Aim: To examine the experiences of health care professional (HCP)-patient interactions in Multiple Sclerosis (MS), identifying factors that can influence these interactions. Methods: A three-stage systematic review an...Aim: To examine the experiences of health care professional (HCP)-patient interactions in Multiple Sclerosis (MS), identifying factors that can influence these interactions. Methods: A three-stage systematic review and thematic synthesis of qualitative and quantitative research was undertaken. Stage 1: the systematic literature search;Stage 2: methodological appraisal of the qualitative papers;Stage 3: thematic synthesis of all qualitative papers and the integration of quantitative findings into the synthesis. Results: Forty-nine qualitative studies were identified. This included 1014 individuals with MS (244 male, 755 female and 15 unknown) and 106 carers and 86 HCPs. Seventeen quantitative studies were identified which included 7680 (2008 male, 5812 females, and 40 unknown) participants as well as 224 carers. Two themes are discussed: 1) The expectations, experiences and perceptions of interactions with HCPs, and 2) The factors that influenced interactions and relationships. Discussion: There is need for improvement in the content and provision of information to patients with MS from HCPs. Specific strategies are suggested and implications for patients and health care providers are considered.展开更多
Background:Physical activity(PA)is generally encouraged.Studies from developed countries in the West have shown that maintenance of adequate PA or increasing PA are associated with lower mortality risk.It is unclear w...Background:Physical activity(PA)is generally encouraged.Studies from developed countries in the West have shown that maintenance of adequate PA or increasing PA are associated with lower mortality risk.It is unclear whether these associations apply to an older Chinese population.Hence,we examined the changes in PA prospectively among a middle-aged and older Chinese population over an average of 4 years and explored their subsequent mortality risks.Methods:Metabolic equivalent scores of PA among participants in the Guangzhou Biobank Cohort Study were calculated.Participants were divided into 3 groups related to PA level,and changes in PA were classified into 9 categories.Information on vital status and causes of death from March 2008 to December 2012(the first repeated examination)until December 31,2017,was obtained via record linkage with the Death Registry.Results:Of 18,104 participants aged 61.21±6.85 years(mean±SD),1461 deaths occurred within 141,417 person-years.Compared to participants who maintained moderate PA,those who decreased PA from moderate or high levels to a low level had increased risks for all-cause mortality(hazard ratio(HR)=1.47,95%confidence interval(95%CI):1.11-1.96).Participants who maintained a high level of PA(HR=0.83,95%CI:0.70-0.98)or increased PA from low to high levels(HR=0.71,95%CI:0.52-0.97)showed lower all-cause mortality risks.Those who maintained low PA levels showed a higher all-cause mortality risk,whereas those who increased their PA levels showed a non-significantly lower risk.Similar results were found for cardiovascular disease risk.Conclusion:Even at an older age,maintaining a high PA level or increasing PA from low to high levels results in lower mortality risks,suggesting that substantial health benefits might be achieved by maintaining or increasing engagement in adequate levels of PA.The increased risk of maintaining a low PA level or decreasing PA to a low level warrants the attention of public health officials and clinicians.展开更多
Subsegmental pulmonary embolism(SSPE) affects the 4 th division and more distal pulmonary arterial branches. SSPE can be isolated or affect multiple subsegments, be symptomatic or incidental(unsuspected) and may or ma...Subsegmental pulmonary embolism(SSPE) affects the 4 th division and more distal pulmonary arterial branches. SSPE can be isolated or affect multiple subsegments, be symptomatic or incidental(unsuspected) and may or may not be associated with deep vein thrombosis. Symptoms, clinical risk scores and biomarkers are less sensitive for diagnosing SSPE compared to more central pulmonary embolism. The diagnosis is confirmed using radiological imaging,predominately computed tomographic pulmonary angiogram(CTPA) or ventilation/perfusion scanning. The increasing utilization of CTPAs may have resulted in overdiagnosis driven by smaller pulmonary emboli. There is insufficient evidence of improved mortality or reduced venous thromboembolism recurrence with anticoagulation treatment for SSPE however,the major and clinically significant haemorrhage risks are well described. As the resolution of diagnostic imaging has improved, we may be viewing the natural physiological filtering process performed by the lungs that may not require treatment.展开更多
