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BACKGROUND: Supportive care to ensure optimal quality of life is an essential component of cancer care and symptom control across the lifespan. Ongoing advances in cancer treatment, increasing toxicity from many novel treatment regimes, and variations in access to care and cancer outcomes across the globe and resource settings present significant challenges for supportive care delivery. To date, no overarching framework has been developed to guide supportive care development worldwide. As an initial step of the Multinational Association of Supportive Care in Cancer (MASCC) Supportive Care 2030 Movement, we developed a targeted, unifying set of ambition statements to envision the future of supportive cancer care. METHODS: From September 2022 until June 2023, we used a modified Delphi methodology to develop and attain consensus about ambition statements related to supportive cancer care. Leaders of MASCC Study Groups were invited to participate in an Expert Panel for the first two Delphi rounds (and a preliminary round to suggest potential ambition statements). Patient Advocates then examined and provided input regarding the ambition statements. FINDINGS: Twenty-seven Expert Panelists and 11 Patient Advocates participated. Consensus was attained on 13 ambition statements, with two sub-statements. The ambition statements addressed global standards for guideline development and implementation, coordinated and individualized care, dedicated supportive oncology services, self-management, needs for screening and actions, patient education, behavioral support, financial impact minimization, comprehensive survivorship care, and timely palliative care, reflecting collaboration, coordination and team-based approach across all levels. INTERPRETATION: This study is the first to develop shared ambitions for the future of supportive cancer care on a global level. These ambition statements can facilitate a coordinated, resource-stratified, and person-centered approach and inform research, education, clinical services, and policy efforts. FUNDING: This project received funding support from Prof Raymond Chans NHMRC Investigator Grant (APP1194051).

Abstract Background In 2017, the German Academy for Rare Neurological Diseases (Deutsche Akademie für Seltene Neurologische Erkrankungen; DASNE) was founded to pave the way for an optimized personalized management of patients with rare neurological diseases (RND) in all age groups. Since then a dynamic national network for rare neurological disorders has been established comprising renowned experts in neurology, pediatric neurology, (neuro-) genetics and neuroradiology. DASNE has successfully implemented case presentations and multidisciplinary discussions both at yearly symposia and monthly virtual case conferences, as well as further educational activities covering a broad spectrum of interdisciplinary expertise associated with RND. Here, we present recommendation statements for optimized personalized management of patients with RND, which have been developed and reviewed in a structured Delphi process by a group of experts. Methods An interdisciplinary group of 37 RND experts comprising DASNE experts, patient representatives, as well as healthcare professionals and managers was involved in the Delphi process. First, an online collection was performed of topics considered relevant for optimal patient care by the expert group. Second, a two-step Delphi process was carried out to rank the importance of the selected topics. Small interdisciplinary working groups then drafted recommendations. In two consensus meetings and one online review round these recommendations were finally consented. Results 38 statements were consented and grouped into 11 topics: health care structure, core neurological expertise and core mission, interdisciplinary team composition, diagnostics, continuous care and therapy development, case conferences, exchange / cooperation between Centers for Rare Diseases and other healthcare partners, patient advocacy group, databases, translation and health policy. Conclusions This German interdisciplinary Delphi expert panel developed consented recommendations for optimal care of patients with RND in a structured Delphi process. These represent a basis for further developments and adjustments in the health care system to improve care for patients with RND and their families.

Through automated electronic health record (EHR) data extraction and analysis, this project systematically quantified actual care delivery for children with cerebral palsy (CP) and evaluated alignment with current evidence-based recommendations. Utilizing EHR data for over 8000 children with CP, we developed an approach to define and quantify receipt of optimal care, and pursued proof-of-concept with two children with unilateral CP, Gross Motor Function Classification System (GMFCS) Level II. Optimal care was codified as a cluster of four components including physical medicine and rehabilitation (PMR) care, spasticity management, physical therapy (PT), and occupational therapy (OT). A Receipt of Care Score (ROCS) quantified the degree of adherence to recommendations and was compared with the Pediatric Outcomes Data Collection Instrument (PODCI) and Pediatric Quality of Life Inventory (PEDS QL). The two children (12 year old female, 13 year old male) had nearly identical PMR and spasticity component scores while PT and OT scores were more divergent. Functional outcomes were higher for the child who had higher adjusted ROCS. ROCSs demonstrate variation in real-world care delivered over time and differentiate between components of care. ROCSs reflect overall function and quality of life. The ROCS methods developed are novel, robust, and scalable and will be tested in a larger sample. Optimal practice, with an emphasis on integrated multidisciplinary care, can be defined and quantified utilizing evidence-based recommendations. Receipt of optimal care for childhood cerebral palsy can be scored using existing electronic health record data. Big Data approaches can contribute to the understanding of current care and inform approaches for improved care. [ABSTRACT FROM AUTHOR]

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This article aims to provide an overview of the range of long- and short-term vascular access devices (VADs) used in most healthcare settings for the administration of intravenous therapies or to deliver medical interventions. This article will describe the devices in use and the rationale for correct device selection; and how to reduce the risk of catheter related complications. Within the article, there is a discussion on the optimal care and maintenance procedures necessary to help ensure that VAD dwell complications free and until treatment is complete. This ensures patient safety, satisfaction, and an improved patient experience. [ABSTRACT FROM AUTHOR]

