Definition of a COPD self-management intervention: International Expert Group consensus.

There is an urgent need for consensus on what defines a chronic obstructive pulmonary disease (COPD) self-management intervention. We aimed to obtain consensus regarding the conceptual definition of a COPD self-management intervention by engaging an international panel of COPD self-management experts using Delphi technique features and an additional group meeting.In each consensus round the experts were asked to provide feedback on the proposed definition and to score their level of agreement (1=totally disagree; 5=totally agree). The information provided was used to modify the definition for the next consensus round. Thematic analysis was used for free text responses and descriptive statistics were used for agreement scores.In total, 28 experts participated. The consensus round response rate varied randomly over the five rounds (ranging from 48% (n=13) to 85% (n=23)), and mean definition agreement scores increased from 3.8 (round 1) to 4.8 (round 5) with an increasing percentage of experts allocating the highest score of 5 (round 1: 14% (n=3); round 5: 83% (n=19)).In this study we reached consensus regarding a conceptual definition of what should be a COPD self-management intervention, clarifying the requisites for such an intervention. Operationalisation of this conceptual definition in the near future will be an essential next step.

Medicine: a rethink? Are entrants to the profession and the way it is organised fit for purpose?

The health burden in most countries has changed. Although acute care is needed for trauma, acute illness and exacerbations of chronic disease, most of the burden is now long term. These patients need different approaches, with more emphasis upon supporting self-management, enhancing lifestyle changes, aiding compliance by shared decision-making and providing more convenient follow-up that appreciates the likelihood of multimorbidity. Integrated care will increasingly be offered from within the community. The current hospital- and doctor-centric focus needs to change to one where specialists work in the community as much as in hospitals and share this different type of care with others. For potential future doctors, the scientific basis of medicine will still underpin their unique role in diagnosis and prescribing, but they will need to understand these other changes and to be selected according to attributes compatible with their future role, and then be trained and assessed accordingly.

Nurse led versus lay educators support for those with asthma in primary care: a costing study.

BACKGROUND: Regular review and support for asthma self-management is promoted in guidelines. A randomised controlled trial suggested that unscheduled health care usage was similar when patients were offered self management support by a lay-trainer or practice nurses. METHODS: Following the RCT, a costing study was undertaken using the trial data to account for the cost of delivery of the service under both strategies and the resulting impact on unscheduled healthcare (measure of effectiveness) in this trial. RESULTS: One year data (n = 418) showed that 29% (61/205) of the nurse group required unscheduled healthcare (177 events) compared with 30.5% (65/213) for lay-trainers (178 events).The training costs for the lay-trainers were greater than nurses (£36 versus £18 respectively per patient, p<0.001), however, the consultation cost for lay-trainers were lower than nurses (£6 per patient versus £24, p<0.001). If the cost of unscheduled healthcare are accounted for then the costs of nurses is £161, and £135 for lay-trainers (mean difference £25, [95% CI = -£97, £149, p = 0.681]). The total costs (delivery and unscheduled healthcare) were £202 per patient for nurses versus £178 for lay-trainers, (mean difference £24, [95%CI = -£100, £147, p = 0.707]). CONCLUSIONS: There were no significant differences in the cost of training and healthcare delivery between nurse and lay trainers, and no significant difference in the cost of unscheduled health care use.

A centralised respiratory diagnostic service for primary care: a 4-year audit.

BACKGROUND: The literature shows that delayed or erroneous diagnosis of respiratory conditions may be common in primary care due to underuse of spirometry or poor spirometric technique. The Community Respiratory Assessment Unit (CRAU) was established to optimise diagnosis and treatment of respiratory disease by providing focused history-taking, quality-assured spirometry, and evidence-based guideline-derived management advice. AIMS: To review the service provided by the CRAU to primary care health professionals. METHODS: Data from 1,156 consecutive GP referrals over 4 years were analysed. RESULTS: From the 1,156 referrals, 666 were referred for one of five common reasons: suspected asthma, confirmed asthma, suspected chronic obstructive pulmonary disease (COPD), confirmed COPD, or unexplained breathlessness. COPD was the most prevalent referral indication (445/666, 66.8%), but one-third of suggested diagnoses of COPD by the GP were found to be incorrect (161/445, 36%) with inappropriate prescribing of inhaled therapies resulting from this misdiagnosis. Restrictive pulmonary defects (56/666, 8% of referrals) were overlooked and often mistaken for obstructive conditions. The potential for obesity to cause breathlessness may not be fully appreciated. CONCLUSIONS: Misdiagnosis has significant financial, ethical, and safety implications. This risk may be minimised by better support for primary care physicians such as diagnostic centres (CRAU) or alternative peripatetic practice-based services operating to quality-controlled standards.