AIM To systematically review literature for management of alpha-1 antitrypsin deficiency(AATD) panniculitis. METHODS Multiple databases were searched using combinations of pertinent terms. Articles were selected descr...AIM To systematically review literature for management of alpha-1 antitrypsin deficiency(AATD) panniculitis. METHODS Multiple databases were searched using combinations of pertinent terms. Articles were selected describing panniculitis treatment in patients with AAT < 11 μmol and/or PiZZ genotype, with no language limitation. All relevant articles were accessed in full text. Independent review of abstracts and full manuscripts was conducted by 2 reviewers, and quality assessment by one reviewer(checked by a second). Data extraction was conducted byone reviewer(checked by a second). Narrative synthesis only was conducted, as data were unsuitable for metaanalysis.RESULTS Thirty-two case reports and 4 case series were found. Augmentation therapy(infusions of plasma-derived AAT) was the most successful, with complete resolution of symptoms in all patients. Dapsone is a less expensive option, and it achieved clinical resolution in 62% of patients, but it is very poorly tolerated. Among other single-agent antibiotics, doxycycline was the most successful with complete clinical resolution seen in 33% of patients. Immunosuppressants were largely unsuccessful; 80% of patients exhibited no response. Liver transplantation and therapeutic plasma exchange displayed complete resolution in 66% of patients. Other strategies, such as non-steroidal anti-inflammatory drugs or antibiotics other than dapsone did not show sufficient response rates to recommend their use. Authors note the risk of bias imposed by the type of evidence(case reports, case series) available in this field.CONCLUSION Dapsone is the recommended first line therapy for AATD panniculitis, followed by augmentation therapy. Plasma exchange may be an alternative in the setting of rapidly progressive disease.展开更多
Background:There have been several attempts to define core outcome domains for use in research focused on adult burns.Some have been based in expert opinion,whilst others have used primary qualitative research to unde...Background:There have been several attempts to define core outcome domains for use in research focused on adult burns.Some have been based in expert opinion,whilst others have used primary qualitative research to understand patients’perspectives on outcomes.To date there has not been a systematic review of qualitative research in burns to identify a comprehensive list of patientcentred outcome domains.We therefore conducted a systematic review of qualitative research studies in adult burns.Methods:We searched multiple databases for English-language,peer-reviewed,qualitative research papers.We used search strategies devised using the SPIDER tool for qualitative synthesis.Our review utilized an iterative three-step approach:(1)outcome-focused coding;(2)development of descriptive accounts of outcome-relevant issues;and(3)revisiting studies and the broader theoretical literature in order to frame the review findings.Results:Forty-one articles were included.We categorized papers according to their primary focus.The category with the most papers was adaptation to life following burn injury(n=13).We defined 19 outcome domains across the 41 articles:(1)sense of self;(2)emotional and psychological morbidity;(3)sensory;(4)scarring and scar characteristics;(5)impact on relationships;(6)mobility and range of joint motion;(7)work;(8)activities of daily living and self-care;(9)treatment burden;(10)engagement in activities;(11)wound healing and infection;(12)other physical manifestations;(13)financial impact;(14)impact on spouses and family members;(15)analgesia and side effects;(16)cognitive skills;(17)length of hospital stay;(18)access to healthcare;and(19)speech and communication.We suggest that sense of self is a core concern for patients that,to date,has not been clearly conceptualized in the burns outcome domain literature.Conclusions:This outcome domain framework identifies domains that are not covered in previous attempts to outline core outcome domains for adult burn research.It does so with reference to existing theoretical perspectives from the sociology and psychology of medicine.We propose that this framework can be used as a basis to ensure that outcome assessment is patient-centred.Sense of self requires further consideration as a core outcome domain.展开更多
Objective:We investigate(1)the influence of ethnic,gender,and age concordance with inter-viewers and(2)how expression of qualitative data varies between interviews delivered in English and community languages(Punjabi/...Objective:We investigate(1)the influence of ethnic,gender,and age concordance with inter-viewers and(2)how expression of qualitative data varies between interviews delivered in English and community languages(Punjabi/Urdu)with monolingual and bilingual participants across three generations of the Indian Sikh and Pakistani Muslim communities living in the UK.Methods:We analyzed and interpreted semi-structured interview transcripts that were designed to collect data about lifestyles,disease management,community practices/beliefs,and social net-works.First,qualitative content analysis was applied to transcripts.Second,a framework was ap-plied as a guide to identify cross-language illustrations where responses varied in length,expression and depth.Results:Participant responses differed by language and topic.First-generation migrants when discussing religion,culture,or family practice were far likelier to use group or community narra-tives and give a longer response,indicating familiarity with or importance of such issues.Ethnic and gender concordance generated greater rapport between researchers and participants centered on community values and practices.Further,open-ended questions that were less direct were better suited for first-generation migrants.Conclusion:Community-based researchers need more time to complete interviews in second languages,need to acknowledge that narratives can be contextualized in both personal and com-munity views,and reframe questions that may lead to greater expression.Furthermore,we detail a number of recommendations with regard to validating the translation of interviews from commu-nity languages to English as well as measures for testing language proficiency.展开更多
