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Lung development starts in utero and continues during childhood through to adolescence, reaching its peak in early adulthood. This growth is followed by gradual decline due to physiological lung ageing. Lung-function development can be altered by several host and environmental factors during the life course. As a result, a range of lung-function trajectories exist in the population. Below average trajectories are associated with respiratory, cardiovascular, metabolic, and mental health comorbidities, as well as with premature death. This Review presents progressive research into lung-function trajectories and assists the implementation of this knowledge in clinical practice as an innovative approach to detect poor lung health early, monitor respiratory disease progression, and promote lung health. Specifically, we propose that, similar to paediatric height and weight charts used globally to monitor children's growth, lung-function charts could be used for both children and adults to monitor lung health status across the life course. To achieve this proposal, we introduce our free online Lung Function Tracker tool. Finally, we discuss challenges and opportunities for effective implementation of the trajectory concept at population level and outline an agenda for crucial research needed to support such implementation.
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Pulmón , Enfermedades Respiratorias , Adulto , Adolescente , Niño , Humanos , Salud Mental , Estado de SaludRESUMEN
BACKGROUND: Preschool-aged children have among the highest burden of acute wheeze. We investigated differences in healthcare use, treatment and outcomes for recurrent wheeze/asthma in preschoolers from different ethno-socioeconomic backgrounds. METHODS: Retrospective cohort study using data from the Clinical Practice Research Datalink linked to Hospital Episode Statistics in England. We reported number of acute presentations and hospitalisations stratified by index of multiple deprivation (IMD) and ethnicity; and factors associated with treatment non-escalation, and hospitalisation rates using multivariable logistic and Poisson regression models. RESULTS: 194 291 preschool children were included. In children not trialled on asthma preventer medications, children from the most deprived IMD quintile (adjusted OR 1.67; 95% CI 1.53 to 1.83) and South Asian (1.77; 1.64 to 1.91) children were more likely to have high reliever usage and where specialist referral had not occurred, the odds of referral being indicated was higher in the most deprived quintile (1.39; 1.28 to 1.52) and South Asian (1.86; 1.72 to 2.01) children compared with the least deprived quintile and white children, respectively.Hospitalisation rates for wheeze/asthma were significantly higher in children from the most deprived quintile (adjusted IRR 1.20; 95% CI 1.13 to 1.27) compared with the least, and in South Asian (1.57; 1.44 to 1.70) and black (1.32; 1.22 to 1.42) compared with white children. CONCLUSIONS: We identified inequalities in wheeze/asthma treatment and morbidity in preschool children from more deprived, and non-white backgrounds. A multifaceted approach to tackle health inequality at both the national and local levels, which includes a more integrated and standardised approach to treatment, is needed to improve health outcomes in children with preschool wheeze/asthma.
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Since the publication of the European Respiratory Society (ERS) Task Force reports on the management of preschool wheezing in 2008 and 2014, a large body of evidence has accumulated suggesting the clinical phenotypes that were proposed, episodic (viral) wheezing and multiple-trigger wheezing, do not relate to underlying airway pathology and may not help determine response to treatment. Specifically, using clinical phenotypes alone may no longer be appropriate, and new approaches that can be used to inform clinical care are needed for future research. This ERS Task Force reviewed the literature published after 2008 related to preschool wheezing and has suggested the criteria used to define wheezing disorders in preschool children should include age of diagnosis (0 to <6â years), confirmation of wheezing on at least one occasion, and more than one episode of wheezing ever.Furthermore, diagnosis and management may be improved by identifying treatable traits, including inflammatory biomarkers (blood eosinophils, aeroallergen sensitisation) associated with type-2 immunity and differential response to inhaled corticosteroids, lung function parameters, and airway infection. However, more comprehensive use of biomarkers/treatable traits in predicting the response to treatment requires prospective validation. There is evidence that specific genetic traits may help guide management, but these must be adequately tested. In addition, the Task Force identified an absence of caregiver-reported outcomes, caregiver/self-management options, and features that should prompt specialist referral for this age group. Priorities for future research include a focus on identifying i) mechanisms driving preschool wheezing, ii) biomarkers of treatable traits and efficacy of interventions in those without allergic sensitisation/eosinophilia, iii) the need to include both objective outcomes and caregiver-reported outcomes in clinical trials, iv) the need for a suitable action plan for children with preschool wheezing and v) a definition of severe/difficult-to-treat preschool wheezing.
