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The self-management abilities test (SMAT): a tool to identify the self-management abilities of adults with bronchiectasis

The self-management abilities test (SMAT): a tool to identify the self-management abilities of... www.nature.com/npjpcrm ARTICLE OPEN The self-management abilities test (SMAT): a tool to identify the self-management abilities of adults with bronchiectasis 1,2✉ 1 1 1 1 Katelyn R. Smalley , Lisa Aufegger , Kelsey Flott , Erik K. Mayer and Ara Darzi Bronchiectasis is an increasingly common chronic respiratory disease which requires a high level of patient engagement in self- management. Whilst the need for self-management has been recognised, the knowledge and skills needed to do so— and the extent to which patients possess these—has not been well-specified. On one hand, understanding the gaps in people’s knowledge and skills can enable better targeting of self-management supports. On the other, clarity about what they do know can increase patients’ confidence to self-manage. This study aims to develop an assessment of patients’ ability to self-manage effectively, through a consensus-building process with patients, clinicians and policymakers. The study employs a modified, online three-round Delphi to solicit the opinions of patients, clinicians, and policymakers (N = 30) with experience of bronchiectasis. The first round seeks consensus on the content domains for an assessment of bronchiectasis self-management ability. Subsequent rounds propose and refine multiple-choice assessment items to address the agreed domains. A group of ten clinicians, ten patients and ten policymakers provide both qualitative and quantitative feedback. Consensus is determined using content validity ratios. Qualitative feedback is analysed using the summative content analysis method. Overarching domains are General Health Knowledge, Bronchiectasis-Specific Knowledge, Symptom Management, Communication, and Addressing Deterioration, each with two sub- domains. A final assessment tool of 20 items contains two items addressing each sub-domain. This study establishes that there is broad consensus about the knowledge and skills required to self-manage bronchiectasis effectively, across stakeholder groups. The output of the study is an assessment tool that can be used by patients and their healthcare providers to guide the provision of self- management education, opportunities, and support. npj Primary Care Respiratory Medicine (2022) 32:3 ; https://doi.org/10.1038/s41533-021-00265-5 INTRODUCTION with an estimated prevalence of 212,000 people in the UK, and a 20% increase in prevalence from 2008 to 2012 . An estimated 500 Self-management is critical in chronic diseases like bronchiectasis, per 100,000 people in the UK have been diagnosed with since much of the treatment takes place at home, outside the bronchiectasis, which equates to 50 patients in a GP practice of supervision of healthcare professionals. Many patients over time 10,000 . A diagnosis of bronchiectasis is confirmed radiologically become ‘experts’ with respect to their condition, but that 1,2 by permanent, abnormal dilation of the bronchi . Bronchiectasis expertise has been contested and not rigorously specified . can result from diverse causes, and often the cause is unknown . Policymakers have long recognised that patients have a role to The disease is characterised by recurrent infections called play in managing chronic illnesses, through self-care, commu- exacerbations, and the goals of treatment are to prevent nication with healthcare providers and moderating the frequency exacerbations, halt disease progression and minimise symptoms . 3–5 and intensity of the care they receive . However, clarity is lacking Bronchiectasis is often termed a ‘vicious circle of infection and with respect to what patients can do (and how that varies by inflammation’ (British Thoracic Society ). The cyclical nature of the individual), what they must be able to do (for safety reasons) and disease provides an opportunity to learn over time. The daily what they should be responsible for (as a non-healthcare process of managing symptoms, maintaining exercise and professional contributing to the management of their chronic medication regimens, and recognising signs of exacerbation or disease). Others have highlighted that some degree of variation deterioration, provide people with bronchiectasis ample opportu- on these dimensions is appropriate; thus it is necessary to tailor nities to engage in self-management. Self-management can be self-management interventions to individual patients . This is challenging to characterise because it can mean different things particularly critical in bronchiectasis, for which treatment is 13 to different people in different contexts . Most commonly, the variable and personalised self-management plans are recom- term self-management can be used to describe both the daily mended for all . This study explored what patients must know and activities that patients undertake to maintain control over their be able to do to safely self-manage bronchiectasis. In consultation disease, but also interventions that train patients in these with a multi-stakeholder expert panel, we developed an assess- activities . Self-management can refer to a wide range of ment tool to identify the extent to which adults with bronch- behaviours, including exercise, symptom monitoring and asking iectasis have those necessary knowledge and skills. Bronchiectasis follow-up questions in healthcare appointments . Some self- is a chronic respiratory disease that is characterised by symptoms management activities (e.g. routine airway clearance) are disease- such as dyspnoea, productive cough, chest discomfort and specific, and others (e.g. smoking cessation) are universal. recurrent chest infections . It is an increasingly common condition, Behaviour change interventions called self-management NIHR Imperial PSTRC (Patient Safety and Translational Research Centre), Institute of Global Health Innovation, Department of Surgery & Cancer, Imperial College London, London, UK. Community and Primary Care Research Group, Plymouth Institute of Health and Care Research, University of Plymouth, Plymouth, UK. email: k.smalley17@imperial.ac.uk Published in partnership with Primary Care Respiratory Society UK 1234567890():,; KR Smalley et al. programmes have become commonplace in a variety of chronic Delphi is a flexible method that has been used for multiple conditions, but there is a paucity of data about the optimal purposes in health research, including assessment develop- 29,30 content of such programmes tailored to bronchiectasis. A recent ment . It has the advantage of collecting expert opinions systematic review found only two bronchiectasis self- asynchronously, allowing the input of multiple individuals without 16 31 management programmes globally . These studies, both from geographic or scheduling limitations . For the purposes of this the UK, were unable to establish benefits on their primary study, it also allowed the participation of seriously chronically ill outcome of health-related quality of life and did not report on individuals who could complete the questionnaires from home. some clinically-relevant outcomes like exacerbations requiring The anonymity of Delphi participants reduces the risk of power 16 32,33 antibiotics . On the other hand, qualitative research suggests that dynamics confounding responses . This study modified the information deficits may be a barrier to effective self-management method to first achieve consensus on content domains, and then of bronchiectasis . Both knowledge, defined as ‘awareness of the further develop assessment items that address those domains. existence of something’, and skills, defined as ‘ability or proficiency acquired through practice’ , are critical capabilities Participation for self-management. We term the knowledge and skills needed This study, which took