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Ambulatory Care
The Ambulatory Care Division consists of 3 directorates, which are Outpatient, Admitted and Clinical Services
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FIT stratification in the COVID era - Is it safe for rectal bleeding?Aims: Faecal Immunochemical Tests (FIT) are increasingly used for stratification of colorectal cancer risk in symptomatic patients. FIT is not currently recommended for use in patients with rectal bleeding, but recent studies have reported its safe use. We report our experiences of FIT in patients presenting with rectal bleeding during the COVID-19 pandemic. Method(s): Patients referred to NUH NHS Trust with rectal bleeding from 15/04/20-15/08/20 were invited to complete a postal-based FIT (OCSensor). Demographics, symptoms, investigations and results were recorded. Outcomes were retrospectively reviewed using an electronic hospital system. Result(s): 344 patients were invited to participate, with 301 (87.5%) returning FITs in accordance with testing protocol. 36 patients declined to be seen, 4 were considered not fit for investigation, and 4 had incomplete records. 257 patients were included in the final analysis with 10 CRC detected (3.9%). Rectal bleeding (257, 100%) was the most common presenting symptom followed by change in bowel habit (133, 51.8%). 10 CRC were diagnosed (3.9%). 2 CRC were detected with FIT 100 mug Hb / g faeces (8/45, 17.8%). FIT result was significantly associated with CRC diagnosis (p<0.0001). 4 with CRC had anaemia (4/53, 7.5%), 1 had thrombocytosis (1/12, 8.3%). Conclusion(s): FIT missed 20% of CRC in this patient group with the application of a very low threshold (<4 mug Hb / g faeces). Both cancers missed by FIT were detectable on digital rectal examination, emphasising the importance of this examination in primary care.
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Quantitative FIT stratification is superior to NICE referral criteria NG12 in a high-risk colorectal cancer populationBACKGROUND: Guidelines for urgent investigation of colorectal cancer (CRC) are based on age and symptom-based criteria. This study aims to compare the diagnostic value of clinical features and faecal immunochemical test (FIT) results to identify those at a higher risk of CRC, thereby facilitating effective triage of patients., METHODS: We undertook a review of all patients referred for investigation of CRC at our centre between September 2016 and June 2018. Patients were identified using a prospectively recorded local database. We performed a logistic regression analysis of factors associated with a diagnosis of CRC., RESULTS: One-thousand-and-seven-hundred-eighty-four patients with FIT results were included in the study. Change in bowel habit (CIBH) was the most common referring clinical feature (38.3%). Patients diagnosed with CRC were significantly older than those without malignancy (74.0 years vs 68.9 years, p = 0.0007). Male patients were more likely to be diagnosed with CRC than females (6.5% vs 2.5%, Chi-squared 16.93, p = 100 microg Hb/g faeces group (55/181, 30.4%)., CONCLUSION: In a multivariate model, FIT outperforms age, sex and all symptoms prompting referral. FIT has greater stratification value than any referral symptoms. FIT does have value in patients with iron deficiency anaemia. Copyright © 2021. Springer Nature Switzerland AG.
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Faecal immunochemical testing reduces demand and improves yield of Leicester's 2-week pathway for change in bowel habitAim: We look at the effect of introducing the faecal immunochemical test (FIT) in the straight-to-test 2-week pathway for change in bowel habit (CIBH).; Method: The FIT in primary care triages 2-week wait (2WW) colorectal referrals for patients aged 60 years and above for straight-to-test CT colonography (CTC). We compare the impact of the FIT on numbers of 2WW CTCs, in the year before and after FIT, in both colorectal cancer (CRC) detection and cost-effectiveness at both 4 μg Hb/g faeces and 10 μg Hb/g faeces.; Results: At a threshold of 4 μg Hb/g faeces, the positive predictive value of the FIT for diagnosis of CRC is 5.0% with a negative predictive value of 99.8% and a polyp detection rate of 25.5%. The introduction of the FIT resulted in a reduction in the number of CTCs performed through the CIBH pathway from a mean of 143.9 per month prior to the FIT to 66.8 CTCs per month once the FIT was well established. Given a FIT threshold of 10 μg Hb/g the number of CTCs would be predicted to fall by 70.4% to 42.6 CTCs per month resulting in higher CRC and polyp detection rate, and an estimated annual cost saving of £238 258 in our institution.; Conclusion: The FIT use in primary care improves the yield of 2WW referrals for CIBH alone and reduces the burden and cost of investigations to exclude CRC. Improvements may be possible by increasing the cut-off employed, without adversely affecting the risk of missing a cancer.
