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BackgroundIn 2012 the Swedish national guidelines for osteoarthritis (OA) were published. The guidelines implicit that all patients with OA should obtain information and supervised exercise as first-line intervention and that OA is a clinical, not radiological diagnosis. The Swedish OA registry contains data which measure compliance to the guidelines since 2008 [2].ObjectivesTo describe the trends over time from 2008 to 2021 for patients who have received first-line interventions for hip and knee OA in Sweden and adherence of the healthcare staff to the national guidelines.MethodsDescriptive registry-based study including patients with hip or knee OA who participated in first-line interventions including education and exercise. Data were extracted from the Swedish OA registry between January 1st, 2008, and December 31, 2021. The registry contains patient-reported outcomes and physiotherapist-reported outcomes. In this study the following physiotherapist-reported outcomes were described over time: radiological examination before first-line intervention, if the first-line intervention was given the first time the patient seek health care caused of OA, which explanation patients had been given about their disease, intake of painkillers before the start of first-line intervention and the percent who got supervised exercise >10 times according to the guidelines of OA in Sweden. The following patient-reported outcomes were described over time: mean BMI at the first visit, and mean age at the first visit. To be included in the study, participants had to meet the following criteria: i) clinical diagnosis of OA, with hip or knee OA as the most symptomatic joint, ii) provided 3-month follow-up.ResultsA total of 175 764 participants with hip or knee OA were included in the study.The trends from 2008-2021 showed that the proportion of patients who had a radiological examination before entering the first-line intervention decreased from 97 % to 65 % in men and from 95% to 62 % in women. The proportion of patients who get assess to first-line intervention the first time they seek for their symptoms increased from 4 % to 10 % both in men and women. People that get the correct information about OA increased from 15% to 40 %, and patients that get the explanation that OA was a tear and wear disease decreased from 30 % to 5%. The mean BMI (28) is unchanged over time. The mean age increased from 64 years to 67 years between 2008-2020 but decreased during the covid-19 pandemic to 64 years. The percentage that was given supervised exercise more than 10 times was constant between 2012-2020 at 30 % but decreased during the covid-19 pandemic to 20%.ConclusionThe results implicit that the implementation of a supported OA self-management program in Sweden has been successful and changed the care given to patients with OA in Sweden. However, the national guidelines for OA, have still not been fully implemented. We need to keep implementing the guidelines so all patients with OA get the first-line intervention at the right time.References[1]Anon. (2012). Nationella riktlinjer för rörelseorganens sjukdomar 2012 - stöd för styrning och ledning. Socialstyrelsen.[2]Thorstensson CA, Garellick G, Rystedt H, Dahlberg LE. Better Management of Patients with Osteoarthritis: Development and Nationwide Implementation of an Evidence-Based Supported Osteoarthritis Self-Management Programme. Musculoskeletal Care. 2015 Jun;13(2):67-75. doi: 10.1002/msc.1085. Epub 2014 Oct 24. PMID: 25345913.Acknowledgements:NIL.Disclosure of InterestsNone Declared.
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NHS England Genomics introduced whole genome sequencing (WGS) with standard-of- care (SoC) genetic testing for haemato-oncology patients who meet eligibility criteria, including patients with acute leukaemia across all ages, and exhausted SoC testing. Alongside, the role of germline mutations in haematological cancers is becoming increasingly recognised. DNA samples are required from the malignant cells (somatic sample) via a bone marrow aspirate, and from non-malignant cells (germline sample) for comparator analysis. Skin biopsy is considered the gold-standard tissue to provide a source of fibroblast DNA for germline analysis. Performing skin punch biopsies is not within the traditional skillset for haematology teams and upskilling is necessary to deliver WGS/germline testing safely, independently and sustainably. A teaching programme was designed and piloted by the dermatology and haematology teams in Sheffield and delivered throughout the NHS trusts in North East & Yorkshire Genomic Laboratory Hub. The training programme consisted of a 90-min session, slides, video and practical biopsy on pork belly or synthetic skin, designed to teach up to six students at one time. To disseminate best practice, the standard operating procedure and patient information used routinely in Sheffield were shared, to be adapted for local service delivery. From January 2021 to December 2022, 136 haematology staff from 11 hospitals, including 34 consultants, 41 registrars, 34 nurses and 8 physician associates, across the NEY GLH region completed the skin biopsy training programme. Feedback from the course was outstanding, with consistently high scores in all categories. Practical components of the course were especially valued;98.6% (71/72) trainees scored the practical element of the programme a top score of 5 out of 5, highlighting that despite the challenges of delivering face-to- face teaching due to COVID-19, teaching of practical skills was highly valued;training in this way could not have been replicated virtually. Costs of the programme have been approximately 16 000, including consultant input and teaching/educational materials. Recent support has been provided by a separately funded Genomic Nurse Practitioner (GNP), with succession planning for the GNP to take over leadership from the consultant dermatologist. Plans are in place to use the remaining budget to disseminate the programme nationally. Our training programme has shown that skin biopsy can be formally embedded into training for haematology consultants, trainees, nursing team, and physician associates. Delivery of training can be effective and affordable across regional GLHs with appropriate leadership and inter-speciality coordination, and ultimately sustainable with specialist nursing staff, including GNPs.