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OBJECTIVE: Asthma can be difficult to diagnose in primary care. Clinical decision support systems (CDSS) can assist clinicians when making diagnostic decisions, but the perspectives of intended users need to be incorporated into the software if the CDSS is to be clinically useful. Therefore, we aimed to understand health professional views on the value of an asthma diagnosis CDSS and the barriers and facilitators for use in UK primary care. METHODS: We recruited doctors and nurses working in UK primary care who had experience of assessing respiratory symptoms and diagnosing asthma. Qualitative interviews were used to explore clinicians' experiences of making a diagnosis of asthma and understand views on a CDSS to support asthma diagnosis. Interviews were audio-recorded, transcribed verbatim and analyzed thematically. RESULTS: 16 clinicians (nine doctors, seven nurses) including 13 participants with over 10 years experience, contributed interviews. Participants saw the potential for a CDSS to support asthma diagnosis in primary care by structuring consultations, identifying relevant information from health records, and having visuals to communicate findings to patients. Being evidence based, regularly updated, integrated with software, quick and easy to use were considered important for a CDSS to be successfully implemented. Experienced clinicians were unsure a CDSS would help their routine practice, particularly in straightforward diagnostic scenarios, but thought a CDSS would be useful for trainees or less experienced colleagues. CONCLUSIONS: To be adopted into clinical practice, clinicians were clear that a CDSS must be validated, integrated with existing software, and quick and easy to use.
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Asma , Sistemas de Apoyo a Decisiones Clínicas , Médicos , Humanos , Asma/diagnóstico , Investigación Cualitativa , Atención Primaria de SaludRESUMEN
BACKGROUND: Chronic obstructive pulmonary disease (COPD) is commonly associated with anxiety/depression which can affect self-management and quality of life. The TANDEM trial evaluated a cognitive behavioural approach intervention targeting COPD-related symptoms of anxiety and/or depression, comprising up to eight one-to-one sessions delivered by respiratory healthcare professionals prior to pulmonary rehabilitation (PR). The intervention showed no improvement in anxiety/depression or uptake/completion of PR. We present patient perspectives of the intervention to help understand these results. METHOD: Semi-structured individual interviews, using a semi-structured topic guide informed by Sekhon's Theoretical Framework of Acceptability, were conducted with 19 patients between September 2019 and April 2020. The interviews were audio-recorded, transcribed verbatim and analysed thematically. RESULTS: The following could have limited the impact of the intervention: (1) The lives of patients were complex and commonly affected by competing comorbidities or other external stressors which they managed through previously adopted long-standing coping strategies. (2) Some patients were reluctant to talk about their mood despite the Facilitators' training and person centred-skills which aimed to enable patients to talk freely about mood. (3) The intervention handouts and 'home-practice' were perceived as helpful for some, but not suitable for all. (4) Many patients perceived improvements in their physical and mental health, but this was not sustained due to a mix of personal and external factors, and some did not perceive any benefits. (5) PR non-attendance/non-completion was a result of personal and PR service-related reasons. (6) Discussing COPD and mental health with the Facilitator was a novel experience. Many patients felt that TANDEM could be of benefit if it was offered earlier on/at different time points in the COPD illness journey. CONCLUSION: We found the delivery of TANDEM prior to PR was not helpful for patients with advanced COPD often experiencing other comorbidities, and/or difficult personal/external events. These patients already utilised long-standing coping strategies to manage their COPD. Holistic interventions, that address the impact of COPD in relation to wider aspects of a patients' life, may be more beneficial. TRIAL REGISTRATION: ISRCTN Registry 59,537,391. Registration date 20 March 2017.
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Depresión , Enfermedad Pulmonar Obstructiva Crónica , Investigación Cualitativa , Humanos , Enfermedad Pulmonar Obstructiva Crónica/psicología , Enfermedad Pulmonar Obstructiva Crónica/terapia , Masculino , Femenino , Anciano , Persona de Mediana Edad , Depresión/terapia , Ansiedad/terapia , Calidad de Vida , Terapia Cognitivo-Conductual/métodos , Entrevistas como Asunto , Adaptación PsicológicaRESUMEN
BACKGROUND: In Malaysia, asthma is a common chronic respiratory illness. Poor asthma control may increase out-of-pocket payment for asthma care, leading to financial hardships Malaysia provides Universal Health Coverage for the population with low user fees in the public health system to reduce financial hardship. We aimed to determine out-of-pocket expenditure on outpatient care for adult patients with asthma visiting government-funded public health clinics. We examined the catastrophic impact and medical impoverishment of these expenses on patients and households in Klang District, Malaysia. METHODS: This is a cross-sectional face-to-face questionnaire survey carried out in six government-funded public health clinics in Klang District, Malaysia. We collected demographic, socio-economic profile, and outpatient asthma-related out-of-pocket payments from 1003 adult patients between July 2019 and January 2020. Incidence of catastrophic health expenditure was estimated as the proportion of patients whose monthly out-of-pocket payments exceeded 10% of their monthly household income. Incidence of poverty was calculated as the proportion of patients whose monthly household income fell below the poverty line stratified for the population of the Klang District. The incidence of medical impoverishment was estimated by the change in the incidence of poverty after out-of-pocket payments were deducted from household income. Predictors of catastrophic health expenditure were determined using multivariate regression analysis. RESULTS: We found the majority (80%) of the public health clinic attendees were from low-income groups, with 41.6% of households living below the poverty line. About two-thirds of the attendees reported personal savings as the main source of health payment. The cost of transportation and complementary-alternative medicine for asthma were the main costs incurred. The incidences of catastrophic expenditure and impoverishment were 1.69% and 0.34% respectively. The only significant predictor of catastrophic health expenditure was household income. Patients in the higher income quintiles (Q2, Q3, Q4) had lower odds of catastrophic risk than the lowest quintile (Q1). Age, gender, ethnicity, and poor asthma control were not significant predictors. CONCLUSION: The public health system in Malaysia provides financial risk protection for adult patients with asthma. Although patients benefited from the heavily subsidised public health services, this study highlighted those in the lowest income quintile still experienced financial catastrophe and impoverishment, and the risk of financial catastrophe was significantly greater in this group. It is crucial to ensure health equity and protect patients of low socio-economic groups from financial hardship.