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Including a general practice endorsement letter with the testing kit in the Bowel Cancer Screening Programme: Results of a cluster randomised trialOBJECTIVES: To evaluate the effect of general practitioner endorsement accompanying the screening kit rather than with the invitation letter on participation in the NHS Bowel Cancer Screening Programme and on the socioeconomic gradient in participation in the Programme., METHODS: The NHS Bowel Cancer Screening Programme in England is delivered via five regional hubs. In early 2016, we carried out a cluster-randomised trial, with hub-day of invitation as the randomisation unit. We randomised 150 hub-days of invitation to the intervention group, GP endorsement on the letter accompanying the guaiac faecal occult blood testing kit (75 hub-days, 197,366 individuals) or control, usual letter (75 hub-days, 197,476 individuals). The endpoint was participation, defined as return of a valid kit within 18 weeks of initial invitation. Because of the cluster randomisation, data were analysed by a hierarchical logistic regression, allowing a random effect for date of invitation. Socioeconomic status was represented by the index of multiple deprivation., RESULTS: Participation was 59.4% in the intervention group and 58.7% in the control group, a significant difference (p = 0.04). There was no heterogeneity of the effect of intervention by index of multiple deprivation. We found that there was some confounding between date and screening episode order (first or subsequent screen). This in turn may have induced confounding with age and slightly diluted the result., CONCLUSIONS: General practitioner endorsement induces a modest increase in participation in bowel cancer screening, but does not affect the socioeconomic gradient. When considering cluster randomisation as a research method, careful scrutiny of potential confounding is indicated in advance if possible and in analysis otherwise.
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Service evaluation of faecal immunochemical testing and anaemia for risk stratification in the 2-week-wait pathway for colorectal cancerBackground: New national guidance on urgent referral for investigation of colorectal cancer included faecal occult blood testing in 2015. A service evaluation of faecal immunochemical testing (FIT) and anaemia as risk stratification tools in symptomatic patients suspected of having CRC was undertaken., Methods: Postal FIT was incorporated into the colorectal cancer 2-week wait (2WW) pathway for all patients without rectal bleeding in 2016. Patients were investigated in the 2WW pathway as normal, and outcomes of investigations were recorded prospectively. Anaemia was defined as a haemoglobin level below 120 g/l in women and 130 g/l in men., Results: FIT kits were sent to 1106 patients, with an 80.9 per cent return rate; 810 patients completed investigations and 40 colorectal cancers were diagnosed (4.9 per cent). FIT results were significantly higher in patients with anaemia (median (i.q.r.) 4.8 (0.8-34.1) versus 1.2 (0-6.4) mug Hb/g faeces in those without anaemia; P < 0.001). Some 60.4 per cent of patients (538 of 891) had a result lower than 4 mug haemoglobin (Hb) per g faeces (limit of detectability), and 69.7 per cent (621 of 891) had less than 10 mug Hb/g faeces. Some 60 per cent of patients with colorectal cancer had a FIT reading of 150 mug Hb/g faeces or more. For five colorectal cancers diagnosed in patients with a FIT value below 10 mug Hb/g faeces, there was either a palpable rectal mass or the patient was anaemic. A FIT result of more than 4 mug Hb/g faeces had 97.5 per cent sensitivity and 64.5 per cent specificity for a diagnosis of colorectal cancer. A FIT result above 4 mug Hb/g faeces and/or anaemia had a 100 per cent sensitivity and 45.3 per cent specificity for colorectal cancer diagnosis., Conclusion: FIT is most useful at the extremes of detectability; strongly positive readings predict high rates of colorectal cancer and other significant pathology, whereas very low readings in the absence of anaemia or a palpable rectal mass identify a group with very low risk. High return rates for FIT within this 2WW pathway indicate its acceptability.
