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Patient perspectives on how to optimise benefits from a breathlessness service for people with COPD.

ABSTRACT: This study aimed to inform understanding of how to optimise patient-perceived benefits from a breathlessness service designed for patients with moderate to very severe chronic obstructive pulmonary disease (COPD). The Westmead Breathlessness Service (WBS) trains patients to self-manage over an 8-week programme, with multidisciplinary input and home visits. A qualitative approach was taken, using semi-structured telephone interviews. Each transcript was globally rated as suggesting 'significant', 'some' or 'no' impact from WBS, and thematic analysis used an integrative approach. Forty-one consecutive participants were interviewed to reach 'information power'. Eighteen (44%) participants reported 'significant' impact, 17 (41%) 'some' impact, and two (5%) 'no' impact. Improvements to breathlessness were usually in the affective and impact dimensions but, more uncommonly, also sensory-perceptual. Participants who benefited in self-esteem, confidence and motivation attributed this to one-to-one multidisciplinary coaching and home visits. Further research should test whether including/excluding more intensive programme elements based on individual need might improve cost-effectiveness.

SUBMITTER: Luckett T

PROVIDER: S-EPMC7142111 | biostudies-literature | 2020 Apr

REPOSITORIES: biostudies-literature

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Patient perspectives on how to optimise benefits from a breathlessness service for people with COPD.

Luckett Tim T Roberts Mary M MM Smith Tracy T Swami Vinita V Cho Jin-Gun JG Wheatley John R JR

NPJ primary care respiratory medicine 20200408 1

This study aimed to inform understanding of how to optimise patient-perceived benefits from a breathlessness service designed for patients with moderate to very severe chronic obstructive pulmonary disease (COPD). The Westmead Breathlessness Service (WBS) trains patients to self-manage over an 8-week programme, with multidisciplinary input and home visits. A qualitative approach was taken, using semi-structured telephone interviews. Each transcript was globally rated as suggesting 'significant', ...[more]

PMID: 32269222

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Project description:IntroductionHealth and social care services worldwide need to support ageing populations to live well with advanced progressive conditions while adapting to functional decline and finitude. We aimed to identify and map common elements of effective geriatric and palliative care services and consider their scalability and generalisability to high, middle and low-income countries.MethodsTertiary systematic review (Cochrane Database of Systematic Reviews, CINAHL, Embase, January 2000-October 2019) of studies in geriatric or palliative care that demonstrated improved quality of life and/or health service use outcomes among older people with advanced progressive conditions. Using frameworks for health system analysis, service elements were identified. We used a staged, iterative process to develop a 'common components' logic model and consulted experts in geriatric or palliative care from high, middle and low-income countries on its scalability.Results78 studies (59 geriatric and 19 palliative) spanning all WHO regions were included. Data were available from 17 739 participants. Nearly half the studies recruited patients with heart failure (n=36) and one-third recruited patients with mixed diagnoses (n=26). Common service elements (≥80% of studies) included collaborative working, ongoing assessment, active patient participation, patient/family education and patient self-management. Effective services incorporated patient engagement, patient goal-driven care and the centrality of patient needs. Stakeholders (n=20) emphasised that wider implementation of such services would require access to skilled, multidisciplinary teams with sufficient resource to meet patients' needs. Identified barriers to scalability included the political and societal will to invest in and prioritise palliative and geriatric care for older people, alongside geographical and socioeconomic factors.ConclusionOur logic model combines elements of effective services to achieve optimal quality of life and health service use among older people with advanced progressive conditions. The model transcends current best practice in geriatric and palliative care and applies across the care continuum, from prevention of functional decline to end-of-life care.Prospero registration numberCRD42020150252.