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BackgroundSubcutaneous self-injection of methotrexate (SC MTX) is used for the treatment of several inflammatory diseases. All newly initiated patients should be educated and trained in the proper injection technique by their healthcare provider (HCP), with the first injection performed under medical supervision. This training has typically been conducted during face-to-face consultations, however since the start of the COVID-19 pandemic it has been necessary to conduct training remotely due to the cancellation of clinics.ObjectivesTo understand patient-reported experiences and satisfaction with remote SC MTX self-injection training.MethodsA cross-sectional electronic survey was administered between 11 October 2022 and 30 November 2022 to patients at Southern Health and Social Care Trust who had recently been trained via telephone or video conference [VC] on how to self-inject methotrexate using a pre-filled, auto-injector pen. Patients were aged ≥18 with a range of arthritis types, including rheumatoid, psoriatic, polyarticular juvenile idiopathic and chronic reactive inflammatory arthritis. Remote training was delivered by the patient's nurse as per routine practice (independently of this survey). Patients were sent a patient information pack (PIP) prior to the training consultation. During the training, the nurse discussed the process of injecting with the auto-injector pen before virtually supervising the first injection.The survey consisted of 14 questions;topics included experiences and satisfaction with preparation for the HCP appointment, the training consultation itself and post-training experiences and preferences. The responses were analysed descriptively on an item-by-item basis.ResultsIn total 73 patients completed the survey;77% (n=56/73) were female, and 96% (n=70/73) had no prior experience with a SC MTX auto-injector pen. The training was completed by telephone for 92% (n=67/73) of patients and by VC for 8% (n=6/73). 99% (n=72/73) received a PIP in advance of their training consultation and 92% (n=67/73) received this by post. 67% (n=49/73) of patients strongly agreed and 26% (n=19/73) agreed that they felt prepared for the training after receiving the PIP;78% (n=57/73) of patients strongly agreed and 22% (n=16/73) agreed that it was easy to read and understand, whilst 52% (n=38/73) strongly agreed and 32% (n=23/73) agreed that the PIP was helpful and did not require additional instructions before the appointment. 84% (n=61/73) took 15 minutes or less to complete the training with their HCP. None of the participants felt confused or did not understand the training instructions from their HCP, 78% (n=57/73) strongly agreed and 19% (n=14/73) agreed that the remote training was helpful and made them feel more confident to use the injector pen on their own and 97% (n=71/73) did not need to contact their HCP for more training or advice following their appointment. When asked about the main advantages of remote training, 32% (n=23/73) agreed it was more convenient, 25% (n=18/73) agreed that it was time saving and 30% (n=22/73) agreed that not having to attend the hospital was beneficial. 85% (n=62/73) strongly agreed and 14% (n=10/73) agreed that they were satisfied with the remote training provided and 82% (n=60/73) strongly agreed and 18% (n=13/73) agreed that they would recommend the remote training to another patient.ConclusionThese findings provide new insight into patients' experiences with self-injection training when delivered remotely by their HCP. The patient information pack and training consultation were well received as most patients found it helpful, convenient and time saving.References:NIL.AcknowledgementsThis survey was funded by Nordic Pharma. Medical writing support was provided by Angie Bonsu of Open Health and funded by Nordic Pharma.Disclosure of InterestsShannon McCourt Grant/research support from: Nordic Pharma, Mano Andiappan Employee of: Open Health who were paid by Nordic Pharma to support the work described in the .
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BackgroundHypophosphatasia(HPP), a rare, inherited metabolic disease featuring low serum alkaline phosphatase (ALP) activity due to ALPL (encoding tissue non-specific alkaline phosphatase) gene mutation[1,2]. A wide-ranging clinical spectrum is often seen due to defective mineralisation affecting teeth, bones, joints and muscles[1]. This disease has a prevalence of 1/6370 in Europe and is often misdiagnosed and underdiagnosed with a diagnostic delay of more than ten years[1] The treatment is often supportive for milder cases and enzyme replacement therapy in severe cases.ObjectivesTo share this case to raise awareness among Rheumatologists.MethodsThis 58-year-old Caucasian female had her first HPP symptom as early eruption of deciduous teeth, along with recurrent dental infections and gum problems. She was diagnosed with flat feet at age five, had a big toe fracture at sixteen, followed by a metatarsal fracture. She experienced leg muscle cramps and aches, affecting her performance in sport during school life.At the age of thirty she began noticing weakness in arms and legs, which progressed over the years. She faced significant early morning stiffness along with painful ribs, hips, knees, shoulders, and small joints of feet when walking.She was diagnosed with Fibromyalgia at the age of forty-four. The following ten years she met numerous specialists including rheumatologist, pain specialist and physiotherapists. She was also diagnosed with early osteoarthritis, pernicious anaemia, hyperlipidemia, functional neurological syndrome, and central sensitization syndrome. She had multiple trials of steroids and opioids, all of which were stopped either due to side effects or inefficiency.A major flare of symptoms five years ago rendered her bedbound for three months, following which a chemical pathologist noticed a persistent low ALP levels and decided to investigate for HPP. It took another four years to complete these investigations due to the coronavirus pandemic.Currently, she is unable to weight bear or climb stairs and must stay indoors or in bed during flareup. She moved into a ground floor flat at the age of 54 and use a walking stick occasionally. By 58, she is unable to work and had given up her own business due to pain, weakness, and disability.ResultsOn clinical assessment, her height is 160 cm, faced difficulty getting up from chair, has an antalgic waddling gait, with a 6-minute walking distance of 60 metre, stopped after three minutes, and had a Brief Pain Inventory pain severity score of 7/10. Her ALP level is 24 U/L and PLP/PA ratio is 18.8 (ref < 5), and genetic testing showed heterozygous missense variant of ALPL gene mutation.ConclusionIt took more than forty years to reach a conclusive diagnosis of childhood onset HPP. Low ALP level is a signature of HPP and warrants investigations. Diagnosis can be challenging due to the rareness and variable presentation, however recognition of HPP features is crucial for timely referral, optimal disease management and potential improvement in quality of life.References[1]Högler W, Langman C, Gomes da Silva H, Fang S, Linglart A, Ozono K, Petryk A, Rockman-Greenberg C, Seefried L, Kishnani PS. Diagnostic delay is common among patients with hypophosphatasia: initial findings from a longitudinal, prospective, global registry. BMC Musculoskelet Disord. 