A systematic review of the content and delivery of education in pulmonary rehabilitation programmes.

INTRODUCTION: Pulmonary rehabilitation (PR) is a core component of Chronic Obstructive Pulmonary Disease (COPD) management with well recognized benefits. While suggestions for educational content within pulmonary rehabilitation have been detailed in clinical guidance, it is unclear what educational content is delivered as part of pulmonary rehabilitation, who delivers it, and how it is delivered. METHODS: A systematic review was conducted to identify what educational content is delivered as part of pulmonary rehabilitation, how is this delivered and who delivers it. Databases were searched from 1981 to 2017 using multiple search terms related to "pulmonary rehabilitation" and "education". RESULTS: Fourteen studies were identified. This included 6 survey studies, 5 quasi-experimental studies and 3 RCTs. Five key topics that were consistently included within PR programmes were identified as: 1) Anxiety/depression and stress management. 2) Early recognition of signs of infection. 3) Dyspnea and symptom management. 4) Nutrition. 5) Techniques using inhalers and nebulizers. Broader topics such as welfare/benefits, sexuality, and advance care directives did not frequently feature. Only four studies used tools to measure knowledge or learning pre and post rehabilitation in an attempt to evaluate the effectiveness of the education delivered as part of PR. CONCLUSIONS: The delivery of education in PR programmes is variable and does not follow suggested educational topics. Education needs to take a patient centered motivational approach to ensure effective delivery. Further research into appropriate educational outcome measures are needed, in order to evaluate the changes in behaviour associated with education.

The diagnosis of COPD in primary care; gender differences and the role of spirometry.

BACKGROUND: Females with exacerbations of Chronic Obstructive Pulmonary Disease now account for one half of all hospital admissions for that condition and rates have been increasing over the last few decades. Differences in presentations of disease between genders have been shown in several conditions and this study explores whether there are inter gender biases in probable diagnoses in those suspected to have COPD. METHODS: 445 individuals with a provisional diagnosis by their General Practitioner of "suspected COPD" or "definite COPD" were referred to a community Respiratory Assessment unit (CRAU) for tests including spirometry. Gender, demographics, respiratory symptoms and respiratory medical history were recorded. The provisional diagnoses were compared with the final diagnosis made after spirometry and respiratory specialist nurse review and the provisional diagnosis was either confirmed as correct or refuted as unlikely. RESULTS: Significantly more men (87.5%) had their diagnosis of "definite COPD" confirmed compared to 73.9% of women (p = 0.021). When the GP suggested a provisional diagnosis of "suspected COPD" (n = 265) at referral, this was confirmed in 60.9% of men and only 43.2% of women (p = 0.004). There was a different symptom pattern between genders with women being more likely to report allergies, symptoms starting earlier in life, and being less likely than men to report breathlessness as the main symptom. CONCLUSIONS: These results may suggest a difference between genders in some of the clinical features of COPD and a difference in likelihood of a GPs provisional diagnosis of COPD being correct. The study reiterates the absolute importance of spirometry in the diagnosis of COPD.

Self-management support and other alternatives to reduce the burden of asthma and chronic obstructive pulmonary disease.

While pharmacotherapy is important in the management of asthma and chronic obstructive pulmonary disease, it is also important to consider additional interventions that can further reduce the burden of ill health for patients, their families and the health care system. In this review, the evidence in favour of self-management support that leads to successful self-care by the patient is reviewed, and the key components of successful strategies are outlined; areas where more research is needed are identified. In addition to self-management support, other methods of delivering care, such as telemonitoring, admission avoidance, assisted discharge schemes and use of lay educators, are reviewed.

Preclinic telephone consultations: an observational cohort study.

