Recommendations For Standards Of Care Research Articles

Evaluating postoperative outcomes in patients with hostile neck anatomy undergoing transcarotid artery revascularization versus transfemoral carotid artery stenting.

Carotid endarterectomy is relatively contraindicated in patients with a hostile neck anatomy who were historically revascularized with transfemoral carotid artery stenting (TFCAS). As transcarotid artery revascularization (TCAR) has progressively replaced TFCAS, evidence pertaining to hostile neck anatomy and TCAR is necessary to establish its safety and feasibility in this subgroup of patients. Therefore, we analyzed the impact of a hostile neck anatomy on outcomes in patients undergoing TCAR and further compared them with those undergoing TFCAS to establish recommendations for standard of care. All patients undergoing TCAR and TFCAS from November 2016 to June 2021 in the Vascular Quality Initiative database were included. Patients were characterized into two groups based on the neck anatomy. Hostile neck anatomy was defined as a history of neck radiation or prior neck surgery including prior carotid endarterectomy or radical neck dissection. Primary outcomes included technical failure, access site complications (hematoma, stenosis, infection, pseudoaneurysm and arteriovenous fistula), and stroke or death. Secondary outcomes included stroke, transient ischemic attack (TIA), myocardial infarction (MI), death, and a composite end point of stroke or TIA. Patients with nonatherosclerotic or multiple lesions were excluded from the analysis. Primary analysis was performed with all patients undergoing TCAR and outcomes between patients with hostile and nonhostile neck anatomy were compared. Further analysis included a comparison of patients with a hostile neck anatomy undergoing TCAR and TFCAS. Univariable and multivariable logistic regression was used to assess impact of hostile neck anatomy on postoperative outcomes. Results were adjusted for relevant potential confounders including age, gender, race, degree of stenosis, symptomatic status, comorbidities, preoperative medications, anesthesia type, and protamine use. Among the 19,859 patients who underwent TCAR during the study period, 3636 (18.3%) had a hostile neck anatomy. On univariate analysis, both groups had comparable outcomes except for higher rates of stroke or death in patients with hostile neck anatomy. After adjusting for potential confounders, there were no differences in technical failure (adjusted odds ratio [aOR], 1.14; 95% confidence interval [CI], 0.59-2.21; P= .699), stroke (aOR, 0.86; 95% CI, 0.58-1.28; P= .464), death (aOR, 0.82; 95% CI, 0.39-1.71; P= .598), and MI (aOR, 1.18; 95% CI, 0.71-1.97; P= .518). However, patients with hostile neck were at a 30% increased risk of access site complications (aOR, 1.30; 95% CI, 1.0-1.6; P= .023). Further adjusted analysis comparing the outcomes in TFCAS and TCAR among patients with hostile neck anatomy showed an almost four-fold increase in risk of death (aOR, 3.77; 95% CI, 1.49-9.53; P= .005) and technical failure (aOR, 3.69; 95% CI, 1.82-7.47; P< .001) among patients undergoing treatment with TFCAS. Patients with a hostile neck anatomy undergoing TCAR experienced an increased risk of access site complications; however, the risk for technical failure and postoperative stroke/death, stroke, TIA, MI, or death was similar among both groups. TFCAS was associated with significant increase in the risk of death and technical failure compared with TCAR in this group of patients. These results confirm that TCAR should be the preferred minimally invasive revascularization procedure for patients with hostile neck anatomy.

Benchmarking Paediatric Sickle Cell Care in Australia

Background: Sickle cell disease (SCD) is a severe, multisystem vasculopathy, associated with significant reduction in life expectancy, and high burden of care for patients/families and clinicians. Haematologists in Australia have observed an increase in numbers of children presenting for care with SCD in recent years that disproportionately affects migrant families with socio-economic challenge. Models of care for these patients in Australia are still evolving and there is a need for service benchmarking to define consensus best practice for service delivery. Key issues include access to affordable Hydroxyurea (HU) paediatric formulations, red cell exchange (RCE), antenatal/newborn screening policy and consideration of expanding indications for curative therapies (bone marrow transplantation). Aim: To survey aspects of health care service delivery for paediatric SCD at six specialist centres in Australia. Method: Lead clinicians at the six centres were surveyed to determine: basic demographics, availability of current treatment modalities, transfusion practices, service integration, care pathways and access to support services and transition services. Current challenges to optimal health care delivery were identified. Results: A total of 293 cases were identified. Variations in care included: inequity of funding for HU formulation, access to RCE as recommended transfusion method, screening protocols for stroke prevention, disease specific pain management pathways. Identified challenges to optimal care delivery were consistent across the centres, with common themes identified: difficulty accessing adequate support services (social work, mental health) and care co-ordinationinability to provide comprehensive care such as educational resources/neuropsychology testing (as is best practice in international centres)financial restrictions (variations in funding for paediatric formulations where HU is the only disease modifying therapy DMT available in Australia, liquid Hydroxyurea mixture is a special access product often requiring patient co-payment despite PBS coverage of capsules)limited networks of clinicians to provide multi-disciplinary care modelslack of designated transition pathways for young adults in some locations. Conclusion - This survey has identified key challenges in access to RCE, affordable HU formulations for children, as well as allied health support/care co-ordination for this disadvantaged population. We recommend the need for the development of consensus recommendations for standards of care for sickle cell services in Australia. These standards will provide a useful benchmark for advocacy and interactions with policymakers. Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal

Developing an Interactive Geographic Information System for Adult Congenital Heart Disease Service Planning in Rural New South Wales

With medical advances greatly improving life expectancy, Adult Congenital Heart Disease (ACHD) patients have become a priority population requiring lifelong, specialised care. Guidelines specific to the Australian context suggest that a state-wide ACHD program should include a comprehensive ACHD centre that is supported by smaller, regional services [ [1] Celermajer D. Nicolae M. Hornung T. O’Donnell C. Justo R. Bullock A. et al. Adult congenital heart disease (ACHD) recommendations for standards of care: The Cardiac Society of Australia and New Zealand. http://www.csanz.edu.au/wp-content/uploads/2013/11/ACHD-Guidelines.pdfDate: 2013 Google Scholar ]. It is unclear what are the best locations for these regional ACHD services in New South Wales (NSW).

Cancer in the Time of Coronavirus: A Call for Crisis Oncology Standards of Care.

Since the Coronavirus Disease 2019 (COVID-19) was identified as a global pandemic, health systems have been severely strained, particularly affecting vulnerable populations such as patients with cancer. In response to the COVID-19 pandemic, a variety of oncology specialty societies are making recommendations for standards of care. These diverse standards and gaps in standards can lead to inconsistent and heterogeneous care among governments, cancer centers, and even among oncologists within the same practice. These challenges highlight the need for a common nomenclature and crisis guidelines. For times of increased scarcity of resources, the National Academy of Medicine developed Crisis Standards of Care, defined as fairness, duty to care, duty to steward resources, transparency, consistency, proportionality, and accountability. However, we believe there is an urgent need to develop cancer-specific guidelines by convening a panel of experts from multiple specialties. These would be Crisis Oncology Standards of Care (COSCs) that are sensitive to both the individual cancer patient and to the broader health system in times of scarce resources, such as pandemic, natural disaster, or supply chain disruptions.

The ITP Natural History Study Registry: Preliminary Findings on the Immune Thrombocytopenia Patient Experience