place in the UK, solicited expert opinions to self-manage a chronic disease self-management ability. In this from three stakeholder groups: study, we work with an expert panel of clinicians, policymakers and people with bronchiectasis to define the knowledge and skills 1. Adult patients with bronchiectasis (either with or without needed to self-manage bronchiectasis safely and to develop an cystic fibrosis). assessment tool to measure the extent to which patients possess 2. Clinicians (general practitioners, respiratory consultants/ those knowledge and skills. In accordance with best practices for specialists, respiratory physiotherapists, specialist nurses, assessment development, the literature was searched for poten- pharmacists) who currently work in a clinical capacity, and tially relevant assessments that would supersede the need for a who have experience treating bronchiectasis. new tool . Four generic self-management-related assessments 3. Policymakers with experience of bronchiectasis (broadly were identified: the Patient Activation Measure , the Chronic conceived as people whose current responsibilities include Disease Self-Efficacy Scale , the Test of Functional Health Literacy not only direct patient care, but also the development of 22 23 in Adults and the Health Education Impact Questionnaire . policies and procedures for the care of these patients either Aside from being unable to address the specific information needs at the multi-disciplinary team, trust, regional or national of patients with bronchiectasis as identified by Hester et al. (2018), level). they also assessed concepts other than self-management knowl- This range of stakeholders were chosen to provide a multi- edge and skills (namely, patient activation and self-efficacy) . Two faceted view of self-management ability. Reflecting sample size respiratory-specific assessments were identified. The Bristol COPD guidance for Delphi studies, ten participants represented each Knowledge Questionnaire was the only knowledge assessment stakeholder group, for a panel of 30 participants in total . identified . As suggested by the name, this questionnaire assessed knowledge only, and not skills. Further, whilst there is Recruitment and study setting considerable overlap in the knowledge and skills needed to Patients were recruited online via the Voice Global and People in manage COPD and bronchiectasis, there are important differences Research networks of lay researchers, Twitter, the British Lung that must also be taken into account. Finally, the Lung Information Foundation’s Breathe Easy support groups, and through informal Needs Questionnaire assessed patients’ perception of how well clinicians communicated information to them . These percep- networks of lay representatives at Imperial College. Clinicians were tions are distinct from self-management ability per se, which recruited via respiratory professional societies such as BronchUK entails being able to reproduce or act on that information. We did and the British Thoracic Society, publicly available profiles and not identify any assessments that measure patients’ self- personal references. Policymakers were identified via public management knowledge and skills directly. Since these are two research and policy profiles, and leadership of professional key outcomes of self-management interventions, this is a societies, research groups or major clinical studies of bronchiec- significant gap in the literature. This is especially true for tasis. The panel was recruited from across the UK and provided bronchiectasis, for which disease-related information is particu- written informed consent to participate. larly important . For all of these reasons, the existing literature The Delphi was conducted in three rounds, over the course of supported the development of a new assessment tool that would 9 months. The contents of the Delphi questionnaires were derived measure self-management ability directly, and specifically with from the literature on self-management of bronchiectasis and respect to bronchiectasis. The aim of this work was to co-develop consultation with respiratory clinicians and patient experts. The a measure of patients’ ability to self-manage bronchiectasis, with questionnaires were administered online via Qualtrics software patients, clinicians, and policymakers with experience of the licensed to Imperial College London. Data were stored and disease. Two specific objectives serve to meet this aim: managed in Excel, and quantitative analyses were completed either in R or Excel. Data were stored on Imperial’s Big Data To achieve a consensus definition of effective self- Analytic Unit (BDAU) secure server in accordance with UK Health management in terms of knowledge and skills. Research Authority (HRA) ethical approval (IRAS # 250224). To produce a measurement tool of patients’ ability to self- manage bronchiectasis. Data collection The purpose of Round 1 was to agree to the content domains that should be covered by an assessment of self-management ability METHODS for bronchiectasis. A preliminary list of content domains was Study design generated through interviews with stakeholders and a literature 26,27 This study employed an online, modified Delphi method . The review. The content of self-management programmes for 16,35,36 Delphi technique is an anonymous, iterative process to solicit bronchiectasis and other respiratory diseases , taxonomies 37,38 expert opinion through a series of structured questionnaires, with of behaviour change and self-management support and other 20,21,24,25 the purpose to either gain consensus or identify systematic assessments of preparedness for self-management were disagreement . consulted in the development of this list. npj Primary Care Respiratory Medicine (2022) 3 Published in partnership with Primary Care Respiratory Society UK 1234567890():,; KR Smalley et al. Semi-structured interviews with respiratory patients, clinicians RESULTS and policymakers (who were not involved in the present study) A total of 30 participants (out of 63 who were invited by email) provided insights on the key knowledge, skills and attitudes contributed to Round 1. Participants were evenly distributed needed to effectively self-manage long-term respiratory diseases between the stakeholder groups, with ten patients, ten clinicians (results not yet published). and ten policymakers responding. Twenty-six participants (86.7%) Participants were presented with items that may be related to a responded in Round 2 and 25 (83.3%) participated in Round 3. patient’s ability to self-manage bronchiectasis effectively. They were asked to rank how important they believed these items were Quantitative analysis to a patient’s ability to self-manage this disease on a seven-point Round 1 of the Delphi demonstrated an early degree of consensus Likert Scale, from 1 = not relevant to 7 = essential . Questions on content domains. Of the 46 initial knowledge and skill items, 21 were posed in the format: ‘To what extent do you believe it is had a content validity ratio (CVR) over 0.33, meaning that important for patients to…?’ Participants were provided with agreement on the inclusion of that item was greater than space to explain their answers. predicted by chance. Nineteen items had a CVR below 0, The purpose of Round 2 was to solicit opinions on potential indicating the item was irrelevant and should be excluded. Table 1 shows responses based on the question topic. assessment items addressing the content domains agreed in Approximately half of the questions in each content domain Round 1. Round 2 was divided into two sections—Round 2a and were retained. Bronchiectasis-specific knowledge items and Round 2b. Round 2a included items for which consensus was communication skills questions were more likely to be included achieved in Round 1. For these items, participants were asked to in subsequent rounds. react to a draft assessment question that might be proposed to In Round 2, sample questions and answers for the assessment patients to test the domain. Assessment questions took the form were posed. One item had a CVR below 0 and was dropped, of simple multiple choice, True/False, vignettes, and ‘check all that leaving 20 items in the scale. Because of attrition in the response apply’. Round 2b focussed on items for which consensus was not rate, the CVR threshold used in Round 2 was 0.39 instead of 0.33. achieved in the previous round. Participants were asked to This means that at least 18 of the 26 respondents in this round reconsider the item in light of the responses of other participants, needed to rank an item as essential for it to be included. and either maintain or change their opinion on the inclusion of In Round 3, participants reviewed the changes made to the the item. scale and affirmed the inclusion or exclusion of items. Again Finally, in Round 3, participants reviewed the revised assess- because of attrition, the CVR threshold was raised to 0.44. On ment, confirmed the items to be included, and provided average the degree of consensus in Round 3 was 97.2%, with suggestions to further clarify the wording of the assessment unanimous inclusion of 13 items. question stems and answer choices. Qualitative analysis Modifications were made to question stems and answer choices in Data analysis response to qualitative feedback. Feedback came in five general Consensus was evaluated not only as observed, but also relative to forms: the degree of consensus that would be expected by chance, using a content validity ratio . Lawshe’s content validity ratio (CVR) 1. The question did not test the concept as intended. method was developed to determine the validity of panellists’ 2. The item referred to local terminology or processes that assessments of essential knowledge and skills. It is a linear would not be understood by all respondents. transformation of the percent consensus, such that a higher 3. The wording or terminology was confusing, generally. 4. The item concerned non-essential information that patients degree of consensus is weighted more heavily . This transforma- shouldn’t be expected to know outright, but rather should tion increases the confidence that the consensus level observed have the skills to find when needed. reflects the true level of agreement, and allows for the elimination of items that ‘might reasonably have occurred through chance’ . For a sample of this size (N = 30), the critical value for which the degree of consensus exceeds that which would be predicted by Table 1. Summary of Round 1 results. chance was 0.33 . Items with a CVR greater than 0.33 were retained and processed for Round 2. Items with a CVR between 0 Domain Number of Statements where statements consensus was achieved and 0.33 were re-posed to the group. Items with a CVR below 0 in domain (n) were excluded from further rounds. For items for which consensus was not achieved in Round 1 Knowledge 25 12 (e.g. CVR was between 0 and 0.33), the degree of consensus General 5 3 overall and for each subgroup was shown to participants, along Bronchiectasis 15 8 with the question in Round 2. Panellists were asked to re-evaluate Health Literacy 5 1 the importance of the item, in light of their own views and the Skills 21 9 responses of other respondents. In Rounds 2 and 3, analysis was primarily qualitative. Questions Daily Habits 6 3 and answer stems were reformulated in response to panellists’ Response 72 feedback using summative content analysis . Both the frequency to events and salience of suggested changes were taken into account when Communication 8 4 making alterations to the items. Consensus was defined as a content validity ratio (CVR) greater than or equal to 0.33. CVRs range in value from −1 to 1. When greater than 50 percent of participants agree, the CVR is 0. The more conservative CVR ≥ Reporting Summary 0.33 accounts for agreement greater than would be predicted by random Further information on research design is available in the Nature chance. Research Reporting Summary linked to this article. Published in partnership with Primary Care Respiratory Society UK npj Primary Care Respiratory Medicine (2022) 3 KR Smalley et al. 5. The ‘right’ answer would vary by patient, and thus answers management. The assessment can also provide confidence that could not be standardised. patients have a baseline level of knowledge and skills to assume self-management responsibilities, especially soon after diagnosis. Modifications were chosen based on suggestions made by Rather than a self-management score or ranking, this assess- panellists. The feedback was quite detailed, and in certain ment is intended to identify specific gaps in patients’ under- instances suggestions were adopted wholesale. In others, com- standing and abilities, so that education efforts can be tailored to ments from several respondents were combined to form new the specific needs of a given patient. Targeting deficits in this way questions or answer choices. Special attention was paid to items can lead to more meaningful interactions between patients and to which multiple panellists responded similarly. healthcare professionals. Participation was limited to the UK, which may limit generali- Final assessment tool sability for an international audience. An overrepresentation of The output of this process was a 20-item assessment tool to viewpoints from North West London could have biased the measure patients’ self-management capabilities. The questions questionnaire toward practices common to that region. When took various forms: simple multiple choice (n = 5), true/false (n = panellists surfaced concerns about processes or terminology, 4), ‘check all that apply’ (n = 3) and situational vignettes (n = 8). items were revised to apply more generally. Future work is needed Each assessment item addressed either a piece of knowledge or to understand the applicability of this tool to other contexts. skill that is necessary to self-manage effectively and safely. The Because bronchiectasis is an uncommon condition, identifying purpose of the skill-based vignettes was to give patients the non-clinician policymakers with enough knowledge of the disease opportunity to express how they would handle given situations, to contribute was challenging. This may have blurred the showing that they can apply the knowledge that they have. distinction between responses from clinicians and policymakers. The assessment contains two overarching domains: knowledge On the other hand, the high degree of consensus across all and skills. The knowledge domain consists of two sub-domains: stakeholders makes such subgroup analyses less relevant. general health knowledge and bronchiectasis-specific knowledge. Certain topics that were judged to be important for self- Within those, general health knowledge is based in general health management (e.g. understanding one’s own baseline symptoms) literacy, and especially in understanding the importance of are simply not suited for assessments of this type. However, this smoking cessation. Bronchiectasis-specific knowledge addresses assessment is intended as an indicator of a patient’s self- information about disease characteristics and medication use. The management ability, not a comprehensive measure of their skills domain consists of three sub-domains: symptom manage- knowledge and skills. Using this tool in combination with other ment, communication and addressing deterioration. Symptom indicators can give a fuller picture of a person’s self-management management consists of general healthy habits and airway ability. clearance exercises. Communication concerns the ability to assert The self-management expertise of patients with chronic preferences and raise concerns with healthcare professionals. diseases is a patient safety issue. In some sense, patients are Addressing deterioration tests the ability to recognise a potential self-managing any time they make decisions or take actions infection and select