Patients referred to secondary care for specialist respiratory review frequently undergo multiple hospital attendances for investigations and consultations. This study evaluated the potential of a preclinic telephone consultation and subsequent coordination of tests and face-to-face consultations to reduce hospital visits. Total hospital attendances were recorded for three cohorts (participants, non-participants and comparators) for 6 months from first specialist contact. Patients completed the medical interview satisfaction scale-21 (MISS-21). The study showed that a preclinic telephone consultation can significantly reduce hospital visits over a fixed period without reducing patient satisfaction. In total, 20.8% of the participant group had three or more hospital attendances compared with 42.9% of the non-participant group (p = 0.001) and 44.7% of the comparator group (p = 0.002). Participants had fewer follow up visits and lower rates of non-attendance/late rearrangement of appointments. This service reduces unnecessary hospital visits, seems to improve patient compliance and may save costs associated with non-attendance and follow up consultations.

Barriers to the implementation of self management support in long term lung conditions.

Background Self-management improves outcomes in asthma and COPD and is strongly recommended in national and international guidelines; however implementation of the guidelines such as use of written action plans in practice is often poor. Setting A questionnaire survey was undertaken to identify the healthcare professional barriers to implementation of self-management for asthma and COPD in West London. Question Why is self-management education not being undertaken in respiratory conditions? Methods A questionnaire was designed to elicit healthcare professionals' views about barriers to implementation of self-management in asthma and COPD. Results Response rates were 33% (58/175). Results showed strong support for guideline recommendations, however implementation was patchy. Seventy six percent of respondents discussed asthma self-management with patients; however only 47.8% of patients received a written action plan. For COPD patients, 55.1% discussed self-management, with 41% receiving a written action plan. In COPD, there was greater GP involvement and less delegation of self-management. Barriers to implementation included patient factors (compliance, literacy and patient understanding), time constraints and insufficient resources. Those who believed they had witnessed improved health outcomes with self-management (53%, 31/58) were more likely to give written action plans (78%, 24/31, 'nearly always/sometimes' gave written action plans), Nearly a third of healthcare professionals reported lacking confidence in constructing written action plans (33% 19/58; GPs 43%, nurses 43%). Conclusion Despite overwhelming evidence self-management support is still not being implemented into routine clinical practice, identified barriers included time constraints, lack of training, lack of belief in patients ability to self-manage and lack of confidence completing self-management plans. Practice implications These issues need to be addressed if self-management support is to be delivered in a meaningful and effective way.

Evaluation of a paper and electronic pictorial COPD action plan.

Personalised written action plans are increasingly regarded as an important component of chronic obstructive pulmonary disease (COPD) self-management support and yet they may not be understood by those with limited literacy skills. This study was designed to produce a comprehensible pictorial COPD action plan for use by patients and health care professionals. With advice from a group of doctors and nurses a 'standard' written COPD action plan was translated by a medical artist into a series of pictorial images. These were assessed using the techniques of guessability and translucency in 21 adults attending a COPD clinic in a London hospital. Guessability and translucency scores show that pictograms were reasonably well understood, with only 3 pictograms showing low score in both guessability and translucency questionnaires. These included images depicting increased sputum production, swollen ankles, and use of extra doses of reliever medication. However, after brief spoken reinforcement about self-management, most patients could use the pictorial plan to suggest appropriate self-management behaviour such as when to access medical care. We have developed a pictorial COPD action plan. Pictorial methods represent an effective method of reinforcing the spoken word for all ranges of literacy.

Symptom variability in patients with severe COPD: a pan-European cross-sectional study.

In between exacerbations, chronic obstructive pulmonary disease (COPD) is usually regarded as a stable condition, but there is increasing recognition of variability in this state. This cross-sectional study assessed patients' perception of symptom variability. Participants were outpatients > 45 yrs old with COPD, current or ex-smokers, forced expiratory volume in 1 s (FEV1) <50% predicted, FEV1/forced vital capacity < 0.7 and no exacerbation leading to therapeutic intervention in the previous 3 months. Patients' perceptions of COPD symptoms and their impact on daily life activities were recorded. Alterations in therapy use in response to COPD worsening were also recorded. COPD symptoms were experienced by 2,258 (92.5%) out of 2,441 patients during the 7 days before interview. Breathlessness was the most common symptom (72.5%). Daily and/or weekly symptom variability was reported by 62.7% of symptomatic patients; the morning was the worst time of day. Factors associated with perception of variability of breathlessness included younger age, symptom severity and recruitment to the study by general practitioners. The perception of variability was significantly different between European countries or regions. Patient-perceived COPD symptoms vary over the day and the week, and impact on daily activities; morning being the worst time of day. The majority of patients appear not to adjust treatment when symptoms worsen.