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Faecal immunochemical testing and blood tests for prioritization of urgent colorectal cancer referrals in symptomatic patients: a 2-year evaluationBackground: A novel pathway incorporating faecal immunochemical testing (FIT) for rapid colorectal cancer diagnosis (RCCD) was introduced in 2017. This paper reports on the service evaluation after 2 years of pathway implementation.; Methods: The RCCD protocol was based on FIT, blood results and symptoms to stratify adult patients in primary care. Two-week-wait (2WW) investigation was indicated for patients with rectal bleeding, rectal mass and faecal haemoglobin (fHb) level of 10 µg Hb/g faeces or above or 4 µg Hb/g faeces or more in the presence of anaemia, low ferritin or thrombocytosis, in all other symptom groups. Patients with 100 µg Hb/g faeces or above had expedited investigation . A retrospective audit of colorectal cancer detected between 2017 and 2019 was conducted, fHb thresholds were reviewed and critically assessed for cancer diagnoses.; Results: In 2 years, 14788 FIT tests were dispatched with 13361 (90.4 per cent) completed returns. Overall, fHb was less than 4 µg Hb/g faeces in 9208 results (68.9 per cent), 4-9.9 µg Hb/g in 1583 (11.8 per cent), 10-99.9 µg Hb/g in 1850 (13.8 per cent) and 100 µg Hb/g faeces or above in 720 (5.4 per cent). During follow-up (median 10.4 months), 227 colorectal cancers were diagnosed. The cancer detection rate was 0.1 per cent in patients with fHb below 4 µg Hb/g faeces, 0.6 per cent in those with fHb 4-9.9 µg Hb/g faeces, 3.3 per cent for fHb 10-99.9 µg Hb/g faeces and 20.7 per cent for fHb 100 µg Hb/g faeces or above. The detection rate in the cohort with 10-19.9 µg Hb/g faeces was 1.4 per cent, below the National Institute for Health and Care Excellence threshold for urgent referral. The colorectal cancer rate in patients with fHb below 20 µg Hb/g faeces was less than 0.3 per cent.; Conclusion: Use of FIT to "rule out" urgent referral from primary care misses a small number of cases. The threshold for referral may be adjusted with blood results to improve stratification .
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GP access to FIT increases the proportion of colorectal cancers detected on urgent pathways in symptomatic patients in NottinghamOBJECTIVE: Service evaluation of GP access to Faecal Immunochemical Test (FIT) for colorectal cancer (CRC) detection in Nottinghamshire and use of FIT for "rule out", "rule in" and "first test selection"., DESIGN: Retrospective audit of FIT results, CRC outcomes and resource utilisation before and after introduction of FIT in Primary Care in November 2017. Data from the new pathway up to December 2018 was compared with previous experience., RESULTS: Between November 2017 and December 2018, 6747 GP FIT test requests yielded 5733 FIT results, of which 4082 (71.2%) were =150.0 mug Hb/g faeces. The proportion of "rule out" results =150.0 mug Hb/g faeces. The proportion of "rule out" results =150.0 mug Hb/g faeces was significantly lower (4.1% vs 8.1%, Chi squared 27.3,P < 0.0001). There was a 33% rise in urgent referrals across Nottingham overall during the evaluation period. 2 CRC diagnoses were made in 4082 patients who had FIT<4.0 mug Hb/g faeces. 58.4% of new CRC diagnoses associated with a positive FIT were early stage cancers (Stage I and II). The proportion of all CRC diagnoses that follow an urgent referral s rose after introduction of FIT., CONCLUSIONS: FIT allows GP's to select a more appropriate cohort for urgent investigation without a large number of missed diagnoses. FIT appears to promise a "stage migration" effect which may ultimately improve CRC outcomes.