Chronic obstructive pulmonary disease(COPD)is one of the leading causes of mortality and morbidity worldwide.One of the most important features of this disease is exacerbations where a patient’s respiratory symptoms ...Chronic obstructive pulmonary disease(COPD)is one of the leading causes of mortality and morbidity worldwide.One of the most important features of this disease is exacerbations where a patient’s respiratory symptoms episodically worsen.Exacerbations accounted for over 140000 hospital admissions in 2012 in the United Kingdom with considerably more exacerbations being treated in primary care.Despite significant research in this area in recent years,treatment of acute exacerbations in the community remains limited to oral glucocorticoids,antibiotics and bronchodilators.One of the issues with unpicking the complexity of exacerbations is trying to find out the exact underlying cause and mechanism that leads to symptoms and lung destruction.Currently symptoms are initially guided by symptoms alone though multiple causes of exacerbations have common presentations.This includes viral and bacterial infections and episodes relating to environmental triggers such as pollen and pollution.There is also evidence that cardiovascular factors can contribute to symptoms of breathlessness that can mimic COPD exacerbations.In this editorial we discuss recent advances in the use of precision medicine to more accurately treat exacerbations of COPD.This includes identification of phenotypes that could help rationalise treatment and more importantly identify novel drug targets.We also consider the future role of precision medicine in preventing exacerbations and identifying COPD patients that are at increased risk of developing them.展开更多
It is increasingly recognised that collecting patient reported outcome measures(PROMs)data is an important part of healthcare and should be considered alongside traditional clinical assessments.As part of a more holis...It is increasingly recognised that collecting patient reported outcome measures(PROMs)data is an important part of healthcare and should be considered alongside traditional clinical assessments.As part of a more holistic view of healthcare provision,there has been an increased drive to implement PROM collection as part of routine clinical care in hepatology.This drive has resulted in an increase in the number of PROMs currently developed to be used in various liver conditions.However,the development and validation of a new PROM is time-consuming and costly.Therefore,before deciding to develop a new PROM,researchers should consider identifying existing PROMs to assess their appropriateness and,if necessary,make adaptations to existing PROMs to ensure their rigour when used with the target population.Little is written in the literature on how to identify and adapt the existing PROMs in hepatology.This article aims to provide a summary of the current literature and guidance regarding identifying and adapting existing PROMs in clinical practice.展开更多
Purpose: To develop and test the face and content validity of a scale that assesses an individual’s adaptation and expression of hope to a life changing events, disease or trauma. Method: The Hope and Adaptation Scal...Purpose: To develop and test the face and content validity of a scale that assesses an individual’s adaptation and expression of hope to a life changing events, disease or trauma. Method: The Hope and Adaptation Scale was developed and tested across three stages. Stage 1 involved the use of a review of literature to conceptually map the tool. Stage 2 required exploratory investigations of the questionnaire by members of an expert panel. Stage 3 assessed the construct validity of the resulting scale. Results: Through the processes of Stage 1 and 2, the tool was developed and reduced to a 3-item scale that assessed a spectrum of hope-related responses and a spectrum of adaptation-related responses. Stage 3 identified fifteen independent health care professionals who assessed the scale. The content validity index of the resultant scale was 0.6 that was above the required level to be acceptable. The hope spectrum responses scored the highest content validity ratio (0.73). Discussion: The proposed scale appears to have face and content validity for application to a various number of events, disease or trauma experiences. Further testing of the scale is required for application in specific population groups.展开更多
Background:Problematic scarring remains a challenging aspect to address in the treatment of burns and can significantly affect the quality of life of the burn survivor.At present,there are few treatments available in ...Background:Problematic scarring remains a challenging aspect to address in the treatment of burns and can significantly affect the quality of life of the burn survivor.At present,there are few treatments available in the clinic to control adverse scarring,but experimental pharmacological anti-scarring strategies are now beginning to emerge.Their comparative success must be based on objective measurements of scarring,yet currently the clinical assessment of scars is not carried out systematically and is mostly based on subjective review of patients.However,several techniques and devices are being introduced that allow objective analysis of the burn scar.The aim of this article is to evaluate various objective measurement tools currently available and recommend a useful panel that is suitable for use in clinical trials of anti-scarring therapies.Methods:A systematic literature search was done using the Web of Science,PubMed and Cochrane