Background: Supportive care to ensure optimal quality of life is an essential component of cancer care and symptom control across the lifespan. Ongoing advances in cancer treatment, increasing toxicity from many novel treatment regimes, and variations in access to care and cancer outcomes across the globe and resource settings present significant challenges for supportive care delivery. To date, no overarching framework has been developed to guide supportive care development worldwide. As an initial step of the Multinational Association of Supportive Care in Cancer (MASCC) Supportive Care 2030 Movement, we developed a targeted, unifying set of ambition statements to envision the future of supportive cancer care., Methods: From September 2022 until June 2023, we used a modified Delphi methodology to develop and attain consensus about ambition statements related to supportive cancer care. Leaders of MASCC Study Groups were invited to participate in an Expert Panel for the first two Delphi rounds (and a preliminary round to suggest potential ambition statements). Patient Advocates then examined and provided input regarding the ambition statements., Findings: Twenty-seven Expert Panelists and 11 Patient Advocates participated. Consensus was attained on 13 ambition statements, with two sub-statements. The ambition statements addressed global standards for guideline development and implementation, coordinated and individualized care, dedicated supportive oncology services, self-management, needs for screening and actions, patient education, behavioral support, financial impact minimization, comprehensive survivorship care, and timely palliative care, reflecting collaboration, coordination and team-based approach across all levels., Interpretation: This study is the first to develop shared ambitions for the future of supportive cancer care on a global level. These ambition statements can facilitate a coordinated, resource-stratified, and person-centered approach and inform research, education, clinical services, and policy efforts., Funding: This project received funding support from Prof Raymond Chan's NHMRC Investigator Grant (APP1194051)., Competing Interests: All authors declare their leadership roles within the Multinational Association for Supportive Care in Cancer. The individual authors also reported their respective conflicts of interest, however are not judged to be directly relevant to the conduct of this study. FA reported reimbursement from VieCure for travel-related expenses to attend ASCO 2024 and MASCC 2024; US Patent No. 11, 798,689 B2: AI decision-support platform to generate patient-specific health plans based on unique patient circumstances; Clinical Advisory Committee Chair—VieCure; Stock—VieCure Oncology Decision Support Platform. IO reported receiving reimbursement from MASCC to travel to 2022 and 2023 MASCC Annual Scientific Meetings; and Chair of SAX Institute Board. CT reported Leadership or fiduciary roles: Executive Director, Global Focus on Cancer; Advisory Board, Asia Pacific Oncology Alliance; Steering Committee, WHO Symposium on Meaningful Engagement; Editorial Board, Cancer Survivorship Research & Care Journal. PB reported receiving consulting fees from Angelini, Nestle, Nutricia and Molteni; and participation on Angelini Advisory Board/Data Safety Monitoring Board. TN reported receiving research funding from Otsuka Pharmaceutical CO, Ltd, and Kracie Ltd; and lecture fee for ONO Pharmaceutical CO Ltd. ADO reported Pfizer stock ownership. HW reported she is the recipient of a Hospital Research Foundation Research Fellowship. FS reported payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events from BMS, Sanofi, Roche, MSD, Prostrakan, Leo pharma, Janssen, Pfizer, Amgen, Pierre Fabre Oncologie, Pharmanovia, Vifor Pharma, GSK, Viatris, Helsinn, Gilead, and Daichy Sankyo. PA reported receiving grant (250.000 euros) from Cariplo Foundation; consulting fees from GHD Healthcare, Oncosultions, LLC, and Techspert. IO LTD., (Crown Copyright © 2024 Published by Elsevier Ltd.)

The fight against cervical cancer requires effective screening together with optimal and on-time treatment along the care continuum. We examined the impact of cervical cancer testing and treatment guidelines on testing practices, and follow-up adherence to guidelines. Data from Estonian electronic health records and healthcare provision claims for 50,702 women was used. The annual rates of PAP tests, HPV tests and colposcopies during two guideline periods (2nd version 2012–2014 vs 3rd version 2016–2019) were compared. To assess the adherence to guidelines, the subjects were classified as adherent, over- or undertested based on the timing of the appropriate follow-up test. The number of PAP tests decreased and HPV tests increased during the 3rd guideline period (p < 0.01). During the 3rd guideline period, among 21–29-year-old women, the adherence to guidelines ranged from 38.7% (44.4...50.1) for ASC-US to 73.4% (62.6...84.3) for HSIL and among 30–59-year-old from 49.0% (45.9...52.2) for ASC-US to 65.7% (58.8...72.7) for ASC H. The highest rate of undertested women was for ASC-US (21–29y: 25.7%; 30–59y: 21.9%). The rates of over-tested women remained below 12% for all cervical pathologies observed. There were 55.2% (95% CI 49.7...60.8) of 21–24-year-olds and 57.1% (95% CI 53.6...60.6) of 25–29-year-old women who received HPV test not adherent to guidelines. Our findings highlighted some shortcomings in guideline adherence, especially among women under 30. The insights gained from this study help to improve the quality of care and, thus, reduce cervical cancer incidence and mortality. • Decreased PAP and increased HPV tests indicate adoption of new cervical cancer prevention guideline. • Women with high-grade pathology are more adherent to guidelines. • Almost fifth of women with high-grade pathology do not receive colposcopy within year. • Over-testing is more prevalent among young women under 30. [ABSTRACT FROM AUTHOR]