Are evaluated respiratory service developments implemented into clinical practice?

INTRODUCTION: Evaluation of the way in which respiratory care is delivered is increasingly recognised to be an important area for research. When service developments are reported, it is not always clear whether they are subsequently implemented within the reporting institution, and if not why not. METHODS: 3281 abstracts from three specialist journals and one general journal were reviewed, and 36 reported evaluated service developments identified. The authors of each of these were approached to determine whether the reported service developments were in use in their institution. RESULTS: 30 of the 36 authors responded (83%). 10 reports were of sharing care with nurses and five with other health professionals, and the remainder involved new technologies, education, patient information or guideline implementation. 15/30 had implemented the reported development into practice, 11 of which were implemented immediately. Delays were due to staffing, funding and organisational issues. 10/15 studies were not put into practice, the main reason being that the key person had left. Four respondents embarked upon further study to confirm their preliminary published findings. CONCLUSIONS: Reports of apparently positive service developments are only implemented in approximately one-half of institutions reporting the development. In a third of cases, non-implementation reflects the original authors believing that further study is necessary to confirm effectiveness.

Development and validation of the Capacity of Daily Living during the Morning questionnaire and the Global Chest Symptoms Questionnaire in COPD.

This report concerns the development and validation of two patient-reported outcomes questionnaires developed to assess chronic obstructive pulmonary disease (COPD) patients' ability to perform morning activities and to evaluate their morning symptoms. Based on interviews with COPD patients, the Capacity of Daily Living during the Morning (CDLM) questionnaire and the Global Chest Symptoms Questionnaire (GCSQ) were developed, linguistically validated and incorporated into two multicentre, randomised trials involving a total of 1,100 COPD patients; those trials were registered at ClinicalTrials.gov (NCT00496470 and NCT00542880). Data from these trials were used to determine the reliability, validity and responsiveness of the questionnaires and to derive estimates of minimal important differences (MIDs). Both questionnaires displayed good-to-high reliability (Cronbach's alpha 0.75-0.93). Analysis of convergent validity showed that CDLM and GCSQ scores correlated significantly (p<0.001) with symptoms, health-related quality of life (HRQoL) and use of rescue medication. In both trials, CDLM and GCSQ scores discriminated between patients with different levels of HRQoL, as assessed by the St George's Respiratory Questionnaire for COPD patients (SGRQ-C), but not with disease severity, as assessed by the Global Initiative for Chronic Obstructive Lung Disease (GOLD) criteria. A significant improvement in CDLM and GCSQ scores occurred in response to treatment. Estimations of MID scores, corresponding to an SGRQ-C MID of 4, were 0.20 for the CDLM questionnaire and 0.15 for the GCSQ. Both the CDLM questionnaire and the GCSQ are easy-to-use, reliable, responsive, self-administered questionnaires that report on patients' symptoms and ability to perform morning activities.

Delivery of asthma and allergy care in Europe.

