Clinical communication preferences in cystic fibrosis and strategies to optimize care.


  • 影响因子:2.38
  • DOI:10.1002/ppul.24655
  • 作者列表:"Cooley L","Hudson J","Potter E","Raymond KF","George C","Georgiopoulos AM
  • 发表时间:2020-01-24

BACKGROUND:The importance of optimizing communication between clinicians and individuals and families living with cystic fibrosis (CF) about daily care, adherence, and related psychosocial concerns is well documented. The purpose of this study was to gain an understanding of interpersonal communication experiences and preferences among individuals and families living with CF as they engage with the clinical team. The study also aimed to reveal opportunities for enhancing future interpersonal communication practices. METHODS:Five U.S. CF care centers participated in the following activities: (a) On-site observation of clinic interactions during outpatient visits; (b) On-site 1:1 interviews with individuals living with CF, their family members, and CF clinicians; (d) Focus groups conducted in person with CF care team members; (d) Focus groups conducted virtually with adults and family members with CF. Content analysis of transcripts and constant comparative methods were used to identify emergent themes. RESULTS:Four themes related to participants' needs and preferences for clinic interactions emerged during analysis: (a) eliciting psychosocial concerns, (b) addressing childhood development and transitions, (c) negotiating agendas and sharing decisions, and (d) educating to enhance CF conversations. CONCLUSION:CF clinicians and individuals and families living with CF expressed the need for resources and training to engage in better conversations with each other. Participants identified areas of high priority, including working together around social, psychological, and economic challenges, preparation for transition to adulthood, and sustaining daily care. Findings point to the value of developing advanced communication skills that foster trust-building, negotiating agendas, active listening, and collaborative goal-setting.


背景: 优化临床医生与患有囊性纤维化 (CF) 的个人和家庭之间关于日常护理、依从性和相关心理社会问题的沟通的重要性已经得到很好的记录。本研究的目的是了解 CF 生活的个人和家庭在与临床团队合作时的人际交流经历和偏好。该研究还旨在揭示增强未来人际交往实践的机会。 方法: 5 个美国 CF care 中心参加了以下活动 :( a) 门诊就诊时门诊互动的现场观察; (b) 1:1 现场采访 CF 患者、其家庭成员和 CF 临床医生; (d) 与 CF 护理团队成员亲自进行的焦点小组; (d)焦点小组与 CF 成人和家庭成员进行了虚拟。采用转录本的内容分析和恒定比较方法确定突现主题。 结果: 在分析过程中出现了与参与者对诊所互动的需求和偏好相关的四个主题 :( a) 引发社会心理问题,(b) 解决儿童发展和过渡问题,(c) 谈判议程和分享决定,以及 (d) 教育以加强 CF 对话。 结论: CF 临床医生以及患有 CF 的个人和家庭表示需要资源和培训来更好地相互对话。与会者确定了高度优先的领域,包括围绕社会、心理和经济挑战共同努力,为过渡到成年做准备,并维持日常护理。研究结果指出了发展高级沟通技能的价值,这些技能可以促进建立信任、谈判议程、积极倾听和协作目标设定。



作者列表:["Vadillo C","Nieto MA","Romero-Bueno F","Leon L","Sanchez-Pernaute O","Rodriguez-Nieto MJ","Freites D","Jover JA","Álvarez-Sala JL","Abasolo L"]

