Breathlessness services as a new model of support for patients with respiratory disease

Abstract

The complexity of breathlessness in advanced disease requires a diversity of measures ideally tailored to the individual patient needs. ‘Breathlessness services’ have been systematically developed and tested to provide specific interventions and support for patients and their carers. The aim of this article is (1) to identify and describe components of breathlessness services and (2) to describe the clinical model of one specific service in more detail. This article is based on a systematic review evaluating randomized controlled trials (RCTs) and quasi-RCTs which examine the effectiveness of services aiming to improve breathlessness of patients with advanced disease. The Munich Breathlessness Service (MBS) is described in detail as an example of a recently set-up specialist service. Five service models were identified which were tested in six RCTs. Services varied regarding structure and composition with face-to-face meetings, some with additional telephone contacts. Service duration was median 6 weeks (range 2–12 weeks). Involved professions were nurses, various therapists and, in two models, also physicians. The breathing–thinking–functioning model was targeted by various service components. The MBS is run by a multi-professional team mainly with physicians and physiotherapists. Patients are seen weekly over 5–6 weeks with an individualized management plan. Breathlessness services are a new model for patients with advanced disease integrating symptom management and early access to palliative care.

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

“…Results from qualitative studies to date also raise the question of how future trials of breathlessness services should measure benefits, given how wide-ranging and difficult to quantify these are even when informed by in-depth data. To date, standardised patient-reported outcomes (PROs) have been the most common endpoints in breathlessness service trials 15 . However, these are necessarily limited in their capacity to assess benefit across diverse domains without over-burdening patients with multiple surveys.…”

“…A review by Bausewein et al 15 compared and contrasted characteristics of the above five services together with their own untested Munich Breathlessness Service, and identified variability with regard to: intensity and duration (1-8 sessions over 1-12 weeks); location and mode (face-to-face in the clinic, at home and/or via telephone); individual versus group delivery; and the disciplines and specialties involved (especially the degree to which physicians were involved and a respiratory or palliative care perspective was emphasised) 15 . Thus far, there has been only one attempt to explore the influence of these variables on service efficacy.…”

Holistic services for people with advanced disease and chronic or refractory breathlessness: a mixed-methods evidence synthesis

“…Education/advice 9 90,94,95,157,[162][163][164][165][166] Nutritional advice/support 3 95,164,167 Sleep hygiene 2 95,168 Smoking cessation advice/support 1 95 Written information 4 94,95,164,166 Psychosocial support Carer/family support 5 90,94,95,162,166 Psychological support 12 90,94,95,101,154,156,161,162,[164][165][166][167] Social support 7 90,94,95,154,156,164,166 Spiritual support 1 94…”

“…Breathing techniques 14 90,94,95,100,101,154,156,157,161,163,164,166,168,169 Emergency/crisis planning 3 94,95,166 Exercise plans 5 94,95,164,166,170 Handheld fan/water spray 5 94,95,101,164,166 Goal-setting 4 90…”

Embedded Palliative Care Provider in Pulmonary Practice; Discussion of the Structure, Process, and Outcomes

“…Most providers agree that this group of patients experience poor quality of life and heavy symptom burden [5]. Palliative care providers are well versed to provide care for these chronically ill patients with COPD [6]. Palliative care is not synonymous with terminal care; rather the focus is on symptom management and helping to maintain a reasonable quality of life.…”