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1.
BMC Health Serv Res ; 22(1): 235, 2022 Feb 21.
Article in English | MEDLINE | ID: mdl-35189884

ABSTRACT

BACKGROUND: Follow-up care after transient ischaemic attack (TIA) and minor stroke has been found to be sub-optimal, with individuals often feeling abandoned. We aimed to explore factors influencing holistic follow-up care after TIA and minor stroke. METHODS: Qualitative semi-structured interviews with 24 healthcare providers (HCPs): 5 stroke doctors, 4 nurses, 9 allied health professionals and 6 general practitioners. Participants were recruited from three TIA clinics, seven general practices and one community care trust in the West Midlands, England. Interview transcripts were deductively coded using the Theoretical Domains Framework and themes were generated from coded data. RESULTS: There was no clear pathway for supporting people with TIA or minor stroke after rapid specialist review in hospital; consequently, these patients had limited access to HCPs from all settings ('Environmental context and resources'). There was lack of understanding of potential needs post-TIA/minor stroke, in particular residual problems such as anxiety/fatigue ('Knowledge'). Identification and management of needs was largely influenced by HCPs' perceived role, professional training ('Social professional role and identity') and time constraints ('Environmental context and resources'). Follow-up was often passive - with onerous on patients to seek support - and predominantly focused on acute medical management ('Intentions'/'Goal'). CONCLUSIONS: Follow-up care post-TIA/minor stroke is currently sub-optimal. Through identifying factors which influence follow-up, we can inform guidelines and practical strategies to improve holistic healthcare.


Subject(s)
General Practitioners , Ischemic Attack, Transient , Stroke , Aftercare , Humans , Ischemic Attack, Transient/therapy , Qualitative Research , Stroke/therapy
2.
BMC Fam Pract ; 21(1): 14, 2020 01 24.
Article in English | MEDLINE | ID: mdl-31980021

ABSTRACT

BACKGROUND: Patient reported outcome measures (PROMs) are increasingly used to assess impact of disease and treatment on quality of life and symptoms; however, their use in primary care is fragmented. We aimed to understand how PROMs are currently being used in primary care, the barriers and facilitators of this use and if appropriate how it might be optimised. METHODS: Cross-sectional survey and semi-structured interviews among general practitioners (GPs) in England. GPs' opinions were explored using an electronic, self-completed questionnaire disseminated to 100 GPs via an online doctors' community and semi-structured qualitative interviews with 25 GPs. RESULTS: Most GPs surveyed (77/100; 77%) reported using one or more PROM, primarily to aid clinical management (n = 66) or as screening/diagnostic tools (n = 62). Qualitative interviews highlighted challenges in identifying and selecting PROMs; however, some GPs valued PROMs for shared decision making and to direct patient discussions. The interviews identified key barriers to PROM use including: time constraints; insufficient knowledge; lack of integration into clinical systems; and PROMs being mandated without consultation or explanation. Evidence of the benefit of PROMs is required to promote uptake and use of PROMs in primary care. CONCLUSION: Implementation of PROMs in primary care requires integration with clinical systems, a bottom-up approach to PROM selection and system design involving meaningful consultation with patients and primary care clinicians and training/support for use.


Subject(s)
Attitude of Health Personnel , General Practitioners , Patient Reported Outcome Measures , Primary Health Care , Cross-Sectional Studies , Decision Making, Shared , England , Female , Humans , Male , Practice Patterns, Physicians' , Qualitative Research , Surveys and Questionnaires
3.
Brain Inj ; 34(6): 723-731, 2020 05 11.
Article in English | MEDLINE | ID: mdl-32223338

ABSTRACT

OBJECTIVES: To (a) identify residual symptoms and deficits resulting from a traumatic brain injury (TBI) and impact on patients' and their families' quality of life; (b) explore views and experience of care providers, researchers, patients, and carers of using PROMs; and (c) explore their attitudes toward reporting symptoms and impacts on an electronic platform. Methods: Qualitative semi-structured interviews with people with TBI and their carers; health-care professionals, researchers, and third sector staff members working with people with TBI. Results: Symptoms and long-term impacts of TBI included cognitive problems, difficulties functioning, anxiety, and depression. PROMs were seen as improving knowledge of residual symptoms and their impact post-TBI but not always accurately reflecting patients' residual problems. Challenges to completing PROMs were cognitive impairment and lack of insight into condition. Perceived advantages of an electronic platform included easy data collection; flexibility; improving workflow; and the ability to send/ receive feedback and reminders easily. Suggested features of an electronic platform included simple layout, lay language, short questions, few items on the screen, and capability to send/receive feedback and additional information. Conclusion: There is a demand for reporting symptoms and their impact electronically, providing the layout is kept simple and feedback from clinicians is provided.