Project description:BackgroundBreathlessness is the prominent symptom of chronic obstructive pulmonary disease (COPD). Despite optimal therapeutic management including pharmacological and non-pharmacological interventions, many COPD patients exhibit significant breathlessness. Chronic breathlessness is defined as breathlessness that persists despite optimal treatment of the underlying disease. Because of the major disability related to chronic breathlessness, symptomatic treatments including opioids have been recommended by several authors. The prevalence of chronic breathlessness in COPD and its management in routine clinical practice have been poorly investigated. Our aim was to examine prevalence, associated characteristics and management of chronic breathlessness in patients with COPD recruited in a real-life tertiary hospital-based cohort.MethodsA prospective study was conducted among 120 consecutive COPD patients recruited, in stable condition, at Nancy University Hospital, France. In parallel, 88 pulmonologists of the same geographical region were asked to respond to an on-line questionnaire on breathlessness management.ResultsSixty four (53%) patients had severe breathlessness (modified Medical Research Council scale≥3), despite optimal inhaled medications for 94% of them; 40% had undergone pulmonary rehabilitation within the past 2 years. The severity of breathlessness increased with increasing airflow limitation. Breathlessness was associated with increased symptoms of anxiety, depression and with osteoporosis. No relation was found with other symptoms, exacerbation rate, or cardiovascular comorbidities. Among the patients with chronic breathlessness and Hospitalized Anxiety and/or Depression score > 10, only 25% were treated with antidepressant or anxiolytic. Among the pulmonologists 46 (52%) answered to the questionnaire and expressed a high willingness to prescribe opioids forchronic breathlessness, which contrasted with the finding that none of these patients received such treatments against breathlessness.ConclusionTreatment approaches to breathlessness and associated psychological distress are insufficient in COPD. This study highlights underuse of pulmonary rehabilitation and symptomatic treatment for breathlessness.

Project description:Breathlessness is a common and distressing symptom affecting many patients with advanced disease both from malignant and non-malignant origin. A combination of pharmacological and non-pharmacological measures is necessary to treat this symptom successfully. Breathlessness services in various compositions aim to provide comprehensive care for patients and their carers by a multiprofessional team but their effectiveness and cost-effectiveness have not yet been proven. The Breathlessness Support Service (BSS) is a newly created multiprofessional and interdisciplinary outpatient service at a large university hospital in South East London. The aim of this study is to develop and evaluate the effectiveness and cost effectiveness of this multidisciplinary out-patient BSS for the palliation of breathlessness, in advanced malignant and non-malignant disease.The BSS was modelled based on the results of qualitative and quantitative studies, and systematic literature reviews. A randomised controlled fast track trial (RCT) comprising two groups: 1) intervention (immediate access to BSS in addition to standard care); 2) control group (standard best practice and access to BSS after a waiting time of six weeks). Patients are included if suffering from breathlessness on exertion or at rest due to advanced disease such as cancer, chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), interstitial lung disease (ILD) or motor neurone disease (MND) that is refractory to maximal optimised medical management. Both quantitative and qualitative outcomes are assessed in face to-face interviews at baseline, after 6 and 12 weeks. The primary outcome is patients' improvement of mastery of breathlessness after six weeks assessed on the Chronic Respiratory Disease Questionnaire (CRQ). Secondary outcomes for patients include breathlessness severity, symptom burden, palliative care needs, service use, and respiratory measures (spirometry). For analyses, the primary outcome, mastery of breathlessness after six weeks, will be analysed using ANCOVA. Selection of covariates will depend on baseline differences between the groups. Analyses of secondary outcomes will include patients' symptom burden other than breathlessness, physiological measures (lung function, six minute walk distance), and caregiver burden.Breathlessness services aim to meet the needs of patients suffering from this complex and burdensome symptom and their carers. The newly created BSS is different to other current services as it is run in close collaboration of palliative medicine and respiratory medicine to optimise medical care of patients. It also involves professionals from various medical, nursing, physiotherapy, occupational therapy and social work background.ClinicalTrials.gov (NCT01165034).

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Patient perspectives on how to optimise benefits from a breathlessness service for people with COPD.

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Patient perspectives on how to optimise benefits from a breathlessness service for people with COPD.

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