BACKGROUND: There is no comprehensive information available concerning the way in which care is provided for those with allergic conditions in Europe. OBJECTIVE: To determine who cares for those with asthma, allergic dermatitis, and rhinitis in Europe and to determine the involvement of primary care and other healthcare professionals and the use of patient education and guidelines. METHODS: A questionnaire survey of colleagues in 43 institutions in 33 European countries with results being related to published sources of information regarding prevalence of allergic diseases in different countries and published data regarding availability of doctors and expenditure on healthcare. RESULTS: A total of 33 of 43 institutions completed the survey (76.7%) with information being obtained from 26 of the 33 countries surveyed (78.7%). There are wide differences in the use of different healthcare professionals in different countries, with those for asthma, for example, being most likely to be cared for by an allergologist in some countries and by a primary care physician in many others. There was much greater awareness of guidelines for asthma and little reported usage of guidelines in the management of those with allergic skin diseases, and while self-management education was offered most to those with asthma, there was a wide variation in the usage of group education. CONCLUSIONS: Many of the differences revealed by this survey cannot be explained by the availability of different healthcare professionals nor by differences in healthcare expenditure, and such differences need further evaluation to determine their effect on outcomes and the economics of healthcare so that we may determine that which is optimal.

Palliative care services for those with chronic lung disease.

Excellent palliative care is available for patients with advanced lung cancer. Whether the same services are available for those with nonmalignant respiratory disease is less clear. A questionnaire was sent to 210 named respiratory physicians, each representing a major hospital in England, Wales, and Northern Ireland. A total of 107 replies were received; the response rate was 51.0%. Respondents cared for patients with chronic obstructive pulmonary disease, asbestosis, and diffuse parenchymal lung disease but only a third had responsibility for cystic fibrosis. Physicians were supported by a mean of 3.4 respiratory nurse specialists per department and 73.8% had a specialist lung cancer nurse. In only 16 cases (20.3%) did that nurse extend care to those with nonmalignant disease. Only a minority reported easy access to hospice in-patient care or day care. About 21.5% of the respondents had formal policies in place for care of patients with chronic respiratory disease nearing the end of life, but 87.9% of respondents had no formal process for initiating end of life discussions with those with terminal respiratory illness. Patients with advanced nonmalignant respiratory disease have less universal access to specialist palliative care services than do those with malignant lung disease, and in the majority of hospitals there is no formalized approach to end of life care issues with patients with chronic lung disease.

A new perspective on concepts of asthma severity and control.

Concepts of asthma severity and control are important in the evaluation of patients and their response to treatment but the terminology is not standardised and the terms are often used interchangeably. This review, arising from the work of an American Thoracic Society/European Respiratory Society Task Force, identifies the need for separate concepts of control and severity, describes their evolution in asthma guidelines and provides a framework for understanding the relationship between current concepts of asthma phenotype, severity and control. "Asthma control" refers to the extent to which the manifestations of asthma have been reduced or removed by treatment. Its assessment should incorporate the dual components of current clinical control (e.g. symptoms, reliever use and lung function) and future risk (e.g. exacerbations and lung function decline). The most clinically useful concept of asthma severity is based on the intensity of treatment required to achieve good asthma control, i.e. severity is assessed during treatment. Severe asthma is defined as the requirement for (not necessarily just prescription or use of) high-intensity treatment. Asthma severity may be influenced by the underlying disease activity and by the patient's phenotype, both of which may be further described using pathological and physiological markers. These markers can also act as surrogate measures for future risk.

Can lay people deliver asthma self-management education as effectively as primary care based practice nurses?

