The top 10 research priorities in cystic fibrosis developed by a partnership between people with CF and healthcare providers

被引：172

作者：

Rowbotham, Nicola J. ^{[1
]}

Smith, Sherie ^{[1
]}

Leighton, Paul A. ^{[2
]}

Rayner, Oli C. ^{[3
]}

Gathercole, Katie ^{[3
,4
]}

Elliott, Zoe C. ^{[5
]}

Nash, Edward F. ^{[6
]}

Daniels, Tracey ^{[7
]}

Duff, Alistair J. A. ^{[8
]}

Collins, Sarah ^{[9
]}

Chandran, Suja ^{[10
]}

Peaple, Ursula ^{[11
]}

Hurley, Matthew N. ^{[1
]}

Brownlee, Keith ^{[12
]}

Smyth, Alan R. ^{[1
]}

机构：

[1] Univ Nottingham, Evidence Based Child Hlth Grp, Nottingham, England

[2] Univ Nottingham, Sch Med, NIHR Res Design Serv East Midlands, Nottingham, England

[3] Person Cyst Fibrosis, Plymouth, Devon, England

[4] Univ Leeds, Sch Educ, Leeds, W Yorkshire, England

[5] Parent Children CF, Nottingham, England

[6] Heart England NHS Fdn Trust, West Midlands Adult CF Ctr, Birmingham, W Midlands, England

[7] York Teaching Hosp NHS Fdn Trust, Dept Physiotherapy, York Hull Adult CF Unit, York, N Yorkshire, England

[8] Leeds Teaching Hosp NHS Trust, Dept Clin Psychol, Leeds, W Yorkshire, England

[9] Royal Brompton & Harefield NHS Trust, Dept CF, London, England

[10] Kings Coll Hosp London, Reg Paediat CF Ctr, London, England

[11] NHS England, Natl Team Specialised Commissioning, London, England

[12] Cyst Fibrosis Trust, London, England

来源：

THORAX | 2018年 / 73卷 / 04期

关键词：

cystic fibrosis; patient engagement; research priorities;

D O I：

10.1136/thoraxjnl-2017-210473

中图分类号：

R56 [呼吸系及胸部疾病];

学科分类号：

摘要：

There remain many treatment uncertainties in cystic fibrosis (CF). With limited resources, research should focus on questions which are most important to the CF community. We conducted a James Lind Alliance Priority Setting Partnership in CF. Research questions were elicited and then prioritised in successive surveys. A workshop agreed the final top 10. Online methods avoided cross infection and widened participation. The elicitation survey had 482 respondents (1080 questions) and prioritisation survey 677 respondents. Participants were drawn equally from the patient and clinical communities globally. We have achieved a consensus on 10 research priorities which will be attractive to funders.

引用

页码：388 / 390

页数：3

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