Subject(s)
Brain Injuries, Traumatic , Quality of Life , Attitude , Electronics , Humans , Patient Reported Outcome Measures
4.
BMC Fam Pract ; 20(1): 2, 2019 01 04.
Article in English | MEDLINE | ID: mdl-30609920

ABSTRACT

BACKGROUND: Long-term needs of stroke survivors are often not adequately addressed and many patients are dissatisfied with care post-discharge from hospital. Primary care could play an important role in identifying need in people with stroke. AIM: We aimed to explore, refine and test the feasibility and acceptability of a post-stroke checklist for stroke reviews in primary care. DESIGN AND SETTING: Focus groups (using a generic qualitative approach) and a single-centre feasibility study. METHOD: Five focus groups were conducted; three with healthcare providers and two with stroke survivors/carers. The focus groups discussed acceptability of a checklist approach and the content of an existing checklist. The checklist was then modified and piloted in one general practice surgery in the East of England. RESULTS: The qualitative data found the concept of a checklist was considered valuable to standardise stroke reviews and prevent post-stroke problems being missed. Items were identified that were missing from the original checklist: return to work, fatigue, intimate relationships and social activities. Time constraints was the main concern from healthcare professionals and pre-completion of the checklist was suggested to address this. Thirteen stroke survivors were recruited to the feasibility study. The modified checklist was found to be feasible and acceptable to patients and primary care clinicians and resulted in agreed action plans. CONCLUSION: The modified post-stroke checklist is a pragmatic and feasible approach to identify problems post-stroke and facilitate referral to appropriate support services. The checklist is a potentially valuable tool to structure stroke reviews using a patient-centred approach.


Subject(s)
Checklist , Needs Assessment , Primary Health Care , Stroke Rehabilitation , Stroke/therapy , Survivors , Adult , Aftercare , Aged , Aged, 80 and over , Caregivers , Feasibility Studies , Female , Focus Groups , Health Personnel , Humans , Male , Middle Aged
5.
BMC Fam Pract ; 20(1): 67, 2019 05 21.
Article in English | MEDLINE | ID: mdl-31113364

ABSTRACT

BACKGROUND: National guidelines recommend patients with suspected transient ischaemic attack (TIA) should be seen by a specialist within 24 h. However, people with suspected TIA often present to non-specialised services, particularly primary care. Therefore, general practitioners (GPs) have a crucial role in recognition and urgent referral of people with suspected TIA. This study aims to explore the role of GPs in the initial management of suspected TIA in the United Kingdom (UK). METHODS: One-to-one, semi-structured interviews with GPs, TIA clinic staff and patients with suspected TIA from two sites in the UK: Cambridge and Birmingham. Thematic analysis was undertaken to explore views on the role of the GP in managing suspected TIA. Thirty semi-structured interviews were conducted with stroke patients (n = 12), GPs (n = 9) and TIA clinic hospital staff (n = 9) from two hospitals and nine GP practices in surrounding areas. RESULTS: Three overarching themes were identified: (1) multiple management pathways for suspected TIA; (2) uncertainty regarding suspected TIA as an emergency or routine situation; and (3) influences on the urgency of GP management. CONCLUSIONS: Guidelines on the primary care management of TIA describe only a small proportion of the factors which influence GP management and referral of suspected TIA. Efforts to improve treatment, appropriate referral and patient experience should use a real rather than idealised model of the GP role in managing suspected TIA.


Subject(s)
General Practitioners , Ischemic Attack, Transient/diagnosis , Physician's Role , Referral and Consultation , Stroke/diagnosis , Aged , Female , Humans , Male , Medical Staff, Hospital , Middle Aged , Nursing Staff, Hospital , Qualitative Research
6.
BMC Fam Pract ; 20(1): 176, 2019 12 17.
Article in English | MEDLINE | ID: mdl-31847828

ABSTRACT

BACKGROUND: Transient ischaemic attack (TIA) and minor stroke are often considered transient events; however, many patients experience residual problems and reduced quality of life. Current follow-up healthcare focuses on stroke prevention and care for other long-term problems is not routinely provided. We aimed to explore patient and healthcare provider (HCP) experiences of residual problems post-TIA/minor stroke, the impact of TIA/minor stroke on patients' lives, and current follow-up care and sources of support. METHODS: This qualitative study recruited participants from three TIA clinics, seven general practices and one community care trust in the West Midlands, England. Semi-structured interviews were conducted with 12 TIA/minor stroke patients and 24 HCPs from primary, secondary and community care. Data was analysed using framework analysis. RESULTS: A diverse range of residual problems were reported post-TIA/minor stroke, including psychological, cognitive and physical impairments. Consultants and general practitioners generally lacked awareness of these long-term problems; however, there was better recognition among nurses and allied HCPs. Residual problems significantly affected patients' lives, including return to work, social activities, and relationships with family and friends. Follow-up care was variable and medically focused. While HCPs prioritised medical investigations and stroke prevention medication, patients emphasised the importance of understanding their diagnosis, individualised support regarding stroke risk, and addressing residual problems. CONCLUSION: HCPs could better communicate information about TIA/minor stroke diagnosis and secondary stroke prevention using lay language, and improve their identification of and response to important residual impairments affecting patients.


