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Eye donation in hospice and hospital palliative care settings: perceptions, practice, and service development needs – findings from a national survey

ObjectivesNew routes for supply of eye tissue are needed in the UK to support transplant surgery and medical research. Hospice care (HC) and Hospital-based Palliative care (HPC) services represent potential supply routes. This paper reports findings from the survey arm of the Eye Donation from Palliative and Hospice Care–Investigating potential, practice preference and perceptions study (EDiPPPP), objectives of which were to: i) Investigate existing practice in relation to eye donation across HC and HPC settings; ii) identify perceptions of HCPs toward embedding eye donation into routine end of life care planning; iii) investigate the informational, training, or support needs of clinicians regarding eye donation.DesignOnline survey of UK-based HC and HPC clinicians, distributed through professional organisations (Association of Palliative Medicine (UK); Hospice UK).ParticipantsOne hundred fifty-six participants completed (63% HC; 37% HPC—8% response rate, of n = 1894 approached).ResultsMajority of participants (63%, n = 99) supported raising eye donation (ED) with patients and families and agreed that ED should be discussed routinely with eligible patients. However, 72%, (n = 95) indicated that staff within their clinical setting did not routinely discuss the option of ED in end-of-life care planning conversations with the majority of participants reporting that the option of ED was not ‘routinely discussed in multi-disciplinary team or other meetings.ConclusionsDespite significant support, ED is not part of routine practice. Attention to barriers to embedding ED and reducing knowledge deficits are urgently needed to increase the supply of eye tissue for use in transplant operations.

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Eye donation from palliative and hospice care contexts: the EDiPPPP mixed-methods study.

Over 2 million people in the United Kingdom are living with sight loss with costs to the United Kingdom economy reported as £4.34 billion annually. Conditions that lead to sight loss and impaired vision can be treated if eye tissue is available for corneal transplantation, reconstructive surgery and research into eye diseases. Supply of eye tissue (only available via eye donation) is currently insufficient to meet demand; therefore, new routes are needed. Hospice and hospital-based Palliative Care Services have been reported as potential donation sources of this tissue. To: (1) scope the size and clinical characteristics of the potential eye donation population from research sites; (2) map the donation climate of each research site; (3) identify factors that enable or challenge service providers to consider the option of eye donation from a local and national perspective; (4) identify service users' views regarding the option of eye donation and the propriety of discussing eye donation; and (5) develop and pilot an empirically based intervention designed to change behaviours in relation to eye donation. A 36-month mixed-methods, multicentre study undertaking three work packages. Three hospice care and three hospital-based palliative care services situated in the North, Midlands and the South of England (one service of each type per region). Work package 1 - 105 service providers. Work package 2 - 62 service users, and 156 service providers in the national survey. Work package 3 - 21 expert consultees (patient and public involvement, cross discipline). Scoping review, retrospective note review, qualitative interviews/focus groups, participant observation, secondary analysis of primary data, national survey, transparent expert consultation. Potential: The retrospective notes review demonstrated that of 1199 deceased patients' notes, 553 (46%) patients met the criteria for eye donation (56%, n = 337 in hospice care service settings and 36%, n = 216 in hospital palliative care service). Practice: Less than 4% of all cases agreed as eligible for donation had been approached or referred for eye donation. Eye donation is not currently an embedded practice at local and national levels. Perceptions: Service providers were motivated to discuss eye donation but lacked opportunity and capability. Service users were willing and able to hold conversations about eye donation but were not aware of the option and had not had the option discussed with them. Preferences: Service users wanted to be offered the option of eye donation, and service providers wanted bespoke education and training related to eye donation. Evaluation of the developed intervention STEPS - Support Toolkit for Eye donation in Palliative care Settings will follow implementation of the full intervention (expected to begin in October 2022). Due to the significant impact of the COVID-19 pandemic on clinical sites, partner organisations and national service providers, only two elements of the developed intervention have been pilot tested for proof of concept and the response rate to the national survey was low (8%). Significant potential exists for eye donation from hospice care and hospital palliative care services; however, individual and organisational behaviour as well as information system-based changes are needed to maximise this potential. Evaluation of the STEPS - Support Toolkit for Eye donation in Palliative care Settings; Research exploring the wider public knowledge and views regarding eye donation; research exploring the use of language by National Health Service Blood and Transplant-Tissue and Eye Services in their public-facing infographics, communications and campaigns (specifically the use of the term eye donation). This trial is registered as ISRCTN14243635: Eye donation from palliative care and hospice care settings. This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (17/49/42) and will be published in full in Health and Social Care Delivery Research; Vol. 11, No. 20. See the NIHR Journals Library website for further project information.

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Multidisciplinary Management of Phyllodes Tumours and Breast Sarcoma: A Cross-sectional Survey of Clinical Practice across the UK and Ireland

