EPS2.06 What have we been missing all these years? Empowering the patient’s voice
نویسندگان
چکیده
Objectives: Our objective was to develop and test a tool empower people with cystic fibrosis (PWCF) discuss the topics that matter them most CF team. Method: A multidisciplinary group from University Hospital Southampton Adult Palliative Care Teams used quality improvement (QI) methods create communication tool. The is paper sheet possible for discussion arranged within six themed bubbles: My health, Support, Lifestyle changes, Treatment, future Other-a bubble left blank encourage of we did not include. pilot study established considered important by PWCF From July 2022 sent 82 consecutive week prior Annual Review written feedback requested at clinic. Results: 72 (88%) gave 27 (33%) completed Mean age 29 54% female. FEV1 ranged 36 112% predicted (mean 77%). forms, 115 issues were ticked one ticking 18 individual items. bubbles frequently chosen ‘Support’ ‘My future’ 5.7 5.4 ticks items these respectively) least ‘Treatment’ 1.3 ticks/item). 20 added ‘Other’ bubble. On average females more in all than males. commonest both genders confidence, anxiety/stress, finances. 14 on disease modifying drug only 3/14 identified discuss. 73% rated useful or very felt having suggested made it easier talk about them. Conclusion: found helpful use opened various topics, particularly psychosocial, including many previously Ongoing QI work includes assessment our response uncovered need. We are also adapting paediatric other diseases.
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ژورنال
عنوان ژورنال: Journal of Cystic Fibrosis
سال: 2023
ISSN: ['1569-1993', '1873-5010']
DOI: https://doi.org/10.1016/s1569-1993(23)00307-7