Subject(s)
Aftercare , Ischemic Attack, Transient/psychology , Stroke/psychology , Adult , England , Female , Health Personnel , Humans , Interviews as Topic , Ischemic Attack, Transient/diagnosis , Ischemic Attack, Transient/therapy , Male , Middle Aged , Qualitative Research , Quality of Life , Stroke/diagnosis , Stroke/therapy
7.
Stroke ; 49(3): 682-687, 2018 03.
Article in English | MEDLINE | ID: mdl-29440471

ABSTRACT

BACKGROUND AND PURPOSE: Primary prevention of stroke and transient ischemic attack (TIA) is important to reduce the burden of these conditions; however, prescribing of prevention drugs is suboptimal. We aimed to identify individual clinical and demographic characteristics associated with potential missed opportunities for prevention therapy with lipid-lowering, anticoagulant, or antihypertensive drugs before stroke/TIA. METHODS: We analyzed anonymized electronic primary care records from a UK primary care database that covers 561 family practices. Patients with first-ever stroke/TIA, ≥18 years, with diagnosis between January 1, 2009, and December 31, 2013, were included. Missed opportunities for prevention were defined as people with clinical indications for lipid-lowering, anticoagulant, or antihypertensive drugs but not prescribed these drugs before their stroke/TIA. Mixed-effect logistic regression models evaluated the relationship between missed opportunities and individual clinical/demographic characteristics. RESULTS: The inclusion criteria were met by 29 043 people with stroke/TIA. Patients with coronary heart disease, chronic kidney disease, peripheral arterial disease, or diabetes mellitus were at less risk of a missed opportunity for prescription of lipid-lowering and antihypertensive drugs. However, patients with a 10-year cardiovascular disease risk ≥20% but without these diagnoses had increased risk of having a missed opportunity for prescription of lipid-lowering drugs or antihypertensive drugs. Women were less likely to be prescribed anticoagulants but more likely to be prescribed antihypertensive drugs. The elderly (≥85 years of age) were less likely to be prescribed all 3 prevention drugs, compared with people aged 75 to 79 years. CONCLUSIONS: Knowing the patient characteristics predictive of missed opportunities for stroke prevention may help primary care identify and appropriately manage these patients. Improving the management of these groups may reduce their risk and potentially prevent large number of future strokes and TIAs in the population.


Subject(s)
Anticoagulants/administration & dosage , Antihypertensive Agents/administration & dosage , Brain Ischemia , Coronary Disease , Peripheral Arterial Disease , Renal Insufficiency, Chronic , Stroke , Aged , Aged, 80 and over , Brain Ischemia/epidemiology , Brain Ischemia/etiology , Brain Ischemia/prevention & control , Coronary Disease/complications , Coronary Disease/drug therapy , Coronary Disease/epidemiology , Female , Humans , Male , Middle Aged , Peripheral Arterial Disease/complications , Peripheral Arterial Disease/drug therapy , Peripheral Arterial Disease/epidemiology , Renal Insufficiency, Chronic/complications , Renal Insufficiency, Chronic/drug therapy , Renal Insufficiency, Chronic/epidemiology , Stroke/epidemiology , Stroke/etiology , Stroke/prevention & control
8.
Health Qual Life Outcomes ; 16(1): 133, 2018 Jul 05.
Article in English | MEDLINE | ID: mdl-29976215

ABSTRACT

BACKGROUND: Primary Sclerosing Cholangitis (PSC) is a rare chronic, cholestatic liver condition in which patients can experience a range of debilitating symptoms. Patient reported outcome measures (PROMs) could provide a valuable insight into the impact of PSC on patient quality of life and symptoms. A previous review has been conducted on the quality of life instruments used in liver transplant recipients. However, there has been no comprehensive review evaluating PROM use or measurement properties in PSC patients' to-date. The aim of the systematic review was to: (a) To identify and categorise which PROMs are currently being used in research involving the PSC population (b) To investigate the measurement properties of PROMs used in PSC. METHODS: A systematic review of Medline, EMBASE and CINAHL, from inception to February 2018, was undertaken. The methodological quality of included studies was assessed using the Consensus-based Standards for selection of health Measurement Instruments (COSMIN) checklist. RESULTS: Thirty-seven studies were identified, which included 36 different PROMs. Seven PROMs were generic, 10 disease-specific, 17 symptom-specific measures and 2 measures on dietary intake. The most common PROMs were the Short form-36 (SF-36) (n = 15) and Chronic liver disease questionnaire (CLDQ) (n = 6). Only three studies evaluated measurement properties, two studies evaluated the National Institute of Diabetes Digestive and Kidney Diseases Liver Transplant (NIDDK-QA) and one study evaluated the PSC PRO; however, according to the COSMIN guidelines, methodological quality was poor for the NIDDK-QA studies and fair for the PSC PRO study. CONCLUSION: A wide variety of PROMs have been used to assess health-related quality of life and symptom burden in patients with PSC; however only two measures (NIDDK-QA and PSC PRO) have been formally validated in this population. The newly developed PSC PRO requires further validation in PSC patients with diverse demographics, comorbidities and at different stages of disease; however this is a promising new measure with which to assess the impact of PSC on patient quality of life and symptoms.