databases.The identified devices were then classified and grouped according to the parameters they measured.The tools were then compared and assessed in terms of inter-and intra-rater reproducibility,ease of use and cost.Results:After duplicates were removed,5062 articles were obtained in the search.After further screening,157 articles which utilised objective burn scar measurement systems or tools were obtained.The scar measurement devices can be broadly classified into those measuring colour,metric variables,texture,biomechanical properties and pathophysiological disturbances.Conclusions:Objective scar measurement tools allow the accurate and reproducible evaluation of scars,which is important for both clinical and scientific use.However,studies to evaluate their relative performance and merits of these tools are scarce,and there remain factors,such as itch and pain,which cannot be measured objectively.On reviewing the available evidence,a panel of devices for objective scar measurement is recommended consisting of the 3D cameras(Eykona/Lifeviz/Vectra H1)for surface area and volume,DSM I colorimeter for colour,Dermascan high-frequency ultrasound for scar thickness and Cutometer for skin elasticity and pliability.展开更多
Background:Scar assessment plays a key role during burns aftercare,to monitor scar remodelling and patients’psychosocial well-being.To aid assessment,subjective scar assessment scales are available that use health-ca...Background:Scar assessment plays a key role during burns aftercare,to monitor scar remodelling and patients’psychosocial well-being.To aid assessment,subjective scar assessment scales are available that use health-care professionals’and patients’opinions to score scar characteristics.The subjective scales are more widely used in clinical practice over objective scar measures.To date,there is no research that considers patients’views on scar assessment and the role of subjective and objective assessment tools.Therefore,the aim of this qualitative study was to explore patients’perspectives on scar assessment and the utility of scar assessment tools during burns rehabilitation.Methods:Semi-structured interviews were conducted with 10 adult burn patients who were being reviewed in clinic for scarring.Participants were recruited via their clinical care team and research nurses at the Queen Elizabeth Hospital,Birmingham,UK.Topics covered during interview included patient experience of scar assessment,the use of scar assessment tools and discussion surrounding important factors to be addressed when assessing scars.A thematic analysis using the Framework Method was conducted.Results:Participants identified key subthemes that contribute towards the overarching theme of patient-centred scar assessment.These are:patient-led care;continuity in care;learning how to self-manage scarring;and psychological assessment.Links were demonstrated between these subthemes and the remaining themes that describe scar assessment strategies,indicating their potential patient-centred contributions.The subjective opinions of clinicians were found to be valued above the use of subjective or objective scar assessment tools.Scar assessment scales were perceived to be a beneficial method for self-reflection in relation to psychosocial function-ing.However,minimal feedback and review of completed assessment scales led to uncertainty regarding their purpose.Patients perceived objective tools to be of primary use for health-care professionals,though the measures may aid patients’understanding of scar properties.Conclusions:Scar assessment tools should be used to support,rather than replace,health-care professionals’subjective judgements of scarring.Adapting the way in which clinicians introduce and use scar assessment tools,according to patient needs,can support a patient-centred approach to scar assessment.展开更多
Background:Burn injuries are a leading cause of morbidity and disability,with the burden of disease being disproportionately higher in low-and middle-income countries(LMIC).Burn prevention programmes have led to signi...Background:Burn injuries are a leading cause of morbidity and disability,with the burden of disease being disproportionately higher in low-and middle-income countries(LMIC).Burn prevention programmes have led to significant reductions in the incidence of burns in high-income countries.However,a previous systematic review published in 2015 highlighted that implementation and evaluation of similar programmes has been limited in LMIC.The objective of this scoping review and narrative synthesis was to summarise and understand the initiatives that have been carried out to reduce burn injuries in LMIC and their effectiveness.Methods:We aimed to identify publications that described studies of effectiveness of burn prevention interventions applied to any population within a LMIC and measured burn incidence or burns-related outcomes.Suitable publications were identified from three sources.Firstly,data was extracted from manuscripts identified in the systematic review published by Rybarczyk et al.We then performed a search for manuscripts on burn prevention interventions published between January 2015 and September 2020.Finally,we extracted data from two systematic reviews where burn evidence was not the primary outcome,which were identified by senior authors.A quality assessment and narrative synthesis of included manuscripts were performed.Results:In total,24 manuscripts were identified and categorized according to intervention type.The majority of manuscripts(n=16)described education-based interventions.Four manuscripts focused on environmental modification interventions