BackgroundAlthough significant advances have been made over the past 10 years in the treatment of Immune Thrombocytopenia (ITP), challenges remain in addressing the burden of disease and unmet needs of patients. In rare diseases especially, natural history studies and patient registries are crucial in establishing baseline information and identifying patient-reported outcomes.AimsThe registry collects data on the natural progression of ITP, and characterizes the ITP population as a whole. This preliminary analysis seeks to provide an abridged overview of registry findings.MethodsThe ITP Registry enrolled 843 patients (pts), 742 completed the consent process [table 1]. Pts completed a set of surveys on demographics, medical and diagnostic data, treatments (tx), and quality of life, with 172 total questions for adults and 141 for children. Of 742 consented pts, 475 (64%) completed >1 surveys. 307 pts completed all surveys.ResultsPts were 90.3% caucasian and 76.4% female. 86.5% live in the United States. 69.3% of pts were formally diagnosed with ITP <1 yr of experiencing symptoms of petechiae, purpura, or mucosal bleeding (range 1-42 yrs). Avg. age at diagnosis was 32 yrs (0-72), although avg. current age for registry pts is 38 (0-100). Avg. duration of disease is 12 ½ yrs, (0-69). An avg. of 4 (1-10) diagnostic tests are performed to confirm diagnosis [figure 1]. Only 9 pts were diagnosed with another disorder in addition to their ITP.329 pts who completed the Treatment survey received a total of 1,008 ITP txs (avg. 3; range 1-14), almost half of pts were treated with ≥3 different txs over the course of their disease. 46/329 pts (14%) received ≥6 txs, double the avg. number of txs. Almost half (45%) currently receive tx, but this does not take into consideration whether pts are in remission.285 (86.6%) pts received steroids. 137 (41.6%) received IVIG. Almost 1/3 received rituximab (31.9%). 121 (36.8%) were treated with thrombopoietic agents; pts also received anti-d, antibiotics, decadron, rituximab, or another tx for their ITP [figure 2]. 23.7% had undergone splenectomy.Every pt visited a physician at least once in the past year. ITP pts visit their physicians on avg. 7 times/year, 42.6% of pts consult their doctor ≥10 times/year. 64% of pts were hospitalized because of their ITP. Of these pts, 39.8% had been hospitalized within the past year; this may include in-patient txs.Most of the adult pts who completed the quality of life (QoL) surveys felt their QoL is good; 1/5 said poor or fair. During the past month, 1/4 pts claimed their overall health was poor or fair, 2/3 said good or very good, 10% said excellent. 62% of pts rate their mental health as good or very good. 82% felt bothered by emotional problems such as feeling anxious, depressed, or irritable in the past week. 64% of pts felt anxious in the past week. Over half of pts report feelings of depression.A similar trend to mental health was seen in pts' physical health: 65% said their physical health was good or very good. However, 90% said pain interferes with their QoL. 88% experienced fatigue that week due to their ITP.38 parents completed the QoL survey on behalf of their child, although not all questions were answered by each respondent. 16/19 parents said their child's overall health was good or very good. 63% of children were bothered by emotional problems. 29/38 parents said their child feels nervous about their ITP. A majority of children got tired easily due to their ITP; 27/38 children were sometimes, often or always tired. Less than half (15/38) experienced pain from their ITP in the last week, with 6/15 children rating their pain as “greater than 5” on a scale of 1-10 (10= worst pain). 22/38 parents say their child has been physically able to do the activities they enjoy most with no trouble.DiscussionWe focused on general questions across surveys, especially on topics most important to ITP patients. Completion of surveys was hindered by the time and effort needed to answer survey questions. In the future, we hope that completion of the remaining surveys will continue, helping us to examine differences in disease experience across sub-populations. This overview will assist the ITP community with the development of recommendations for standards of care, assist researchers studying the pathophysiology of ITP and interventional outcomes, and support the design of clinical trials for new treatments. DisclosuresKruse:Amgen/ITP: Consultancy; Novartis/ITP: Consultancy; Rigel/ITP: Honoraria. Lambert:Educational Concepts in Medicine: Consultancy; Summus: Consultancy; Amgen: Membership on an entity's Board of Directors or advisory committees; Shionogi: Consultancy; Bayer: Membership on an entity's Board of Directors or advisory committees; Sysmex: Consultancy; Rigel: Consultancy; CSL: Consultancy; Novartis: Membership on an entity's Board of Directors or advisory committees.

Adult Congenital Heart Disease in Australia and New Zealand: A Call for Optimal Care

Adult congenital heart disease (ACHD) is a relatively new subspecialty in the cardiology field. The prevalence of ACHD is estimated at ∼ 3,000 per million adult population. The ACHD patient group is estimated to grow at ∼ 5% per year and in the next decade it is forecast that 1 in 150 young adults will carry some form of ACHD diagnosis. These estimates translate to ∼ 72,000 ACHD patients in Australia and ∼ 14,000 in New Zealand, although no current numbers are available. The Cardiac Society of Australia and New Zealand (CSANZ) has recently published Recommendations for Standards of Care for Adult Congenital Heart Disease (ACHD) in 2016. There is currently no long-term plan or proposal to address this huge health care burden within the federal government. This document details the size of the problem insofar as it is known and recommends solutions to be implemented. This document was developed by the Adult Congenital Heart Disease Working Group of the Paediatric and Congenital Council (the Congenital Heart Alliance of Australia and New Zealand) as a response to the chronic under resourcing in this area, the risk this poses to patients and clinicians, and the clear need for long-term planning to develop safe care pathways. These issues were raised with the CSANZ Board in December 2015 and the document was developed in response to the Board's request for more information. The current iteration was finalised on 14 November 2017. The authorship group comprised participants in the CSANZ adult CHD standards of care recommendations from 2013 with the inclusion of some newly trained ACHD cardiologists, who represented most states and territories across ANZ. None of the authors has any academic or professional conflict of interest.

Juvenile arthritis management in less resourced countries (JAMLess): consensus recommendations from the Cradle of Humankind.