Subject(s)
Cholangitis, Sclerosing/psychology , Patient Reported Outcome Measures , Quality of Life , Female , Humans , Male
9.
PLoS Med ; 13(11): e1002169, 2016 Nov.
Article in English | MEDLINE | ID: mdl-27846215

ABSTRACT

BACKGROUND: Stroke is a leading cause of death and disability; worldwide it is estimated that 16.9 million people have a first stroke each year. Lipid-lowering, anticoagulant, and antihypertensive drugs can prevent strokes, but may be underused. METHODS AND FINDINGS: We analysed anonymised electronic primary care records from a United Kingdom (UK) primary care database that covers approximately 6% of the UK population. Patients with first-ever stroke/transient ischaemic attack (TIA), ≥18 y, with diagnosis between 1 January 2009 and 31 December 2013, were included. Drugs were considered under-prescribed when lipid-lowering, anticoagulant, or antihypertensive drugs were clinically indicated but were not prescribed prior to the time of stroke or TIA. The proportions of strokes or TIAs with prevention drugs under-prescribed, when clinically indicated, were calculated. In all, 29,043 stroke/TIA patients met the inclusion criteria; 17,680 had ≥1 prevention drug clinically indicated: 16,028 had lipid-lowering drugs indicated, 3,194 anticoagulant drugs, and 7,008 antihypertensive drugs. At least one prevention drug was not prescribed when clinically indicated in 54% (9,579/17,680) of stroke/TIA patients: 49% (7,836/16,028) were not prescribed lipid-lowering drugs, 52% (1,647/3,194) were not prescribed anticoagulant drugs, and 25% (1,740/7,008) were not prescribed antihypertensive drugs. The limitations of our study are that our definition of under-prescribing of drugs for stroke/TIA prevention did not address patients' adherence to medication or medication targets, such as blood pressure levels. CONCLUSIONS: In our study, over half of people eligible for lipid-lowering, anticoagulant, or antihypertensive drugs were not prescribed them prior to first stroke/TIA. We estimate that approximately 12,000 first strokes could potentially be prevented annually in the UK through optimal prescribing of these drugs. Improving prescription of lipid-lowering, anticoagulant, and antihypertensive drugs is important to reduce the incidence and burden of stroke and TIA.


Subject(s)
Anticoagulants/therapeutic use , Antihypertensive Agents/therapeutic use , Drug Prescriptions/statistics & numerical data , Hypolipidemic Agents/therapeutic use , Ischemic Attack, Transient/prevention & control , Stroke/prevention & control , General Practice/statistics & numerical data , Ischemic Attack, Transient/drug therapy , Pharmaceutical Preparations/supply & distribution , Primary Prevention/statistics & numerical data , Retrospective Studies , Stroke/drug therapy , United Kingdom
10.
JRSM Open ; 15(3): 20542704241232866, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38529208

ABSTRACT

Background: Patient-reported outcomes (PROs) have potential to support integrated health and social care research and practice; however, evidence of their utilisation has not been synthesised. Objective: To identify PRO measures utilised in integrated care and adult social care research and practice and to chart the evidence of implementation factors influencing their uptake. Design: Scoping review of peer-reviewed literature. Data sources: Six databases (01 January 2010 to 19 May 2023). Study selection: Articles reporting PRO use with adults (18+ years) in integrated care or social care settings. Review methods: We screened articles against pre-specified eligibility criteria; 36 studies (23%) were extracted in duplicate for verification. We summarised the data using thematic analysis and descriptive statistics. Results: We identified 159 articles reporting on 216 PRO measures deployed in a social care or integrated care setting. Most articles used PRO measures as research tools. Eight (5.0%) articles used PRO measures as an intervention. Articles focused on community-dwelling participants (35.8%) or long-term care home residents (23.9%), with three articles (1.9%) focussing on integrated care settings. Stakeholders viewed PROs as feasible and acceptable, with benefits for care planning, health and wellbeing monitoring as well as quality assurance. Patient-reported outcome measure selection, administration and PRO data management were perceived implementation barriers. Conclusion: This scoping review showed increasing utilisation of PROs in adult social care and integrated care. Further research is needed to optimise PROs for care planning, design effective training resources and develop policies and service delivery models that prioritise secure, ethical management of PRO data.

