Research priorities for exacerbations of COPD

Chronic obstructive pulmonary disease (COPD) affects more than 250 million people around the world. In addition to daily symptoms and functional limitation, living with COPD are susceptible acute deteriorations in respiratory health. People say that these exacerbations most disruptive aspect of their frequent associated rapid progression, impaired quality life, excess mortality. Exacerbations therefore cause costs COPD: personal cost those affected financial health services society broadly. Exacerbation prevention is a major goal guidelines. Even when used optimally, however, interventions prevent incompletely effective there have been no new therapies treat decades. Progress can only occur through research. Respiratory research has neglected relation burden strong argument for prioritising addresses questions important condition given agendas set by academics or pharmaceutical industry do not necessarily reflect priorities patients services. The James Lind Alliance (JLA), part UK National Institute Health Research pioneered robust transparent methodology bring together patients, carers, clinicians as equal partners Priority Setting Partnerships (PSP) systematically collect uncertainties prioritise resulting questions. final output list top ten want community address. A JLA PSP was undertaken from February 2019, April 2021 (detailed be found Guidebook, appendix, p 2). brief, five stages: (1) establishing agreeing project scope; (2) gathering identifying using survey; (3) summarising processing develop over-arching questions; (4) interim prioritisation web (5) priority setting workshop reach consensus on total 571 respondents submitted 1912 individual responses, which 791 were in-scope reduced 59 overarching 418 (73%) initial 39 (7%) 110 (19%) clinicians. 51 judged unanswered checking evidence taken ranking. 191 (44% carers) ranked produce shortlist 16 go forward ranking workshop. identified at 1-day online listed table, includes joint stage, separate carers Further detail results (including all stage) appendix (p 8).TableThe exacerbationsResearch questionPatient carer rank prioritisationClinician prioritisationJoint prioritisation1What COPD?11042What best way tell start an exacerbation day-to-day variation symptoms?=73=23What difference between different changing person COPD?6214What optimal combination treatments what decide this patients?=136=55What associations comorbidity risk exacerbations?24=10=146Which palliative care regimes should exacerbation, circumstances, potential benefits?=14=16=117Why some recur following treatment?11=8=58What risks benefits rescue packs exacerbations, how they used?=1121139How does presence anxiety depression affect prevention, diagnosis, treatment exacerbations?=205810What long-term antibiotics used?9=25=14COPD=chronic disease. Open table tab COPD=chronic highest rated question identify better ways exacerbations. Despite availability many pharmacological non-pharmacological reduce remain even implemented well our highlight importance developing novel approaches prevention. Specific relating focused understanding links exacerbfation risk. These include manage COPD, use antibiotic prophylaxis, while known adverse effects, including development bacterial resistance. One sought understand recurrence (with ultimate aim intervene recurrent exacerbations). Regarding two related concept clinical diagnosis exclusion without diagnostic test. find assist differentiate symptom second aimed differentiation other causes might mimic (or complicate) exacerbations—for example cardiac dysfunction, pneumonia, embolus. Questions packs, (personalised medicine) and, notably, COPD. This first devoted key strength work methodology. transcends perspectives create shared priorities. While we had large sample size, few black minority ethnic backgrounds. mostly responded online, digital exclusion. study conducted although likely relevance high-income settings, address low-income middle-income countries. Prioritising rigorous positions submit commissioned investigator-led calls knowledge transparently co-developed via multiprofessional team, partnership such considered relevant practice changing. proposals developed much funded. We will now lobby priorities, secure funding prioritised topics carers. MB, CEB, TB, JKQ, HAR, ES, TMAW, JRH applicants original grant British Lung Foundation (BLF). SH, JK, received support attend meetings, payment employers education advisory work, academic grants companies make medicines TMAW Director shareholder Mymhealth. SU Advisor. JSA, JA, JL, JM competing interests. thank BLF research, participants who took surveys workshops. Download .pdf (.31 MB) Help pdf files Supplementary