Abstract Background To examine the association between delay in planned diabetes care and quality of outcomes. Methods A retrospective analysis of primary care and inpatient records for 2567 Aboriginal patients, with diabetes, living in 49 remote communities in the Northern Territory of Australia. Poisson regression was used to estimate the association between delay from diagnosis to documented diabetes care plan and three outcome measures: mean HbA1c level, most recent blood pressure and number of diabetes-related hospital admissions. Results Compared with no delay (

Objectives: Several patient factors have been described to influence access to optimal cancer care like socioeconomic factors or place of residence. In this study, we investigate whether data routinely collected in a clinical cancer registry can be used to identify populations of lung cancer patients with increased risk of not receiving optimal cancer care. Methods: We analysed data of 837 lung cancer patients extracted from the clinical cancer registry of a German university hospital. We compared patient populations by two indicators of optimal care, namely implementation of tumour board meeting recommendations as well as the timeliness of care. Results: There was a high rate of implementation of tumour board meeting recommendations of 94.4%. Reasons for non‐implementation were mainly a patient's own wish or a worsening of the health situation. Of all patient parameters, only tumour stage was associated with the two optimal care indicators. Conclusion: Using routine data from a clinical cancer registry, we were not able to identify patient populations at risk of not getting optimal care and the implementation of guideline‐conform care appeared to be very high in this setting. However, limitations were the ambiguity of optimal care indicators and availability of parameters predictive for patients' vulnerability. [ABSTRACT FROM AUTHOR]

Healthcare systems across the world are challenged with problems of misdiagnosis, non‐beneficial care, unwarranted practice variation and inefficient or unsafe practice. In countering these shortcomings, clinicians must be able to think critically, interpret and assimilate new knowledge, deal with uncertainty and change behaviour in response to compelling new evidence. Three critical thinking skills underpin effective care: clinical reasoning, evidence‐informed decision‐making and systems thinking. It is important to define these skills explicitly, explain their rationales, describe methods of instruction and provide examples of optimal application. Educational methods for developing and refining these skills must be embedded within all levels of clinician training and continuing professional development. [ABSTRACT FROM AUTHOR]

Objective: To improve knowledge of neonatal hypoxic-ischemic encephalopathy, a prospective, nationwide, population-based cohort of affected children is being set up between September 2015 and March 2017., Methods: During this period, 794 cases are collected, with information on pregnancy, delivery, neonatal stay and outcome at the end of hospitalization. Clinical and parental questionnaire follow-up is planned until the child is 4 years old., Results: This article presents the clinical presentation of the newborns included, the analysis of factors associated with short-term outcome at hospital discharge and the organizational factors associated with treatment with therapeutic hypothermia., Conclusion: These data illustrate the value of a prospective cohort to analyze the management of anoxo-ischemic encephalopathy in France., (Copyright © 2024. Published by Elsevier Masson SAS.)

Objective: To assess challenges to optimal rheumatology care from the perspective of patients served by our institution's rheumatology division. Design setting and participants: Focus group study of adult rheumatic disease patients who attend clinics at a university teaching hospital in Montreal, Canada. Interventions: Individuals participated in 1-h focus group discussions concerning their experiences and beliefs regarding rheumatology care. Sessions were recorded and transcripts generated. A thematic analysis approach was used by two individual analyzers. Main outcome measures and results: Eighteen patients participated in three focus groups (group one = 8 patients; group two = 5; group three = 5). Eleven patients had systemic lupus erythematosus, 6 had rheumatoid arthritis, and 1 patient had psoriatic arthritis. The average age (standard deviation) was 51.2 (14.0) years, disease duration 23.5 (14.5) years, and in the majority had at least a high school education. All participants were female and 72.2% were Caucasian. Three main themes emerged: theme 1 identified patients' needs for information and support, at diagnosis and throughout the disease trajectory; theme 2 identified barriers to accessing health care: theme 3 identified patients' beliefs regarding improvements needed to optimize their experiences throughout the disease course. Conclusions: Our focus group study not only clarified the needs of rheumatology patients with chronic inflammatory disease, and identified barriers to optimal rheumatology care, but also was a source of recommendations that might improve patient experiences in seeking health care in a rheumatology setting. Limitations include the fact that our participants were all female, and mostly were middle aged, Caucasian and well educated. Regardless, the findings can help inform efforts to improve rheumatology care. Key Points • Our focus group study clarified the needs of chronic inflammatory rheumatic disease, and identified barriers to optimal rheumatology care. • Despite some potential limitations, our work provides recommendations that could improve patient experiences when seeking health care in a rheumatology setting. [ABSTRACT FROM AUTHOR]