11.
Res Involv Engagem ; 9(1): 18, 2023 Mar 30.
Article in English | MEDLINE | ID: mdl-36997975

ABSTRACT

BACKGROUND: The high incidence of COVID-19 globally has led to a large prevalence of Long COVID but there is a lack of evidence-based treatments. There is a need to evaluate existing treatments for symptoms associated with Long COVID. However, there is first a need to evaluate the feasibility of undertaking randomised controlled trials of interventions for the condition. We aimed to co-produce a feasibility study of non-pharmacological interventions to support people with Long COVID. METHODS: A consensus workshop on research prioritisation was conducted with patients and other stakeholders. This was followed by the co-production of the feasibility trial with a group of patient partners, which included the design of the study, the selection of interventions, and the production of dissemination strategies. RESULTS: The consensus workshop was attended by 23 stakeholders, including six patients. The consensus from the workshop was to develop a clinical trial platform that focused on testing different pacing interventions and resources. For the co-production of the feasibility trial, patient partners selected three pacing resources to evaluate (video, mobile application, and book) and co-designed feasibility study processes, study materials and undertook usability testing of the digital trial platform. CONCLUSION: In conclusion, this paper reports the principles and process used to co-produce a feasibility study of pacing interventions for Long COVID. Co-production was effective and influenced important aspects of the study.


The World Health Organisation defines Long COVID as a condition which impacts people 3 months after they first had COVID-19. Some of the symptoms that characterise Long COVID symptoms include fatigue, breathlessness and brain fog. These symptoms have a major impact on people's health and quality of life. Today, over 2 million people in the United Kingdom suffer from Long COVID and there is a lack of drugs and non-drugs treatment. However, some non-drugs treatments which aim to manage fatigue in other conditions, such as pacing, could be used with people with Long COVID. In this paper, we report how we co-produced a study which tested whether or not it is feasible for people who have Long COVID to use a pacing resource and report their symptoms using an electronic platform. After a meeting to review existing non-drugs treatments, the research team and a group of patient partners agreed on co-developing a clinical trial platform to test different pacing resources. The research team then met with the patient partners twice a week to co-design the study during which people with Long COVID will use the pacing resources and report their symptoms. They also co-designed the study documents and how to report its results. Co-producing a study with patient partners was effective and influenced important aspects of the study.

12.
Nat Med ; 29(8): 1922-1929, 2023 08.
Article in English | MEDLINE | ID: mdl-37474660

ABSTRACT

Patient and public involvement and engagement (PPIE) can provide valuable insights into the experiences of those living with and affected by a disease or health condition. Inclusive collaboration between patients, the public and researchers can lead to productive relationships, ensuring that health research addresses patient needs. Guidelines are available to support effective PPIE; however, evaluation of the impact of PPIE strategies in health research is limited. In this Review, we evaluate the impact of PPIE in the 'Therapies for Long COVID in non-hospitalised individuals' (TLC) Study, using a combination of group discussions and interviews with patient partners and researchers. We identify areas of good practice and reflect on areas for improvement. Using these insights and the results of a survey, we synthesize two checklists of considerations for PPIE, and we propose that research teams use these checklists to optimize the impact of PPIE for both patients and researchers in future studies.


Subject(s)
COVID-19 , Post-Acute COVID-19 Syndrome , Humans , COVID-19/epidemiology , Checklist , Patient Participation , Patients
13.
Article in English | MEDLINE | ID: mdl-36834176

ABSTRACT

BACKGROUND: Post-viral syndromes (PVS), including Long COVID, are symptoms sustained from weeks to years following an acute viral infection. Non-pharmacological treatments for these symptoms are poorly understood. This review summarises the evidence for the effectiveness of non-pharmacological treatments for PVS. METHODS: We conducted a systematic review to evaluate the effectiveness of non-pharmacological interventions for PVS, as compared to either standard care, alternative non-pharmacological therapy, or placebo. The outcomes of interest were changes in symptoms, exercise capacity, quality of life (including mental health and wellbeing), and work capability. We searched five databases (Embase, MEDLINE, PsycINFO, CINAHL, MedRxiv) for randomised controlled trials (RCTs) published between 1 January 2001 to 29 October 2021. The relevant outcome data were extracted, the study quality was appraised using the Cochrane risk-of-bias tool, and the findings were synthesised narratively. FINDINGS: Overall, five studies of five different interventions (Pilates, music therapy, telerehabilitation, resistance exercise, neuromodulation) met the inclusion criteria. Aside from music-based intervention, all other selected interventions demonstrated some support in the management of PVS in some patients. INTERPRETATION: In this study, we observed a lack of robust evidence evaluating the non-pharmacological treatments for PVS, including Long COVID. Considering the prevalence of prolonged symptoms following acute viral infections, there is an urgent need for clinical trials evaluating the effectiveness and cost-effectiveness of non-pharmacological treatments for patients with PVS. REGISTRATION: The study protocol was registered with PROSPERO [CRD42021282074] in October 2021 and published in BMJ Open in 2022.