2019 Feb 14;20(1):80. doi:10.1186/s12891-019- 2420-8. PMID: 30764793;PMCID: PMC6376686.[2]Injean P, Lee S, Downey C. Hypophosphatasia May Be Misdiagnosed as Fibromyalgia: A Single Center Experience []. Arthritis Rheumatol. 2020;72 (suppl 10). https://acrs.org//hypophosphatasia-may-be-misdiagnosed-as- ibromyalgia-a-single-center-experience/. Accessed January 14, 2023.[3]Lefever E, Witters P, Gielen E, Vanclooster A, Meersseman W, Morava E, Cassiman D, Laurent MR. Hypophosphatasia in Adults: Clinical Spectrum and Its Association With Genetics and Metabolic Substrates. J Clin Densitom. 2020 Jul-Sep;23(3):340- 48. doi: 10.1016/j.jocd.2018.12.006. Epub 2018 Dec 21. PMID: 30655187.Acknowledgements:N L.Disclosure of InterestsNone Declared.
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BackgroundPatients with chronic inflammatory diseases (CID) have an increased risk for contracting infections. For patients with rheumatic diseases EULAR recommends protecting them from vaccine-preventable diseases.ObjectivesTo assess the knowledge and awareness of common vaccinations and extent of immunization among patients with CID in Denmark, Finland, Norway, Sweden (Nordics), and to identify gaps between the existing EULAR vaccination recommendations and current practice as experienced by patients.MethodsA structured anonymous online survey for patients with CID ((rheumatological disease (RD), inflammatory bowel disease (IBD) and dermatological diseases (DD)) was conducted in 2022.The survey was answered by 1748 respondents (1031 patients with RD, 543 with IBD and 563 with DD).ResultsAmong respondents, 89% were female and 58% had disease duration of above 10 years. In total, 56% were treated in specialised and 32% in primary care. Majority had ongoing systemic immunosuppressive treatment (IT) (65%). Majority of RD (59%) and IBD (66%) patients were treated in specialised care whereas minority of DD patients (38%) were treated in specialised care.Forty-nine percent (49%) responded that their healthcare professional (HCP) did not inform them about the increased risk of infection – however, 55% of the respondents believed they are somewhat or much more likely to suffer from infections than those without CID or treatment, 33% thought there is no difference and 13% did not know there is a difference.In total 68% of respondents considered it important to get vaccinated due to CID or IT. The number was particularly high in RD group (74%), although 63% stated they had not received any information regarding vaccinations at the start of their treatment.Commonly recommended vaccinations by the HCP were COVID 19 (66%), influenza (63%) and pneumococcal (45%) vaccination. When comparing respondents ≥65 and <65 years, there was a difference in how often the influenza (71% vs. 57%) and pneumococcal (57% vs. 38%), but not COVID 19 vaccination (68% vs. 65%), were recommended. In addition, 74% and 75% of respondents receiving IT were recommended influenza and COVID 19 vaccination, respectively.In total, 22% had their vaccination status checked before initiating treatment;the lowest percentage was in DD (16%) and the highest in RD (25%). However, 44% of respondents received influenza vaccination before initiation of treatment. Moreover, 62% and 74% of respondents received influenza and COVID 19 vaccination while on treatment, respectively.Eighty-six percent (86%) did not receive a vaccination plan in relation to their CID and treatment. Moreover, 64% of the respondents (RD 57%;DD 71% and IBD 66%) did not have vaccination status assessed on a regular basis. Forty-three percent (43%) were dissatisfied with the follow-up of vaccination status by their HCP. Respondents of age ≥65 years were more satisfied than the younger ones (34% vs. 25% very satisfied) and respondents with RD were more satisfied than those with IBD or DD (33% vs. 25% vs. 20%).Forty-four percent (44%) responded that the information on vaccinations related to their CID and treatment was difficult to find and 71% would like to receive more information.The respondents with RD had different level of awareness regarding EULAR vaccination recommendations. The degree of awareness among patients with RD treated with IT are presented in Figure 1.ConclusionThis Nordic survey provides insights on patients' information needs, information sources and own experiences related to recommendations on vaccinations in relation to their CID and IT. The results confirm a gap between patients' expectations and needs vs. the information they actually receive. Our findings demonstrate a need for increased awareness among patients, providers and HCP regarding EULAR vaccination recommendations in patients with RD.Reference[1]Furer V, et al. 2019 update of EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases. Ann Rheum Dis 2020;79: 9–52.Acknowledgements:NIL.Disclosure of InterestsMeliha C Kapetanovic Grant/research support from: Received independent research grants from Roche and Pfizer, Randeep Mandla Shareholder of: Pfizer, Employee of: Current employee of Pfizer Norway, Maria Seddighzadeh Shareholder of: Pfizer, Employee of: Current employee of Pfizer Sweden, Susanne Thiesen Gren Shareholder of: Pfizer, Employee of: Current employee of Pfizer Denmark, Maaria Palmroth Consultant of: Employee of MedEngine Oy and contractor for Pfizer Oy, Employee of: Contractor for Pfizer Oy, Finland, Dan Henrohn Shareholder of: Pfizer, Employee of: Current employee of Pfizer AB, Sweden, Anne Grete Frostrup Shareholder of: Pfizer, Employee of: Current employee of Pfizer Denmark, Anna-Maria Hiltunen Consultant of: Pfizer. Employee of Nordic Healthcare Group, Jussi Ranta Consultant of: Pfizer. Employee of Nordic Healthcare Group, Anna-Kaisa Asikainen Consultant of: Pfizer. Employee of Nordic Healthcare Group, Veli-Jukka Anttila Speakers bureau: Lectures for Pfizer, MSD, Astellas, Roche, GSK, BMS, Biogen, Sandoz, Gilead, Unimedic Pharma, Boehringer-Ingelheim, Astra-Zeneca, Consultant of: Consultant for Pfizer and MSD.
