Palliative care needs in cystic fibrosis: hospital survey.

IF 2 4区医学 Q3 HEALTH CARE SCIENCES & SERVICES

BMJ Supportive & Palliative Care Pub Date : 2024-12-31 DOI:10.1136/spcare-2024-005318

Geana Paula Kurita, Inge Eidemak, Tacjana Pressier, Sille Larsen, Per Sjøgren, Camilla Lykke

{"title":"Palliative care needs in cystic fibrosis: hospital survey.","authors":"Geana Paula Kurita, Inge Eidemak, Tacjana Pressier, Sille Larsen, Per Sjøgren, Camilla Lykke","doi":"10.1136/spcare-2024-005318","DOIUrl":null,"url":null,"abstract":"Background: Cystic fibrosis (CF) is an incurable, progressive disease that affects multiple organs, causing burdensome symptoms. This study aimed to explore the palliative care needs in patients with CF, focusing on health-related quality of life (HRQOL), fatigue, anxiety and depression.Methods: From October 2019 to March 2020, a cross-sectional questionnaire survey was conducted with outpatients with CF at the Infectious Medicine Clinic in a Danish University Hospital.Results: 130 patients completed at least one questionnaire. Mean age was 35.5 years (SD 11.5), with 51.7% males. Charlson's comorbidity index mean score was 1.3 (SD 1.6). Patients with CF had significantly lower scores in general health, vitality, social functioning, role emotional and mental health compared with the Danish population. Mean fatigue score of patients was 50.9 (SD 16.2), with the highest scores in general fatigue, physical fatigue and reduced activity. Additionally, 33% indicated anxiety and 19.5% depression. 51.6% were treated with Tezacaftor/Ivacaftor or Lumacaftor/Ivacaftor.Conclusion: This study found poor HRQOL and burdensome symptoms of fatigue, anxiety and depression in patients with CF compared with the general Danish population. The results suggest that systematic assessments and palliative care interventions should be integrated into routine CF care.","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0000,"publicationDate":"2024-12-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"BMJ Supportive & Palliative Care","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1136/spcare-2024-005318","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}

引用次数: 0

Abstract

Background: Cystic fibrosis (CF) is an incurable, progressive disease that affects multiple organs, causing burdensome symptoms. This study aimed to explore the palliative care needs in patients with CF, focusing on health-related quality of life (HRQOL), fatigue, anxiety and depression.

Methods: From October 2019 to March 2020, a cross-sectional questionnaire survey was conducted with outpatients with CF at the Infectious Medicine Clinic in a Danish University Hospital.

Results: 130 patients completed at least one questionnaire. Mean age was 35.5 years (SD 11.5), with 51.7% males. Charlson's comorbidity index mean score was 1.3 (SD 1.6). Patients with CF had significantly lower scores in general health, vitality, social functioning, role emotional and mental health compared with the Danish population. Mean fatigue score of patients was 50.9 (SD 16.2), with the highest scores in general fatigue, physical fatigue and reduced activity. Additionally, 33% indicated anxiety and 19.5% depression. 51.6% were treated with Tezacaftor/Ivacaftor or Lumacaftor/Ivacaftor.

Conclusion: This study found poor HRQOL and burdensome symptoms of fatigue, anxiety and depression in patients with CF compared with the general Danish population. The results suggest that systematic assessments and palliative care interventions should be integrated into routine CF care.

查看原文本刊更多论文

囊性纤维化患者的姑息治疗需求：医院调查。

背景：囊性纤维化（CF）是一种无法治愈的进行性疾病，可累及多个器官，症状严重。本研究旨在探讨CF患者的姑息治疗需求，重点关注与健康相关的生活质量（HRQOL）、疲劳、焦虑和抑郁。方法：2019年10月至2020年3月，对丹麦大学医院感染医学门诊CF患者进行横断面问卷调查。结果：130例患者完成了至少一份问卷。平均年龄35.5岁（SD 11.5），男性占51.7%。Charlson合并症指数平均评分为1.3 （SD 1.6）。与丹麦人相比，CF患者在一般健康、活力、社会功能、角色情感和心理健康方面的得分明显较低。患者的平均疲劳评分为50.9 (SD 16.2)，其中一般疲劳、身体疲劳和活动减少得分最高。此外，33%的人表示焦虑，19.5%的人表示抑郁。51.6%的患者使用Tezacaftor/Ivacaftor或Lumacaftor/Ivacaftor。结论：本研究发现，与丹麦普通人群相比，CF患者的HRQOL较差，疲劳、焦虑和抑郁等症状加重。结果表明，系统评估和姑息治疗干预措施应纳入常规CF护理。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文求助全文

来源期刊

BMJ Supportive & Palliative Care Medicine-Medicine (miscellaneous)

CiteScore

4.60

自引率

7.40%

发文量

170

期刊介绍： Published quarterly in print and continuously online, BMJ Supportive & Palliative Care aims to connect many disciplines and specialties throughout the world by providing high quality, clinically relevant research, reviews, comment, information and news of international importance. We hold an inclusive view of supportive and palliative care research and we are able to call on expertise to critique the whole range of methodologies within the subject, including those working in transitional research, clinical trials, epidemiology, behavioural sciences, ethics and health service research. Articles with relevance to clinical practice and clinical service development will be considered for publication. In an international context, many different categories of clinician and healthcare workers do clinical work associated with palliative medicine, specialist or generalist palliative care, supportive care, psychosocial-oncology and end of life care. We wish to engage many specialties, not only those traditionally associated with supportive and palliative care. We hope to extend the readership to doctors, nurses, other healthcare workers and researchers in medical and surgical specialties, including but not limited to cardiology, gastroenterology, geriatrics, neurology, oncology, paediatrics, primary care, psychiatry, psychology, renal medicine, respiratory medicine.