Priority 20 from the Palliative and end of life care PSP

UNCERTAINTY: What are the best ways to manage acute and/or chronic breathlessness in patients with cancer and non-cancer terminal illnesses? (JLA PSP Priority 20)
Overall ranking	20
JLA question ID	0026/20
Evidence	Walters JAE, Tan DJ, White CJ, Gibson PG, Wood-Baker R, Walters EH. Systemic corticosteroids for acute exacerbations of chronic obstructive pulmonary disease. Cochrane Database of Systematic Reviews 2014, Issue 9. Art. No.: CD001288. DOI: 10.1002/14651858.CD001288.pub4 Barnes H, McDonald J, Smallwood N, Manser R. Opioids for the palliation of refractory breathlessness in adults with advanced disease and terminal illness (Protocol). Cochrane Database of Systematic Reviews 2014, Issue 3. Art. No.: CD011008. DOI: 10.1002/14651858.CD011008. Simon ST, Higginson IJ, Booth S, Harding R, Bausewein C. Benzodiazepines for the relief of breathlessness in advanced malignant and non-malignant diseases in adults. Cochrane Database of Systematic Reviews 2010, Issue 1. Art. No.: CD007354. DOI: 10.1002/14651858.CD007354.pub2 Ongoing trials: Effectiveness of the "Calming Hand" and the hand held fan for the relief of refractory breathlessness from exercise in palliative patients and the self-efficacy of the interventions in a "ritual for crisis" plan for the patient and carer: a feasibility study using a 2x2 factorial randomised controlled trial design ISRCTN40230190 .
Health Research Classification System category	Generic

Extra information provided by this PSP
Original uncertainty examples	We currently have no way of measuring if we are having any impact on a patients quality of life following input from a physiotherapist, or medical input to manage breathlessness. ~ How can we better support patients with respiratory problems, especially breathlessness in palliative care, including patients with COPD and pulmonary fibrosis? ~ What is the best treatment for breathlessness for patients with life-limiting conditions? ~ How can we better support patients with respiratory problems, especially breathlessness in palliative care, including patients with COPD and pulmonary fibrosis? ~ We currently have no way of measuring if we are having any impact on a patients quality of life following input from a physiotherapist, or medical input to manage breathlessness. It would also be beneficial to know if we were able to see patients like this slightly earlier in the disease process, whether we could improve their quality of life for longer
Submitted by	Professionals x 2 ~ Members of the Public x 1
Outcomes to be measured	Change in symptoms; change in management of symptoms.

PSP information
PSP unique ID	0026
PSP name	Palliative and end of life care
Total number of uncertainties identified by this PSP.	83 (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop	21 November 2014