METHODS:OBJECTIVES:To asses the clinical course in RA-related interstitial lung disease (RA-ILD) patients with and without rituximab (RTX). The influence of other variables was also evaluated. METHODS:A longitudinal multicentre study was conducted in RA diagnosed with ILD from 2007 until 2018 in Madrid. Patients were included in a registry [pNEumology RhEumatology Autoinmune diseases (NEREA)] from the time of ILD diagnosis. The main endpoint was functional respiratory impairment (FI), when there was a decline ≥5% in the predicted forced vital capacity compared with the previous one. Pulmonary function was measured at baseline and in follow-up visits every 6-12 months. The independent variable was therapy with RTX. Covariables included sociodemographic, clinical, radiological and other therapies. Survival techniques were used to estimate the incidence rate (IR) and 95% CI of functional impairment, expressed per 100 patient-semesters. Cox multivariate regression models were run to examine the influence of RTX and other covariates on FI. Results were expressed as the hazard ratio (HR) and CI. RESULTS:A total of 68 patients were included. FI occurred in 42 patients [IR 23.5 (95% CI 19, 29.1)] and 50% of them had FI within 1.75 years of an ILD diagnosis. A multivariate analysis showed that RTX exposure resulted in a lower risk of FI compared with non-exposure [HR 0.51 (95% CI 0.31, 0.85)]. Interstitial pneumonia, glucocorticoids, disease activity and duration also influenced FI. CONCLUSION:RA-ILD patients deteriorate over time, with the median time free of impairment being <2 years. Patients exposed to RTX had a higher probability of remaining free of FI compared with other therapies. Other factors have also been identified. Key words: rheumatoid arthritis, interstitial lung disease, observational study, rituximab and prognosis

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作者列表:["Shibaki, Ryota","Murakami, Shuji","Matsumoto, Yuji","Yoshida, Tatsuya","Goto, Yasushi","Kanda, Shintaro","Horinouchi, Hidehito","Fujiwara, Yutaka","Yamamoto, Nobuyuki","Kusumoto, Masahiko","Yamamoto, Noboru","Ohe, Yuichiro"]

METHODS:The safety of anti-programmed cell death 1 (PD-1) antibody for patients with preexisting interstitial lung disease (ILD) remains unknown. The aim of this study was to evaluate the dependence of preexisting ILD on anti-PD-1 antibody-induced pneumonitis in non-small cell lung cancer (NSCLC) patients. We retrospectively reviewed the association of preexisting ILD with the incidence, radiographic pattern, and outcome of pneumonitis in NSCLC patients receiving anti-PD-1 antibody. A total of 331 patients were included in this study. Of these patients, 17 had preexisting ILD. The incidence of pneumonitis was higher among the patients with preexisting ILD than among those without preexisting ILD (29% vs. 10%, P  = 0.027). The distributions of the CT appearances at the onset of anti-PD-1 antibody-induced pneumonitis were as follows: for the patients with preexisting ILD, two patients (40%) had diffuse alveolar damage (DAD), one patient each with organizing pneumonia-like (OP), hypersensitivity pneumonitis (HP), and other patterns (20% each); for the patients without preexisting ILD, 19 patients (61%) had OP, 8 (26%) had HP, 3 (10%) had DAD, and 1 (3.2%) had other patterns. The median onset time from the initiation of anti-PD-1 antibody treatment until the development of pneumonitis was 1.3 months (range 0.3–2.1 months) for the patients with preexisting ILD and 2.3 months (range 0.2–14.6 months) for the patients without preexisting ILD. Careful attention to the development of pneumonitis is needed, especially within the first 3 months after the start of anti-PD-1 antibody treatment, when using anti-PD-1 antibody to treat patients with preexisting ILD.

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翻译标题与摘要 下载文献
来源期刊:New biotechnology
作者列表:["Sousa SA","Soares-Castro P","Seixas AMM","Feliciano JR","Balugas B","Barreto C","Pereira L","Santos PM","Leitão JH"]

METHODS::Bacteria of the Burkholderia cepacia complex (Bcc) are ubiquitous multidrug resistant organisms and opportunistic pathogens capable of causing life threatening lung infections among cystic fibrosis (CF) patients. No effective therapies are currently available to eradicate Bcc bacteria from CF patients, as these organisms are inherently resistant to the majority of clinically available antimicrobials. An immunoproteomics approach was used to identify Bcc proteins that stimulate the humoral immune response of the CF host, using bacterial cells grown under conditions mimicking the CF lung environment and serum samples from CF patients with a clinical record of Bcc infection. 24 proteins of the Bcc strain B. cenocepacia J2315 were identified as immunoreactive, 19 here reported as immunogenic for the first time. Ten proteins were predicted as extracytoplasmic, 9 of them being conserved in Bcc genomes. The immunogenic Bcc extracytoplasmic proteins are potential targets for development of novel therapeutic strategies and diagnostic tools to protect patients against the onset of chronic Bcc lung infections.