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Introduction: Families of patients admitted to the Intensive Care Unit (ICU) experience significant emotional distress.1 Visiting restrictions mandated during the COVID-19 pandemic presented new barriers to family communication, including a shift from regular bedside nursing updates and in-person family meetings to scheduled, clinician-led telephone calls and video calls.2 This resulted in loss of non-verbal clues and feedback during family discussions, difficulties establishing rapport with families and risked inconsistent messages and moral injury to staff.3 Objectives: We aimed to design a system where all ICU family discussions were documented in one place in a standardised format, thereby clarifying information given to families to date and helping staff give families a consistent message. In addition, we aimed to provide practical advice for the staff making family update telephone calls and strategies for managing difficult telephone conversations. Method(s): We designed and implemented an ICU family communication booklet: this was colour-coded blue;separate to other ICU documentation within the patient notes;and included communication aids and schematics to help staff optimise and structure a telephone update. Using Quality Improvement methodology, we completed four Plan-Do-Study-Act (PDSA) cycles and gathered qualitative and quantitative feedback: this occurred prior to the project and at one,12,18 and 21 months post introduction. We implemented suggested changes at each stage. We designed staff surveys with questions in a 5-point Likert scale format plus opportunity for free comments. Twenty-one months post implementation, we designed and delivered an MDT awareness campaign using the 'tea-trolley training' method,4 departmental induction sessions for new ICU doctors and nurses and a 'Message of the Week' initiative. An updated version of the booklet was introduced in February 2022 (Figure 1). Result(s): Staff survey results are shown in Table 1. Forty-six staff participated in tea trolley training, feedback form return rate 100%. Following feedback, the family communication booklet was updated to include the following: a prompt to set up a password;a new communication checklist at the front, including documentation of next of kin contact details, a prompt to confirm details for video calls, confirm primary contact and whether the next of kin would like updates during the night;consent (if the patient is awake) for video calls while sedated;information regarding patient property;prompt to give families our designated ICU email address to allow relatives to send in photographs to display next to patients' beds;prompts to encourage MDT documentation and patient diary entry. Conclusion(s): During unprecedented visiting restrictions in the COVID-19 pandemic, we implemented an ICU family communication booklet which has been so successful that we plan to use it indefinitely. We plan to further develop this tool by encouraging MDT involvement, seek further staff feedback in six months' time, incorporate this structure into our electronic patient information system when introduced and collect feedback from patients and their next of kin at our ICU follow up clinic. This communication booklet would potentially be reproducible and transferable to other ICUs and could be used as part of a national ICU family communication initiative.