Despite its ubiquitous use, fetal heart rate (FHR) monitoring has not resulted in a significant reduction in hypoxic-ischemic encephalopathy following delivery. This manuscript reviews the reasons for this failure including limitations of FHR to accurately predict hypoxia, low prevalence of hypoxic-ischemic encephalopathy, and lack of standardization of interpretation and intervention. We propose an alternative goal for FHR monitoring during labor to provide optimal care by early identification of truly concerning features, initiation of appropriate interventions, clear documentation of concerns and plans, and clear communication between team members on labor and delivery, including initiation of the chain of command as needed. [ABSTRACT FROM AUTHOR]

Abstract Background Opportunities to improve emergency surgery outcomes exist through guided better practice and reduced variability. Few attempts have been made to define optimal care in emergency surgery, and few clinically derived key performance indicators (KPIs) have been published. A summit was therefore convened to look at resources for optimal care of emergency surgery. The aim of the Donegal Summit was to set a platform in place to develop guidelines and KPIs in emergency surgery. Methods The project had multidisciplinary global involvement in producing consensus statements regarding emergency surgery care in key areas, and to assess feasibility of producing KPIs that could be used to monitor process and outcome of care in the future. Results Forty-four key opinion leaders in emergency surgery, across 7 disciplines from 17 countries, composed evidence-based position papers on 14 key areas of emergency surgery and 112 KPIs in 20 acute conditions or emergency systems. Conclusions The summit was successful in achieving position papers and KPIs in emergency surgery. While position papers were limited by non-graded evidence and non-validated KPIs, the process set a foundation for the future advancement of emergency surgery.

Aim This study reports on any barriers to optimal treatment for lung cancer in South West Victoria. Methods Treatment pathways on all patients newly diagnosed with lung cancer was collated (2015, n=200). Results A total of 88% of the lung cancer patients had a history of smoking. Many of the patients presented at Stage III or IV at diagnosis (59%), 25% were diagnosed after an emergency department visit, 85% had chest x-rays, 92% had CT scans, and 86% saw their specialist within 2 weeks. Patients residing in Geelong were more likely to have their treatment plan discussed at a multidisciplinary meeting compared to patients in the South West (75% versus 42%). At 12 months post-diagnosis there was a higher survival rate for patients residing in Geelong compared to those living in the South West region (51% versus 31%) and for females (57% versus 36%). Conclusion The majority of patients had a history of smoking and many presented with late-stage disease. [ABSTRACT FROM AUTHOR]

Maternity care in the United States continues to be intervention intensive. The routine use of intravenous fluids, restrictions on eating and drinking, continuous electronic fetal monitoring, epidural analgesia, and augmentation of labor characterize most U.S. births. The use of episiotomy has decreased but is still higher than it should be. These interventions disturb the normal physiology of labor and birth and restrict women's ability to cope with labor. The result is a cascade of interventions that increase risk, including the risk of cesarean surgery, for women and babies. This paper describes the use and effect of routine interventions on the physiologic process of labor and birth and identifies the unintended consequences resulting from the routine use of these interventions in labor and birth. [ABSTRACT FROM AUTHOR]

Background: The continued rise in healthcare expenditures has not produced commensurate improvements in patient outcomes, leading US healthcare stakeholders to emphasize value-based care. Transition to such a model requires all team members to adopt a new strategic and organizational framework., Objective: To describe and report a strategy for the implementation of a novel patient-centered value-based "optimal surgical care" (OSC) framework, with validation and cost analysis in kidney surgery., Design, Setting, and Participants: An observational study of care episodes at a single institution from 2014 to 2019 was conducted., Outcome Measurements and Statistical Analysis: Multidisciplinary teams defined OSC by core and procedure-specific metrics using a combination of provider-based ("bottom-up") and "clinical leadership"-based ("top-down") strategies. Baseline OSC rates across were established, while identifying proportions of OSC achieved by coefficient of variation (CV) in total direct costs. Multivariable linear regression comparing cost between OSC and non-OSC encounters was performed, adjusting for patient characteristics., Results and Limitations: An analysis of 30 261 perioperative care episodes was performed. Following the implementation of an OSC framework, there was an increase in OSC rates across all procedure buckets using core (25%) and procedure-specific (26%) metrics. Among the tumors tested, kidney cancer surgical episodes held the highest OSC rate improvement (67%) with lowest variability in cost (CV 0.5). OSC was associated with significant total cost savings across all tumor types after adjusting for inflation (p < 0.05). Compared with non-OSC episodes, a significant reduction in the cost ratio of OSC was noted for renal surgery (p < 0.01), with estimated costs savings of $2445.87 per OSC encounter., Conclusions: Institutional change directing efforts toward optimizing surgical care and emphasizing value rather than focusing solely on expense reduction is associated with improved outcomes, while potentially reducing costs. The strategy for implementation requires serial performance analyses, engaging and educating providers, and continuous ongoing adjustments to achieve durable results., Patient Summary: In this study, we report our strategy and outcomes for transitioning to a value-based healthcare model using a novel "optimal surgical care" framework at a National Cancer Institute-designated comprehensive cancer center. We observed an increase in optimal surgical care episodes across all specialties after 5 yr, with a potential associated reduction in cost expenditure. We conclude that the key to a successful and sustained transition is the implementation strategy, focusing on continual review and provider engagement., (Published by Elsevier B.V.)