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Choice of faecal immunochemical test matters: comparison of OC-Sensor and HM-JACKarc, in the assessment of patients at high risk of colorectal cancerOBJECTIVES: Currently, NICE recommends the use of faecal immunochemical test (FIT) at faecal haemoglobin concentrations (f-Hb) of 10 mug Hb/g faeces to stratify for colorectal cancer (CRC) risk in symptomatic populations. This f-Hb cut-off is advised across all analysers, despite the fact that a direct comparison of analyser performance, in a clinical setting, has not been performed., METHODS: Two specimen collection devices (OC-Sensor, OC-S; HM-JACKarc, HM-J) were sent to 914 consecutive individuals referred for follow up due to their increased risk of CRC. Agreement of f-Hb around cut-offs of 4, 10 and 150 microg Hb/g faeces and CRC detection rates were assessed. Two OC-S devices were sent to a further 114 individuals, for within test comparisons., RESULTS: A total of 732 (80.1%) individuals correctly completed and returned two different FIT devices, with 38 (5.2%) CRCs detected. Median f-Hb for individuals diagnosed with and without CRC were 258.5 and 1.8 microg Hb/g faeces for OC-S and 318.1 and 1.0 microg Hb/g faeces for HM-J respectively. Correlation of f-Hb results between OC-S/HM-J over the full range was rho=0.74, p<0.001. Using a f-Hb of 4 microg Hb/g faeces for both tests found an agreement of 88.1%, at 10 microg Hb/g faeces 91.7% and at 150 microg Hb/g faeces 96.3%. A total of 114 individuals completed and returned two OC-S devices; correlation across the full range was rho=0.98, p<0.001., CONCLUSIONS: We found large variations in f-Hb when different FIT devices were used, but a smaller variation when the same FIT device was used. Our data suggest that analyser-specific f-Hb cut-offs are applied with regard to clinical decision making, especially at lower f-Hb. Copyright © 2020 Walter de Gruyter GmbH, Berlin/Boston.
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Early clinical outcomes of a rapid colorectal cancer diagnosis pathway using faecal immunochemical testing in NottinghamAIM: We introduced primary care access to faecal immunochemical testing (FIT) as a stratification tool for symptomatic patients considered to be at risk of colorectal cancer (CRC) prior to urgent referral. We aimed to evaluate clinical and pathway outcomes during the first 6 months of this novel approach., METHOD: FIT was recommended for all patients who consulted their general practitioner with lower gastrointestinal symptoms other than rectal bleeding and rectal mass. We undertook a retrospective audit of the results of FIT, related clinical outcomes and resource utilization on prospectively logged cases between November 2017 and May 2018., RESULTS: Of the 1862 FIT kits dispatched by post 91.4% were returned, with a median return time of 7 days (range 2-110 days); however, 1.3% of returned kits could not be analysed. FIT results >= 150.0 mug haemoglobin (Hb)/g faeces identified patients with a significantly higher risk of CRC (30.9% vs 1.4%, chi-square 167.1, P = 10.0 mug Hb/g faeces identified patients with significantly higher risk of significant noncancer bowel pathology (24.1% vs 4.9%, chi-square 73.6, P < 0.0001) and FIT results < 4.0 mug Hb/g faeces identified a group more likely to have non-CRC pathology (5.1% vs 2.4%, chi-square 3.9, P < 0.05). The CRC detection rate in 531 patients investigated after a FIT result of < 4.0 mug Hb/g faeces was 0.2%. In 899 investigated patients, a FIT result with a threshold of 4.0 mug Hb/g faeces had sensitivity 97.2% (85.5-99.9% CI), specificity 61.4% (58.1-64.7% CI), negative predictive value 99.8% (98.7-100.0% CI) and positive predictive value 9.5% (8.7-10.4% CI)., CONCLUSION: A symptomatic pathway incorporating FIT is feasible and appears more clinically effective than pathways based on age and symptoms alone. Copyright Colorectal Disease © 2019 The Association of Coloproctology of Great Britain and Ireland.