Self-management programmes for COPD: moving forward.

Self-management is of increasing importance in chronic obstructive pulmonary disease (COPD) management. However, there is confusion over what processes are involved, how the value of self-management should be determined, and about the research priorities. To gain more insight into and agreement about the content of programmes, outcomes, and future directions of COPD self-management, a group of interested researchers and physicians, all of whom had previously published on this subject and who had previously collaborated on other projects, convened a workshop. This article summarises their initial findings. Self-management programmes aim at structural behaviour change to sustain treatment effects after programmes have been completed. The programmes should include techniques aimed at behavioural change, be tailored individually, take the patient's perspective into account, and may vary with the course of the patient's disease and co-morbidities. Assessment should include process variables. This report is a step towards greater conformity in the field of self-management. To enhance clarity regarding effectiveness, future studies should clearly describe their intervention, be properly designed and powered, and include outcomes that focus more on the acquisition and practice of new skills. In this way more evidence and a better comprehension on self-management programmes will be obtained, and more specific formulation of guidelines on self-management made possible.

Developing a pictorial Epworth Sleepiness Scale.

OBJECTIVE: The Epworth Sleepiness Scale (ESS) was designed to be self-completed by the patient. However, it may not be understood by all, and unrecognised problems with literacy can impair the process. The ESS has been translated into a pictorial version for use in those with normal or diminished literacy skills. METHODS: An evaluation of the patients' ability to self-complete the ESS was undertaken in sleep and non-sleep respiratory clinics. Errors or problems encountered were recorded on a standard questionnaire. With the aid of a medical artist, pictorial representations of the eight ESS questions were developed and the new pictorial ESS was offered to patients alongside the traditional ESS. The two scales were compared for agreement with a kappa statistic, and patients were asked to record a preference for either the written or the pictorial scale. RESULTS: Evaluation of the traditional ESS showed that 33.8% (27/80) of ESS-naive patients made errors and 22.5% (18/80) needed help completing the questionnaire. The translated pictorial ESS showed good agreement with the traditional ESS on most questions; median kappa score 0.63, IQR 0.04. Fifty-five per cent reported a preference for the pictorial scale compared with the standard written ESS. Despite the fact that errors were frequently made on the traditional ESS, 96.8% of participants in the second study reported both scales to be easy to complete. More people (75.6%) reported the pictorial ESS to be very easy, in comparison with (64.6%) the worded ESS questionnaire. CONCLUSION: Errors are common when patients self-complete the traditional written ESS. Pictures with words have been shown to enhance the understanding and translation of medical information, and a pictorial translation of the ESS produces scores comparable with the traditional ESS and may be a suitable alternative for those with normal or diminished literacy.

Promoting recruitment of minority ethnic groups into research: qualitative study exploring the views of South Asian people with asthma.

BACKGROUND: We sought to understand the barriers and facilitators to participation in research from the perspectives of South Asian people with asthma. METHODS: Eight focus groups were conducted in the preferred language of participants. Sampling was purposeful to ensure inclusion of males and females from differing ethnic, linguistic and religious backgrounds. RESULTS: The forming of trusting relationships was described as pivotal to the successful recruitment of minority ethnic groups into research; personalized approaches were likely to be better received than more impersonal written approaches. Notable barriers to participation included: the stigma of being labelled with asthma; concerns surrounding participation in pharmaceutical trials; major time or travel commitments and a failure to show respect by not making information available in minority ethnic languages. Flexibility, in terms of timing, location and respecting of cultural and religious sensitivities around gender segregation, together with the offer of incentives, were highlighted as key factors to promote participation. CONCLUSIONS: The barriers to recruitment are largely surmountable, but these will necessitate the use of resource intensive and more personalized approaches than are commonly employed for the White European origin population. Our proposed model to enhance recruitment is likely to have transferability beyond the field of asthma.

Why is spirometry underused in the diagnosis of the breathless patient: a qualitative study.