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Composición Familiar , Gastos en Salud , Adulto , Humanos , Estudios Transversales , Malasia , Salud Pública , Enfermedad Catastrófica , Enfermedad CrónicaRESUMEN
BACKGROUND: The TANDEM multicentre, pragmatic, randomised controlled trial evaluated whether a tailored psychological intervention based on a cognitive behavioural approach for people with COPD and symptoms of anxiety and/or depression improved anxiety or depression compared with usual care (control). METHODS: People with COPD and moderate to very severe airways obstruction and Hospital Anxiety and Depression Scale subscale scores indicating mild to moderate anxiety (HADS-A) and/or depression (HADS-D) were randomised 1.25:1 (242 intervention and 181 control). Respiratory health professionals delivered the intervention face-to-face over 6-8â weeks. Co-primary outcomes were HADS-A and HADS-D measured 6â months post-randomisation. Secondary outcomes at 6 and 12â months included: HADS-A and HADS-D (12â months), Beck Depression Inventory II, Beck Anxiety Inventory, St George's Respiratory Questionnaire, social engagement, the EuroQol instrument five-level version (EQ-5D-5L), smoking status, completion of pulmonary rehabilitation, and health and social care resource use. RESULTS: The intervention did not improve anxiety (HADS-A mean difference -0.60, 95% CI -1.40-0.21) or depression (HADS-D mean difference -0.66, 95% CI -1.39-0.07) at 6â months. The intervention did not improve any secondary outcomes at either time-point, nor did it influence completion of pulmonary rehabilitation or healthcare resource use. Deaths in the intervention arm (13/242; 5%) exceeded those in the control arm (3/181; 2%), but none were associated with the intervention. Health economic analysis found the intervention highly unlikely to be cost-effective. CONCLUSION: This trial has shown, beyond reasonable doubt, that this cognitive behavioural intervention delivered by trained and supervised respiratory health professionals does not improve psychological comorbidity in people with advanced COPD and depression or anxiety.
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Depresión , Enfermedad Pulmonar Obstructiva Crónica , Humanos , Depresión/terapia , Intervención Psicosocial , Ansiedad/terapia , Trastornos de Ansiedad , Enfermedad Pulmonar Obstructiva Crónica/complicaciones , Enfermedad Pulmonar Obstructiva Crónica/terapia , Calidad de VidaRESUMEN
There is increased awareness of palliative care needs in people with COPD or interstitial lung disease (ILD). This European Respiratory Society (ERS) task force aimed to provide recommendations for initiation and integration of palliative care into the respiratory care of adult people with COPD or ILD. The ERS task force consisted of 20 members, including representatives of people with COPD or ILD and informal caregivers. Eight questions were formulated, four in the Population, Intervention, Comparison, Outcome format. These were addressed with full systematic reviews and application of Grading of Recommendations Assessment, Development and Evaluation for assessing the evidence. Four additional questions were addressed narratively. An "evidence-to-decision" framework was used to formulate recommendations. The following definition of palliative care for people with COPD or ILD was agreed. A holistic and multidisciplinary person-centred approach aiming to control symptoms and improve quality of life of people with serious health-related suffering because of COPD or ILD, and to support their informal caregivers. Recommendations were made regarding people with COPD or ILD and their informal caregivers: to consider palliative care when physical, psychological, social or existential needs are identified through holistic needs assessment; to offer palliative care interventions, including support for informal caregivers, in accordance with such needs; to offer advance care planning in accordance with preferences; and to integrate palliative care into routine COPD and ILD care. Recommendations should be reconsidered as new evidence becomes available.