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Paediatric family activated rapid response interventions; qualitative systematic reviewBackground Failure to recognise deterioration early which results in patient death, is considered failure to rescue and it is identified as one of the leading causes of harm to patients. It is recognised that patients and their families can often recognise changes within the child’s condition before healthcare professionals. To mitigate the risk of failure to rescue and promote early intervention, family-activated rapid response systems are becoming widely acknowledged and accepted as part of family integrated care. Objective To identify current family-activated rapid response interventions in hospitalised paediatric patients and understand mechanisms by which family activation works. Methods A narrative systematic review of published studies was conducted. Seven online databases; AMED, CINHAL, EMBASE, EMCARE, HMIC, JBI, and Medline were searched for potentially relevant papers. The critical appraisal skills programme tool was used to assess methodological rigor and validity of included studies. Results Six studies met the predefined inclusion criteria. Five telephone family activation interventions were identified; Call for Help, medical emergency-teams, Condition HELP, rapid response teams, and family initiated rapid response. Principles underpinning all interventions were founded on a principal of granting families access to a process to escalate concerns to hospital emergency teams. Identified interventions outcomes and mechanisms include; patient safety, empowerment of families, partnership working/ family centred care, effective communication and better patient outcomes. Interventions lacked multi-lingual options. Conclusion Family activation rapid response system are fundamental to family integrated care and enhancing patient safety. Underlying principles and concepts in delivering interventions are transferable across global healthcare system.
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Perspectives on autonomy and advance decision-making: A qualitative study based on older people living with frailty and their carersThe Mental Capacity Act 2005, covering England and Wales, sets out formal tools to extend autonomy past the onset of incapacity that protect an individual's right to retain autonomy in decision-making. Despite policy drivers who encourage healthcare professionals to support advance decision-making for future care, very few individuals living with frailty engage in doing so. In this article, we interrogate these issues using data from a qualitative study of older people living with frailty, which engages with how those living and coping with varying degrees of frailty experience their situation day to day and their perceptions of planning for incapacity and decision-making. After critically evaluating the viewpoints of older people living with frailty and their carers, we assess the significance of their perceptions for the contemporary debates surrounding autonomy and how they align with the policy perspectives and the clinical practice of advance care planning.Copyright © The Author(s) 2020.
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Using patient and public involvement to identify priorities for research in long-term conditions managementBACKGROUND: Patient and public involvement (PPI) is increasingly important in healthcare research. Although this is accepted at the level of individual research studies, it has been less well used in scoping fundamental research priorities. It has been suggested that patients with long-term conditions (LTCs) are well placed to influence research priorities in this area due to their accumulated experience of illness over time. AIMS: To obtain PPI in research-priority setting for a group with a special interest in LTC research. DISCUSSION: PPI representatives provided views on issues they thought required further research. The facilitators were able to move from the specifics of these ideas to identify cross-cutting research priorities. CONCLUSION(S): It was possible to determine broad research themes despite PPI representatives initially articulating identified issues in very specific terms. Facilitating a better understanding of the research process for PPI representatives would allow their contribution to be more effective. Implications for practice PPI should be considered at the beginning of the process when broad research priorities are considered and before the study design. This is particularly so for broad, non-specialty-focused research themes such as LTCs. More work is required to ensure the views of harder-to-reach groups are included in this type of PPI.