BACKGROUND: Use of spirometry is essential for the accurate diagnosis of respiratory disease but it is underused in both primary and specialist care. In the current study, we have explored the reasons for this underuse. METHODS: Five separate focus groups were undertaken with final year medical undergraduates, junior hospital doctors, general practitioners (GPs) and specialist trainees in respiratory medicine. The participants were not told prior to the session that we were specifically interested in their views about spirometry but discussion was moderated to elicit their approaches to the diagnosis of a breathless patient, their use of investigations and their learning preferences. RESULTS: Undergraduates and junior doctors rarely had a systematic approach towards the breathless patient and tended, unless prompted, to focus on the emergency room situation rather than on patients with longer term causes of breathlessness. Whilst their theoretical knowledge embraced the possibility of a non-respiratory cause for breathlessness, neither undergraduates nor junior doctors spontaneously mentioned the use of spirometry in the diagnosis of respiratory disease. When prompted they cited lack of familiarity with the use and location of equipment, and lack of encouragement to use it as being major barriers to utilization. In contrast, GPs and specialist respiratory trainees were enthusiastic about its use and perceived spirometry as a core element of the diagnostic workup. CONCLUSIONS: More explicit training is needed regarding the role of spirometry in the diagnosis and management of those with lung disease and this necessitates both practical experience and training in interpretation of the data. However, formal teaching is likely to be undermined in practice, if the concept is not strongly promoted by the senior staff who act as role models and trainers.

Uniform definition of asthma severity, control, and exacerbations: document presented for the World Health Organization Consultation on Severe Asthma.

Asthma is a global health problem affecting around 300 million individuals of all ages, ethnic groups and countries. It is estimated that around 250,000 people die prematurely each year as a result of asthma. Concepts of asthma severity and control are important in evaluating patients and their response to treatment, as well as for public health, registries, and research (clinical trials, epidemiologic, genetic, and mechanistic studies), but the terminology applied is not standardized, and terms are often used interchangeably. A common international approach is favored to define severe asthma, uncontrolled asthma, and when the 2 coincide, although adaptation may be required in accordance with local conditions. A World Health Organization meeting was convened April 5-6, 2009, to propose a uniform definition of severe asthma. An article was written by a group of experts and reviewed by the Global Alliance against Chronic Respiratory Diseases review group. Severe asthma is defined by the level of current clinical control and risks as "Uncontrolled asthma which can result in risk of frequent severe exacerbations (or death) and/or adverse reactions to medications and/or chronic morbidity (including impaired lung function or reduced lung growth in children)." Severe asthma includes 3 groups, each carrying different public health messages and challenges: (1) untreated severe asthma, (2) difficult-to-treat severe asthma, and (3) treatment-resistant severe asthma. The last group includes asthma for which control is not achieved despite the highest level of recommended treatment and asthma for which control can be maintained only with the highest level of recommended treatment.

Understanding patients with asthma and COPD: insights from a European study.

AIMS: To understand the needs of people with asthma and COPD, and to identify opportunities for improved care. METHODS: Quantitative questionnaire-based survey performed in five European countries on patients with asthma and COPD. Questionnaires were administered to patients using Computer Assisted Web Interview methodology. RESULTS: 1022 patients with asthma (UK [n=190]; Germany [n=214]; France [n=200]; Italy [n=222]; Spain [n=196]) and 719 patients with COPD (UK [n=153]; Germany [n=147]; France [n=145]; Italy [n=140]; Spain [n=134]) were enrolled in the study. 32% of those with asthma and 67% of those with COPD considered that their condition had a significant effect on their quality of life, and stigma and emotional distress was common. Many expressed concern regarding potential medication side effects or that medicines might lose their effect with time. Major discrepancies between expectations and patient satisfaction with the doctor-patient relationship were observed, including a need to be consulted in the choice of inhalers. Consultations were infrequent, and 75% of respondents sought additional information beyond that received during consultations - commonly from the internet. CONCLUSIONS: Patient satisfaction was high but information needs were not addressed and the emotional burden of disease is underappreciated.

Use of the pictorial Sleepiness and Sleep Apnoea Scale in Chinese patients with suspected obstructive sleep apnoea syndrome.

BACKGROUND: Sleep related breathing disorders represent a significant health burden. Being able to stratify patients according to their need for differing types of investigation and predicting the likelihood of obstructive sleep apnoea syndrome (OSAS) is helpful. This study attempts to assess the value of a pictorial Sleepiness and Sleep Apnoea Scale (pSSAS) in this process. METHODS: A total of 126 sequential patients attending a sleep service with suspected OSAS completed the pSSAS, the Epworth Sleepiness Score (ESS), and the Berlin Questionnaire (BQ) prior to full polysomnography. RESULTS: With Apnoea-hypopnea index (AHI) >15 as the positive diagnostic criterion, the area under the receiver operating characteristic curve (AUC) of the BQ was the highest (0.683), followed by pSSAS and ESS (AUC 0.648 and 0.516, respectively). With AHI >30 as the positive diagnostic criterion, the AUC of pSSAS was the highest (0.696), followed by BQ and ESS (AUC 0.653 and 0.510, respectively). With MiniSO2 <80% as the positive diagnostic criterion, the AUC of pSSAS was the highest (0.736), followed by BQ and ESS (AUC 0.634 and 0.516, respectively). CONCLUSIONS: This study shows that the pSSAS which was first tested in a European population performs equally well amongst a Chinese population. The pSSAS performed in a similar fashion to the BQ in predicting those likely to have OSAS and was superior at predicting those who have severe OSAS. Because it is a pictorial questionnaire, it has advantages for those who may have reduced health literacy, a problem which is under-recognized in most healthcare systems.

