Activity Provider-Facilitated Patient and Public Involvement with Care Home Residents

© 2024 The Author(s). This is an open access article distributed under the terms of the Creative Commons Attribution License (CC BY), https://creativecommons.org/licenses/by/4.0/Background In care home research, residents are rarely included in Patient and Public Involvement and Engagement (PPIE) despite their lived experiences of day-to-day care. This paper reports on a novel approach to PPIE, developed in response to Covid-19, and utilised in a large UK-based study focused on care homes. PPIE sessions were facilitated on behalf of the research team by Activity Providers (APs) already working within the care homes. This paper provides an account of how PPIE with care home residents can be achieved. Methods An exploratory design was used to see if it was possible to support “in-house” PPIE, with researchers working at a distance in partnership with care home staff. The National Activity Providers Association (NAPA) recruited five APs working in care homes. A series of optional discussion or activity sessions were developed by the research team in partnership with APs, tailored to reflect the research topics of interest and to make sessions accessible to residents with differing needs. Results APs facilitated four rounds of PPIE with up to 56 residents per topic, including individuals living with cognitive and communication impairments. Topics discussed included residents’ views on data use, measuring quality of life and the prioritisation of care-related data for study collection. Feedback from the residents was observed to have unexpected and positive changes to participating care homes’ practice. APs valued participation and working with researchers. They identified acquisition of new skills and insights into residents’ thoughts and preferences as direct benefits. Challenges included time pressures on APs and managing emotive feedback. APs were able to approach residents at times convenient to them and in ways that best suited their individual needs. PPIE with residents provided different perspectives, particularly with respect to the importance of different types of data, and constructive challenge about some of the research team’s assumptions. Conclusions PPIE with APs as research partners is a promising approach to working in an inclusive and participatory way with care home residents. The voices of older care home residents, including those living with cognitive or communicative impairments, are important for the successful and meaningful completion of research.Peer reviewe

Activity provider-facilitated patient and public involvement with care home residents

Background In care home research, residents are rarely included in patient and public involvement and engagement (PPIE) despite their lived experiences of day-to-day care. This paper reports on a novel approach to PPIE, developed in response to Covid-19, and utilised in a large UK-based study focused on care homes. PPIE sessions were facilitated on behalf of the research team by Activity Providers (APs) already working within the care homes. This paper provides an account of how PPIE with care home residents can be achieved. Methods An exploratory design was used to see if it was possible to support “in-house” PPIE, with researchers working at a distance in partnership with care home staff. The National Activity Providers Association recruited five APs working in care homes. A series of optional discussion or activity sessions were developed by the research team in partnership with APs, tailored to reflect the research topics of interest and to make sessions accessible to residents with differing needs. Results APs facilitated four rounds of PPIE with up to 56 residents per topic, including individuals living with cognitive and communication impairments. Topics discussed included residents’ views on data use, measuring quality of life and the prioritisation of care-related data for study collection. Feedback from the residents was observed to have unexpected and positive changes to participating care homes’ practice. APs valued participation and working with researchers. They identified acquisition of new skills and insights into residents’ thoughts and preferences as direct benefits. Challenges included time pressures on APs and managing emotive feedback. APs were able to approach residents at times convenient to them and in ways that best suited their individual needs. PPIE with residents provided different perspectives, particularly with respect to the importance of different types of data, and constructive challenge about some of the research team’s assumptions. Conclusions PPIE with APs as research partners is a promising approach to working in an inclusive and participatory way with care home residents. The voices of older care home residents, including those living with cognitive or communicative impairments, are important for the successful and meaningful completion of research

Case Reports1. A Late Presentation of Loeys-Dietz Syndrome: Beware of TGFβ Receptor Mutations in Benign Joint Hypermobility

