Testing the Feasibility of a Passive and Active Case Ascertainment System for Multiple Rare Conditions Simultaneously: The Experience in Three US States

Background: Owing to their low prevalence, single rare conditions are difficult to monitor through current state passive and active case ascertainment systems. However, such monitoring is important because, as a group, rare conditions have great impact on the health of affected individuals and the well-being of their caregivers. A viable approach could be to conduct passive and active case ascertainment of several rare conditions simultaneously. This is a report about the feasibility of such an approach. Objective: To test the feasibility of a case ascertainment system with passive and active components aimed at monitoring 3 rare conditions simultaneously in 3 states of the United States (Colorado, Kansas, and South Carolina). The 3 conditions are spina bifida, muscular dystrophy, and fragile X syndrome. Methods: Teams from each state evaluated the possibility of using current or modified versions of their local passive and active case ascertainment systems and datasets to monitor the 3 conditions. Together, these teams established the case definitions and selected the variables and the abstraction tools for the active case ascertainment approach. After testing the ability of their local passive and active case ascertainment system to capture all 3 conditions, the next steps were to report the number of cases detected actively and passively for each condition, to list the local barriers against the combined passive and active case ascertainment system, and to describe the experiences in trying to overcome these barriers. Results: During the test period, the team from South Carolina was able to collect data on all 3 conditions simultaneously for all ages. The Colorado team was also able to collect data on all 3 conditions but, because of age restrictions in its passive and active case ascertainment system, it was able to report few cases of fragile X syndrome. The team from Kansas was able to collect data only on spina bifida. For all states, the implementation of an active component of the ascertainment system was problematic. The passive component appears viable with minor modifications. Conclusions: Despite evident barriers, the joint passive and active case ascertainment of rare disorders using modified existing surveillance systems and datasets seems feasible, especially for systems that rely on passive case ascertainment

Campus Conversations on Scholarly Communications: May 2020 Report

Campus Conversations on Scholarly Communications was created as a mini-grant program to foster institutional dialogue. Funded by the Statewide California Electronic Library Consortium (SCELC) Project Initiatives Fund (SPIF) and managed by the Scholarly Communications Committee, grants of up to $800 were used by member and affiliate libraries to engage diverse constituents on topics about licensing contracts, open access, or other scholarly communication topics. This dialogue is needed to address complex issues such as price increases, library budgets, market dominance, social justice, accessibility, sustainability, and relevance. Grant recipients share their work and reflections, inevitably impacted by COVID-19, in this report

Campus Conversations on Scholarly Communications: May 2020 Report

Campus Conversations on Scholarly Communications was created as a mini-grant program to foster institutional dialogue. Funded by the Statewide California Electronic Library Consortium (SCELC) Project Initiatives Fund (SPIF) and managed by the Scholarly Communications Committee, grants of up to $800 were used by member and affiliate libraries to engage diverse constituents on topics about licensing contracts, open access, or other scholarly communication topics. This dialogue is needed to address complex issues such as price increases, library budgets, market dominance, social justice, accessibility, sustainability, and relevance. Grant recipients share their work and reflections, inevitably impacted by COVID-19, in this report

What outpatient models have proven efficacy for assessment and management of pelvic radiotherapy late effects?

Pelvic radiotherapy has an essential role in the curative treatment plan of several cancers, but is associated with late adverse effects which may persist for years and have significant impact on social functioning and quality of life. These late effects include gastrointestinal symptoms, urinary symptoms and psychosexual symptoms amongst others. These symptoms often go unreported by patients, with the focus in busy clinical oncology settings often on disease control. However there is evidence that many gastroenterology symptoms can be managed by addressing the physiological and functional changes induced by radiotherapy, and opportunities may also exist for improving urological and sexual function. The purpose of this rapid review is to identify models of care which accurately identify patients with late toxicity following pelvic radiotherapy, and effectively manage that symptom burden. The purpose is to inform the development of local services which can most efficiently address these currently unmet needs

What are the attitudes and perceptions of patients with pulmonary fibrosis and their carers towards use of oxygen therapy? A rapid review

Idiopathic Pulmonary Fibrosis (IPF) is a common interstitial lung disease of unknown aetiology, usually occurring between 50-70 years of age. It is a progressive and ultimately fatal disease with a mean survival of less than 3 years from diagnosis. The majority of patients die from respiratory failure and have a high symptom burden. There are no curative treatments and so best supportive care and symptom palliation are mainstays of treatment for all patients. As the disease advances, breathlessness becomes a major determinant of quality of life, and oxygen (O2) desat-uration contributes to exertional intolerance. However, there is limited data on the benefits of O2 use in this patient group and anecdotal evidence suggests some patients are reluctant to instigate it. This can be a barrier to providing high quality supportive care. Given the incidence of IPF of 20-30/100,000 per year, better understanding of patient and carer perceptions of O2 use in this context will have important implications for multidisciplinary practice in Wales in support of a sizable patient population. The purpose of this rapid review is therefore to understand key facilitators and barriers to the use of O2 therapy from the perspective of patients with IPF and their carers