Juvenile idiopathic arthritis (JIA) is the most prevalent chronic rheumatic disease in children and young people (CYP) and a major cause of pain and disability. The vast majority of the world's children and their families live in less resourced countries (LRCs) and face significant socioeconomic and healthcare challenges. Current recommendations for standards of care and treatment for children with JIA do not consider children living in less resourced countries. In order to develop appropriate recommendations for the care of CYP with JIA in less resourced countries a meeting of experienced pediatric rheumatologists from less resourced countries was convened with additional input from a steering group of international pediatric rheumatologists with experience in developing recommendations and standards of care for JIA. Following a needs assessment survey of healthcare workers caring for CYP with JIA in LRC, a literature review was carried out and management recommendations formulated using Delphi technique and a final consensus conference. Responses from the needs assessment were received from 121/483 (25%) practitioners from 25/49 (51%) less resourced countries. From these responses, the initial 84 recommendations were refined and expanded through a series of 3 online Delphi rounds. A final list of 90 recommendations was proposed for evaluation. Evidence for each statement was reviewed, graded, and presented to the consensus group. The degree of consensus, level of agreement, and level of evidence for these recommendations are reported. Recommendations arrived at by consensus for CYP with JIA in less resourced countries cover 5 themes: (1) diagnosis, (2) referral and monitoring, (3) education and training, (4) advocacy and networks, and (5) research. Thirty-five statements were drafted. All but one statement achieved 100% consensus. The body of published evidence was small and the quality of evidence available for critical appraisal was low. Our recommendations offer novel insights and present consensus-based strategies for the management of JIA in less resourced countries. The emphasis on communicable and endemic diseases influencing the diagnosis and treatment of JIA serves as a valuable addition to existing JIA guidelines. With increasing globalization, these recommendations as a whole provide educational and clinical utility for clinicians worldwide. The low evidence base for our recommendations reflects a shortage of research specific to less resourced countries and serves as an impetus for further inquiry towards optimizing care for children with JIA around the world.

Communication, Documentation, and Training Standards in Pediatric Psychosocial Oncology.

As part of a larger effort to create standards for psychosocial care of children with cancer, we document consensus and evidence-based data on interprofessional communication, documentation, and training for professionals providing psycho-oncology services. Six databases were searched. Sixty-five articles and six guidelines and consensus-based documents were identified; 35 met inclusion criteria. Data support strong recommendations for standards of care in communication/collaboration, documentation of patient information, and training in pediatric psycho-oncology. These are areas where extensive research is unlikely to be conducted; however, professional expectations and qualifications may be further clarified and strengthened with time.

Grown-up congenital heart disease: Recommendations for standards of care

Grown-up congenital heart disease is a rapidly growing field in adult cardiology with specific needs.

Organizing national responses for rare blood disorders: the Italian experience with sickle cell disease in childhood

BackgroundSickle cell disease (SCD) is the most frequent hemoglobinopathy worldwide but remains a rare blood disorder in most western countries. Recommendations for standard of care have been produced in the United States, the United Kingdom and France, where this disease is relatively frequent because of earlier immigration from Africa. These recommendations have changed the clinical course of SCD but can be difficult to apply in other contexts. The Italian Association of Pediatric Hematology Oncology (AIEOP) decided to develop a common national response to the rising number of SCD patients in Italy with the following objectives: 1) to create a national working group focused on pediatric SCD, and 2) to develop tailored guidelines for the management of SCD that could be accessed and practiced by those involved in the care of children with SCD in Italy.MethodsGuidelines, adapted to the Italian social context and health system, were developed by 22 pediatric hematologists representing 54 AIEOP centers across Italy. The group met five times for a total of 128 hours in 22 months; documents and opinions were circulated via web.ResultsRecommendations regarding the prevention and treatment of the most relevant complications of SCD in childhood adapted to the Italian context and health system were produced.For each topic, a pathway of diagnosis and care is detailed, and a selection of health management issues crucial to Italy or different from other countries is described (i.e., use of alternatives for infection prophylaxis because of the lack of oral penicillin in Italy).ConclusionsCreating a network of physicians involved in the day-to-day care of children with SCD is feasible in a country where it remains rare. Providing hematologists, primary and secondary care physicians, and caregivers across the country with web-based guidelines for the management of SCD tailored to the Italian context is the first step in building a sustainable response to a rare but emerging childhood blood disorder and in implementing the World Health Organization’s suggestion “to design (and) implement … comprehensive national integrated programs for the prevention and management of SCD".