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BackgroundThe more time healthcare professionals spend with patients the better the health outcomes become. Therefore, education seems to play a crucial role for the quality of life not only for the patients but also for the health care costs and the future cost projections that depend on the health outcomes of everyone.ObjectivesAim of the School of Health Education is to give the opportunity to participants to familiarize themselves with frequently used terminology in everyday clinical practice, to become accustomed in using the common medical language when describing their symptoms to their doctors so that they will have a common ground. Basic goal of this education is for every patient to understand a bit more about concepts such as medications, adverse events, pharmacovigilance etc.MethodsInteractive live events, of approximately 2hour duration, have already take place in 15 cities of Greece. In the year 2020 COVID restrictions did not allow for such events to be organized. The project will start again during 2023. Speakers in the events were: rheumatologists, general physicians, anesthesiologists, psychiatrists, psychologists, gynecologists, clinical pharmacologists and others.ResultsOver 1800 patients, caregivers, members of the public, stakeholders, members of the local authorities, healthcare professional and others participated in the live events. Handouts and printed material from HELAR/ELEANA were given to participants as well an evaluation form to complete. The events generated a lot of press locally and nationally, with 4 press conferences, 25 press releases, 18 TV interviews and 10 radio interviews.ConclusionPublicity and participation in the events showed that patient education is quite important for the patients and the local communities. Since 2020 and the COVID pandemic there has been a shift towards public health issues and health education creating a unique opportunity for HELAR/ELEANA's School of Health Education to be adapted and become once more available for the patients living with an RMD. This time the new version could be either a virtual version or a live version for many more patients, caregivers and the public to be able to attend.AcknowledgementsHellenic League Against Rheumatism is grateful to Dimitrios Kouvelas, MD, BPharm, PhD, Professor of Pharmacology and Clinical Pharmacology, Head of the Dept of Clinical Pharmacology, School of Medicine, Aristotle University of Thessaloniki for his precious scientific contribution, implementation and for being the main speaker voluntarily.The School of Health Education was awarded the bronze prize by the Health Care Business Awards in 2019.Disclosure of InterestsKATY ANTONOPOULOU: None declared, ATHANASIA PAPPA: None declared, DIMITRIOS KOUVELAS Consultant of: DEMO, STILVI, Nadia Malliou: None declared, Katerina Tsekoura: None declared, MACHI SALAMALIKI: None declared, EVANGELIA OIKONOMOULA: None declared, KATERINA ROUSTA: None declared.
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BACKGROUND: The Covid-19 pandemic has highlighted the importance of remote patient and professional communication. This has been especially important for highly specialised and regionally-based specialties such as plastic surgery. The aim of this study was to review how UK plastic surgery units represent themselves online and their phone accessibility. PATIENTS AND METHODS: UK plastic surgery units were identified using the BAPRAS website and their websites and telephone accessibility assessed. RESULTS: Whilst a minority of units have clearly invested heavily in ensuring comprehensive webpages, nearly a third have no dedicated webpage at all. We found significant variation in quality and user-friendliness of online resources both for patients and for other healthcare professionals, with less than a quarter of units providing comprehensive contact details, emergency referral guidance, or information about changes to services due to Covid-19, to highlight a few areas. Communication with the BAPRAS website was also poor with less than half of web-links connecting to correct and relevant webpage and only 13.5% of phone numbers connecting directly to a useful plastic surgery number. In the phone component of our study we found that 47% of calls to 'direct' numbers went to voicemail but wait-times were significantly less than going through hospital switchboards and connections were more accurate. CONCLUSION: In a world where a business' credibility is so heavily based on their online appearance and, in an increasingly online era of medicine, we hope that this study may be a resource for units to improve their web-based resources and prompt further research in enhancing patient experience online.
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Background: People living with HIV (PLWH) are at increased risk of severe or critical COVID-19. This is in addition to the increased risk associated with any coexisting conditions such as chronic pulmonary disease (CPD), chronic kidney disease and cardiovascular disease. Vaccination against COVID-19 is therefore strongly recommended for PLWH. Method(s): We conducted a descriptive study to evaluate comorbidities among PLWH attending for HIV care at two NHS Trusts in North East England and who were under- or unvaccinated against COVID-19, defined as having received either zero or 1 doses of any COVID-19 vaccine by 01/10/2022. PLWH under active care were identified using the HIV and AIDS Reporting System (HARS) dataset. Vaccination data were obtained from regional integrated care records (RICR) and cross-referenced with HARS. Information on comorbidities was collated for any patients who were under- or unvaccinated. To quantify risk and clinical vulnerability, we calculated the Charlson Comorbidity Index (CCI) for each of these patients. A CCI score >=1 is associated with mortality/poor outcomes in patients with COVID-19. Result(s): 141 under- or unvaccinated patients were identified out of a total cohort of 1492 patients who attended for HIV care (9.5%);of these, 96 (68.1%) and 45 (31.9%) had received zero and one vaccination respectively. The median age of this under-/unvaccinated cohort was 41 years and 91 (64.5%) were male. 62 patients (44.0%) had a CCI score of 1 or more;13 patients (9.2%) had a diagnosis of AIDS during the time period evaluated;11 (84.6%) of the patients with an AIDS diagnosis were completely unvaccinated. Non-HIV comorbidities included liver disease (10/141, 7.1%), solid organ cancer (5/141, 3.5%), CPD (4/141, 2.8%) and connective tissue disease (3/141, 2.1%). Six patients (4.3%) had >=2 comorbidities. Conclusion(s): Nearly half of the under-/unvaccinated PLWH attending our services were identified as being at an increased risk of having a poor outcome in the event of contracting COVID-19. Proactively identifying these individuals would allow services to offer tailored support in making informed decisions about vaccinations. Useful strategies may include the use of patient information leaflets and targeted discussion with patients explaining their individual risk from COVID-19.
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Background: The COVID 19 pandemic saw many changes to the experience of lung cancer patients and their relatives, not least access to previously available information within hospitals, support centres or support groups. Many clinicians were unaware of the lack of access to information centres (often manned by volunteers) which had closed during the pandemic, closure of patient support groups and increased pressure on social media sites from worried and concerned relatives, no longer able to accompany their loved ones to clinical appointments in some areas. Highlighting the issue during a regular UK Clinical Expert Group meeting on lung cancer, contributions were sought from relevant members to identify what had changed and what could be done to support patients and their relatives in this new era. Aim(s): To collate different perspectives from nursing, relevant charities and patient advocate experience to report on the latest situation To suggest learning to help future communication and awareness within HCP community To work collectively to identify areas to improve future awareness and communication Methods: A paper was written by the CEG Patient representative and Roy Castle lung cancer foundation inviting comments from other CEG members. Contributions by email, relevant research links and other information sources were added to a revised paper for circulation to relevant contacts. Recommendation to assess any impact on communication methods and supportive information available during periods of change to ensure patients/relatives can still access relevant support using different media (e.g. phone, online, written information and any in-person support). Recognise that obtaining well written/lay information about many aspects of their situation (diagnostics, treatments, living with conditions) supports their patients mental and physical health. Disclosure: No significant relationships.Copyright © 2023 Elsevier B.V.