the most appropriate level of care for a given related to their symptoms or disease. In the context of change in symptoms. bronchiectasis, the daily process of managing symptoms, main- Psychometric best practice advocates at least two items per taining exercise and medication regimens, and recognising signs content domain . Table 2 presents a content validity matrix for of exacerbation or deterioration, offer ample opportunities to the final assessment items. improve the alignment of self-management decisions with The full assessment tool is presented in Supplementary Note 2. evidence-based practice. It is important to know whether patients Anticipated correct answers are shown in bold. are equipped to self-manage in line with evidence-based guidance, in order to know how best to support them in that effort. It is imperative for the health system to ensure that patients DISCUSSION have the capabilities to self-manage safely, either through self- This is the first and only tool to assess the knowledge and skills management education, wraparound services, or other supports. patients need to self-manage bronchiectasis, a disease for which This assessment tool can be used as an indicator of the self- self-management is critical, but formal self-management support management ability—and therefore the resource needs—of is lacking. The study leveraged the expertise of 30 people in three people with bronchiectasis. In this way, it could guide the stakeholder groups (bronchiectasis patients, clinicians and policy- formulation of individual self-management plans in the context of makers) to develop the Self-Management Abilities Test. a clinical encounter or annual review. Bronchiectasis is a relatively rare disease for which there are few The Self-Management Abilities Test could also be used in the disease-specific self-management programmes , but significant development and evaluation of self-management programmes for information needs . Whilst previous measures like the Lung bronchiectasis. In addition to outlining the essential content of Information Needs Questionnaire to ask patients for their such a programme, the assessment itself could be used at baseline perceptions of the adequacy of information they receive from and at a follow-up to measure the attainment of learning clinicians , it does not address patients’ ability to recall or act outcomes. The assessment could be used in conjunction with upon that information. The new Self-Management Abilities Test the PRISMS taxonomy to clarify the roles of clinicians and addresses this gap. patients in self-management interventions and to tailor those The study was conducted as a modified Delphi over three interventions to individuals. rounds. This iterative process allowed participants to provide Finally, providing patients with an inventory of what they know increasingly granular insights and feedback. The assessment has and are able to do relative to their disease can improve their the added advantage of having objectively correct answers, rather confidence in their ability to self-manage. Likewise, patients will than being scaled psychometrically, for instance by rating on a be able to demonstrate their capabilities to clinicians who may or Likert scale . may not be part of their regular care team. Clarity around what This improves the ease of interpretation of results and their they are expected to know, and where they may need more relevance to the clinical context. Patients’ responses to specific support, can empower patients in communicating with healthcare questions can be used as a starting point for patient education, professionals. discussions of self-management practices and more abstract The assessment will undergo validity and reliability testing on a concepts like perceived ability or self-efficacy for disease large sample. We will be testing whether the assessment produces npj Primary Care Respiratory Medicine (2022) 3 Published in partnership with Primary Care Respiratory Society UK KR Smalley et al. Published in partnership with Primary Care Respiratory Society UK npj Primary Care Respiratory Medicine (2022) 3 Table 2. Content validity matrix for the assessment tool. Knowledge Skills General health knowledge Bronchiectasis-specific Symptom management Communication Addressing deterioration knowledge Item Health Smoking Disease Medications Healthy habits Airway Assert Raise Identify Seek appropriate literacy cessation characteristics clearance preferences concerns possible level of care infection 1. Sources of health x information 2. Name of disease x 3. Basic pathophysiology x 4. Staying hydrated x 5. Healthy diet x 6. Antibiotic resistance x 7. Smoking and x lung damage 8. Second-hand smoke x 9. Airway clearance, x frequency 10. Airway clearance, x duration 11. Asserting treatment x preferences 12. Watchful waiting xx 13. Starting a rescue pack xx 14. Recognising an xx emergency 15. Watchful waiting xx 16. Special considerations xx for bronchiectasis 17. Raising concerns about xx medications 18. Advocating for x needed care 19. Regular medications x 20. 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Critical values for Lawshe’s content validity ratio: revisiting 12. Tsang, K. W. & Bilton, D. Clinical challenges in managing bronchiectasis. Respir- the original methods of calculation. Meas. Eval. Couns. Dev. 47,79–86 (2014). ology 14, 637–650 (2009). npj Primary Care Respiratory Medicine (2022) 3 Published in partnership with Primary Care Respiratory Society UK KR Smalley et al. 41. Hsieh, H. F. & Shannon, S. E. Three approaches to qualitative content analysis. ADDITIONAL INFORMATION Qual. Health Res. 15, 1277–1288 (2005). Supplementary information The online version contains supplementary material available at https://doi.org/10.1038/s41533-021-00265-5. ACKNOWLEDGEMENTS Correspondence and requests for materials should be addressed to Katelyn R. Smalley. The authors would like to acknowledge the input of the 30 Delphi expert panellists. An additional 15 anonymous interviewees contributed to the development of the Reprints and permission information is available at http://www.nature.com/ initial questionnaire design. We also thank the National Institute for Health Research reprints (NIHR) Imperial Patient Safety Translation Research Centre (PSTRC) for its support of this research. Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. AUTHOR CONTRIBUTIONS K.R.S.: Conceptualisation, methodology, investigation, data curation, formal analysis, writing—original draft, Writing—review & editing. L.A.: Conceptualisation, methodol- Open Access This article is licensed under a Creative Commons ogy, writing—review & editing, and Supervision. K.F.: Conceptualisation, methodol- Attribution 4.0 International License, which permits use, sharing, ogy, writing—review & editing. 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The self-management abilities test (SMAT): a tool to identify the self-management abilities of adults with bronchiectasis