Subject(s)
COVID-19 , Virus Diseases , Humans , Post-Acute COVID-19 Syndrome , Mental Health
14.
Article in English | MEDLINE | ID: mdl-36360742

ABSTRACT

BACKGROUND: People who have experienced a stroke or transient ischaemic attack (TIA) have greater risks of complications from COVID-19. Therefore, vaccine uptake in this vulnerable population is important. To prevent vaccine hesitancy and maximise compliance, we need to better understand individuals' views on the vaccine. OBJECTIVES: We aimed to explore perspectives of the COVID-19 vaccine and influences on its uptake from people who have experienced a stroke or TIA. METHOD: A cross-sectional, electronic survey comprising multiple choice and free text questions. Convenience sampling was used to recruit people who have experienced a stroke/TIA in the UK/Ireland. RESULTS: The survey was completed by 377 stroke/TIA survivors. 87% (328/377) had either received the first vaccine dose or were booked to have it. The vaccine was declined by 2% (7/377) and 3% (11/377) had been offered the vaccine but not yet taken it up. 8% (30/377) had not been offered the vaccine despite being eligible. Some people expressed concerns around the safety of the vaccine (particularly risk of blood clots and stroke) and some were hesitant to have the second vaccine. Societal and personal benefits were motivations for vaccine uptake. There was uncertainty and lack of information about risk of COVID-19 related complications specifically for people who have experienced a stroke or TIA. CONCLUSION: Despite high uptake of the first vaccine, some people with stroke and TIA have legitimate concerns and information needs that should be addressed. Our findings can be used to identify targets for behaviour change to improve vaccine uptake specific to stroke/TIA patients.


Subject(s)
COVID-19 , Ischemic Attack, Transient , Stroke , Humans , Ischemic Attack, Transient/epidemiology , Cross-Sectional Studies , COVID-19 Vaccines/therapeutic use , COVID-19/prevention & control , Stroke/epidemiology , Stroke/prevention & control , Stroke/complications , Survivors
15.
BMJ Open ; 12(6): e060280, 2022 06 16.
Article in English | MEDLINE | ID: mdl-35710247

ABSTRACT

INTRODUCTION: People who experience transient ischaemic attack (TIA) and minor stroke have limited follow-up despite rapid specialist review in hospital. This means they often have unmet needs and feel abandoned following discharge. Care needs after TIA/minor stroke include information provision (diagnosis and stroke risk), stroke prevention (medication and lifestyle change) and holistic care (residual problems and return to work or usual activities). This protocol describes a feasibility study and process evaluation of an intervention to support people after TIA/minor stroke. The study aims to assess the feasibility and acceptability of (1) the intervention and (2) the trial procedures for a future randomised controlled trial of this intervention. METHODS AND ANALYSIS: This is a multicentre, randomised (1:1) feasibility study with a mixed-methods process evaluation. Sixty participants will be recruited from TIA clinics or stroke wards at three hospital sites (England). Intervention arm participants will be offered a nurse or allied health professional-led follow-up appointment 4 weeks after TIA/minor stroke. The multifaceted intervention includes: a needs checklist, action plan, resources to support management of needs, a general practitioner letter and training to deliver the intervention. Control arm participants will receive usual care. Follow-up will be self-completed questionnaires (12 weeks and 24 weeks) and a clinic appointment (24 weeks). Follow-up questionnaires will measure anxiety, depression, fatigue, health related quality of life, self-efficacy and medication adherence. The clinic appointment will collect body mass index, blood pressure, cholesterol and medication. Assessment of feasibility and acceptability will include quantitative process variables (such as recruitment and questionnaire response rates), structured observations of study processes, and interviews with a subsample of participants and clinical staff. ETHICS AND DISSEMINATION: Favourable ethical opinion was gained from the Wales Research Ethics Committee (REC) 1 (23 February 2021, REC reference: 21/WA/0036). Study results will be published in peer-reviewed journals and presented at conferences. A lay summary and dissemination strategy will be codesigned with consumers. The lay summary and journal publication will be distributed on social media. TRIAL REGISTRATION NUMBER: ISRCTN39864003.