Requirements for a minimum standard of care for phenylketonuria: the patients’ perspective

Phenylketonuria (PKU, ORPHA716) is an inherited disorder that affects about one in every 10,000 children born in Europe. Early and continuous application of a modified diet is largely successful in preventing the devastating brain damage associated with untreated PKU. The management of PKU is inconsistent: there are few national guidelines, and these tend to be incomplete and implemented sporadically. In this article, the first-ever pan- European patient/carer perspective on optimal PKU care, the European Society for Phenylketonuria and Allied Disorders (E.S.PKU) proposes recommendations for a minimum standard of care for PKU, to underpin the development of new pan-European guideline for the management of PKU. New standards of best practice should guarantee equal access to screening, treatment and monitoring throughout Europe. Screening protocols and interpretation of screening results should be standardised. Experienced Centres of Expertise are required, in line with current European Union policy, to guarantee a defined standard of multidisciplinary treatment and care for all medical and social aspects of PKU. Women of childbearing age require especially intensive management, due to the risk of severe risks to the foetus conferred by uncontrolled PKU. All aspects of treatment should be reimbursed to ensure uniform access across Europe to guideline-driven, evidence-based care. The E.S.PKU urges PKU healthcare professionals caring for people with PKU to take the lead in developing evidence based guidelines on PKU, while continuing to play an active role in serving as the voice of patients and their families, whose lives are affected by the condition.

Respiratory management of congenital myasthenic syndromes in childhood: Workshop 8th December 2009, UCL Institute of Neurology, London, UK

A workshop on the respiratory management of congenital myasthenic syndromes (CMS) in childhood was held on 8 December 2009 at the UCL Institute of Neurology, UK. The workshop was sponsored by the Muscular Dystrophy Campaign and attended by 20 participants from 9 centres (8 in UK and 1 in Europe). The aim of the workshop was to review respiratory management of childhood CMS in major UK specialist centres and develop recommendations for standards of care to help anticipate and treat respiratory complications.

Promoting excellence in end‐of‐life care in ALS

The type and quality of end-of-life care varies greatly in ALS; the time to initiate end-of-life care is not defined, and decision making is hampered by logistical and financial barriers. There has been no systematic review of these issues in ALS. The goals of this initiative are to: 1) improve end-of-life care for patients with ALS and families based on what limited evidence is available; 2) increase awareness, interest, and debate on the end-of-life care in ALS; and 3) identify areas needed for new prospective clinical research. The ALS Peer Workgroup reviewed the literature and 1) identified the current state of knowledge, 2) analysed the gaps in care, and 3) provided recommendations for standard of care and future research. It was shown that areas of investigation are needed on the incorporation of an interdisciplinary approach to care in ALS that includes: psychosocial evaluation and spiritual care; the use of validated instruments to assess patient and caregiver quality of life; and the establishment of proactive caregiver programs. Several public policy changes that will improve coverage for medical care, hospice, and caregiver costs are also reviewed. More clinical evidence is needed on how to provide optimal end-of-life care specifically in ALS.

Adjuvant therapy in lymph node–positive colon cancer: Current standards and future perspectives

Abstract The significant survival benefit for adjuvant chemotherapy after a curative resection for node-positive colon cancer has been established for over a decade. The first major step in progression, from randomized trials that failed to demonstrate benefit for postoperative single-agent fluorinated pyrimidines, came with intensive immunobiochemical modulation of 5-fluorouracil for a 1-year course. Subsequent trials confirmed equivalent benefit for a shorter course of therapy, and additional improvement in disease-free and overall survival has been sought through employment of alternative modulatory agents or drug administration schedule changes. Newer cytotoxic agents, whose mechanisms of action differ from that of the fluorinated pyrimidines, have been examined in combination with 5-FU, and changes in recommendations for standard of care, based on results of these maturing data sets, are awaited. The impact of tumor molecular profiles on therapeutic prediction and rational design of new agents is expected to inform the design of future generations of clinical trials. Copyright 2002, Elsevier Science (USA). All rights reserved.

Physiotherapy Management of Burned Children: A pilot study

<h2>Summary</h2> During 1989 and 1990, physiotherapists in 22 paediatric burns centres in the United Kingdom were surveyed about various aspects of the management of burned children with the emphasis on physiotherapy. The data show that widely differing approaches and techniques are used. The main issues identified have been translated into recommendations for standards of care and proposals for evaluation and rationalisation of treatment.