H Pinnock

The PROactive innovative conceptual framework on physical activity.

Although physical activity is considered an important therapeutic target in chronic obstructive pulmonary disease (COPD), what “physical activity” means to COPD patients and how their perspective is best measured is poorly understood. We designed a conceptual framework, guiding the development and content validation of two patient reported outcome (PRO) instruments on physical activity (PROactive PRO instruments). 116 patients from four European countries with diverse demographics and COPD phenotypes participated in three consecutive qualitative studies (63% male, age mean±sd 66±9 years, 35% Global Initiative for Chronic Obstructive Lung Disease stage III–IV). 23 interviews and eight focus groups (n = 54) identified the main themes and candidate items of the framework. 39 cognitive debriefings allowed the clarity of the items and instructions to be optimised. Three themes emerged, i.e. impact of COPD on amount of physical activity, symptoms experienced during physical activity, and adaptations made to facilitate physical activity. The themes were similar irrespective of country, demographic or disease characteristics. Iterative rounds of appraisal and refinement of candidate items resulted in 30 items with a daily recall period and 34 items with a 7-day recall period. For the first time, our approach provides comprehensive insight on physical activity from the COPD patients’ perspective. The PROactive PRO instruments’ content validity represents the pivotal basis for empirically based item reduction and validation. Conceptual framework as basis of PROactive PRO instruments to assess physical activity from COPD patient perspective http://ow.ly/ytJoS

Meeting the information needs of patients with allergic disorders: partnership is the key

The Department of Health’s recently launched Expert Patient Initiative seeks, through empowering patients to be partners with health-care professionals in decisions made about their health care, to achieve sustainable improvements in quality of life for people with chronic disorders [1]. Access to appropriate, accurate, unbiased and comprehensible information is a cornerstone of this policy and, moreover, a fundamental right for all patients, not only to enhance understanding, but also to inform choice of treatment and facilitate selfmanagement. This may be particularly important in the context of allergic conditions given the burden of disease [2], acknowledged deficiencies in primary-care management [3], and very limited availability of specialist services in the UK [4]. The observational study by White et al. [5] in this month’s journal suggests that the currently available patient information leaflets for hayfever may not be helping to achieve these objectives [5].

DANCING TO A DIFFERENT TUNE: LIVING AND DYING WITH CANCER, ORGAN FAILURE AND PHYSICAL FRAILTY

Introduction The “danse macabre” has been depicted in Europe since medieval times. Providing good end-of-life care for all patients, whatever form their last dance takes, is a global challenge. Aim(s) and method(s) To explore typical narratives of living with and dying from advanced illnesses, to provide insights into providing effective care. Secondary analysis of data from 8 qualitative longitudinal studies: 3 cancer; 3 organ failure; 1 frailty; 1 with South Asian participants from all 3 trajectories. Patients were interviewed up to 4 times over 18 months. Researchers from each study reviewed the data using a narrative analytic framework. The narratives were initially synthesised by illness trajectory, then compared and discussed at analysis workshops. Results The dataset was 828 in-depth interviews with 156 patients. Cancer narratives had a well-rehearsed beginning, middle and anticipated end, with dual themes of hope for recovery alongside fear of dying. People with organ failure struggled to tell their story, being unclear when the illness began, or how one event linked to another. Fewer spoke about death, hoping instead to avoid further deterioration. Frail older peoples narratives often began with a specific event in combination with ageing, yet lost salience amidst increasing losses and future fears. Death was only fully anticipated very near the end, and feared less than nursing homes or dementia. Conclusion(s) Patients from different illness groups gave very different accounts. Consequently the cancer-based model of end-of-life care seems poorly suited to the needs of those dying in other ways. Understanding how different patient groups perceive their deteriorating health and approaching death will inform appropriate future palliative care for all.