Subject(s)
Ischemic Attack, Transient , Stroke , Feasibility Studies , Follow-Up Studies , Humans , Ischemic Attack, Transient/diagnosis , Ischemic Attack, Transient/therapy , Multicenter Studies as Topic , Quality of Life , Randomized Controlled Trials as Topic , Stroke/therapy
16.
BMJ ; 377: e070230, 2022 04 27.
Article in English | MEDLINE | ID: mdl-35477524

ABSTRACT

OBJECTIVE: To describe the development and validation of a novel patient reported outcome measure for symptom burden from long covid, the symptom burden questionnaire for long covid (SBQ-LC). DESIGN: Multiphase, prospective mixed methods study. SETTING: Remote data collection and social media channels in the United Kingdom, 14 April to 1 August 2021. PARTICIPANTS: 13 adults (aged ≥18 years) with self-reported long covid and 10 clinicians evaluated content validity. 274 adults with long covid field tested the draft questionnaire. MAIN OUTCOME MEASURES: Published systematic reviews informed development of SBQ-LC's conceptual framework and initial item pool. Thematic analysis of transcripts from cognitive debriefing interviews and online clinician surveys established content validity. Consensus discussions with the patient and public involvement group of the Therapies for Long COVID in non-hospitalised individuals: From symptoms, patient reported outcomes and immunology to targeted therapies (TLC Study) confirmed face validity. Rasch analysis of field test data guided item and scale refinement and provided initial evidence of the SBQ-LC's measurement properties. RESULTS: SBQ-LC (version 1.0) is a modular instrument measuring patient reported outcomes and is composed of 17 independent scales with promising psychometric properties. Respondents rate their symptom burden during the past seven days using a dichotomous response or 4 point rating scale. Each scale provides coverage of a different symptom domain and returns a summed raw score that can be transformed to a linear (0-100) score. Higher scores represent higher symptom burden. After rating scale refinement and item reduction, all scales satisfied the Rasch model requirements for unidimensionality (principal component analysis of residuals: first residual contrast values <2.00 eigenvalue units) and item fit (outfit mean square values within 0.5 -1.5 logits). Rating scale categories were ordered with acceptable category fit statistics (outfit mean square values <2.0 logits). 14 item pairs had evidence of local dependency (residual correlation values >0.4). Across the 17 scales, person reliability ranged from 0.34 to 0.87, person separation ranged from 0.71 to 2.56, item separation ranged from 1.34 to 13.86, and internal consistency reliability (Cronbach's alpha) ranged from 0.56 to 0.91. CONCLUSIONS: SBQ-LC (version 1.0) is a comprehensive patient reported outcome instrument developed using modern psychometric methods. It measures symptoms of long covid important to people with lived experience of the condition and may be used to evaluate the impact of interventions and inform best practice in clinical management.


Subject(s)
COVID-19 , Adolescent , Adult , COVID-19/complications , Humans , Prospective Studies , Reproducibility of Results , Surveys and Questionnaires , Post-Acute COVID-19 Syndrome
17.
Nat Med ; 28(8): 1706-1714, 2022 08.
Article in English | MEDLINE | ID: mdl-35879616

ABSTRACT

Severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) infection is associated with a range of persistent symptoms impacting everyday functioning, known as post-COVID-19 condition or long COVID. We undertook a retrospective matched cohort study using a UK-based primary care database, Clinical Practice Research Datalink Aurum, to determine symptoms that are associated with confirmed SARS-CoV-2 infection beyond 12 weeks in non-hospitalized adults and the risk factors associated with developing persistent symptoms. We selected 486,149 adults with confirmed SARS-CoV-2 infection and 1,944,580 propensity score-matched adults with no recorded evidence of SARS-CoV-2 infection. Outcomes included 115 individual symptoms, as well as long COVID, defined as a composite outcome of 33 symptoms by the World Health Organization clinical case definition. Cox proportional hazards models were used to estimate adjusted hazard ratios (aHRs) for the outcomes. A total of 62 symptoms were significantly associated with SARS-CoV-2 infection after 12 weeks. The largest aHRs were for anosmia (aHR 6.49, 95% CI 5.02-8.39), hair loss (3.99, 3.63-4.39), sneezing (2.77, 1.40-5.50), ejaculation difficulty (2.63, 1.61-4.28) and reduced libido (2.36, 1.61-3.47). Among the cohort of patients infected with SARS-CoV-2, risk factors for long COVID included female sex, belonging to an ethnic minority, socioeconomic deprivation, smoking, obesity and a wide range of comorbidities. The risk of developing long COVID was also found to be increased along a gradient of decreasing age. SARS-CoV-2 infection is associated with a plethora of symptoms that are associated with a range of sociodemographic and clinical risk factors.