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Concerns, coping and the electronic holistic needs assessment: experiences of UK breast cancer survivorsBACKGROUND: Physical and psychological concerns associated with a breast cancer diagnosis continue long after treatment. Macmillan Cancer Support developed an electronic Holistic Needs Assessment (eHNA) to help identify these concerns and allow a healthcare professional to address these as part of The Recovery Package., AIMS: The study aim was to understand the women's experiences of having breast cancer, and of completing Macmillan's eHNA as part of their care., METHODS: A qualitative approach was adopted. Semi-structured interviews were undertaken with 15 women, 12-18 months following surgical treatment for invasive breast cancer. Thematic analysis identified key themes., RESULTS: Four main themes were identified in relation to experiences of the eHNA, experiences of breast cancer, coping with breast cancer and the psychological effects of surviving. Perceptions towards the eHNA varied; some women viewed the eHNA as a research tool for hospital use rather than a beneficial aspect of their care. Several participants felt unable to raise their psychological concerns on the eHNA., CONCLUSIONS: Although experiences differ, psychological issues remain a key factor for women with breast cancer, lasting long after treatment. The eHNA is not currently used to its potential or recognised by women as a tool to support their care. Further research is needed into how the eHNA can be used effectively to capture psychological concerns and determine best approaches to implementation of the tool to support individualised care. Copyright © The Author(s) 2019.
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Women's information needs, decision-making and experiences of membrane sweeping to promote spontaneous labourOBJECTIVE: To explore and synthesise evidence of women's information needs, decision-making and experiences of membrane sweeping to promote spontaneous labour. DESIGN: A systematic review following the Joanna Briggs Institute (JBI) meta-aggregative approach to qualitative evidence synthesis. Relevant databases were searched for literature published in English between 2000-19. Study quality was assessed using the JBI quality assessment tool for qualitative studies. SETTING: Qualitative research conducted in OECD countries describing women's information needs, decision-making and/or experiences of membrane sweeping to promote spontaneous labour. FINDINGS: One article met the criteria for inclusion. This article describes the experience of a membrane sweep given without consent. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: There is a lack of evidence around women's information needs, decision-making and experiences of membrane sweeping. This is concerning, especially in the context of rising rates of formal induction of labour. Further research is needed to investigate how women are being offered membrane sweeping and what information women need to make informed choices about membrane sweeping to promote spontaneous labour.Copyright © 2019. Published by Elsevier Ltd.
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How do people in prison feel about opt-out hepatitis C virus testing?The prison population is central to the campaign to eliminate hepatitis C virus as a public health threat. In the UK, this has led to the introduction of a national 'opt-out' policy, requiring people in prison to be tested for HCV unless they decline, with a target to test 75% of those admitted. However, in a representative prison estate in the East Midlands of England (20,000 prison entrants per annum) testing rates were only 13.4%. This qualitative study explains why the rates of test uptake are so far short of target. This qualitative study examines the experiences of 45 people in prison about hepatitis C virus testing in an English category C (low security) prison. The data collection method was semi-structured interviews. The data were coded and analysed according to the research questions, and interpretation of the data was aided by the use of a thematic network approach. The themes Fear, Insufficient Knowledge, Stigma, Privacy, Choice and Prison Life emerged as the principal barriers to test uptake. Test Uptake Facilitators that promoted testing were identified by participants and benefits presented of prison health care being a Health Farm. In order to increase hepatitis C virus test uptake, significant changes and flexibility in the timing, location, and staff deployed to test are required. Providing information to people in prison about hepatitis C virus transmission and treatment may reduce fears and enable the test uptake target to be met and sustained. Copyright © 2020 John Wiley & Sons Ltd.
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Using dried blood spot testing for diagnosing viral hepatitisThe target set by the World Health Organization to eliminate viral hepatitis as a public health problem by 2030 first requires methods of testing for hepatitis B and C virus that are acceptable to diverse populations. One such test is the dried blood spot sample method. This article explains what a dried blood spot sample is, how it is collected, and how it can help increase the viral hepatitis test uptake in prisons, drug and alcohol services, and other populations at risk of hepatitis B or C infection.