DIFFERENT DYINGS: LIVING AND DYING WITH CANCER, ORGAN FAILURE AND PHYSICAL FRAILTY

Background Recent controversy around the Liverpool Care Pathway has highlighted the need to listen to patient and carer perspectives. Better understanding of how different patient groups perceive their deteriorating health and approaching death can inform palliative care developments for all conditions. Aim To establish whether there are typical narratives of living with and dying from a variety of progressive conditions, that might provide insights into how best to provide effective, patient-centred care. Methods We used a narrative framework to synthesise eight methodologically comparable, longitudinal, interview studies undertaken by our research group. We examined the narratives of people dying from cancer (lung, glioma and colorectal cancer), organ failure (heart, liver and chronic obstructive pulmonary disease) and physical frailty, in socioeconomically and racially diverse populations in Scotland. Results The dataset comprised 828 in-depth interviews with 156 patients, 114 family caregivers and 170 health professionals. The cancer narratives typically had a clear beginning, middle and anticipated end. They gave a well-rehearsed account of the illness, with the dual themes of hope for recovery alongside fear of dying. In contrast, people with organ failure struggled to pinpoint when their illness began, or see meaningful patterns between acute events. Fewer spoke about death, hoping instead to avoid further deterioration. Some attributed their poor health to ‘old age’, others struggled to identify any specific illness. Frail older people were frustrated by their progressive loss of independence, fearing dementia or nursing home admission more than dying. Conclusions The typical cancer narrative is very different from those in frailty or organ failure. Palliative care as a concept may be too inextricably linked to imminent death to be acceptable and appropriate for these patients. We must diversify palliative care provision to meet the range of holistic needs of all patients approaching the end of life.

Primary care research and clinical practice: respiratory disease

Primary care respiratory research has contributed to the evidence base for both the clinical care of common long-term respiratory conditions and the management of acute respiratory illness. Key areas include investigating the role of remote consultations in ensuring regular professional reviews for people with asthma, understanding and evaluating the use of technology to support patient self-care, exploring aspects of the shift of services for long-term conditions from secondary to primary care, investigating primary care prescribing using computerised databases of anonymised medical records, and tackling inequalities in provision of care for ethnic minorities. Further research will be needed in all these areas as the ongoing and increasing challenge of providing support for people with long-term conditions will demand innovative approaches to organisation of care, many of which will involve or be led by primary care.

P207 Can Holistic Interventions Improve the Care of People with Severe Chronic Obstructive Pulmonary Disease (COPD)? A Systematic Review

Introduction and Objectives People with severe COPD have a long-recognised burden of disabling physical symptoms compounded by co-morbidity, psychological distress and social isolation. We aimed to review the effectiveness of interventions designed to deliver holistic care compared to usual care for people with severe COPD. Methods We searched 11 international electronic databases, three trial repositories and contacted a panel of international experts to locate published, unpublished and in-progress randomised controlled trials (RCTs), quasi-RCTs and controlled clinical trials (CCTs) that investigated holistic interventions designed to support patients with severe COPD in any healthcare context. Date range January 1990–March 2012; no language or geographical restrictions. Quality assessment and data extraction followed the Cochrane Collaboration method. Health-related quality of life (HRQoL) was the primary outcome. We used a piloted data extraction sheet and undertook narrative synthesis. Results From 2,866 potentially relevant papers, three trials met our inclusion criteria: two RCTs (from United States and Australia), and one CCT (from Thailand) studying a total of 216 patients. Critical appraisal identified a moderate (one RCT and the CCT) or high (one RCT) risk of bias. All interventions were led by nurses acting in a co-ordinating role (e.g. facilitating community support in Thailand, providing case-management in the US, or co-ordinating inpatient care in Australia). The community-based intervention in Thailand significantly improved HRQoL at three months compared to (limited) usual care (St George’s Respiratory Questionnaire: intervention: 30.3±19.4 vs control 52.4±21.3 p<0.001). Significant effects in the US trial were confined to ‘Physical functioning’ and ‘General health’ sub-domains of Medical Outcomes Study Short-Form-36 at three but not six-months. There were no significant changes in the Australian trial. Conclusions Some 15 years after reports first highlighted the substantial unmet needs of people with severe COPD, we have been unable to find robust trial evidence about interventions to address those needs. There is an urgent need to develop and evaluate interventions to deliver or enhance holistic care and improve the quality of life of people with severe COPD. Funding Dunhill Medical Trust. HP is supported by a PCRCA Fellowship (CSO, Scottish Government).