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Enfermedades Pulmonares Intersticiales , Enfermedad Pulmonar Obstructiva Crónica , Adulto , Humanos , Cuidadores/psicología , Enfermedades Pulmonares Intersticiales/terapia , Cuidados Paliativos , Enfermedad Pulmonar Obstructiva Crónica/diagnóstico , Calidad de VidaRESUMEN
PURPOSE OF REVIEW: Digital respiratory monitoring interventions (e.g. smart inhalers and digital spirometers) can improve clinical outcomes and/or organizational efficiency, and the focus is shifting to sustainable implementation as an approach to delivering respiratory care. This review considers key aspects of the technology infrastructure, discusses the regulatory, financial and policy context that influence implementation, and highlights the over-arching societal themes of equity, trust and communication. RECENT FINDINGS: Technological requirements include developing interoperable and connected systems; establishing stable, wide internet coverage; addressing data accuracy and monitoring adherence; realising the potential of artificial intelligence; and avoiding clinician data overload. Policy challenges include concerns about quality assurance and increasingly complex regulatory systems. Financial barriers include lack of clarity over cost-effectiveness, budget impact and reimbursement. Societal concerns focus on the potential to increase inequities because of poor e-health literacy, deprivation or lack of available infrastructure, the need to understand the implications for patient/professional interactions of shifting care to remote delivery and ensuring confidentiality of personal data. SUMMARY: Understanding and addressing the implementation challenges posed by gaps in policy, regulatory, financial, and technical infrastructure is essential to support delivery of equitable respiratory care that is acceptable to patients and professionals.
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Inteligencia Artificial , Enfermedades Respiratorias , Humanos , ComunicaciónRESUMEN
INTRODUCTION: Making a diagnosis of asthma can be challenging for clinicians and patients. A clinical decision support system (CDSS) for use in primary care including a patient-facing mode, could change how information is shared between patients and healthcare professionals and improve the diagnostic process. METHODS: Participants diagnosed with asthma within the last 5 years were recruited from general practices across four UK regions. In-depth interviews were used to explore patient experiences relating to their asthma diagnosis and to understand how a CDSS could be used to improve the diagnostic process for patients. Interviews were audio recorded, transcribed verbatim and analysed using a thematic approach. RESULTS: Seventeen participants (12 female) undertook interviews, including 14 individuals and 3 parents of children with asthma. Being diagnosed with asthma was generally considered an uncertain process. Participants felt a lack of consultation time and poor communication affected their understanding of asthma and what to expect. Had the nature of asthma and the steps required to make a diagnosis been explained more clearly, patients felt their understanding and engagement in asthma self-management could have been improved. Participants considered that a CDSS could provide resources to support the diagnostic process, prompt dialogue, aid understanding and support shared decision-making. CONCLUSION: Undergoing an asthma diagnosis was uncertain for patients if their ideas and concerns were not addressed by clinicians and were influenced by a lack of consultation time and limitations in communication. An asthma diagnosis CDSS could provide structure and an interface to prompt dialogue, provide visuals about asthma to aid understanding and encourage patient involvement. PATIENT AND PUBLIC CONTRIBUTION: Prespecified semistructured interview topic guides (young person and adult versions) were developed by the research team and piloted with members of the Asthma UK Centre for Applied Research Patient and Public Involvement (PPI) group. Findings were regularly discussed within the research group and with PPI colleagues to aid the interpretation of data.
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Asma , Sistemas de Apoyo a Decisiones Clínicas , Medicina General , Adulto , Niño , Humanos , Femenino , Adolescente , Investigación Cualitativa , Asma/diagnóstico , Asma/terapia , PadresRESUMEN
BACKGROUND: Digital technology tailored for those with limited health literacy has the potential to reduce health inequalities. Although mobile apps can support self-management in chronic diseases, there is little evidence that this approach applies to people with limited health literacy. We aimed to determine the acceptability of a self-management app in adults living with asthma and have limited health literacy and the feasibility of delivering the intervention and assessing outcomes. METHODS: We recruited eligible adults from the Klang Asthma Cohort registry in primary care for a 3-month mixed-method study plus a 2-month extended observation. We collected baseline data on socio-demography, health literacy and asthma control level. The outcomes of the intervention were assessed at 1- and 3-month: i) adoption (app download and usage), ii) adherence (app usage), iii) retention (app usage in the observation period), iv) health outcomes (e.g., severe asthma attacks) and v) process outcomes (e.g., ownership and use of action plans). At 1-month, participants were purposively sampled for in-depth interviews, which were audio-recorded, transcribed verbatim, and analysed deductively. RESULTS: We recruited 48 participants; 35 participants (23 Female; median age = 43 years; median HLS score = 28) completed the 3 months study. Of these, 14 participants (10 Female; median age = 48 years; median HLS score = 28) provided interviews. Thirty-seven (77%) participants adopted the app (downloaded and used it in the first month of the study). The main factor reported as influencing adoption was the ease of using the app. A total of 950 app usage were captured during the 3-month feasibility study. App usage increased gradually, peaking at month 2 (355 total log-ins) accounting for 78% of users. In month 5, 51.4% of the participants used the app at least once. The main factors influencing continued use included adherence features (e.g., prompts and reminders), familiarity with app function and support from family members. CONCLUSIONS: An asthma self-management app intervention was acceptable for adults with limited health literacy and it was feasible to collect the desired outcomes at different time points during the study. A future trial is warranted to estimate the clinical and cost-effectiveness of the intervention and to explore implementation strategies.