and four adopted a mixedmethods approach.All of the education-based initiatives demonstrated improvements in knowledge relating to burn safety or first aid,however few measured the impact of their intervention on burn incidence.Four manuscripts described population-based educational interventions and noted reductions in burn incidence.Only one of the four manuscripts describing environmental modification interventions reported burns as a primary outcome measure,noting a reduction in burn incidence.All mixed-method interventions demonstrated some positive improvements in either burn incidence or burns-related safety practices.Conclusion:There is a lack of published literature describing large-scale burn prevention programmes in LMIC that can demonstrate sustained reductions in burn incidence.Populationlevel,collaborative projects are necessary to drive forward burn prevention through specific environmental or legislative changes and supplementary educational programmes.展开更多
文摘Aim: To examine the experiences of health care professional (HCP)-patient interactions in Multiple Sclerosis (MS), identifying factors that can influence these interactions. Methods: A three-stage systematic review and thematic synthesis of qualitative and quantitative research was undertaken. Stage 1: the systematic literature search;Stage 2: methodological appraisal of the qualitative papers;Stage 3: thematic synthesis of all qualitative papers and the integration of quantitative findings into the synthesis. Results: Forty-nine qualitative studies were identified. This included 1014 individuals with MS (244 male, 755 female and 15 unknown) and 106 carers and 86 HCPs. Seventeen quantitative studies were identified which included 7680 (2008 male, 5812 females, and 40 unknown) participants as well as 224 carers. Two themes are discussed: 1) The expectations, experiences and perceptions of interactions with HCPs, and 2) The factors that influenced interactions and relationships. Discussion: There is need for improvement in the content and provision of information to patients with MS from HCPs. Specific strategies are suggested and implications for patients and health care providers are considered.
基金supported by the National Natural Science Foundation (No.81941019)the National Key R&D Program of China (No.2017YFC0907100)+3 种基金the Natural Science Foundation of Guangdong (No.2018A030313140)the Guangzhou Science and Technology Bureau,Guangzhou,China (No.201704030132)the Major Infectious Disease Prevention and Control of the National Science and Technique Major Project (No.2018ZX10715004)the University of Birmingham,UK
文摘Background:Physical activity(PA)is generally encouraged.Studies from developed countries in the West have shown that maintenance of adequate PA or increasing PA are associated with lower mortality risk.It is unclear whether these associations apply to an older Chinese population.Hence,we examined the changes in PA prospectively among a middle-aged and older Chinese population over an average of 4 years and explored their subsequent mortality risks.Methods:Metabolic equivalent scores of PA among participants in the Guangzhou Biobank Cohort Study were calculated.Participants were divided into 3 groups related to PA level,and changes in PA were classified into 9 categories.Information on vital status and causes of death from March 2008 to December 2012(the first repeated examination)until December 31,2017,was obtained via record linkage with the Death Registry.Results:Of 18,104 participants aged 61.21±6.85 years(mean±SD),1461 deaths occurred within 141,417 person-years.Compared to participants who maintained moderate PA,those who decreased PA from moderate or high levels to a low level had increased risks for all-cause mortality(hazard ratio(HR)=1.47,95%confidence interval(95%CI):1.11-1.96).Participants who maintained a high level of PA(HR=0.83,95%CI:0.70-0.98)or increased PA from low to high levels(HR=0.71,95%CI:0.52-0.97)showed lower all-cause mortality risks.Those who maintained low PA levels showed a higher all-cause mortality risk,whereas those who increased their PA levels showed a non-significantly lower risk.Similar results were found for cardiovascular disease risk.Conclusion:Even at an older age,maintaining a high PA level or increasing PA from low to high levels results in lower mortality risks,suggesting that substantial health benefits might be achieved by maintaining or increasing engagement in adequate levels of PA.The increased risk of maintaining a low PA level or decreasing PA to a low level warrants the attention of public health officials and clinicians.
文摘Subsegmental pulmonary embolism(SSPE) affects the 4 th division and more distal pulmonary arterial branches. SSPE can be isolated or affect multiple subsegments, be symptomatic or incidental(unsuspected) and may or may not be associated with deep vein thrombosis. Symptoms, clinical risk scores and biomarkers are less sensitive for diagnosing SSPE compared to more central pulmonary embolism. The diagnosis is confirmed using radiological imaging,predominately computed tomographic pulmonary angiogram(CTPA) or ventilation/perfusion scanning. The increasing utilization of CTPAs may have resulted in overdiagnosis driven by smaller pulmonary emboli. There is insufficient evidence of improved mortality or reduced venous thromboembolism recurrence with anticoagulation treatment for SSPE however,the major and clinically significant haemorrhage risks are well described. As the resolution of diagnostic imaging has improved, we may be viewing the natural physiological filtering process performed by the lungs that may not require treatment.