European Respiratory Society International Congress 2017: highlights from the Clinical Assembly

This article contains highlights and a selection of the scientific advances from the European Respiratory Societys Clinical Assembly (Assembly 1 and its six respective groups) that were presented at the 2017 European Respiratory Society International Congress in Milan, Italy. The most relevant topics from each of the groups will be discussed, covering a wide range of areas including clinical problems, rehabilitation and chronic care, thoracic imaging, interventional pulmonology, diffuse and parenchymal lung diseases, and general practice and primary care. In this comprehensive review, the newest research and actual data as well as award-winning abstracts and highlight sessions will be discussed. A highlights review of selected presentations from #ERSCongress 2017 by the @ERStalk Clinical Assembly http://ow.ly/p3fB30gSb24

S62 Identifying the child (5–12 years) with asthma at increased risk of attacks: the at-risk child with asthma (arc) systematic review

Introduction and Objectives Asthma is the commonest long-term condition in children with attacks impacting on both school attendance and quality of life. Identifying the child at increased risk of future asthma attacks could inform clinical management and targeting of care. We aimed to systematically review the literature to identify and weight factors associated with increased risk of attacks in children with asthma aged 5–12 years. Methods Using Cochrane methodology, we systematically searched six databases and undertook forward and backward citation searches, with no date/language restrictions. Two reviewers independently selected studies for inclusion, assessed methodological quality, and extracted data. An expert panel of four clinicians independently assessed each factor for both magnitude of risk and degree of confidence in that assessment, based on study quality, effect sizes, biological plausibility, and consistency of Results Consensus was achieved by discussion and agreed at a multidisciplinary workshop. Results From 16 109 records, we included 69 papers (29 cohort, 4 case-control, 36 cross-sectional studies) providing data on 32 potential factors associated with an increased risk of asthma attacks. The panel had high confidence that previous asthma attacks were associated with greatly increased risk of future attacks. Poor access to care and persistent symptoms were associated with moderately/greatly increased risk. A moderately increased risk of attack was associated with sub-optimal drug regimen (low controller/total therapy ratio), comorbid atopic/allergic disease, African-American ethnicity (US studies), poverty, and vitamin D deficiency. Environmental tobacco smoke (ETS) exposure, younger age, and obesity were associated with slightly increased risk. Gender, urban residence, and Hispanic ethnicity (US studies) were not associated with risk. The evidence for other factors was inconclusive. Conclusions Assessment of clinical and demographic features (especially persistent symptoms, previous attacks, and sub-optimal drug regimen) may help clinicians to ‘spot the child’ at increased risk of asthma attacks and focus appropriate management. Population level factors (poverty, poor access to care) may be used by health service planners and policymakers to target healthcare initiatives.

Clinical highlights from the 2016 European Respiratory Society International Congress

This article contains highlights and a selection of the scientific advances from the European Respiratory Society (ERS) Clinical Assembly (Assembly 1) and its six respective groups (Groups 1.1–1.6) that were presented at the 2016 ERS International Congress in London, UK. The most relevant topics for clinicians will be discussed, covering a wide range of areas including clinical problems, rehabilitation and chronic care, thoracic imaging, interventional pulmonology, diffuse and parenchymal lung diseases, and general practice and primary care. In this comprehensive review, the newest research and actual data will be discussed and put into perspective. Members of the @ERStalk Clinical Assembly give their highlights from #ERSLDN16 http://ow.ly/MkKb30a58J7