Purpose: To describe the perceptions of haematological cancer patients about the components of care deemed essential to supporting them to obtain and understand information about their cancer, its treatment and its impact on their life.Methods: A cross-sectional survey was conducted with individuals diagnosed with haematological cancer. Eligible patients presenting for a scheduled outpatient appointment were invited to complete a pen-and-paper survey in the clinic waiting room while waiting for their appointment. Those who completed the survey were mailed a second survey approximately 4 weeks later. Participants provided data about their demographic and disease characteristics and perceptions of optimal care for haematological cancer patients.Results: A total of 170 patients completed both surveys and were included in the analysis. The items endorsed as essential components of care by the highest number of participants were being able to share accurate information about their disease, treatment and ongoing care with their GP/family doctor (49%); being able to obtain up-to-date information specific to their circumstances (43%); being able to obtain information in the amount of detail that they want (34%); being able to call a health care professional at the treatment centre where they are receiving care (34%) and being able to call an experienced health care professional who has knowledge of their disease and its treatment (34%).Conclusions: Further research is needed to determine ways of meeting the preferences of haematological cancer patients and determining the associated impact on patient outcomes. [ABSTRACT FROM AUTHOR]

Abstract: Background: The aim of the present study was to estimate the lifetime health and economic effects of different strategies of caring for diabetic foot in the Chinese setting. Methods: A mathematical model was developed to simulate the onset and progression of diabetic foot disease in patients with type 2 diabetes managed with optimal care and usual care. Clinical and utility data were obtained from the published literature. Direct medical costs and resource utilization in the Chinese healthcare setting were considered. Sensitivity analyses were undertaken to test the effects of a range of variables and assumptions on the results. Heath benefits and costs were the outcome measures assessed. Results: Compared with usual care, optimal care was a cost‐saving option that exhibited lower costs with improved health benefits, including greater quality‐adjusted life‐years (QALYs) and reduced incidence of foot complications. The lifetime saving costs per additional QALY gained by optimal care were US$2015. The model outcome was most sensitive to the risk ratio of foot ulcers and amputation for optimal care over usual care. Conclusions: Implementing guideline‐based optimal care for diabetic foot is likely to be cost‐effective in a health resource‐limited setting. [ABSTRACT FROM AUTHOR]

Background: Opportunities to improve emergency surgery outcomes exist through guided better practice and reduced variability. Few attempts have been made to define optimal care in emergency surgery, and few clinically derived key performance indicators (KPIs) have been published. A summit was therefore convened to look at resources for optimal care of emergency surgery. The aim of the Donegal Summit was to set a platform in place to develop guidelines and KPIs in emergency surgery. Methods: The project had multidisciplinary global involvement in producing consensus statements regarding emergency surgery care in key areas, and to assess feasibility of producing KPIs that could be used to monitor process and outcome of care in the future. Results: Forty-four key opinion leaders in emergency surgery, across 7 disciplines from 17 countries, composed evidence-based position papers on 14 key areas of emergency surgery and 112 KPIs in 20 acute conditions or emergency systems. Conclusions: The summit was successful in achieving position papers and KPIs in emergency surgery. While position papers were limited by non-graded evidence and non-validated KPIs, the process set a foundation for the future advancement of emergency surgery. [ABSTRACT FROM AUTHOR]

We extend the economic analysis of negligence and intervening causation to 'two-sided causation' scenarios. In the two-sided causation scenario the effectiveness of the injurer's care depends on some intervention, and the risk of harm generated by the injurer's failure to take care depends on some other intervention. We find that the distortion from socially optimal care is more severe in the two-sided causation scenario than in the one-sided causation scenario, and generally in the direction of excessive care. The practical lesson is that the likelihood that injurers will have optimal care incentives under the negligence test in the presence of intervening causal factors is low. [ABSTRACT FROM AUTHOR]