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www.nature.com/npjpcrm ARTICLE OPEN The self-management abilities test (SMAT): a tool to identify the self-management abilities of adults with bronchiectasis 1,2✉ 1 1 1 1 Katelyn R. Smalley , Lisa Aufegger , Kelsey Flott , Erik K. Mayer and Ara Darzi Bronchiectasis is an increasingly common chronic respiratory disease which requires a high level of patient engagement in self- management. Whilst the need for self-management has been recognised, the knowledge and skills needed to do so— and the extent to which patients possess these—has not been well-specified. On one hand, understanding the gaps in people’s knowledge and skills can enable better targeting of self-management supports. On the other, clarity about what they do know can increase patients’ confidence to self-manage. This study aims to develop an assessment of patients’ ability to self-manage effectively, through a consensus-building process with patients, clinicians and policymakers. The study employs a modified, online three-round Delphi to solicit the opinions of patients, clinicians, and policymakers (N = 30) with experience of bronchiectasis. The first round seeks consensus on the content domains for an assessment of bronchiectasis self-management ability. Subsequent rounds propose and refine multiple-choice assessment items to address the agreed domains. A group of ten clinicians, ten patients and ten policymakers provide both qualitative and quantitative feedback. Consensus is determined using content validity ratios. Qualitative feedback is analysed using the summative content analysis method. Overarching domains are General Health Knowledge, Bronchiectasis-Specific Knowledge, Symptom Management, Communication, and Addressing Deterioration, each with two sub- domains. A final assessment tool of 20 items contains two items addressing each sub-domain. This study establishes that there is broad consensus about the knowledge and skills required to self-manage bronchiectasis effectively, across stakeholder groups. The output of the study is an assessment tool that can be used by patients and their healthcare providers to guide the provision of self- management education, opportunities, and support. npj Primary Care Respiratory Medicine (2022) 32:3 ; https://doi.org/10.1038/s41533-021-00265-5 INTRODUCTION with an estimated prevalence of 212,000 people in the UK, and a 20% increase in prevalence from 2008 to 2012 . An estimated 500 Self-management is critical in chronic diseases like bronchiectasis, per 100,000 people in the UK have been diagnosed with since much of the treatment takes place at home, outside the bronchiectasis, which equates to 50 patients in a GP practice of supervision of healthcare professionals. Many patients over time 10,000 . A diagnosis of bronchiectasis is confirmed radiologically become ‘experts’ with respect to their condition, but that 1,2 by permanent, abnormal dilation of the bronchi . Bronchiectasis expertise has been contested and not rigorously specified . can result from diverse causes, and often the cause is unknown . Policymakers have long recognised that patients have a role to The disease is characterised by recurrent infections called play in managing chronic illnesses, through self-care, commu- exacerbations, and the goals of treatment are to prevent nication with healthcare providers and moderating the frequency exacerbations, halt disease progression and minimise symptoms . 3–5 and intensity of the care they receive . However, clarity is lacking Bronchiectasis is often termed a ‘vicious circle of infection and with respect to what patients can do (and how that varies by inflammation’ (British Thoracic Society ). The cyclical nature of the individual), what they must be able to do (for safety reasons) and disease provides an opportunity to learn over time. The daily what they should be responsible for (as a non-healthcare process of managing symptoms, maintaining exercise and professional contributing to the management of their chronic medication regimens, and recognising signs of exacerbation or disease). Others have highlighted that some degree of variation deterioration, provide people with bronchiectasis ample opportu- on these dimensions is appropriate; thus it is necessary to tailor nities to engage in self-management. Self-management can be self-management interventions to individual patients . This is challenging to characterise because it can mean different things particularly critical in bronchiectasis, for which treatment is 13 to different people in different contexts . Most commonly, the variable and personalised self-management plans are recom- term self-management can be used to describe both the daily mended for all . This study explored what patients must know and activities that patients undertake to maintain control over their be able to do to safely self-manage bronchiectasis. In consultation disease, but also interventions that train patients in these with a multi-stakeholder expert panel, we developed an assess- activities . Self-management can refer to a wide range of ment tool to identify the extent to which adults with bronch- behaviours, including exercise, symptom monitoring and asking iectasis have those necessary knowledge and skills. Bronchiectasis follow-up questions in healthcare appointments . Some self- is a chronic respiratory disease that is characterised by symptoms management activities (e.g. routine airway clearance) are disease- such as dyspnoea, productive cough, chest discomfort and specific, and others (e.g. smoking cessation) are universal. recurrent chest infections . It is an increasingly common condition, Behaviour change interventions called self-management NIHR Imperial PSTRC (Patient Safety and Translational Research Centre), Institute of Global Health Innovation, Department of Surgery & Cancer, Imperial College London, London, UK. Community and Primary Care Research Group, Plymouth Institute of Health and Care Research, University of Plymouth, Plymouth, UK. email: k.smalley17@imperial.ac.uk Published in partnership with Primary Care Respiratory Society UK 1234567890():,; KR Smalley et al. programmes have become commonplace in a variety of chronic Delphi is a flexible method that has been used for multiple conditions, but there is a paucity of data about the optimal purposes in health research, including assessment develop- 29,30 content of such programmes tailored to bronchiectasis. A recent ment . It has the advantage of collecting expert opinions systematic review found only two bronchiectasis self- asynchronously, allowing the input of multiple individuals without 16 31 management programmes globally . These studies, both from geographic or scheduling limitations . For the purposes of this the UK, were unable to establish benefits on their primary study, it also allowed the participation of seriously chronically ill outcome of health-related quality of life and did not report on individuals who could complete the questionnaires from home. some clinically-relevant outcomes like exacerbations requiring The anonymity of Delphi participants reduces the risk of power 16 32,33 antibiotics . On the other hand, qualitative research suggests that dynamics confounding responses . This study modified the information deficits may be a barrier to effective self-management method to first achieve consensus on content domains, and then of bronchiectasis . Both knowledge, defined as ‘awareness of the further develop assessment items that address those domains. existence of something’, and skills, defined as ‘ability or proficiency acquired through practice’ , are critical capabilities Participation for self-management. We term the knowledge and skills needed This study, which took place in the UK, solicited expert opinions to self-manage a chronic disease self-management ability. In this from three stakeholder groups: study, we work with an expert panel of clinicians, policymakers and people with bronchiectasis to define the knowledge and skills 1. Adult patients with bronchiectasis (either with or without needed to self-manage bronchiectasis safely and to develop an cystic fibrosis). assessment tool to measure the extent to which patients possess 2. Clinicians (general practitioners, respiratory consultants/ those knowledge and skills. In accordance with best practices for specialists, respiratory physiotherapists, specialist nurses, assessment development, the literature was searched for poten- pharmacists) who currently work in a clinical capacity, and tially relevant assessments that would supersede the need for a who have experience treating bronchiectasis. new tool . Four generic self-management-related assessments 3. Policymakers with experience of bronchiectasis (broadly were identified: the Patient Activation Measure , the Chronic conceived as people whose current responsibilities include Disease Self-Efficacy Scale , the Test of Functional Health Literacy not only direct patient