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Asma , Alfabetización en Salud , Aplicaciones Móviles , Automanejo , Adulto , Humanos , Femenino , Persona de Mediana Edad , Automanejo/métodos , Estudios de Factibilidad , Asma/terapiaRESUMEN
BACKGROUND: Process evaluations aim to understand how complex interventions bring about outcomes by examining intervention mechanisms, implementation, and context. While much attention has been paid to the methodology of process evaluations in health research, the value of process evaluations has received less critical attention. We aimed to unpack how value is conceptualised in process evaluations by identifying and critically analysing 1) how process evaluations may create value and 2) what kind of value they may create. METHODS: We systematically searched for and identified published literature on process evaluation, including guidance, opinion pieces, primary research, reviews, and discussion of methodological and practical issues. We conducted a critical interpretive synthesis and developed a practical planning framework. RESULTS: We identified and included 147 literature items. From these we determined three ways in which process evaluations may create value or negative consequences: 1) through the socio-technical processes of 'doing' the process evaluation, 2) through the features/qualities of process evaluation knowledge, and 3) through using process evaluation knowledge. We identified 15 value themes. We also found that value varies according to the characteristics of individual process evaluations, and is subjective and context dependent. CONCLUSION: The concept of value in process evaluations is complex and multi-faceted. Stakeholders in different contexts may have very different expectations of process evaluations and the value that can and should be obtained from them. We propose a planning framework to support an open and transparent process to plan and create value from process evaluations and negotiate trade-offs. This will support the development of joint solutions and, ultimately, generate more value from process evaluations to all.
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Evaluación de Procesos, Atención de Salud , HumanosRESUMEN
BACKGROUND: Self-management strategies improve asthma outcomes, although interventions for South Asian populations have been less effective than in White populations. Both self-management and culture are dynamic, and factors such as acculturation and generation have not always been adequately reflected in existing cultural interventions. We aimed to explore the perspectives of Bangladeshi and Pakistani people in the United Kingdom, across multiple generations (first, second and third/fourth), on how they self-manage their asthma, with a view to suggesting recommendations for cultural interventions. METHODS: We purposively recruited Bangladeshi and Pakistani participants, with an active diagnosis of asthma from healthcare settings. Semi-structured interviews in the participants' choice of language (English, Sylheti, Standard Bengali or Urdu) were conducted, and data were analysed thematically. RESULTS: Twenty-seven participants (13 Bangladeshi and 14 Pakistani) were interviewed. There were generational differences in self-management, influenced by complex cultural processes experienced by South Asians as part of being an ethnic minority group. Individuals from the first generation used self-management strategies congruent to traditional beliefs such as 'sweating' and often chose to travel to South Asian countries. Generations born and raised in the United Kingdom learnt and experimented with self-management based on their fused identities and modified their approach depending on whether they were in familial or peer settings. Acculturative stress, which was typically higher in first generations who had migration-related stressors, influenced the priority given to asthma self-management throughout generations. The amount and type of available asthma information as well as social discussions within the community and with healthcare professionals also shaped asthma self-management. CONCLUSIONS: Recognizing cultural diversity and its influence of asthma self-management can help develop effective interventions tailored to the lives of South Asian people. PATIENT OR PUBLIC CONTRIBUTION: Patient and Public Involvement colleagues were consulted throughout to ensure that the study and its materials were fit for purpose.