Evidence-based guidelines, or recommendations, for the management of infants with seizures are lacking. A Task Force of the Commission of Pediatrics developed a consensus document addressing diagnostic markers, management interventions, and outcome measures for infants with seizures. Levels of evidence to support recommendations and statements were assessed using the American Academy of Neurology Guidelines and the Grading of Recommendations Assessment, Development and Evaluation ( GRADE) system. The report contains recommendations for different levels of care, noting which would be regarded as standard care, compared to optimal care, or 'state of the art' interventions. The incidence of epilepsy in the infantile period is the highest of all age groups (strong evidence), with epileptic spasms the largest single subgroup and, in the first 2 years of life, febrile seizures are the most commonly occurring seizures. Acute intervention at the time of a febrile seizure does not alter the risk for subsequent epilepsy (class 1 evidence). The use of antipyretic agents does not alter the recurrence rate (class 1 evidence), and there is no evidence to support initiation of regular antiepileptic drugs for simple febrile seizures (class 1 evidence). Infants with abnormal movements whose routine electroencephalography ( EEG) study is not diagnostic, would benefit from video- EEG analysis, or home video to capture events (expert opinion, level U recommendation). Neuroimaging is recommended at all levels of care for infants presenting with epilepsy, with magnetic resonance imaging ( MRI) recommended as the standard investigation at tertiary level (level A recommendation). Genetic screening should not be undertaken at primary or secondary level care (expert opinion). Standard care should permit genetic counseling by trained personal at all levels of care (expert opinion). Genetic evaluation for Dravet syndrome, and other infantile-onset epileptic encephalopathies, should be available in tertiary care (weak evidence, level C recommendation). Patients should be referred from primary or secondary to tertiary level care after failure of one antiepileptic drug (standard care) and optimal care equates to referral of all infants after presentation with a seizure (expert opinion, level U evidence). Infants with recurrent seizures warrant urgent assessment for initiation of antiepileptic drugs (expert opinion, level U recommendation). Infantile encephalopathies should have rapid introduction and increment of antiepileptic drug dosage (expert opinion, level U recommendation). There is no high level evidence to support any particular current agents for use in infants with seizures. For focal seizures, levetiracetam is effective (strong evidence); for generalized seizures, weak evidence supports levetiracetam, valproate, lamotrigine, topiramate, and clobazam; for Dravet syndrome, strong evidence supports that stiripentol is effective (in combination with valproate and clobazam), whereas weak evidence supports that topiramate, zonisamide, valproate, bromide, and the ketogenic diet are possibly effective; and for Ohtahara syndrome, there is weak evidence that most antiepileptic drugs are poorly effective. For epileptic spasms, clinical suspicion remains central to the diagnosis and is supported by EEG, which ideally is prolonged (level C recommendation). Adrenocorticotropic hormone ( ACTH) is preferred for short-term control of epileptic spasms (level B recommendation), oral steroids are probably effective in short-term control of spasms (level C recommendation), and a shorter interval from the onset of spasms to treatment initiation may improve long-term neurodevelopmental outcome (level C recommendation). The ketogenic diet is the treatment of choice for epilepsy related to glucose transporter 1 deficiency syndrome and pyruvate dehydrogenase deficiency (expert opinion, level U recommendation). The identification of patients as potential candidates for epilepsy surgery should be part of standard practice at primary and secondary level care. Tertiary care facilities with experience in epilepsy surgery should undertake the screening for epilepsy surgical candidates (level U recommendation). There is insufficient evidence to conclude if there is benefit from vagus nerve stimulation (level U recommendation). The key recommendations are summarized into an executive summary. The full report is available as Supporting Information. This report provides a comprehensive foundation of an approach to infants with seizures, while identifying where there are inadequate data to support recommended practice, and where further data collection is needed to address these deficits. [ABSTRACT FROM AUTHOR]

Objective: People diagnosed with brain cancer commonly present to the emergency department (ED). There is uncertainty about essential components and processes of optimal care from the perspective of consumers, and few guidelines exist to inform practice. This study examined the perceptions of outpatients and their support persons regarding what constitutes optimal care for people with brain cancer presenting to the ED., Methods: A cross sectional descriptive survey study was undertaken. Participants included adults attending hospital outpatient clinics ( n  ​= ​181, 60% of eligible participants). Participants completed a survey assessing perceptions of optimal care for brain cancer patients presenting to emergency department and socio-demographic characteristics., Results: The survey items endorsed as 'essential' by participants included that the emergency department team help patients: 'understand signs and symptoms to watch out for' (51%); 'understand the next steps in care and why' (48%); 'understand if their medical condition suggests it is likely they will die in hospital' (47%); 'ask patients if they have a substitute decision maker and want that person told they are in the emergency department' (44%); 'understand the purpose of tests and procedures' (41%)., Conclusions: Symptom management, effective communication and supported decision-making should be prioritised by ED teams. Further research to establish the views of those affected by brain cancer about essential care delivered in the ED setting, and to compare these views with the quality of care that is actually delivered, is warranted., (© 2023 The Authors.)

Purpose: The surgical management of adolescent idiopathic scoliosis (AIS) has seen many developments in the last two decades. Little high-level evidence is available to support these changes and guide treatment. This study aimed to identify optimal operative care for adolescents with AIS curves between 40° and 90° Cobb angle. Methods: From July 2012 to April 2013, the AOSpine Knowledge Forum Deformity performed a modified Delphi survey where current expert opinion from 48 experienced deformity surgeons, representing 29 diverse countries, was gathered. Four rounds were performed: three web-based surveys and a final face-to-face meeting. Consensus was achieved with ≥70 % agreement. Data were analyzed qualitatively and quantitatively. Results: Consensus of what constitutes optimal care was reached on greater than 60 aspects including: preoperative radiographs; posterior as opposed to anterior (endoscopic) surgical approaches; use of intraoperative spinal cord monitoring; use of local autologous bone (not iliac crest) for grafts; use of thoracic and lumbar pedicle screws; use of titanium anchor points; implant density of <80 % for 40°-70° curves; and aspects of postoperative care. Variability in practice patterns was found where there was no consensus. In addition, there was consensus on what does not constitute optimal care, including: routine pre- and intraoperative traction; routine anterior release; use of bone morphogenetic proteins; and routine postoperative CT scanning. Conclusions: International consensus was found on many aspects of what does and does not constitute optimal operative care for adolescents with AIS. In the absence of current high-level evidence, at present, these expert opinion findings will aid health care providers worldwide define appropriate care in their regions. Areas with no consensus provide excellent insight and priorities for future research. [ABSTRACT FROM AUTHOR]