care, but also the development of 22 23 in Adults and the Health Education Impact Questionnaire . policies and procedures for the care of these patients either Aside from being unable to address the specific information needs at the multi-disciplinary team, trust, regional or national of patients with bronchiectasis as identified by Hester et al. (2018), level). they also assessed concepts other than self-management knowl- This range of stakeholders were chosen to provide a multi- edge and skills (namely, patient activation and self-efficacy) . Two faceted view of self-management ability. Reflecting sample size respiratory-specific assessments were identified. The Bristol COPD guidance for Delphi studies, ten participants represented each Knowledge Questionnaire was the only knowledge assessment stakeholder group, for a panel of 30 participants in total . identified . As suggested by the name, this questionnaire assessed knowledge only, and not skills. Further, whilst there is Recruitment and study setting considerable overlap in the knowledge and skills needed to Patients were recruited online via the Voice Global and People in manage COPD and bronchiectasis, there are important differences Research networks of lay researchers, Twitter, the British Lung that must also be taken into account. Finally, the Lung Information Foundation’s Breathe Easy support groups, and through informal Needs Questionnaire assessed patients’ perception of how well clinicians communicated information to them . These percep- networks of lay representatives at Imperial College. Clinicians were tions are distinct from self-management ability per se, which recruited via respiratory professional societies such as BronchUK entails being able to reproduce or act on that information. We did and the British Thoracic Society, publicly available profiles and not identify any assessments that measure patients’ self- personal references. Policymakers were identified via public management knowledge and skills directly. Since these are two research and policy profiles, and leadership of professional key outcomes of self-management interventions, this is a societies, research groups or major clinical studies of bronchiec- significant gap in the literature. This is especially true for tasis. The panel was recruited from across the UK and provided bronchiectasis, for which disease-related information is particu- written informed consent to participate. larly important . For all of these reasons, the existing literature The Delphi was conducted in three rounds, over the course of supported the development of a new assessment tool that would 9 months. The contents of the Delphi questionnaires were derived measure self-management ability directly, and specifically with from the literature on self-management of bronchiectasis and respect to bronchiectasis. The aim of this work was to co-develop consultation with respiratory clinicians and patient experts. The a measure of patients’ ability to self-manage bronchiectasis, with questionnaires were administered online via Qualtrics software patients, clinicians, and policymakers with experience of the licensed to Imperial College London. Data were stored and disease. Two specific objectives serve to meet this aim: managed in Excel, and quantitative analyses were completed either in R or Excel. Data were stored on Imperial’s Big Data To achieve a consensus definition of effective self- Analytic Unit (BDAU) secure server in accordance with UK Health management in terms of knowledge and skills. Research Authority (HRA) ethical approval (IRAS # 250224). To produce a measurement tool of patients’ ability to self- manage bronchiectasis. Data collection The purpose of Round 1 was to agree to the content domains that should be covered by an assessment of self-management ability METHODS for bronchiectasis. A preliminary list of content domains was Study design generated through interviews with stakeholders and a literature 26,27 This study employed an online, modified Delphi method . The review. The content of self-management programmes for 16,35,36 Delphi technique is an anonymous, iterative process to solicit bronchiectasis and other respiratory diseases , taxonomies 37,38 expert opinion through a series of structured questionnaires, with of behaviour change and self-management support and other 20,21,24,25 the purpose to either gain consensus or identify systematic assessments of preparedness for self-management were disagreement . consulted in the development of this list. npj Primary Care Respiratory Medicine (2022) 3 Published in partnership with Primary Care Respiratory Society UK 1234567890():,; KR Smalley et al. Semi-structured interviews with respiratory patients, clinicians RESULTS and policymakers (who were not involved in the present study) A total of 30 participants (out of 63 who were invited by email) provided insights on the key knowledge, skills and attitudes contributed to Round 1. Participants were evenly distributed needed to effectively self-manage long-term respiratory diseases between the stakeholder groups, with ten patients, ten clinicians (results not yet published). and ten policymakers responding. Twenty-six participants (86.7%) Participants were presented with items that may be related to a responded in Round 2 and 25 (83.3%) participated in Round 3. patient’s ability to self-manage bronchiectasis effectively. They were asked to rank how important they believed these items were Quantitative analysis to a patient’s ability to self-manage this disease on a seven-point Round 1 of the Delphi demonstrated an early degree of consensus Likert Scale, from 1 = not relevant to 7 = essential . Questions on content domains. Of the 46 initial knowledge and skill items, 21 were posed in the format: ‘To what extent do you believe it is had a content validity ratio (CVR) over 0.33, meaning that important for patients to…?’ Participants were provided with agreement on the inclusion of that item was greater than space to explain their answers. predicted by chance. Nineteen items had a CVR below 0, The purpose of Round 2 was to solicit opinions on potential indicating the item was irrelevant and should be excluded. Table 1 shows responses based on the question topic. assessment items addressing the content domains agreed in Approximately half of the questions in each content domain Round 1. Round 2 was divided into two sections—Round 2a and were retained. Bronchiectasis-specific knowledge items and Round 2b. Round 2a included items for which consensus was communication skills questions were more likely to be included achieved in Round 1. For these items, participants were asked to in subsequent rounds. react to a draft assessment question that might be proposed to In Round 2, sample questions and answers for the assessment patients to test the domain. Assessment questions took the form were posed. One item had a CVR below 0 and was dropped, of simple multiple choice, True/False, vignettes, and ‘check all that leaving 20 items in the scale. Because of attrition in the response apply’. Round 2b focussed on items for which consensus was not rate, the CVR threshold used in Round 2 was 0.39 instead of 0.33. achieved in the previous round. Participants were asked to This means that at least 18 of the 26 respondents in this round reconsider the item in light of the responses of other participants, needed to rank an item as essential for it to be included. and either maintain or change their opinion on the inclusion of In Round 3, participants reviewed the changes made to the the item. scale and affirmed the inclusion or exclusion of items. Again Finally, in Round 3, participants reviewed the revised assess- because of attrition, the CVR threshold was raised to 0.44. On ment, confirmed the items to be included, and provided average the degree of consensus in Round 3 was 97.2%, with suggestions to further clarify the wording of the assessment unanimous inclusion of 13 items. question stems and answer choices. Qualitative analysis Modifications were made to question stems and answer choices in Data analysis response to qualitative feedback. Feedback came in five general Consensus was evaluated not only as observed, but also relative to forms: the degree of consensus that would be expected by chance, using a content validity ratio . Lawshe’s content validity ratio (CVR) 1. The question did not test the concept as intended. method was developed to determine the validity of panellists’ 2. The item referred to local terminology or processes that assessments of essential knowledge and skills. It is a linear would not be understood by all respondents. transformation of the percent consensus, such that a higher 3. The wording or terminology was confusing, generally. 