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Asma , Automanejo , Humanos , Asma/terapia , Etnicidad , Grupos Minoritarios , Pakistán/etnología , Reino Unido/epidemiologíaRESUMEN
BACKGROUND: The COVID-19 pandemic forced health care systems globally to adapt quickly to remote modes of health care delivery, including for routine asthma reviews. A core component of asthma care is supporting self-management, a guideline-recommended intervention that reduces the risk of acute attacks, and improves asthma control and quality of life. OBJECTIVE: We aimed to explore context and mechanisms for the outcomes of clinical effectiveness, acceptability and safety of supported self-management delivery within remote asthma consultations. DESIGN: The review followed standard methodology for rapid realist reviews. An External Reference Group (ERG) provided expert advice and guidance throughout the study. We systematically searched four electronic databases and, with ERG advice, selected 18 papers that explored self-management delivery during routine asthma reviews. SETTING, PARTICIPANTS AND INTERVENTION: Health care professional delivery of supported self-management for asthma patients during remote (specifically including telephone and video) consultations. MAIN OUTCOME MEASURES: Data were extracted using Context-Mechanism-Outcome (C-M-O) configurations and synthesised into overarching themes using the PRISMS taxonomy of supported self-management as a framework to structure the findings. RESULTS: The review findings identified how support for self-management delivered remotely was acceptable (often more acceptable than in-person consultations), and was a safe and effective alternative to face-to-face reviews. In addition, remote delivery of supported self-management was associated with; increased patient convenience, improved access to and attendance at remote reviews, and offered continuity of care. DISCUSSION: Remote delivery of supported self-management for asthma was generally found to be clinically effective, acceptable, and safe with the added advantage of increasing accessibility. Remote reviews could provide the core content of an asthma review, including remote completion of asthma action plans. CONCLUSION: Our findings support the option of remote delivery of routine asthma care for those who have this preference, and offer healthcare professionals guidance on embedding supported self-management into remote asthma reviews. PATIENT AND PUBLIC CONTRIBUTION: Patient and public contribution was provided by a representative of the Asthma UK Centre for Applied Research (AUKCAR) patient and public involvement (PPI) group. The PPI representative reviewed the findings, and feedback and comments were considered. This lead to further interpretations of the data which were included in the final manuscript.
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Asma , COVID-19 , Automanejo , Asma/terapia , Humanos , Pandemias , Participación del Paciente , Calidad de VidaRESUMEN
BACKGROUND: Adjusting to life with a chronic condition is challenging, especially for people with limited health literacy, which is associated with low compliance with self-management activities and poor clinical outcomes. OBJECTIVE: We explored how people with limited health literacy understand asthma and undertake self-management practices. DESIGN: We adapted the arts-based qualitative methodology Photovoice. SETTING AND PARTICIPANTS: We sampled ethnically diverse adults with asthma and limited health literacy from four primary healthcare clinics in Malaysia. After a semistructured in-depth interview, a subset of participants took part in the Photovoice component in which participants undertook a 2-week photo-taking activity and subsequent photo-interview. Interviews, conducted in participants' preferred language, were audio-recorded, transcribed verbatim, translated and analysed thematically. We used the Sorensen's framework (Domains: access, understand, appraise, apply) to describe participants' experience of living with asthma, what they understood about asthma and how they decided on self-management practices. RESULTS: Twenty-six participants provided interviews; eight completed the Photovoice activities. Participants with limited health literacy used various sources to access information about asthma and self-management. Doctor-patient communication had a pivotal role in helping patients understand asthma. The lack of appraisal skills was significant and experiential knowledge influenced how they applied information. Self-management decisions were influenced by sociocultural norms/practices, stigmatizing experiences, and available social support. CONCLUSION: Locally tailored multilevel interventions (interpersonal, health system, community and policy) will be needed to support people with limited health literacy to live optimally with their asthma in an ethnically diverse population. PATIENT/PUBLIC CONTRIBUTION: Patients were involved in the study design, recruitment, analysis and dissemination.
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Asma , Alfabetización en Salud , Automanejo , Adulto , Asma/terapia , Comunicación , Humanos , Investigación CualitativaRESUMEN
Background: Chronic respiratory diseases (CRD), especially asthma and chronic obstructive pulmonary disease (COPD), are common public health problems resulting in a substantial burden of disease for individuals. There is a need to understand the perceptions and practices of primary care physicians ("general practitioners [GPs]") who provide most of the health care in rural India. We surveyed all private and public practitioners listed as practising in a rural area of Western India with the aim of identifying GPs (GPs: graduates, registered and allowed to practice in India) to understand their training, working arrangements, and asthma/COPD workload. Methodology: We administered a short questionnaire at educational meetings or via e-mail to all private and public practitioners listed as providing community-based services in the Junnar block, Pune district, Maharashtra. The survey asked about qualifications, experience, and working arrangements, and about current asthma and COPD workload. A descriptive analysis was performed. Results: We approached 474 practitioners (434 from private sector and 40 from public sector). Eighty-eight were no longer practising in the study area. The response rate was 330/354 (93.2%) of private and 28/32 (87.5%) of public sector practitioners. We excluded 135 nonrespiratory hospital specialists and 23 private practitioners whose highest qualification was a diploma. Our final sample of 200 GPs (70% males) was 177 from private sector and 23 from public sector. The private GPs had more experience in clinical practice in comparison to public GPs (18.6 vs. 12.8 years). Eighty-four percent of GPs from the private sector only had Ayurveda, Yoga, Naturopathy, Unani, Siddha, and Homoeopathy (AYUSH) qualifications, though >90% provided "modern medicine" services. In the public sector, 43.5% GPs only had AYUSH qualifications, though all provided "modern medicine" services. A minority (9% of private GPs and 16% of public GPs) provided both services. Nearly two-thirds (62%) of private GPs had inpatient facilities compared to only 9% of public sector GPs. In both sectors, more GPs stated that they managed people with asthma than treated COPD (Private: 97% vs. 75%; Public 87% vs. 57%). Conclusion: Many GPs practising "modern medicine" only had qualifications in Ayurveda/Homeopathy and fewer GPs are involved in the management of COPD as compared to asthma. These are important factors that form the context for initiatives seeking to improve the quality of community-based care for people with CRD in Maharashtra state in India.