OBJECTIVES: To determine whether well trained lay people could deliver asthma self-management education with comparable outcomes to that achieved by primary care based practice nurses. DESIGN: Randomised equivalence trial. SETTING: 39 general practices in West London and North West England. PARTICIPANTS: 567 patients with asthma who were on regular maintenance therapy. 15 lay educators were recruited and trained to deliver asthma self-management education. INTERVENTION: An initial consultation of up to 45 min offered either by a lay educator or a practice based primary care nurse, followed by a second shorter face to face consultation and telephone follow-up for 1 year. MAIN OUTCOME MEASURES: Unscheduled need for healthcare. SECONDARY OUTCOME MEASURES: Patient satisfaction and need for courses of oral steroids. RESULTS: 567 patients were randomised to care by a nurse (n = 287) or a lay educator (n = 280) and 146 and 171, respectively, attended the first face to face educational session. During the first two consultations, management changes were made in 35/146 patients seen by a practice nurse (24.0%) and in 56/171 patients (32.7%) seen by a lay educator. For 418/567 patients (73.7%), we have 1 year data on use of unscheduled healthcare. Under an intention to treat approach, 61/205 patients (29.8%) in the nurse led group required unscheduled care compared with 65/213 (30.5%) in the lay led group (90% CI for difference -8.1% to 6.6%; 95% CI for difference -9.5% to 8.0%). The 90% CI contained the predetermined equivalence region (-5% to +5%) giving an inconclusive result regarding the equivalence of the two approaches. Despite the fact that all patients had been prescribed regular maintenance therapy, 122/418 patients (29.2%) required courses of steroid tablets during the course of 1 year. Patient satisfaction following the initial face to face consultation was similar in both groups. CONCLUSIONS: It is possible to recruit and train lay educators to deliver a discrete area of respiratory care, with comparable outcomes to those seen by nurses.

A nurse led intermediate care package in patients who have been hospitalised with an acute exacerbation of chronic obstructive pulmonary disease.

OBJECTIVES: To determine the effects of a nurse led intermediate care programme in patients who have been hospitalised with an acute exacerbation of chronic obstructive pulmonary disease (AECOPD). DESIGN: Randomised controlled trial. SETTING: Community and hospital care in west London. PARTICIPANTS: 122 patients with COPD. INTERVENTION: A care package incorporating initial pulmonary rehabilitation and self-management education, provision of a written, personalised COPD action plan, monthly telephone calls and 3 monthly home visits by a specialist nurse for a period of 2 years. MAIN OUTCOME MEASURE: Hospital readmission rate. SECONDARY OUTCOMES: Unscheduled primary care consultations and quality of life. RESULTS: There were no differences in hospital admission rates or in exacerbation rates between the two groups. Self-management of exacerbations was significantly different and the intervention group were more likely to be treated with oral steroids alone or oral steroids and antibiotics, and the initiators of treatment for exacerbations were statistically more likely to be the patients themselves. 12 patients in the control group died during the 2 year period, eight as a result of COPD, compared with six patients in the intervention group, of whom one died from COPD. This is a significant difference. When the numbers were adjusted to reflect the numbers still alive at 2 years, in the intervention group patients reported a total of 171 unscheduled contacts with their general practitioner (GP) and in the control group, 280 contacts. The number needed to treat was 0.558--ie, for every one COPD patient receiving the intervention and self-management advice, there were 1.79 fewer unscheduled contacts with the GP. CONCLUSIONS: An intermediate care package incorporating pulmonary rehabilitation, self-management education and the receipt of a written COPD action plan, together with regular nurse contact, is associated with a reduced need for unscheduled primary care consultations and a reduction in deaths due to COPD but did not affect the hospital readmission rate.

Is air travel safe for those with lung disease?

Airlines commonly report respiratory in-flight emergencies; flight outcomes have not been examined prospectively in large numbers of respiratory patients. The current authors conducted a prospective, observational study of flight outcomes in this group. UK respiratory specialists were invited to recruit patients planning air travel. Centres undertook their usual pre-flight assessment. Within 2 weeks of returning, patients completed a questionnaire documenting symptoms, in-flight oxygen use and unscheduled healthcare use. In total, 616 patients were recruited. Of these, 500 (81%) returned questionnaires. The most common diagnoses were airway (54%) and diffuse parenchymal lung disease (23%). In total, 12 patients died, seven before flying and five within 1 month. Pre-flight assessment included oximetry (96%), spirometry (95%), hypoxic challenge (45%) and walk test (10%). Of the patients, 11% did not fly. In those who flew, unscheduled respiratory healthcare use increased from 9% in the 4 weeks prior to travel to 19% in the 4 weeks after travel. However, when compared with self-reported data during the preceding year, medical consultations increased by just 2%. In patients flying after careful respiratory specialist assessment, commercial air travel appears generally safe.