4. The item concerned non-essential information that patients degree of consensus is weighted more heavily . This transforma- shouldn’t be expected to know outright, but rather should tion increases the confidence that the consensus level observed have the skills to find when needed. reflects the true level of agreement, and allows for the elimination of items that ‘might reasonably have occurred through chance’ . For a sample of this size (N = 30), the critical value for which the degree of consensus exceeds that which would be predicted by Table 1. Summary of Round 1 results. chance was 0.33 . Items with a CVR greater than 0.33 were retained and processed for Round 2. Items with a CVR between 0 Domain Number of Statements where statements consensus was achieved and 0.33 were re-posed to the group. Items with a CVR below 0 in domain (n) were excluded from further rounds. For items for which consensus was not achieved in Round 1 Knowledge 25 12 (e.g. CVR was between 0 and 0.33), the degree of consensus General 5 3 overall and for each subgroup was shown to participants, along Bronchiectasis 15 8 with the question in Round 2. Panellists were asked to re-evaluate Health Literacy 5 1 the importance of the item, in light of their own views and the Skills 21 9 responses of other respondents. In Rounds 2 and 3, analysis was primarily qualitative. Questions Daily Habits 6 3 and answer stems were reformulated in response to panellists’ Response 72 feedback using summative content analysis . Both the frequency to events and salience of suggested changes were taken into account when Communication 8 4 making alterations to the items. Consensus was defined as a content validity ratio (CVR) greater than or equal to 0.33. CVRs range in value from −1 to 1. When greater than 50 percent of participants agree, the CVR is 0. The more conservative CVR ≥ Reporting Summary 0.33 accounts for agreement greater than would be predicted by random Further information on research design is available in the Nature chance. Research Reporting Summary linked to this article. Published in partnership with Primary Care Respiratory Society UK npj Primary Care Respiratory Medicine (2022) 3 KR Smalley et al. 5. The ‘right’ answer would vary by patient, and thus answers management. The assessment can also provide confidence that could not be standardised. patients have a baseline level of knowledge and skills to assume self-management responsibilities, especially soon after diagnosis. Modifications were chosen based on suggestions made by Rather than a self-management score or ranking, this assess- panellists. The feedback was quite detailed, and in certain ment is intended to identify specific gaps in patients’ under- instances suggestions were adopted wholesale. In others, com- standing and abilities, so that education efforts can be tailored to ments from several respondents were combined to form new the specific needs of a given patient. Targeting deficits in this way questions or answer choices. Special attention was paid to items can lead to more meaningful interactions between patients and to which multiple panellists responded similarly. healthcare professionals. Participation was limited to the UK, which may limit generali- Final assessment tool sability for an international audience. An overrepresentation of The output of this process was a 20-item assessment tool to viewpoints from North West London could have biased the measure patients’ self-management capabilities. The questions questionnaire toward practices common to that region. When took various forms: simple multiple choice (n = 5), true/false (n = panellists surfaced concerns about processes or terminology, 4), ‘check all that apply’ (n = 3) and situational vignettes (n = 8). items were revised to apply more generally. Future work is needed Each assessment item addressed either a piece of knowledge or to understand the applicability of this tool to other contexts. skill that is necessary to self-manage effectively and safely. The Because bronchiectasis is an uncommon condition, identifying purpose of the skill-based vignettes was to give patients the non-clinician policymakers with enough knowledge of the disease opportunity to express how they would handle given situations, to contribute was challenging. This may have blurred the showing that they can apply the knowledge that they have. distinction between responses from clinicians and policymakers. The assessment contains two overarching domains: knowledge On the other hand, the high degree of consensus across all and skills. The knowledge domain consists of two sub-domains: stakeholders makes such subgroup analyses less relevant. general health knowledge and bronchiectasis-specific knowledge. Certain topics that were judged to be important for self- Within those, general health knowledge is based in general health management (e.g. understanding one’s own baseline symptoms) literacy, and especially in understanding the importance of are simply not suited for assessments of this type. However, this smoking cessation. Bronchiectasis-specific knowledge addresses assessment is intended as an indicator of a patient’s self- information about disease characteristics and medication use. The management ability, not a comprehensive measure of their skills domain consists of three sub-domains: symptom manage- knowledge and skills. Using this tool in combination with other ment, communication and addressing deterioration. Symptom indicators can give a fuller picture of a person’s self-management management consists of general healthy habits and airway ability. clearance exercises. Communication concerns the ability to assert The self-management expertise of patients with chronic preferences and raise concerns with healthcare professionals. diseases is a patient safety issue. In some sense, patients are Addressing deterioration tests the ability to recognise a potential self-managing any time they make decisions or take actions infection and select the most appropriate level of care for a given related to their symptoms or disease. In the context of change in symptoms. bronchiectasis, the daily process of managing symptoms, main- Psychometric best practice advocates at least two items per taining exercise and medication regimens, and recognising signs content domain . Table 2 presents a content validity matrix for of exacerbation or deterioration, offer ample opportunities to the final assessment items. improve the alignment of self-management decisions with The full assessment tool is presented in Supplementary Note 2. evidence-based practice. It is important to know whether patients Anticipated correct answers are shown in bold. are equipped to self-manage in line with evidence-based guidance, in order to know how best to support them in that effort. It is imperative for the health system to ensure that patients DISCUSSION have the capabilities to self-manage safely, either through self- This is the first and only tool to assess the knowledge and skills management education, wraparound services, or other supports. patients need to self-manage bronchiectasis, a disease for which This assessment tool can be used as an indicator of the self- self-management