Background: Thoracic aortic aneurysms (TAA) and dissections are not uncommon causes of sudden death in young adults. Loeys-Dietz syndrome (LDS) is a rare, recently described, autosomal dominant, connective tissue disease characterized by aggressive arterial aneurysms, resulting from mutations in the transforming growth factor beta (TGFβ) receptor genes TGFBR1 and TGFBR2. Mean age at death is 26.1 years, most often due to aortic dissection. We report an unusually late presentation of LDS, diagnosed following elective surgery in a female with a long history of joint hypermobility. Methods: A 51-year-old Caucasian lady complained of chest pain and headache following a dural leak from spinal anaesthesia for an elective ankle arthroscopy. CT scan and echocardiography demonstrated a dilated aortic root and significant aortic regurgitation. MRA demonstrated aortic tortuosity, an infrarenal aortic aneurysm and aneurysms in the left renal and right internal mammary arteries. She underwent aortic root repair and aortic valve replacement. She had a background of long-standing joint pains secondary to hypermobility, easy bruising, unusual fracture susceptibility and mild bronchiectasis. She had one healthy child age 32, after which she suffered a uterine prolapse. Examination revealed mild Marfanoid features. Uvula, skin and ophthalmological examination was normal. Results: Fibrillin-1 testing for Marfan syndrome (MFS) was negative. Detection of a c.1270G > C (p.Gly424Arg) TGFBR2 mutation confirmed the diagnosis of LDS. Losartan was started for vascular protection. Conclusions: LDS is a severe inherited vasculopathy that usually presents in childhood. It is characterized by aortic root dilatation and ascending aneurysms. There is a higher risk of aortic dissection compared with MFS. Clinical features overlap with MFS and Ehlers Danlos syndrome Type IV, but differentiating dysmorphogenic features include ocular hypertelorism, bifid uvula and cleft palate. Echocardiography and MRA or CT scanning from head to pelvis is recommended to establish the extent of vascular involvement. Management involves early surgical intervention, including early valve-sparing aortic root replacement, genetic counselling and close monitoring in pregnancy. Despite being caused by loss of function mutations in either TGFβ receptor, paradoxical activation of TGFβ signalling is seen, suggesting that TGFβ antagonism may confer disease modifying effects similar to those observed in MFS. TGFβ antagonism can be achieved with angiotensin antagonists, such as Losartan, which is able to delay aortic aneurysm development in preclinical models and in patients with MFS. Our case emphasizes the importance of timely recognition of vasculopathy syndromes in patients with hypermobility and the need for early surgical intervention. It also highlights their heterogeneity and the potential for late presentation. Disclosures: The authors have declared no conflicts of interes

The design and rationale of the Trail1 trial: A randomized double-blind phase 2 clinical trial of pirfenidone in rheumatoid arthritis-associated interstitial lung disease

Introduction: Rheumatoid arthritis (RA) is the most common of the connective tissue diseases (CTD), affecting up to 0.75% of the United States (U.S.) population with an increasing prevalence. Interstitial lung disease is prevalent and morbid condition in RA (RA-ILD), affecting up to 60% of patients with RA, leading to premature death in 10% and accruing an average of US$170,000 in healthcare costs per patient over a 5-year period. Although there have been significant advances in the management of this joint disease, there are no ongoing randomized clinical trials looking at pharmacologic treatments for RA-ILD, and there currently are no U.S. Food and Drug Administration-approved drugs for RA-ILD. Methods/Design: We describe the Treatment for Rheumatoid Arthritis and Interstitial Lung Disease 1 (TRAIL1) trial, a multicenter randomized, double-blind, placebo-controlled, phase 2 study of the safety, tolerability and efficacy of pirfenidone in patients with RA-ILD. The study will enroll approximately 270 subjects across a network of sites who have RA and ILD as defined by a fibrotic abnormality involving greater than 10% of the lung parenchyma. The primary endpoint of the study is the incidence of the composite endpoint of decline in percent predicted forced vital capacity of 10 or greater or death during the 52-week study period. A number of secondary and exploratory endpoints have been chosen to evaluate the safety and efficacy in different domains. Discussion: The TRAIL1 trial is designed to evaluate the safety and efficacy of pirfenidone in RA-ILD, a disease with significant impact on patients’ quality of life and outcome. In addition to investigating the safety and efficacy of pirfenidone, this trial looks at a number of exploratory endpoints in an effort to better understand the impact of therapy on areas such as changes in quantitative high-resolution computed tomography scores and a patient’s quality of life. Biospecimens will be collected in order to investigate biomarkers that could potentially predict the subtype of disease, its behavior over time, and its response to therapy. Finally, by creating a network of institutions and clinician investigators with an interest in RA-ILD, this trial will pave the way for future studies of investigational agents in an effort to reduce or eliminate the burden of disease for those suffering from RA-ILD. Trial Funding: Genentech, a member of the Roche Group. Trial Registration: Clinicaltrials.gov, identifier NCT02808871

Rituals and behaviours in the operating theatre and preventing infection. Using the evidence and consensus opinion to provide practical advice