AimsPhyllodes tumours and breast sarcomas are uncommon tumours and their rarity poses significant challenges in diagnosis and management. This cross-sectional study was conducted to evaluate the multidisciplinary clinical practice for these tumours across the UK and Ireland, with the aim of identifying gaps in knowledge and providing direction for establishing national guidelines. Materials and methodsAn international survey was adapted and circulated to breast and/or sarcoma surgeons and oncologists in the UK and Ireland through national organisations. Multidisciplinary team (MDT) responses were analysed anonymously. ResultsTwenty-eight MDTs participated in this study, predominately from high-volume units (85.5%). Although only 43% of the surveyed units were part of a trust that holds a sarcoma MDT, 68% of units managed malignant phyllodes and angiosarcoma, whereas 64.5% managed soft-tissue sarcoma of the breast. Across all subtypes, axillary surgery was recommended by 14–21% of the MDTs and the most recommended resection margins for breast surgery were ‘no tumour on ink’ in benign phyllodes (39%) and 10 mm in the remaining subtypes (25–29%). Immediate breast reconstruction was supported by 11–18% of MDTs for breast sarcoma subtypes, whereas 36% and 32% advocated this approach in benign and borderline phyllodes tumours, respectively. Adjuvant radiotherapy and chemotherapy were recommended by up to 29% and 11% of the MDTs, respectively. ConclusionThe results of this study demonstrate a wide variation in clinical practice across the surveyed MDTs. As only 28 MDTs participated in our study, with under-representation from low-volume units, our results might be an underestimation of the variability in practice across the UK and Ireland. This multi-institutional study sheds light on controversial aspects in the management of phyllodes tumours and breast sarcoma, identifies the need for national guidelines to inform best practice, and calls for the centralisation of the management of breast sarcoma within specialist centres.

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Long-Term Surgical Outcomes and Pathological Analysis of Proctectomy Specimens after Subtotal Colectomy for Ulcerative Colitis: A Retrospective Cohort Study from a Tertiary Centre.

Background: Reconstruction techniques after subtotal colectomy (STC) and end ileostomy for ulcerative colitis (UC), include ileal pouch-anal anastomosis (IPAA), ileorectal anastomosis (IRA) and continent ileostomy. Aim: To assess surgical strategies and outcomes after subtotal colectomy for UC by calculating the proportions of patients who had further surgery 10 years post-STC and those who did not undergo surgery but who were under surveillance, and histological analysis of pathology specimens from STC and proctectomy. Methods: Patients who had STC for UC from 2002 to 2018 were identified. Variables of interest were extracted from electronic records. Survival analysis on reconstruction surgery was performed using Kaplan-Meier curves. Curves were censored for loss from follow-up and death. Subtotal colectomy and proctectomy specimens were assessed by a pathologist for acute inflammation at the distal resection margin and within the resected bowel, and for dysplasia or cancer. Results: One hundred and ninety-two patients were included. Eighty-nine (46.3%) underwent proctectomy: eight had panproctocolectomy; thirty had completion proctectomy and the remaining fifty-one of the eighty-nine patients (27%) had IPAA. One patient who did not undergo a proctectomy had an ileorectal anastomosis. Sixty-one (69%) proctectomy specimens had active inflammation, with 29 (48%) including the resection margins. Of the 103 patients who did not have completion surgery, 72 (69%) were under surveillance as of August 2021. No patients in this non-operative group had developed cancer of the residual rectum at follow up. Conclusions: At 10 years after STC for UC, eighty-nine (46.4%) patients had proctectomy, of which fifty-two had IPAA (27%). However, no inflammation was found in the proctectomy specimen in one third of these patients. Therefore, it is possible that IRA may still have a role in the occasional patient with UC.

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312 First Experience in Laparoscopic Surgery in Low- and Middle-Income Countries: A Systematic Review

Abstract Aim This study aims to report the challenges and benefits of introducing laparoscopic surgery in low-and-middle-income countries (LMIC) as well as to identify solutions to these challenges for countries with limited finances and resources. Method MEDLINE, EMBASE and COCHRANE databases were searched for studies reporting first experience in laparoscopic surgery in LMIC. Included studies were published after 1996 with full text available in English. Exclusion criteria were studies considering only open surgery, ENT, endoscopy, arthroscopy, hysteroscopy, cystoscopy, transplant, or bariatric surgery. Results Ten studies from eight LMIC were eligible for inclusion in the final analysis, totalling 2640 patients. Most reported challenges were related to costs, including affordability of equipment and training programmes, and equipment problems such as faulty equipment and access to surgical kits. Training-related challenges were reliance on foreign trainers and lack of locally trained surgeons and theatre staff. The benefits of introducing laparoscopic surgery were economic and clinical, including reduced hospital stay, complications and morbidity/mortality. The introduction of laparoscopic surgery also provided training opportunities for junior doctors. Conclusions Despite initial challenges, many studies described the benefits of introducing laparoscopic surgery. Centres proposed practical solutions to these challenges to ensure the sustainability of laparoscopic surgery in LMIC.

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691 Gallbladder Polyp Surveillance Audit

Abstract Background Gallbladder polyps pose a clinical dilemma in surveillance owing to being a very common US findings yet gallbladder malignancy being a infrequent diagnosis. The joint guidelines of ESGAR, EASES, EFISDS and ESGE 6, 12 and 24 monthly follow up scans for 6-9 mm sized polyps or <5 mm polyps with risk factors for malignancy. Cholecystectomy is recommended in polyps >10mm. UK hospitals follow local guidelines, which for our trust is 12 and 24 monthly follow up scans. We investigated the surveillance and management of Gallbladder polyps and audited the practice in our DGH. Method We collected and analysed retrospective data of US-diagnosed GB polyp cases from May2010 to September2022. US-diagnosed GB Polyp patients above the age of 18 were included. We excluded cases of CT or MRI diagnosed and/or followed up cases. Results A total of 212 patietns were selected. Polyp sizewise, 118(52%) were<5mm, 12(5.3%) were>9mm. 82(36.6%) 6-9 mm polyps, 62(75%) were followed up. Mean time and median time to obtain a second scan was 472days 556 days. Of these, 14 had an increase in size of polyps, whilst 3 with increase>2mm. 17 patients with GB polyp had Cholecystectomy, 1(one) had a diagnosis of malignancy. Conclusions We demonstrated that the correct modality of scan was chosen for follow up. However, the timing of the follow up was not within the recommended guidelines. Further teaching and evaluation of practice is recommended. A case can be made into a unified UK guideline.

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