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Introduction: It is important to know the risk factors for death in reducing mortality in patients with Stenotrophomonas maltophilia infections. The purpose of this study was to examine the risk factors associated with mortality in hospitalized patients with S. maltophilia infections. Material(s) and Method(s): Patients with S. maltophilia infections aged 18 years and older who were hospitalized in Haseki Research and Training between January 1, 2017, and April 30, 2022, were included in the study. The patients were divided into two groups, non-survivors and survivors, and the clinical features and laboratory parameters of the groups were compared. Mortality risk factors were analyzed by logistic and Cox regression analyses. Result(s): A total of 75 patients with S. maltophilia infections were included. The mortality rate was 38.6% (n= 29). Advanced age (OR= 1.05, 95% CI= 1.012-1.085, p= 0.009), COVID-19 pneumonia (OR= 9.52, 95% CI= 1.255-72.223, p= 0.029), and presence of central venous catheter (CVC) (OR= 18.25, 95% CI= 2.187-152.323, p= 0.007) were risk factors for death. Conclusion(s): Physicians should be aware of the potential risk of S. maltophilia infections for mortality, particularly in patients with predefined risk factors such as advanced age, the presence of CVC, and COVID-19. Performing CVC care in accordance with infection prevention and control measures and timely removal of CVC may be beneficial in reducing deaths due to S. maltophilia infection.Copyright © 2023 Bilimsel Tip Yayinevi. All rights reserved.
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Background: COVID-19 pandemic is certainly the biggest health challenge in the world today. Since the beginning of this pandemic, the severity of the disease has been associated with chronic diseases such as cardiovascular disease, diabetes and hypertension. Given that asthma is one of the most common chronic diseases of childhood that affects the respiratory system which is the main and important target of COVID-19, it was necessary to study and determine the clinical course and the effect of COVID-19 on different aspects of asthmatic patients' lives. Method(s): In this study, which is a cross-sectional study, patients' information was collected by a questionnaire in the form of a telephone interview with the parents of children with asthma which registered in the database of the Asthma and Allergy Clinic. The sample size of this study included 200 patients with asthma under the age of 18 (129 boys and 71 girls). When collecting patient information, due to the fact that more than 12 months have passed since the onset of the COVID-19 pandemic in Iran, patient information was collected for the first year of the COVID-19 pandemic. Result(s): Among the 200 asthmatic patients studied, 45 patients (22.5%) suspected COVID-19. Of these, 11 patients (24.4% of suspected patients) underwent diagnostic PCR test. Among these tests, the result of 10 tests (90.9% of the total tests) was positive. Also, 101 patients (50.5%), at least one of their parents had COVID-19. 189 patients (94.5%) evaluated their asthma status better than last year and out of 200 patients, only 31 patients (15.5%) were treated for their asthma with the highest share of Salbutamol (96.8%), Montelukast (64.5%) and inhaled corticosteroids (ICS) (54.8%). 41 patients (20.5%) had referred to medical centers at least once in the first year of COVID-19 pandemic, of which 31.7% (13 patients) had an asthma attack. Among the total patients, 20 patients (10%) had received the influenza vaccine in the last year (1399). Patients' ACT score in 159 patients aged 4-11 years with a mean score of 25.55 +/- 2.27 and 40 patients aged 12-18 years with a mean score of 23.28 +/- 3.31 were calculated, which was in the range of well controlled. Average score of parental stress and anxiety (on a scale of 0 to 10), It was 5.93 +/- 2.82. Conclusion(s): The results of this study generally showed an improvement in asthma control status among children with asthma during the first year of COVID-19 pandemic. Despite the improvement in control of asthma in most of the children studied, the presence of stress and anxiety caused by COVID-19 in children and their parents was significant. To reduce it, it is necessary to plan and take preventive actions.
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The new Corona Virus (COVID-19) is a pandemic of unthinkable scope and magnitude that is posing a significant threat to the medical business worldwide in the twenty-first century. To a greater extent, it has fundamentally altered the texture of life. The growing number of people dying as a result of sickness has instilled fear in the minds of many who are hesitant to seek even basic medical help. And, in light of the recent COVID-19 scenario and the growing number of affected people, researchers began to focus on ways to communicate and monitor patient information remotely in order to reduce the risk of getting infected. The Internet of Things (IoT) is one of the booming technologies in the medical and industrial fields. Patients could benefit from the proposed device because it can monitor and diagnose their health status. This study describes a gadget that measures and records heart rate, body temperature, and CT imaging. These records will be measured and sent to the cloud server using an Arduino device with sensors. © 2022 IEEE.