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Asma , Médicos Generales , Enfermedad Pulmonar Obstructiva Crónica , Masculino , Humanos , Femenino , India , Enfermedad Pulmonar Obstructiva Crónica/terapia , Asma/terapia , Encuestas y CuestionariosRESUMEN
BACKGROUND: Scale-up BP was a quasi-experimental implementation study, following a successful randomised controlled trial of the roll-out of telemonitoring in primary care across Lothian, Scotland. Our primary objective was to assess the effect of telemonitoring on blood pressure (BP) control using routinely collected data. Telemonitored systolic and diastolic BP were compared with surgery BP measurements from patients not using telemonitoring (comparator patients). The statistical analysis and interpretation of findings was challenging due to the broad range of biases potentially influencing the results, including differences in the frequency of readings, 'white coat effect', end digit preference, and missing data. METHODS: Four different statistical methods were employed in order to minimise the impact of these biases on the comparison between telemonitoring and comparator groups. These methods were "standardisation with stratification", "standardisation with matching", "regression adjustment for propensity score" and "random coefficient modelling". The first three methods standardised the groups so that all participants provided exactly two measurements at baseline and 6-12 months follow-up prior to analysis. The fourth analysis used linear mixed modelling based on all available data. RESULTS: The standardisation with stratification analysis showed a significantly lower systolic BP in telemonitoring patients at 6-12 months follow-up (-4.06, 95% CI -6.30 to -1.82, p < 0.001) for patients with systolic BP below 135 at baseline. For the standardisation with matching and regression adjustment for propensity score analyses, systolic BP was significantly lower overall (- 5.96, 95% CI -8.36 to - 3.55 , p < 0.001) and (- 3.73, 95% CI- 5.34 to - 2.13, p < 0.001) respectively, even after assuming that - 5 of the difference was due to 'white coat effect'. For the random coefficient modelling, the improvement in systolic BP was estimated to be -3.37 (95% CI -5.41 to -1.33 , p < 0.001) after 1 year. CONCLUSIONS: The four analyses provide additional evidence for the effectiveness of telemonitoring in controlling BP in routine primary care. The random coefficient analysis is particularly recommended due to its ability to utilise all available data. However, adjusting for the complex array of biases was difficult. Researchers should appreciate the potential for bias in implementation studies and seek to acquire a detailed understanding of the study context in order to design appropriate analytical approaches.
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Hipertensión , Presión Sanguínea , Humanos , Hipertensión/diagnóstico , Hipertensión/terapia , Atención Primaria de Salud , Proyectos de Investigación , EscociaRESUMEN
BACKGROUND: Globally, community health workers (CHWs) are integral contributors to many health systems. In India, Accredited Social Health Activists (ASHAs) have been deployed since 2005. Engaged in multiple health care activities, they are a key link between the health system and population. ASHAs are expected to participate in new health programmes prompting interest in their current workload from the perspective of the health system, community and their family. METHODS: This mixed-methods design study was conducted in rural and tribal Primary Health Centers (PHCs), in Pune district, Western Maharashtra, India. All ASHAs affiliated with these PHCs were invited to participate in the quantitative study, those agreeing to contribute in-depth interviews (IDI) were enrolled in an additional qualitative study. Key informants' interviews were conducted with the Auxiliary Nurse Midwife (ANM), Block Facilitators (BFF) and Medical Officers (MO) of the same PHCs. Quantitative data were analysed using descriptive statistics. Qualitative data were analysed thematically. RESULTS: We recruited 67 ASHAs from the two PHCs. ASHAs worked up to 20 h/week in their village of residence, serving populations of approximately 800-1200, embracing an increasing range of activities, despite a workload that contributed to feelings of being rushed and tiredness. They juggled household work, other paid jobs and their ASHA activities. Practical problems with travel added to time involved, especially in tribal areas where transport is lacking. Their sense of benefiting the community coupled with respect and recognition gained in village brought happiness and job satisfaction. They were willing to take on new tasks. ASHAs perceived themselves as 'voluntary community health workers' rather than as 'health activists". CONCLUSIONS: ASHAs were struggling to balance their significant ASHA work and domestic tasks. They were proud of their role as CHWs and willing to take on new activities. Strategies to recruit, train, skills enhancement, incentivise, and retain ASHAs, need to be prioritised. Evolving attitudes to the advantages/disadvantages of current voluntary status and role of ASHAs need to be understood and addressed if ASHAs are to be remain a key component in achieving universal health coverage in India.