Maternity care in the United States is intervention intensive. The routine use of intravenous fluids, restrictions on eating and drinking, continuous electronic fetal monitoring, epidural analgesia, and augmentation of labor characterize most U.S. births. The use of episiotomy is far from restrictive. These interventions disturb the normal physiology of labor and birth and restrict women’s ability to cope with labor. The result is a cascade of interventions that increase risk, including the risk of cesarean surgery, for women and babies. This article is an updated evidence-based review of the “Lamaze International Care Practices That Promote Normal Birth, Care Practice #4: No Routine Interventions,” published in The Journal of Perinatal Education, 16(3), 2007. [ABSTRACT FROM AUTHOR]

Adolescents and young adults with cancer are a distinct subgroup of patients within oncology. From the onset of symptoms until the completion of therapy and beyond, they face physical, psychological, and social challenges that are significantly different from those of adults and children. Survival rates and quality of life outcomes for this population have not improved to the same extent that have for younger and older patients. Improvements in quality of care, overall survival and quality of life for these patients require access to specialized care and participation in clinical trials; assistance with management of disease and treatment effects (especially fertility and body image issues); assessment of psychosocial needs; facilitated transition to off-treatment care; and referral to age-appropriated information and support services. Staff team caring for young patients must be dedicated to working with this age group and should have specialist knowledge and training to support their specific needs. [ABSTRACT FROM AUTHOR]

Current research often refers to cultural competence to improve health care delivery. In addition, it focuses on the cultural uniqueness of each health service user for optimal personalized care. This study aimed to collect self-assessment data from health professionals regarding their cultural competence and to identify their development needs. A mixed methods design was adopted using the Cultural Competence Self-assessment Checklist of the Central Vancouver Island Multicultural Society. This was translated into Greek, validated, and then shared with health professionals in Cyprus. Subsequently, a semi-structured interview guide was designed and utilized. This was structured in exactly the same question categories as the questionnaire. Data collection took place between October 2021 and May 2022, and convenience sampling was used to recruit 499 health scientists in Cyprus. The sample comprised doctors, nurses, psychologists, midwives, social workers, and physiotherapists. Subsequently, 62 interviews were conducted with participants from the same specialties. The results showed that (compared to other health professionals) nurses and psychologists are more sensitive to issues of cultural competence. It would appear that the more socially oriented sciences had better-prepared healthcare staff to manage diversity in context. However, there is a gap between knowledge and skills when comparing doctors to nurses; they seem to be more skilled and willing to intervene actively in cases of racist behavior or problem-solving. In conclusion, participants identified the importance of their cultural competence; they also realized the importance of optimal planning of personalized health care. There is a significant need for continuous and specialized cultural competence training for all health professions.

Little is known about the impact of the recent US economic downturn and health care reform on patient, caregiver and health care provider ( HCP) decision-making for haemophilia A. To explore the impact of the recent economic downturn and perceived impact of health care reform on haemophilia A treatment decisions from patient, caregiver and HCP perspectives. Patients/caregivers and HCPs completed a self-administered survey in 2011. Survey participants were asked about demographics, the impact of the recent economic downturn and health care reform provisions on their treatment decisions. Seventy three of the 134 (54%) patients/caregivers and 39 of 48 (81%) HCPs indicated that the economic downturn negatively impacted haemophilia care. Seventy of the 73 negatively impacted patients made financially related treatment modifications, including delaying/cancelling routine health care visit, skipping doses and/or skipping filling prescription. Treatment modifications made by HCPs included delaying elective surgery, switching from higher to lower priced product, switching from recombinant to plasma-derived products and delaying prophylaxis. Health care reform was generally perceived as positive. Due to the elimination of lifetime caps, 30 of 134 patients (22%) and 28 of 48 HCPs (58%) indicated that they will make treatment modifications by initiating prophylaxis or scheduling routine appointment/surgery sooner. Both patients/caregivers and HCPs reported that the economic downturn had a negative impact on haemophilia A treatment. Suboptimal treatment modifications were made due to the economic downturn. Health care reform, especially the elimination of lifetime caps, was perceived as positive for haemophilia A treatment and as a potential avenue for contributing to more optimal treatment behaviours. [ABSTRACT FROM AUTHOR]