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Purpose: This study aims to investigate the working way of the e-Pulse portal in Turkiye as a sample of a next-generation digital tool for health data management. Accordingly, this study focuses on explaining the structure and key services of the e-Pulse portal in the context of health data management. Design/methodology/approach: This study is a technical paper that will explain how the e-Pulse portal works in Turkiye. Accordingly, the data are based on secondary sources and mostly the official website of the e-Pulse portal. As a sample case, this study investigates the e-Pulse portal from Turkiye. The data are categorized by tables, and some key factors are classified based on review results. Finding(s): As a result of the review of the e-Pulse portal's sample account, it is seen that the e-Pulse portal provides comprehensive data for personal health data for both individuals and healthcare professionals. By permitting healthcare professionals, users or patients can share their personal health data on specific dates and numbers whenever they need and want. When sharing recorded personal health data, citizens or patients can get more efficient healthcare service on the time. Research limitations/implications: By giving descriptive evidence and review through the e-Pulse portal, countries with high-populated can see the key e-services and elements to manage health data through digital tools. On the other side, this study has some limitations. This study investigated the e-Pulse portal and its e-services for Turkiye and gave some findings mostly based on subjective deduction. Another digital portal can give different findings for the literature. Practical implications: Based on the e-Pulse portal case, it is determined that by creating a digital portal with recorded personal up-to-date health data, healthcare services can be ensured more efficiently among high-populated countries in the long term. While population growth and pandemic possibilities such as COVID-19 increase throughout the world, serving more patients with these portals will increase efficiency and service quality, provided that patient information is well protected. Originality/value: This study reveals key e-services and segments to provide personal health data management by a next-generation digital tool based on the e-Pulse portal. The main contribution of this study is expected to guide other countries when adapting next-generation technology or systems to manage health data in the future.Copyright © 2023, Emerald Publishing Limited.
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The COVID-19 pandemic led to an increase in cybersecurity attacks on organizations operating in the healthcare industry. Health information professionals and health executives are unable to limit the impact of data breaches on records their organizations handle. While current research focuses on prevention strategies and the understanding of the causes of data breaches, it failed to address how to mitigate the impact of successful cybersecurity attacks. This quantitative research paper examined the effect the healthcare entity type has on the number of impacted individuals for healthcare data breaches that occurred during the pandemic. Health information professionals will be able to mitigate the number of breached records based on their organizational type. Some of this paper's findings include the call for implementation of organizational frameworks aimed to protect patient information, and the call for further research to understand how other factors might affect the impact of healthcare data breaches.
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COVID-19 , Computer Security , Electronic Health Records , Humans , Delivery of Health Care , Pandemics/prevention & controlABSTRACT
Aim: To improve education in patients with new urinary catheters on discharge from the Emergency Department (ED), decreasing the incidence and healthcare burden of subsequent catheter-associated complications. Method: Qualitative study design was employed to survey all Healthcare Professionals (HCPs) working in the ED and establish the quality and means of information currently provided. A novel trust-endorsed proforma with information leaflet was created with urology team input and uploaded to the ED website. Staff were updated via email, WhatsApp and verbally and re-surveyed after 6 months. Survey responses were evaluated with descriptive statistical analysis. Results: The majority of HCPs in the department reported nearly always/ often providing information verbally to patients, with similar findings on re-surveying. The most commonly discussed topic with patients remained: Common complications and where to seek advice. HCPs reported never/rarely offering written information (75%, 74% before and after respectively) and nearly all HCPs surveyed did not know where to find patient information resources (81%, 79% respectively). Conclusions: Written information provision remained poor despite creation of a proforma with information leaflet. A high departmental turnover of HCPs, alongside varying seasonal Covid burden may have reduced the efficacy of interventions. The findings may also be as a result of HCPs still not knowing where to locate such resources. 'Nudge theory' through placing leaflets next to catheter supplies, combined with improved education of new staff rotating through the department at individual inductions and the introduction of checklists are changes that have been since actioned and due to be re-surveyed in February 2022.
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Background: Since its inception in 2000 the UK’s National Cancer Research Institute (‘NCRI’) has committed to involve Consumers (patents and public) representatives in all aspects of its work. Methods: Consumers are recruited in open competition, trained for specific NCRI roles, and supported to work beyond those roles. The NCRI Consumer Forum contains 140 members from all four UK nations, providing a pool of experienced advocates working in all areas of cancer research. The membership reflects the geographic diversity of the four UK nations. Results: 75% of Consumers work with research funders or organisations outside the NCRI Partners. In the 2021 census, more than 50 such organisations were identified, including local, national and international organisations, charities, NHS Trusts, online communities and patient groups. Consumers work or have worked with industry including Big Pharma, biotechs and medical device manufacturers. They serve on Trial Management/Steering Groups, sit on research funding committees and hold governance or accountability posts, eg Board members, Charity Trustees, NHS Commissioners. All have worked on patient information, including websites, videos and audio. During the COVID-19 pandemic in 2020-21 the Consumer Forum worked collaboratively with the UK Coronavirus Cancer Monitoring Project to create, distribute and analyse a survey asking cancer patients what was important to them for COVID-19 and cancer research. Results informed the direction of Covid-19 and cancer research in the UK. This collaboration continued with regular discussion around new research areas and collaboration on peer-reviewed journal articles. Consumers work/have worked with strategic bodies in the UK and beyond eg NICE, MHRA, HRA, BBMRI-ERIC, EORTC. Consumers have provided responses to two recent UK Government consultations, inputting into the strategy of the UK regulatory environment via the MHRA clinical trials regulation and shaping the future strategy for cancer care and research via the national 10-year cancer plan. Conclusions: The NCRI Consumer Forum is a group of Patients and Carers promoting evidence-based medicine and evidence-based policy in the UK and beyond. Legal entity responsible for the study: NCRI. Funding: Has not received any funding. Disclosure: All authors have declared no conflicts of interest.