There are existing evidence-based procedures and interventions undertaken pre- and peri-operatively to minimise surgical site infection (SSI), e.g. pre-operative surgical prophylaxis and minimising hypothermia. However, there are also many rituals and behaviours that take place in operating theatres (OT), that are derived from tradition, and custom rather than from evidence. To optimise patient care and efficiency in the use of resources, clinical guidelines are needed that are supported by whatever evidence is available. However, where there may be a degree of uncertainty regarding this evidence base, any advice that we or others provide should be characterised by integrity and a degree of humility. </p

Rituals and behaviours in the operating theatre and preventing infection. Using the evidence and consensus opinion to provide practical advice

There are existing evidence-based procedures and interventions undertaken pre- and peri-operatively to minimise surgical site infection (SSI), e.g. pre-operative surgical prophylaxis and minimising hypothermia. However, there are also many rituals and behaviours that take place in operating theatres (OT), that are derived from tradition, and custom rather than from evidence. To optimise patient care and efficiency in the use of resources, clinical guidelines are needed that are supported by whatever evidence is available. However, where there may be a degree of uncertainty regarding this evidence base, any advice that we or others provide should be characterised by integrity and a degree of humility. </p

Rituals and behaviours in the operating theatre - joint guidelines of the Healthcare Infection Society and the European Society of Clinical Microbiology and Infectious Diseases

Prevention of surgical site infection (SSI) remains a main priority in operating theatres. This has previously led to the introduction of practices, often referred to as ‘rituals’ and ‘behaviours’ and sometimes labelled as ‘myths’, that are controversial and frequently disputed. Some of them are not underpinned by sound scientific evidence, but they are established in everyday practice and considered by many as traditional to help ensure discipline and professionalism in the operating theatre. Previous Healthcare Infection Society guidelines were published 20 years ago, and they aimed to debunk some of the practices. Since then, new technologies have emerged, and an update was required. These new updated guidelines, produced in collaboration between the Healthcare Infection Society and the European Society of Clinical Microbiology and Infectious Diseases, used methodology accredited by the National Institute for Health and Care Excellence (NICE) to provide further advice on which practices are unnecessary. The guidelines are intended for an international audience. Specifically, they discuss the current available evidence for different rituals that are commonplace in the operating theatre, and highlight the gaps in knowledge with recommendations for future research. Previous guidelines divided the operating theatre rituals and behaviours into essential, preferable (optional), and those that provide no clear benefit. In the light of new evidence and in line with the new NICE principles for recommendations, these have been updated and are divided into recommendations for use, good practice points, and recommendations against certain practices. These updated guidelines aim to minimize ritualistic behaviour without increasing the risk of SSI. The guidelines do not focus on those key prevention practices that are well researched and shown to be effective in preventing SSI (e.g. preventing hypothermia). These well-researched topics are addressed in other guidelines, and the Working Party has based their guidelines on an assumption that these evidence-based recommendations are followed. </p

Rituals and behaviours in the operating theatre - joint guidelines of the Healthcare Infection Society and the European Society of Clinical Microbiology and Infectious Diseases

Prevention of surgical site infection (SSI) remains a main priority in operating theatres. This has previously led to the introduction of practices, often referred to as ‘rituals’ and ‘behaviours’ and sometimes labelled as ‘myths’, that are controversial and frequently disputed. Some of them are not underpinned by sound scientific evidence, but they are established in everyday practice and considered by many as traditional to help ensure discipline and professionalism in the operating theatre. Previous Healthcare Infection Society guidelines were published 20 years ago, and they aimed to debunk some of the practices. Since then, new technologies have emerged, and an update was required. These new updated guidelines, produced in collaboration between the Healthcare Infection Society and the European Society of Clinical Microbiology and Infectious Diseases, used methodology accredited by the National Institute for Health and Care Excellence (NICE) to provide further advice on which practices are unnecessary. The guidelines are intended for an international audience. Specifically, they discuss the current available evidence for different rituals that are commonplace in the operating theatre, and highlight the gaps in knowledge with recommendations for future research. Previous guidelines divided the operating theatre rituals and behaviours into essential, preferable (optional), and those that provide no clear benefit. In the light of new evidence and in line with the new NICE principles for recommendations, these have been updated and are divided into recommendations for use, good practice points, and recommendations against certain practices. These updated guidelines aim to minimize ritualistic behaviour without increasing the risk of SSI. The guidelines do not focus on those key prevention practices that are well researched and shown to be effective in preventing SSI (e.g. preventing hypothermia). These well-researched topics are addressed in other guidelines, and the Working Party has based their guidelines on an assumption that these evidence-based recommendations are followed. </p