is critical, but formal self-management support management ability—and therefore the resource needs—of is lacking. The study leveraged the expertise of 30 people in three people with bronchiectasis. In this way, it could guide the stakeholder groups (bronchiectasis patients, clinicians and policy- formulation of individual self-management plans in the context of makers) to develop the Self-Management Abilities Test. a clinical encounter or annual review. Bronchiectasis is a relatively rare disease for which there are few The Self-Management Abilities Test could also be used in the disease-specific self-management programmes , but significant development and evaluation of self-management programmes for information needs . Whilst previous measures like the Lung bronchiectasis. In addition to outlining the essential content of Information Needs Questionnaire to ask patients for their such a programme, the assessment itself could be used at baseline perceptions of the adequacy of information they receive from and at a follow-up to measure the attainment of learning clinicians , it does not address patients’ ability to recall or act outcomes. The assessment could be used in conjunction with upon that information. The new Self-Management Abilities Test the PRISMS taxonomy to clarify the roles of clinicians and addresses this gap. patients in self-management interventions and to tailor those The study was conducted as a modified Delphi over three interventions to individuals. rounds. This iterative process allowed participants to provide Finally, providing patients with an inventory of what they know increasingly granular insights and feedback. The assessment has and are able to do relative to their disease can improve their the added advantage of having objectively correct answers, rather confidence in their ability to self-manage. Likewise, patients will than being scaled psychometrically, for instance by rating on a be able to demonstrate their capabilities to clinicians who may or Likert scale . may not be part of their regular care team. Clarity around what This improves the ease of interpretation of results and their they are expected to know, and where they may need more relevance to the clinical context. Patients’ responses to specific support, can empower patients in communicating with healthcare questions can be used as a starting point for patient education, professionals. discussions of self-management practices and more abstract The assessment will undergo validity and reliability testing on a concepts like perceived ability or self-efficacy for disease large sample. We will be testing whether the assessment produces npj Primary Care Respiratory Medicine (2022) 3 Published in partnership with Primary Care Respiratory Society UK KR Smalley et al. Published in partnership with Primary Care Respiratory Society UK npj Primary Care Respiratory Medicine (2022) 3 Table 2. Content validity matrix for the assessment tool. Knowledge Skills General health knowledge Bronchiectasis-specific Symptom management Communication Addressing deterioration knowledge Item Health Smoking Disease Medications Healthy habits Airway Assert Raise Identify Seek appropriate literacy cessation characteristics clearance preferences concerns possible level of care infection 1. Sources of health x information 2. Name of disease x 3. Basic pathophysiology x 4. Staying hydrated x 5. Healthy diet x 6. Antibiotic resistance x 7. Smoking and x lung damage 8. Second-hand smoke x 9. Airway clearance, x frequency 10. Airway clearance, x duration 11. Asserting treatment x preferences 12. Watchful waiting xx 13. Starting a rescue pack xx 14. Recognising an xx emergency 15. Watchful waiting xx 16. Special considerations xx for bronchiectasis 17. Raising concerns about xx medications 18. Advocating for x needed care 19. Regular medications x 20. First-line antibiotics x KR Smalley et al. similar results over time, whether it accurately describes the 13. Grady, P. A. & Gough, L. L. Self-management: a comprehensive approach to management of chronic conditions. Am. J. Public Health 108, S430–S436 (2018). concepts we are interested in measuring, and whether there is an 14. Bodenheimer, T., Lorig, K., Holman, H. & Grumbach, K. Patient self-management association between a person’s self-management ability and other of chronic disease in primary care. JAMA 288, 2469 (2002). characteristics. 15. Barlow, J., Wright, C., Sheasby, J., Turner, A. & Hainsworth, J. Self-management The rationale for developing this assessment was to provide approaches for people with chronic conditions: a review. Patient Educ. Couns. 48, both clinicians and patients with a tool to facilitate discussions 177–187 (2002). about patients’ preparedness to self-manage bronchiectasis (and 16. Kelly, C. et al. Self-management for bronchiectasis. Cochrane Database Syst. Rev. to do so safely). However, it will be important to evaluate the 2018, CD012528 (2018). extent to which the tool is useful in practice. A process evaluation, 17. Hester, K. L. M., Newton, J., Rapley, T. & De Soyza, A. Patient information, edu- gathering the perspectives of patients and clinicians on using the cation and self-management in bronchiectasis: facilitating improvements to tool, will accompany the validation study. optimise health outcomes. BMC Pulm. Med. 18, 80 (2018). 18. Cane, J., O’Connor, D. & Michie, S. Validation of the theoretical domains frame- The Self-Management Abilities Test in its current form is specific work for use in behaviour change and implementation research. Implement. Sci. to bronchiectasis, but many of the items are general health 7, 37 (2012). knowledge and skills that may apply to other chronic diseases. 19. Streiner, D. L. & Norman, G. R. 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An additional 15 anonymous interviewees contributed to the development of the Reprints and permission information is available at http://www.nature.com/ initial questionnaire design. We also thank the National Institute for Health Research reprints (NIHR) Imperial Patient Safety Translation Research Centre (PSTRC) for its support of this research. Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. AUTHOR CONTRIBUTIONS K.R.S.: Conceptualisation, methodology, investigation, data curation, formal analysis, writing—original draft, Writing—review & editing. L.A.: Conceptualisation, methodol- Open Access This article is licensed under a Creative Commons ogy, writing—review & editing, and Supervision. K.F.: Conceptualisation, methodol- Attribution 4.0 International License, which permits use, sharing, ogy, writing—review & editing. E.K.M.: Conceptualisation, methodology, writing— adaptation, distribution and reproduction in any medium or format, as long as you give review & editing, supervision. A.D.: Conceptualisation, writing—review & editing, appropriate credit to the original author(s) and the source, provide a link to the Creative supervision, and funding acquisition. Commons license, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the COMPETING INTERESTS article’s Creative Commons license and your intended use is not permitted by statutory This paper is independent research funded by the National Institute for Health regulation or exceeds the permitted use, you will need to obtain permission directly Research (NIHR) Imperial Patient Safety Translational Research Centre (PSTRC) with from the copyright holder. To view a copy of this license, visit http://creativecommons. infrastructure support from the NIHR Imperial Biomedical Research Centre (BRC). The org/licenses/by/4.0/. views expressed in this publication are those of the authors and not necessarily those of the NHS, NIHR, or Department of Health and Social Care. A.D. is Chair of the Health Security initiative at Flagship Pioneering UK Ltd. © Crown 2022 Published in partnership with Primary Care Respiratory Society UK npj Primary Care Respiratory Medicine (2022) 3

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