How is the education component of pulmonary rehabilitation delivered in practice--Is it patient-centred?

OBJECTIVES: Pulmonary rehabilitation (PR) involves a significant component of education, but little has been published on what educational content is covered or how it is delivered. This survey study set out to investigate how PR education is delivered in practice. METHODS: A survey was designed to investigate the current educational delivery and which topics respondents reported should be included in a PR programme. The survey was sent to 11 Scottish PR Action group regional leads. RESULTS: Nine completed the questionnaire (81.8%). Education was reported to be predominately group-based and face-to-face (n = 9, 100%) consisting of between 6 and 12 sessions. Most educational topics lasted 15 min or less, some topic areas were not consistently covered. The educational content was variable and not personalised to individual needs. Three health areas undertook informal literacy assessment at baseline assessment and when tailoring COPD plans. Often attendance at educational sessions was not needed to 'complete' PR. CONCLUSIONS: Content and delivery of educational topics were varied, and no consistent outcome measure to assess the effectiveness of education was used. PRACTICE IMPLICATIONS: Education needs to be delivered in a patient-centred way tailoring for literacy skills using a range of different teaching approaches and aids.

An official American Thoracic Society/European Respiratory Society statement: asthma control and exacerbations: standardizing endpoints for clinical asthma trials and clinical practice.

BACKGROUND: The assessment of asthma control is pivotal to the evaluation of treatment response in individuals and in clinical trials. Previously, asthma control, severity, and exacerbations were defined and assessed in many different ways. PURPOSE: The Task Force was established to provide recommendations about standardization of outcomes relating to asthma control, severity, and exacerbations in clinical trials and clinical practice, for adults and children aged 6 years or older. METHODS: A narrative literature review was conducted to evaluate the measurement properties and strengths/weaknesses of outcome measures relevant to asthma control and exacerbations. The review focused on diary variables, physiologic measurements, composite scores, biomarkers, quality of life questionnaires, and indirect measures. RESULTS: The Task Force developed new definitions for asthma control, severity, and exacerbations, based on current treatment principles and clinical and research relevance. In view of current knowledge about the multiple domains of asthma and asthma control, no single outcome measure can adequately assess asthma control. Its assessment in clinical trials and in clinical practice should include components relevant to both of the goals of asthma treatment, namely achievement of best possible clinical control and reduction of future risk of adverse outcomes. Recommendations are provided for the assessment of asthma control in clinical trials and clinical practice, both at baseline and in the assessment of treatment response. CONCLUSIONS: The Task Force recommendations provide a basis for a multicomponent assessment of asthma by clinicians, researchers, and other relevant groups in the design, conduct, and evaluation of clinical trials, and in clinical practice.

Smoothing the passage of patients from primary care to specialist respiratory opinion.

AIMS: To assess whether information in general practitioner (GP) referral letters provides a basis for selection of diagnostic tests in patients referred for specialist respiratory advice. METHODS: We undertook a prospective study within a respiratory outpatients department to compare the diagnostic tests planned at three stages of the referral/specialist consultation process: i) using the GP referral letter alone; ii) using the referral letter and patient history; iii) using the referral letter, patient history, and clinical examination. RESULTS: Analysis of the content of GP referral letters revealed wide variations in referral information. A high proportion of tests selected using the referral letter alone were altered after specialist history-taking and examination. Far fewer changes were recorded between history-taking and examination. CONCLUSIONS: Neither literature review nor our study support a system which bases diagnostic test selection on GP referral letters alone. However, our findings suggest that approaches which include specialist history-taking in advance of face-to-face consultation merit further investigation.

Facilitating the recruitment of minority ethnic people into research: qualitative case study of South Asians and asthma.