. For 50 years, the World Federation of Hemophilia (WFH) has been working globally to close the gap in care and to achieve Treatment for All patients, men and women, with haemophilia and other inherited bleeding disorders, regardless of where they might live. The WFH estimates that more than one in 1000 men and women has a bleeding disorder equating to 6,900,000 worldwide. To close the gap in care between developed and developing nations a continued focus on the successful strategies deployed heretofore will be required. However, in response to the rapid advances in treatment and emerging therapeutic advances on the horizon it will also require fresh approaches and renewed strategic thinking. It is difficult to predict what each therapeutic advance on the horizon will mean for the future, but there is no doubt that we are in a golden age of research and development, which has the prospect of revolutionizing treatment once again. An improved understanding of 'optimal' treatment is fundamental to the continued evolution of global care. The challenges of answering government and payer demands for evidence-based medicine, and cost justification for the introduction and enhancement of treatment, are ever-present and growing. To sustain and improve care it is critical to build the body of outcome data for individual patients, within haemophilia treatment centers (HTCs), nationally, regionally and globally. Emerging therapeutic advances (longer half-life therapies and gene transfer) should not be justified or brought to market based only on the notion that they will be economically more affordable, although that may be the case, but rather more importantly that they will be therapeutically more advantageous. Improvements in treatment adherence, reductions in bleeding frequency (including microhemorrhages), better management of trough levels, and improved health outcomes (including quality of life) should be the foremost considerations. As part of a new WFH strategic plan (2012-2014) the WFH has identified several key initiatives for particular emphasis - continuation of the Global Alliance for Progress (GAP) program, a new initiative to address underserved countries and regions (The Cornerstone Initiative), enhancing health outcomes research and analysis, and a new research mentorship program. Despite our progress to date in closing the global gap in care, our work is not complete. Too many patients remain undiagnosed and too few receive adequate treatment. This paper will also discuss historical, present and future challenges and opportunities to close the gap in care and achieve Treatment for All. [ABSTRACT FROM AUTHOR]

Abstract: Objectives: Limited data currently exists within the UK addressing the level of Parkinson’s disease (PD) healthcare provision. We investigated whether care for PD patients in a UK community met national guidelines, and the determinants of sub-optimal care for this patient group. Methods: 340 PD patients were identified from a population of 242,606 (crude prevalence 140 per 100,000 (95% CI 126–156 per 100,000), age-adjusted prevalence 199 per 100,000 (95% CI 178–221 per 100,000)). 248 out of 340 (73%) PD patients identified took part, completing rating scales assessing cognitive, non-motor and sociodemographic variables. Results and conclusions: 9% of patients had never seen a neurologist for their PD and 18.5% were sub-optimally managed; defined as (a) delay between initial diagnosis and first consultation by a specialist >1 year and (b) patients who had not had specialist PD review for >1 year. Older age, poor cognition and worse mobility were major factors in determining sub-optimal care whilst lower education level and tremor as initial symptom were more modest predictors. 20% of patients had been started on dopaminergic therapies including ergot-derived agonists by their GP prior to referral and less than a third had seen allied health professionals throughout their illness. Further work is required to test whether these findings are generalisable across the country and identify what can be done to ensure equal access to specialist care so that all PD patients have access to best practice. [Copyright &y& Elsevier]

Background: In 2008, the American Society for Breast Surgeons launched its Mastery in Breast Surgery Pilot Program to demonstrate feasibility of a Web-based tool for breast surgeons to document and monitor quality outcomes. Methods: Participating surgeons report performance of three quality measures for breast procedures: Was a needle biopsy performed to evaluate the breast lesion before the procedure? Was the surgical specimen oriented? For nonpalpable lesions localized with image guidance, was there intraoperative confirmation of removal? Data are collected through the American Society for Breast Surgeons' Web-based software using a secure server and encrypted identification numbers. Surgeon demographic/practice characteristic data were collected, and logistic regression models were used to identify factors that affected quality measures. Results: From October 2008 to December 2009, a total of 696 surgeons entered data for 28,798 breast procedures. Participants were diverse in years in practice, geographic location, practice setting and type, and proportion of practice made up of breast procedures. Delivery of "optimal care" (defined as delivery of all quality measures for which there was no valid clinical reason for nonperformance) was high for all surgeon demographic/practice characteristics, ranging from 81% to 94%. Statistically significant differences in delivery of quality measures were observed within all physician demographic/practice characteristic variables, but many absolute differences were small. Conclusions: The high level of participation and volume of breast procedures for which quality measure data was entered demonstrate this is a feasible means of collecting quality performance data. Future development will include identifying/developing additional quality measures and establishing evidence-based benchmarks for care on the basis of data collected. [ABSTRACT FROM AUTHOR]

Our study sought to identify barriers to optimal care for individuals with rheumatoid arthritis (RA). Our study was set in a population with universal access to comprehensive health care in the context of a university hospital health network. Using purposive sampling, we invited RA patients, health professionals, and decision makers from urban and rural regions to participate in structured focus group interviews. Content analysis was performed to determine themes emerging from the data. We identified four general themes. First, initial barriers to optimal care for people begin before primary care contact, at the level of the general population and/or related to primary care access. Second, many factors (at the patient, physician, and system level) influenced how quickly a patient is referred from primary to specialty care. Third, after referral, multiple comanagement issues influence patient outcomes. Fourth, optimizing RA care requires adequate resources. Participants emphasized the need for more education (of patients, of health care providers, and within the general community), better communication between and among patients and health care providers, and more efficient use of existing resources. Our work provides insights regarding barriers to and facilitators of optimal care in RA. Further work with these stakeholder groups in our health care region will examine potential solutions and the feasibility of their implementation. Our work provides an example of how research can assist stakeholder leaders in creating structured and incremental plans to improve health care delivery for persons with chronic diseases like RA. [ABSTRACT FROM AUTHOR]