What is the impact and effectiveness of the 7-day CNS service on palliative care patients and their families? A rapid review

Palliative care clinical nurse specialists (CNSs) across care settings work within a multi-professional specialist palliative care service to offer support and symptom control to patients with life-threatening illness, and their families. Traditionally this CNS service had been available during working hours 5 days a week. In 2004, NICE Guidance on supportive and palliative care in cancer recommended the extension of this service to 7 days a week, acknowledging the likely need for ongoing face to face patient reviews across weekends. However, the extent of that need was not defined, nor did it take account of the increasing non-cancer workload of these services. In subsequent years specialist teams across the UK have responded to the guidance by introducing 7 day - 09.00-17.00 - CNS working, acknowledging the significant challenges of addressing uncertain need, scarcity of resource and potential impact on other parts of service delivery. The purpose of this rapid review is to examine how these challenges have been met, and whether there is evidence that particular models of 7 day CNS working best address the specific needs of patients and families within the context of overall care provision at weekends. The review has been requested as part of a local service evaluation to support and inform 7 day CNS working within Wales

Palliative Care Evidence Review Service (PaCERS): a knowledge transfer partnership

The importance of linking evidence into practice and policy is recognised as a key pillar of a prudent approach to healthcare; it is of importance to healthcare professionals and decision-makers across the world in every speciality. However, rapid access to evidence to support service redesign, or to change practice at pace, is challenging. This is particularly so in smaller specialties such as Palliative Care, where pressured multidisciplinary clinicians lack time and skill sets to locate and appraise the literature relevant to a particular area. Therefore, we have initiated the Palliative Care Evidence Review Service (PaCERS), a knowledge transfer partnership through which we have developed a clear methodology to conduct evidence reviews to support professionals and other decision-makers working in palliative care. PaCERS methodology utilises modified systematic review methods as there is no agreed definition or an accepted methodology for conducting rapid reviews. This paper describes the stages involved based on our iterative recent experiences and engagement with stakeholders, who are the potential beneficiaries of the research. Uniquely, we emphasise the process and opportunities of engagement with the clinical workforce and policy-makers throughout the review, from developing and refining the review question at the start through to the importance of demonstrating impact. We are faced with the challenge of the trade-off between the timely transfer of evidence against the risk of impacting on rigour. To address this issue, we try to ensure transparency throughout the review process. Our methodology aligns with key principles of knowledge synthesis in defining a process that is transparent, robust and improving the efficiency and timeliness of the review. Our reviews are clinically or policy driven and, although we use modified systematic review methods, one of the key differences between published review processes and our review process is in our relationship with the requester. This streamlining approach to synthesising evidence in a timely manner helps to inform decisions faced by clinicians and decision-makers in healthcare settings, supporting, at pace, knowledge transfer and mobilisation

What is the impact of reflexology on palliative and cancer patients with constipation? A rapid review.

In the last twenty years, there has been an increase in interest and use of complementary and alternative medicine (CAM). In 2000, the House of Lords Select Committee identified research priorities for CAM, including research into the effectiveness of these therapies and their specific effects and safety.1 Reflexology is one of the most popular complementary therapies.2 It has been defined as a “Chinese and Indian system of diagnosis and treatment dating from 3000 BC …” based on the belief that the whole body is represented on the foot (mostly on the soles of the feet), and that the internal organs can be stimulated by pressing particular areas of the foot (less commonly the hands).3 The role of reflexology in hospice care is common but the evidence for use is frequently anecdotal. Constipation is a common symptom in palliative care patients and and can have significant impact on symptoms and quality of life. It has been suggested that reflexology can be beneficial in the treatment of constipation. Therefore, the rationale for this review is to explore existing evidence on the impact of reflexology on symptoms of constipation on patients quality of life and wellbeing

What are the models and outcomes of Public and Patient Involvement (PPI) in cancer and palliative care research? A rapid review

The improved outcomes obtained in research by using PPI policy have been well recognized in health and social care research in general. Yet, it is not quite evident how different PPI models are applied and translated into practice in cancer and palliative care organizations. There is a need to explore the evidences on which model/ framework/ tools/ guidelines are advocated and followed while implementing PPI policy. It is also important to identify what are the outcomes of using these PPI framework/ tools/ guidelines. This review aims to identify existing models and outcomes of PPI in cancer and palliative care research. The established definition for public involvement in research was used: Research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. (NIHR INVOLVE 2017