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Research round-upAbstract: Kathryn Jack, PhD research fellow at the University of Nottingham and specialist nurse at Nottingham University Hospitals NHS Trust, provides a overview of recently published, liver-related nursing and health articles
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Hepatitis C virus infection risk factors and test uptake in an English prisonBackground: People in prison are a key demographic in the drive to eliminate hepatitis C virus (HCV). There is insufficient knowledge about risk factors for HCV among the prison population, which may partially explain low test uptake. Aim(s): This study aimed to understand the HCV risk factors present and HCV test uptake in an English prison. Method(s): Men in prison were surveyed. The questions included whether they had been tested in current sentence, reasons for not being tested and risk factors for HCV. Finding(s): Of 109 respondents, 71% had not been tested in their current prison, 45% had not tested in their current sentence and 35% reported ever injecting drugs. Additional risk factors for hepatitis C included: sharing prison hair clippers (76%) and fighting in prison (44%). Conclusion(s): Not all people in prison with risk factors for HCV were tested. The role of intra-prison risks, such as fighting and sharing hair clippers, requires furtherexploration. Copyright © 2020 MA Healthcare Ltd. All rights reserved.
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The implications of COVID-19 for gastroenterology and hepatology: A state-of-the-art reviewCOVID-19 has erupted as a global public health emergency, and data are emerging on the wider impacts of this viral respiratory infection. This state-of-the-art review includes ten publications from China about the impact of COVID-19 on gastrointestinal symptoms and liver disease. In addition to respiratory symptoms, some patients both present with and subsequently develop gastrointestinal symptoms, such as nausea or diarrhoea. COVID-19 can also be found in faeces, sometimes lasting for several days following a negative oropharyngeal test result. Abnormal serum liver function tests have been recorded, but these may be due to a deterioration of previously known chronic liver disease, ischaemia or hypoxia due to critical illness, or a drug-induced hepatotoxicity. Many existing care pathways for people with chronic gastrointestinal or liver disease have been abruptly halted in order to redirect staff and facilities to people acutely ill with COVID-19 and this may lead to an increase in morbidity and mortality in these cohorts. Copyright © 2020 MA Healthcare Ltd. All rights reserved.
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Paediatric intensive care follow-up provision in the United Kingdom and Republic of IrelandThe objective of this study was to examine the characteristic, content, and role of Paediatric Intensive Care Units (PICUs) in the provision of follow-up for children and their families' post-intensive care discharge in the United Kingdom (UK) and Republic of Ireland (RoI). The study followed a descriptive self-reported, web-based survey design. "In-hospital PICU follow-up" was defined as follow-up delivered by the PICU team following PICU discharge but before hospital discharge and "post-discharge PICU follow-up" was defined as follow-up delivered by the PICU team following hospital discharge. The survey was administered to all 28 PICUs in the UK and RoI. Paediatric intensive care medical directors or delegated individuals participated. Data were collected between September 2017 and January 2018 with a response rate of 79% (n = 22/28). Twelve units provided either in-hospital and/or post-discharge PICU follow-up. Ten (45%) PICUs reported providing in-hospital follow-up, with half (n = 5) using an eligibility criteria for in-hospital follow-up, which related to disease groups. The most frequently reported form of in-hospital PICU follow-up consisted of face-to-face patient consultation (n = 8) by a PICU doctor (n = 5) and/or nurse (n = 4). The time at which initial contact was made was usually not predetermined (n = 4) and the assessment of care needs included are tracheostomy care (n = 4), respiratory care (n = 4), and sedative medication weaning plan (n = 5). Four PICUs reported to provide post-discharge follow-up. This involved telephone (n = 2), follow-up clinic consultations (n = 1) or home visits (n = 1), provided predominantly by PICU doctors (n = 2), with their activity directed by patient needs (n = 3). Despite increasing evidence to suggest PICU survivors and their families experience negative sequalae post-PICU discharge, less than half of PICUs surveyed provide in-hospital follow-up and only a minority provide post-discharge follow-up. There is variation in the delivery, content, and format of in-hospital and post-discharge PICU follow-up in the UK and RoI. Copyright © 2020 British Association of Critical Care Nurses.
