal performance. After implementing improvement strategies, we reviewed the records of 63 consecutive patients with glioma. The proportion of patients meeting criteria for 12 practice measures modestly improved (65% pre-QI; 76% post-QI, P > .1). Unexpectedly, a higher proportion of patients were readmitted within 30 days of hospital discharge (pre-QI: 10%; post-QI: 17%, P > .1). Barriers to pathway development included difficulties with transforming manual measures into electronic data sets.ConclusionsCreating evidence-based clinical care pathways for addressing the acute care needs of patients with glioma is feasible and important. There are many challenges, however, to developing sustainable systems for measuring and reporting performance outcomes overtime.

scholarly journals Creation of high-performing medical department

2021 ◽  
Vol 10 (5) ◽  
pp. 18
Author(s):  
David Thomas Neilipovitz ◽  
John Kim
Keyword(s):  
Financial Stability ◽  
Best Practice ◽  
Clinical Care ◽  
Quality Care ◽  
Group Development ◽  
Relationship Building ◽  
Care Group ◽  
Medical Department ◽  
High Performing ◽  
Physician Leaders

Background: Transforming dysfunctional medical groups into high-performing departments is a process that physician leaders are not typically trained to enact. Multiple issues challenge the ability to successfully create a financially sound department that offers high-quality care along with impactful academic deliverables.Methods: We present an example of a critical care group that was highly dysfunctional that was transformed into a highperforming medical department. It underwent a change that was achieved through three stages: (1) Defining Purpose; (2) Relationship Building and Problem Solving; and (3) Group Development. The later stage is approached in a three-phase cycle.Results: Success was achieved on all deliverables including clinical care, academics and finances as validated by external measures. The department was awarded best practice for delivery of clinical care by an international accreditation group. It was twice recognized as their hospital’s highest engaged medical group. Academic deliverables increased to become a high performer all while financial stability was achieved. The importance of health and wellness is highlighted.Conclusions: The process for transforming departments is suggested in a step-wise approach for other groups to achieving similar success.

scholarly journals A retrospective cohort study on European Reference Network for Rare Vascular Diseases 5 outcome measures for Hereditary Haemorrhagic Telangiectasia in Denmark

2022 ◽  
Vol 17 (1) ◽  
Author(s):  
Troels Hvelplund ◽  
Bibi Lange ◽  
Susanne Djernes Bird ◽  
Malene Korsholm ◽  
Anette Drøhse Kjeldsen
Keyword(s):  
Iron Deficiency ◽  
Outcome Measures ◽  
Health Care Providers ◽  
Clinical Symptoms ◽  
Vascular Diseases ◽  
Reference Network ◽  
Hereditary Haemorrhagic Telangiectasia ◽  
Care Providers ◽  
Autosomal Dominant Disorder ◽  
European Reference Network

Abstract Background Hereditary Haemorrhagic Telangiectasia (HHT) is an autosomal dominant disorder characterized by several clinical symptoms including epistaxis, arteriovenous malformations (AVM), and telangiectasia. In 2018, European Reference Network for Rare Vascular Diseases (VASCERN) recommended five outcome measures for HHT-patients to guide health care providers, some with limited experience in treating HHT, and thereby maximizing the number of HHT-patients receiving good care. The outcome measures cover the following aspects: (1) 90% of the patients should receive a pulmonary AVM (PAVM) screening; (2) 90% of the patients should receive written advice on nosebleed; (3) 70% should be assessed for iron deficiency; (4) 100% of the patients should receive written advice on antibiotic (AB) prophylaxis prior to dental and surgical procedures, and (5) 100% of relevant patients should receive written advice on pregnancy. We have introduced the outcome measures as Benchmarks in our HHT-centre and wanted to evaluate the extend of implementation we have achieved. We constantly struggle to secure the best possible treatment of our HHT-patients. Methods The study was a non-interventional retrospective study. Data was collected manually from patient records and from the Danish HHT-database. Results A total of 180 HHT-patients were included, all diagnosed in the period from January 1st, 2016, to December 31st, 2020. All patients were screened for PAVM. We could confirm that 66% of patients who had epistaxis received thoroughly advice. Assessment for iron deficiency was performed in 80% of the adult patients. Thoroughly advice on AB prophylaxis was documented in 75%. Thoroughly advice on pregnancy was documented in 80% of female patients 15–45 years of age. There were no significant differences over time for any of the outcome measures. Conclusions The Danish HHT-centre reached the target threshold for outcome measures 1 and 3. It could not be documented that the target thresholds for outcome measures 2, 4, and 5 were achieved. As information and education are a very important part of HHT care, focus on and documentation that all patients receive the relevant advice must be a priority in order to ensure best care.

Gastroesophageal Reflux Disease: A Gastroenterologist's Perspective

2011 ◽  
Vol 21 (3) ◽  
pp. 89-99
Author(s):  
Michael F. Vaezi
Keyword(s):  
Gastroesophageal Reflux Disease ◽  
Gastroesophageal Reflux ◽  
Reflux Disease ◽  
Best Practice ◽  
Clinical Care ◽  
Diagnostic Testing ◽  
Diagnostic Tools ◽  
Swallowing Function ◽  
Atypical Symptoms

Gastroesophageal reflux disease (GERD) is a commonly diagnosed condition often associated with the typical symptoms of heartburn and regurgitation, although it may present with atypical symptoms such as chest pain, hoarseness, chronic cough, and asthma. In most cases, the patient's reduced quality of life drives clinical care and diagnostic testing. Because of its widespread impact on voice and swallowing function as well as its social implications, it is important that speech-language pathologists (SLPs) understand the nature of GERD and its consequences. The purpose of this article is to summarize the nature of GERD and GERD-related complications such as GERD-related peptic stricture, Barrett's esophagus and adenocarcinoma, and laryngeal manifestations of GERD from a gastroenterologist's perspective. It is critical that SLPs who work with a multidisciplinary team understand terminology, diagnostic tools, and treatment to ensure best practice.

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