Subject(s)
COVID-19 , Adult , COVID-19/complications , COVID-19/epidemiology , Cohort Studies , Ethnicity , Female , Humans , Male , Minority Groups , Retrospective Studies , Risk Factors , SARS-CoV-2 , Post-Acute COVID-19 Syndrome
18.
BJGP Open ; 5(1)2021 Jan.
Article in English | MEDLINE | ID: mdl-33199306

ABSTRACT

BACKGROUND: The recently announced long-term plan for the NHS is based on a model of person-centred care, which relies on the sustained engagement of patients, shared decision making, and capability for self-management. For a primary care service under increasing pressure from an ageing and chronically ill population, Patient Reported Outcome Measures (PROMs) appear capable of supporting many of the requirements for person-centred care, yet little is known of the circumstances of their current implementation or how their use might be optimised. AIM: To begin the conversation about how successfully PROMs have been integrated into primary care and how their use might be supported. DESIGN & SETTING: A qualitative investigation of the perspectives of GPs exploring the use of PROMs as part of routine clinical care in England. METHOD: Semi-structured telephone interviews were conducted with GPs from across England. The data were analysed using the Consolidated Framework for Implementation Research (CFIR). RESULTS: A total of 25 interviews were conducted and GPs described the potential benefit of PROMs in a range of circumstances, but also voiced concerns about their reliability and their potential to constrain consultations. Their flexibility meant they had the potential to be incorporated into existing care processes but only with the requisite logistical support. CONCLUSION: Areas that need to be addressed include the creation of a compelling body of evidence of the benefit of PROMs, appropriate training for staff and patients, and a coherent implementation strategy from policymakers and funding bodies.

19.
Int J Stroke ; 16(4): 370-384, 2021 06.
Article in English | MEDLINE | ID: mdl-33705244

ABSTRACT

BACKGROUND: Traumatic brain injury is a global health problem; worldwide, >60 million people experience a traumatic brain injury each year and incidence is rising. Traumatic brain injury has been proposed as an independent risk factor for stroke. AIMS: To investigate the association between traumatic brain injury and stroke risk. SUMMARY OF REVIEW: We undertook a systematic review of MEDLINE, EMBASE, CINAHL, and The Cochrane Library from inception to 4 December 2020. We used random-effects meta-analysis to pool hazard ratios for studies which reported stroke risk post-traumatic brain injury compared to controls. Searches identified 10,501 records; 58 full texts were assessed for eligibility and 18 met the inclusion criteria. The review included a large sample size of 2,606,379 participants from four countries. Six studies included a non-traumatic brain injury control group, all found traumatic brain injury patients had significantly increased risk of stroke compared to controls (pooled hazard ratio 1.86; 95% confidence interval 1.46-2.37). Findings suggest stroke risk may be highest in the first four months post-traumatic brain injury, but remains significant up to five years post-traumatic brain injury. Traumatic brain injury appears to be associated with increased stroke risk regardless of severity or subtype of traumatic brain injury. There was some evidence to suggest an association between reduced stroke risk post-traumatic brain injury and Vitamin K antagonists and statins, but increased stroke risk with certain classes of antidepressants. CONCLUSION: Traumatic brain injury is an independent risk factor for stroke, regardless of traumatic brain injury severity or type. Post-traumatic brain injury review and management of risk factors for stroke may be warranted.


Subject(s)
Brain Injuries, Traumatic , Brain Injuries , Stroke , Brain Injuries/complications , Brain Injuries/epidemiology , Brain Injuries, Traumatic/complications , Brain Injuries, Traumatic/epidemiology , Humans , Stroke/epidemiology , Stroke/etiology
20.
BMJ Open ; 11(4): e045206, 2021 04 13.
Article in English | MEDLINE | ID: mdl-33849854

ABSTRACT

INTRODUCTION: Patient-reported outcomes (PROs) are measures of a person's own views of their health, functioning and quality of life. They are typically assessed using validated, self-completed questionnaires known as patient-reported outcome measures (PROMs). PROMs are used in healthcare settings to support care planning, clinical decision-making, patient-practitioner communication and quality improvement. PROMs have a potential role in the delivery of social care where people often have multiple and complex long-term health conditions. However, the use of PROMs in this context is currently unclear. The objective of this scoping review is to explore the evidence relating to the use of PROMs in adult social care. METHODS AND ANALYSES: The electronic databases Medline (Ovid), PsychInfo (Ovid), ASSIA (ProQuest), Social Care Online (SCIE), Web of Science and EMBASE (Ovid) were searched on 29 September 2020 to identify eligible studies and other publically available documents published since 2010. A grey literature search and hand searching of citations and reference lists of the included studies will also be undertaken. No restrictions on study design or language of publication will be applied. Screening and data extraction will be completed independently by two reviewers. Quality appraisal of the included documents will use the Critical Appraisal Skills Programme and AACODS (Authority, Accuracy, Coverage, Objectivity, Date, Significance) checklists. A customised data charting table will be used for data extraction, with analysis of qualitative data using the framework method. The review findings will be presented as tables and in a narrative summary. ETHICS AND DISSEMINATION: Ethical review is not required as scoping reviews are a form of secondary data analysis that synthesise data from publically available sources. Review findings will be shared with service users and other relevant stakeholders and disseminated through a peer-reviewed publication and conference presentations. This protocol is registered on the Open Science Framework (www.osf.io).


Subject(s)
Patient Reported Outcome Measures , Quality of Life , Adult , Humans , Research Design , Review Literature as Topic , Social Support , Surveys and Questionnaires
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