文摘AIM To systematically review literature for management of alpha-1 antitrypsin deficiency(AATD) panniculitis. METHODS Multiple databases were searched using combinations of pertinent terms. Articles were selected describing panniculitis treatment in patients with AAT < 11 μmol and/or PiZZ genotype, with no language limitation. All relevant articles were accessed in full text. Independent review of abstracts and full manuscripts was conducted by 2 reviewers, and quality assessment by one reviewer(checked by a second). Data extraction was conducted byone reviewer(checked by a second). Narrative synthesis only was conducted, as data were unsuitable for metaanalysis.RESULTS Thirty-two case reports and 4 case series were found. Augmentation therapy(infusions of plasma-derived AAT) was the most successful, with complete resolution of symptoms in all patients. Dapsone is a less expensive option, and it achieved clinical resolution in 62% of patients, but it is very poorly tolerated. Among other single-agent antibiotics, doxycycline was the most successful with complete clinical resolution seen in 33% of patients. Immunosuppressants were largely unsuccessful; 80% of patients exhibited no response. Liver transplantation and therapeutic plasma exchange displayed complete resolution in 66% of patients. Other strategies, such as non-steroidal anti-inflammatory drugs or antibiotics other than dapsone did not show sufficient response rates to recommend their use. Authors note the risk of bias imposed by the type of evidence(case reports, case series) available in this field.CONCLUSION Dapsone is the recommended first line therapy for AATD panniculitis, followed by augmentation therapy. Plasma exchange may be an alternative in the setting of rapidly progressive disease.
文摘Background:There have been several attempts to define core outcome domains for use in research focused on adult burns.Some have been based in expert opinion,whilst others have used primary qualitative research to understand patients’perspectives on outcomes.To date there has not been a systematic review of qualitative research in burns to identify a comprehensive list of patientcentred outcome domains.We therefore conducted a systematic review of qualitative research studies in adult burns.Methods:We searched multiple databases for English-language,peer-reviewed,qualitative research papers.We used search strategies devised using the SPIDER tool for qualitative synthesis.Our review utilized an iterative three-step approach:(1)outcome-focused coding;(2)development of descriptive accounts of outcome-relevant issues;and(3)revisiting studies and the broader theoretical literature in order to frame the review findings.Results:Forty-one articles were included.We categorized papers according to their primary focus.The category with the most papers was adaptation to life following burn injury(n=13).We defined 19 outcome domains across the 41 articles:(1)sense of self;(2)emotional and psychological morbidity;(3)sensory;(4)scarring and scar characteristics;(5)impact on relationships;(6)mobility and range of joint motion;(7)work;(8)activities of daily living and self-care;(9)treatment burden;(10)engagement in activities;(11)wound healing and infection;(12)other physical manifestations;(13)financial impact;(14)impact on spouses and family members;(15)analgesia and side effects;(16)cognitive skills;(17)length of hospital stay;(18)access to healthcare;and(19)speech and communication.We suggest that sense of self is a core concern for patients that,to date,has not been clearly conceptualized in the burns outcome domain literature.Conclusions:This outcome domain framework identifies domains that are not covered in previous attempts to outline core outcome domains for adult burn research.It does so with reference to existing theoretical perspectives from the sociology and psychology of medicine.We propose that this framework can be used as a basis to ensure that outcome assessment is patient-centred.Sense of self requires further consideration as a core outcome domain.
基金funded by the University of Birmingham and the National Institute for Health Research(NIHR)through the Collaborations for Leadership in Applied Health Research and Care West Midlands program.Primary Care Clinical Sciences is a member of the NIHR School for Primary Care Research.
文摘Objective:We investigate(1)the influence of ethnic,gender,and age concordance with inter-viewers and(2)how expression of qualitative data varies between interviews delivered in English and community languages(Punjabi/Urdu)with monolingual and bilingual participants across three generations of the Indian Sikh and Pakistani Muslim communities living in the UK.Methods:We analyzed and interpreted semi-structured interview transcripts that were designed to collect data about lifestyles,disease management,community practices/beliefs,and social net-works.First,qualitative content analysis was applied to transcripts.Second,a framework was ap-plied as a guide to identify cross-language illustrations where responses varied in length,expression and depth.Results:Participant responses differed by language and topic.First-generation migrants when discussing religion,culture,or family practice were far likelier to use group or community narra-tives and give a longer response,indicating familiarity with or importance of such issues.Ethnic and gender concordance generated greater rapport between researchers and participants centered on community values and practices.Further,open-ended questions that were less direct were better suited for first-generation migrants.Conclusion:Community-based researchers need more time to complete interviews in second languages,need to acknowledge that narratives can be contextualized in both personal and com-munity views,and reframe questions that may lead to greater expression.Furthermore,we detail a number of recommendations with regard to validating the translation of interviews from commu-nity languages to English as well as measures for testing language proficiency.