BACKGROUND: There is international interest in enhancing recruitment of minority ethnic people into research, particularly in disease areas with substantial ethnic inequalities. A recent systematic review and meta-analysis found that UK South Asians are at three times increased risk of hospitalisation for asthma when compared to white Europeans. US asthma trials are far more likely to report enrolling minority ethnic people into studies than those conducted in Europe. We investigated approaches to bolster recruitment of South Asians into UK asthma studies through qualitative research with US and UK researchers, and UK community leaders. METHODS AND FINDINGS: Interviews were conducted with 36 researchers (19 UK and 17 US) from diverse disciplinary backgrounds and ten community leaders from a range of ethnic, religious, and linguistic backgrounds, followed by self-completion questionnaires. Interviews were digitally recorded, translated where necessary, and transcribed. The Framework approach was used for analysis. Barriers to ethnic minority participation revolved around five key themes: (i) researchers' own attitudes, which ranged from empathy to antipathy to (in a minority of cases) misgivings about the scientific importance of the question under study; (ii) stereotypes and prejudices about the difficulties in engaging with minority ethnic populations; (iii) the logistical challenges posed by language, cultural differences, and research costs set against the need to demonstrate value for money; (iv) the unique contexts of the two countries; and (v) poorly developed understanding amongst some minority ethnic leaders of what research entails and aims to achieve. US researchers were considerably more positive than their UK counterparts about the importance and logistics of including ethnic minorities, which appeared to a large extent to reflect the longer-term impact of the National Institutes of Health's requirement to include minority ethnic people. CONCLUSIONS: Most researchers and community leaders view the broadening of participation in research as important and are reasonably optimistic about the feasibility of recruiting South Asians into asthma studies provided that the barriers can be overcome. Suggested strategies for improving recruitment in the UK included a considerably improved support structure to provide academics with essential contextual information (e.g., languages of particular importance and contact with local gatekeepers), and the need to ensure that care is taken to engage with the minority ethnic communities in ways that are both culturally appropriate and sustainable; ensuring reciprocal benefits was seen as one key way of avoiding gatekeeper fatigue. Although voluntary measures to encourage researchers may have some impact, greater impact might be achieved if UK funding bodies followed the lead of the US National Institutes of Health requiring recruitment of ethnic minorities. Such a move is, however, likely in the short- to medium-term, to prove unpopular with many UK academics because of the added "hassle" factor in engaging with more diverse populations than many have hitherto been accustomed to.

The development and comprehensibility of a pictorial asthma action plan.

OBJECTIVE: Written action plans are regarded as an important part of asthma self-management education and yet they may not be understood by those with limited literacy skills. This study was designed to produce an understandable pictorial asthma action plan. METHODS: With advice from a group of doctors and nurses a "standard" written action plan was translated by a medical artist into a series of pictorial images. These were assessed using the techniques of guessability and translucency by a series of adults attending a specialist asthma clinic in London and the same process was subsequently used to assess comprehensibility of the images and plans amongst a group of Somalis living in Manchester, UK and Malaysians in Seremban, Malaysia. RESULTS: Guessability testing showed that the majority of pictograms were well understood by each of the study groups. Translucency testing revealed close agreement with intended meaning for the majority of the images. One image, depicting extra use of reliever medication scored less well in all populations; two other images scored less well in the Somali and Malaysian groups and reflect less use of certain inhaler devices in other countries. The overall plan was well understood by all patients who were able to adequately recount the appropriate actions to take in different clinical scenarios. CONCLUSION: We have developed a pictorial asthma action plan understandable by 3 different populations of patients with asthma. PRACTICE IMPLICATIONS: Pictorial representations have been shown by other studies in other situations to be an effective method of reinforcing the spoken word. The pictorial asthma action plan developed for this study has been shown to be comprehensible, personalised to the individual in the usual fashion. It is now suitable for further evaluation in clinical practice.

Technology and its role in respiratory care.

INTRODUCTION: Telemonitoring, telemedicine, clinical and medical informatics or telecare, are terms used to describe the use of technology along with local clinical protocols to monitor remotely a patient's medical condition in their own home. In respiratory medicine, where large numbers of people have long term conditions such as asthma and chronic obstructive pulmonary disease (COPD), the role of such monitoring technology in the management of patients is of great interest. AIM: This review seeks to explore what evidence exists to support the deployment of technology to improve the care of people with respiratory conditions. METHOD: Narrative review. RESULT: A wide variety of technologies have been involved in asthma and COPD care, from management systems to self monitoring devices. Many studies report that staff and patients 'liked' the technology. The service, care and financial benefits to both patients and the health care system were less obvious. Many studies suffered from poor methodology and lacked clear endpoints. CONCLUSION: There is an enormous potential for telemonitoring to assist in the provision of better care for those with long term lung diseases. However, evidence of benefit is unclear and there remains a need for robust studies and answers to clear research questions for specific patient populations before such technologies can be recommended for widespread implementation.