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Agentes Comunitarios de Salud , Carga de Trabajo , Atención a la Salud , Programas de Gobierno , Humanos , IndiaRESUMEN
BACKGROUND: Supported self-management improves asthma outcomes, but implementation requires adaptation to the local context. Barriers reported in Western cultures may not resonate in other cultural contexts. We explored the views, experiences and beliefs that influenced self-management among adults with asthma in multicultural Malaysia. METHODS: Adults with asthma were purposively recruited from an urban primary healthcare clinic for in-depth interviews. Audio-recordings were transcribed verbatim and analysed thematically. RESULTS: We interviewed 24 adults. Four themes emerged: (1) Participants believed in the 'hot and cold' concept of illness either as an inherent hot/cold body constitution or the ambient temperature. Hence, participants tried to 'neutralize' body constitution or to 'warm up' the cold temperature that was believed to trigger acute attacks. (2) Participants managed asthma based on past experiences and personal health beliefs as they lacked formal information about asthma and its treatment. (3) Poor communication and variable advice from healthcare practitioners on how to manage their asthma contributed to poor self-management skills. (4) Embarrassment about using inhalers in public and advice from family and friends resulted in a focus on nonpharmacological approaches to asthma self-management practice. CONCLUSIONS: Asthma self-management practices were learnt experientially and were strongly influenced by sociocultural beliefs and advice from family and friends. Effective self-management needs to be tailored to cultural norms, personalized to the individuals' preferences and clinical needs, adapted to their level of health literacy and underpinned by patient-practitioner partnerships. PATIENT AND PUBLIC CONTRIBUTIONS: Patients contributed to data. Members of the public were involved in the discussion of the results.
Asunto(s)
Asma , Alfabetización en Salud , Automanejo , Adulto , Asma/terapia , Humanos , Atención Primaria de Salud , Investigación CualitativaRESUMEN
BACKGROUND: Supported self-management for asthma reduces acute attacks and improves control. The internet of things could connect patients to health care providers, community services, and their living environments to provide overarching support for self-management. OBJECTIVE: We aimed to identify patients' and clinicians' preferences for a future internet-of-things system and explore their visions of its potential to support holistic self-management. METHODS: In an exploratory sequential mixed methods study, we recruited patients from volunteer databases and charities' social media. We purposively sampled participants to interview them about their vision of the design and utility of the internet of things as a future strategy for supporting self-management. Respondents who were not invited to participate in the interviews were invited to complete a web-based questionnaire to prioritize the features suggested by the interviewees. Clinicians were recruited from professional networks. Interviews were transcribed and analyzed thematically using PRISMS self-management taxonomy. RESULTS: We interviewed 12 patients and 12 clinicians in the United Kingdom, and 140 patients completed the web-based questionnaires. Patients expressed mostly wanting a system to log their asthma control status automatically; provide real-time advice to help them learn about their asthma, identify and avoid triggers, and adjust their treatment. Peak flow (33/140, 23.6%), environmental (pollen, humidity, air temperature) (33/140, 23.6%), and asthma symptoms (25/140, 17.9%) were the specific data types that patient most wanted. Information about asthma and text or email access to clinical advice provided a feeling of safety for patients. Clinicians wanted automated objective data about the patients' condition that they could access during consultations. The potential reduction in face-to-face consultations was appreciated by clinicians which they perceived could potentially save patients' travel time and health service resources. Lifestyle logs of fitness regimes or weight control were valued by some patients but were of less interest to clinicians. CONCLUSIONS: An automated internet-of-things system that requires minimal input from the user and provides timely advice in line with an asthma action plan agreed by the patient with their clinician was preferred by most respondents. Links to asthma information and the ability to connect with clinicians by text or email were perceived by patients as features that would provide a sense of safety. Further studies are needed to evaluate the usability and effectiveness of internet-of-things systems in routine clinical practice.