文摘Chronic obstructive pulmonary disease(COPD)is one of the leading causes of mortality and morbidity worldwide.One of the most important features of this disease is exacerbations where a patient’s respiratory symptoms episodically worsen.Exacerbations accounted for over 140000 hospital admissions in 2012 in the United Kingdom with considerably more exacerbations being treated in primary care.Despite significant research in this area in recent years,treatment of acute exacerbations in the community remains limited to oral glucocorticoids,antibiotics and bronchodilators.One of the issues with unpicking the complexity of exacerbations is trying to find out the exact underlying cause and mechanism that leads to symptoms and lung destruction.Currently symptoms are initially guided by symptoms alone though multiple causes of exacerbations have common presentations.This includes viral and bacterial infections and episodes relating to environmental triggers such as pollen and pollution.There is also evidence that cardiovascular factors can contribute to symptoms of breathlessness that can mimic COPD exacerbations.In this editorial we discuss recent advances in the use of precision medicine to more accurately treat exacerbations of COPD.This includes identification of phenotypes that could help rationalise treatment and more importantly identify novel drug targets.We also consider the future role of precision medicine in preventing exacerbations and identifying COPD patients that are at increased risk of developing them.
文摘It is increasingly recognised that collecting patient reported outcome measures(PROMs)data is an important part of healthcare and should be considered alongside traditional clinical assessments.As part of a more holistic view of healthcare provision,there has been an increased drive to implement PROM collection as part of routine clinical care in hepatology.This drive has resulted in an increase in the number of PROMs currently developed to be used in various liver conditions.However,the development and validation of a new PROM is time-consuming and costly.Therefore,before deciding to develop a new PROM,researchers should consider identifying existing PROMs to assess their appropriateness and,if necessary,make adaptations to existing PROMs to ensure their rigour when used with the target population.Little is written in the literature on how to identify and adapt the existing PROMs in hepatology.This article aims to provide a summary of the current literature and guidance regarding identifying and adapting existing PROMs in clinical practice.
文摘Purpose: To develop and test the face and content validity of a scale that assesses an individual’s adaptation and expression of hope to a life changing events, disease or trauma. Method: The Hope and Adaptation Scale was developed and tested across three stages. Stage 1 involved the use of a review of literature to conceptually map the tool. Stage 2 required exploratory investigations of the questionnaire by members of an expert panel. Stage 3 assessed the construct validity of the resulting scale. Results: Through the processes of Stage 1 and 2, the tool was developed and reduced to a 3-item scale that assessed a spectrum of hope-related responses and a spectrum of adaptation-related responses. Stage 3 identified fifteen independent health care professionals who assessed the scale. The content validity index of the resultant scale was 0.6 that was above the required level to be acceptable. The hope spectrum responses scored the highest content validity ratio (0.73). Discussion: The proposed scale appears to have face and content validity for application to a various number of events, disease or trauma experiences. Further testing of the scale is required for application in specific population groups.
文摘Background:Problematic scarring remains a challenging aspect to address in the treatment of burns and can significantly affect the quality of life of the burn survivor.At present,there are few treatments available in the clinic to control adverse scarring,but experimental pharmacological anti-scarring strategies are now beginning to emerge.Their comparative success must be based on objective measurements of scarring,yet currently the clinical assessment of scars is not carried out systematically and is mostly based on subjective review of patients.However,several techniques and devices are being introduced that allow objective analysis of the burn scar.The aim of this article is to evaluate various objective measurement tools currently available and recommend a useful panel that is suitable for use in clinical trials of anti-scarring therapies.Methods:A systematic literature search was done using the Web of Science,PubMed and Cochrane databases.The identified devices were then classified and grouped according to the parameters they measured.The tools were then compared and assessed in terms of inter-and intra-rater reproducibility,ease of use and cost.Results:After duplicates were removed,5062 articles were obtained in the search.After further screening,157 articles which utilised objective burn scar measurement systems or tools were obtained.The scar measurement devices can be broadly classified into those measuring colour,metric variables,texture,biomechanical properties and pathophysiological disturbances.Conclusions:Objective scar measurement tools allow the accurate and reproducible evaluation of scars,which is important for both clinical and scientific use.However,studies to evaluate their relative performance and merits of these tools are scarce,and there remain factors,such as itch and pain,which cannot be measured objectively.On reviewing the available evidence,a panel of devices for objective scar measurement is recommended consisting of the 3D cameras(Eykona/Lifeviz/Vectra H1)for surface area and volume,DSM I colorimeter for colour,Dermascan high-frequency ultrasound for scar thickness and Cutometer for skin elasticity and pliability.