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Background Palliative care services have responded rapidly and innovatively to the challenges of the COVID-19 pandemic (Dunleavy, Preston, Bajwah, et al., 2021;Etkind, Bone, Lovell, et al., 2020). Digital health interventions (DHI) have the potential to improve service provision (Finucane, O'Donnell, Lugton, et al., 2021;Bush, Perez, Baum, et al., 2018), with increasing evidence supporting the use of video consultations in palliative care as a safe and effective adjunct to face-to-face patient contact (Sutherland, Strickland, Wee, 2020). Aim To evaluate the extent to which two digital health interventions were adapted by one hospice in response to the COVID-19 pandemic. Method An electronic health record system was already in use (SystmOne) at the hospice and these new digital health interventions were incorporated in response to the pandemic:•Video consultations.•'Authority to Administer' (ATA) electronic charts on SystmOne, authorising administration of injectable medications by community nurses for people at end-of-life being cared for at home. These were in addition to paper community drug charts, usually completed by GPs, community or hospice prescribers. Results•Video consultations: From none (pre-pandemic) to a monthly average of 68 in early 2020, nearly doubling to an average of 132 in early 2021.•ATAs increased from a monthly average of five (mid 2020) to 27 (first quarter, 2021).•35% of ATAs (49 out of 144 in a 42 week period) were completed at weekends or late evening, with likely patient benefit as delays awaiting completion by urgent care prescribers were potentially avoided. Conclusion Digital health interventions are firmly embedded in the day to day provision of palliative care services. As well as using NHS approved software such as accuRx for secure video consultations, staff have also innovated in using this technology to communicate more effectively with patients, such as sending clinic letters, symptom assessment questionnaires, patient information leaflets and text summaries of medication changes directly to patient devices. There is huge scope to incorporate digital health interventions further within palliative care to meet the changing needs of local communities.
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A highly visual practice, dermatology as a field has significant potential to use emerging technology such as mobile applications for research and patient-centered mapping of the disease process. The UCSF team is working to create SkinTracker, a mobile application for patients with skin disease to remotely participate in clinical trials and research studies. The initial iteration of the application focuses on atopic dermatitis. The application includes an enrollment and consent module, validated surveys including the Patient Oriented Eczema Measure (POEM), Dermatology Life Quality Index (DLQI), Numerical Rating Scale (NRS) for itch, link to a wearable device that collects biometric data, a voice diary, and a patient-directed photography module to facilitate physician evaluation of disease. Also included is the ability to report medication use, adverse events, and the ability to chat with the study team. The patient information is available to the research team on a secure online website, where researchers can assess patient photographs to perform Eczema Area and Severity Index (EASI) scoring, note important patient observations from the voice diary, and view quantitative data from both patient surveys and health measures like physical activity, sleep, and environmental factors. We believe this application and website will facilitate patient interest and participation in research, continue research despite in-person restrictions placed during the COVID-19 pandemic, and allow enrollment of more diverse patients for clinical studies who would otherwise be less likely to participate in research due to time or financial constraints.
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BACKGROUND: The rapid spread of COVID-19 required swift action to provide people with rheumatic and musculoskeletal diseases (RMDs) with reliable information. People with limited health literacy constitute a vulnerable group that might have difficulty accessing, understanding and applying health information, particularly in times of crisis. OBJECTIVES: This study explored (a) key aspects of crisis communication and (b) explicit consideration of people's health literacy needs in communication to people with RMDs during the first wave of COVID-19 in the Netherlands. METHODS: We conducted a convergent, qualitatively driven mixed-methods study comprising seven qualitative interviews with professional representatives of organisations responsible for information provision to people with RMDs, and quantitative analysis of 15 patient information materials distributed by these organisations. The study was guided by principles of crisis communication and health literacy. We assessed understandability and actionability of information materials using the Dutch version of the Patient Education Materials Assessment Tool (PEMAT, resulting in a percentage of quality criteria met), and language difficulty level using an online application (assessing difficult words, jargon, passive, complex and long sentences, long paragraphs, and difficulty levels according to the Common European Framework of Reference for Languages (CEFR, from A1 (basic) to C2 (proficient))). RESULTS: Respondents reported lack of preparedness, challenges related to scientific uncertainty and reaching the target group, difficulty simplifying information, and uncertainty regarding adequacy of the communication approach. Patient information materials (written and video) showed variation in actionability (range 60-100%) and understandability (range 58-100%), and 69% of written materials were too difficult, mostly due to the use of long sentences and difficult words. The quantitative findings were in coherence with the limitations in communication reported by respondents. Several potential improvements were formulated in 'lessons learned'. CONCLUSIONS: Although rheumatology organisations mostly adhered to principles of crisis communication and made efforts to adapt information to their audience's needs, we propose recommendations to improve preparedness, strategy, content, reach and consideration of health literacy needs in future crisis communication.