基金This research was funded by the BMedSc Population Sciences and Humanities programme at the University of Birmingham,UK.This study/project or the PPI work in this study/project is part-funded by the National Institute for Health Research(NIHR)Surgical Recon-struction and Microbiology Research Centre(SRMRC).The views expressed are those of the author(s)and not necessarily those of the NIHR or the Department of Health and Social Care.
文摘Background:Scar assessment plays a key role during burns aftercare,to monitor scar remodelling and patients’psychosocial well-being.To aid assessment,subjective scar assessment scales are available that use health-care professionals’and patients’opinions to score scar characteristics.The subjective scales are more widely used in clinical practice over objective scar measures.To date,there is no research that considers patients’views on scar assessment and the role of subjective and objective assessment tools.Therefore,the aim of this qualitative study was to explore patients’perspectives on scar assessment and the utility of scar assessment tools during burns rehabilitation.Methods:Semi-structured interviews were conducted with 10 adult burn patients who were being reviewed in clinic for scarring.Participants were recruited via their clinical care team and research nurses at the Queen Elizabeth Hospital,Birmingham,UK.Topics covered during interview included patient experience of scar assessment,the use of scar assessment tools and discussion surrounding important factors to be addressed when assessing scars.A thematic analysis using the Framework Method was conducted.Results:Participants identified key subthemes that contribute towards the overarching theme of patient-centred scar assessment.These are:patient-led care;continuity in care;learning how to self-manage scarring;and psychological assessment.Links were demonstrated between these subthemes and the remaining themes that describe scar assessment strategies,indicating their potential patient-centred contributions.The subjective opinions of clinicians were found to be valued above the use of subjective or objective scar assessment tools.Scar assessment scales were perceived to be a beneficial method for self-reflection in relation to psychosocial function-ing.However,minimal feedback and review of completed assessment scales led to uncertainty regarding their purpose.Patients perceived objective tools to be of primary use for health-care professionals,though the measures may aid patients’understanding of scar properties.Conclusions:Scar assessment tools should be used to support,rather than replace,health-care professionals’subjective judgements of scarring.Adapting the way in which clinicians introduce and use scar assessment tools,according to patient needs,can support a patient-centred approach to scar assessment.
文摘Background:Burn injuries are a leading cause of morbidity and disability,with the burden of disease being disproportionately higher in low-and middle-income countries(LMIC).Burn prevention programmes have led to significant reductions in the incidence of burns in high-income countries.However,a previous systematic review published in 2015 highlighted that implementation and evaluation of similar programmes has been limited in LMIC.The objective of this scoping review and narrative synthesis was to summarise and understand the initiatives that have been carried out to reduce burn injuries in LMIC and their effectiveness.Methods:We aimed to identify publications that described studies of effectiveness of burn prevention interventions applied to any population within a LMIC and measured burn incidence or burns-related outcomes.Suitable publications were identified from three sources.Firstly,data was extracted from manuscripts identified in the systematic review published by Rybarczyk et al.We then performed a search for manuscripts on burn prevention interventions published between January 2015 and September 2020.Finally,we extracted data from two systematic reviews where burn evidence was not the primary outcome,which were identified by senior authors.A quality assessment and narrative synthesis of included manuscripts were performed.Results:In total,24 manuscripts were identified and categorized according to intervention type.The majority of manuscripts(n=16)described education-based interventions.Four manuscripts focused on environmental modification interventions and four adopted a mixedmethods approach.All of the education-based initiatives demonstrated improvements in knowledge relating to burn safety or first aid,however few measured the impact of their intervention on burn incidence.Four manuscripts described population-based educational interventions and noted reductions in burn incidence.Only one of the four manuscripts describing environmental modification interventions reported burns as a primary outcome measure,noting a reduction in burn incidence.All mixed-method interventions demonstrated some positive improvements in either burn incidence or burns-related safety practices.Conclusion:There is a lack of published literature describing large-scale burn prevention programmes in LMIC that can demonstrate sustained reductions in burn incidence.Populationlevel,collaborative projects are necessary to drive forward burn prevention through specific environmental or legislative changes and supplementary educational programmes.
