PDF(Pubmed)
Abstract：
UNASSIGNED: The aim of this study was to identify and prioritize aspects essential for decision making in patients with diffuse cutaneous systemic sclerosis (dcSSc) and to gain insight into information preferences of treatment options which could guide development of a leaflet for patients.
UNASSIGNED: A three-round Delphi study was conducted with a panel of patients with dcSSc. The questionnaire was based on a systematic literature search regarding benefits and harms of four main treatment options in dcSSc: methotrexate, mycophenolate mofetil, cyclophosphamide pulses and stem cell transplantation. Patients were asked to identify information that is essential for making a treatment decision. After the third round, a live, online discussion was held in order to reach consensus on these items and to discuss the content and design of the leaflet. Consensus was defined as ⩾75% agreement among panel members.
UNASSIGNED: Of the 36 patients invited, 78% (n = 28) participated in one or more rounds, 67% (n = 24) completed the first, 69% (n = 25) the second and 75% (n = 27) the third round. In the last round, median age of participants was 51 years (interquartile range, 18) and median disease duration 4 years (interquartile range, 5); 52% were female. Patients had been treated with mycophenolate mofetil (67%), methotrexate (44%), cyclophosphamide (41%), autologous stem cell transplantation (26%), rituximab (4%) or were treatment-naïve (7%). Eight patients joined the live panel discussion. The panel reached consensus on seven benefits (prolonged progression-free survival, improved quality of life, improved daily functioning, improved pulmonary function, improved skin thickness, improved mobility and reduced fatigue) and four harms (treatment-related mortality, infections, cardiac damage, increased risk of cancer) as essential information for decision making. Also a design of a leaflet was made.
UNASSIGNED: This study identified information about treatment options in dcSSc that should be addressed with patients. Our results can be used to develop effective patient information.
UNASSIGNED: A three-round Delphi study was conducted with a panel of patients with dcSSc. The questionnaire was based on a systematic literature search regarding benefits and harms of four main treatment options in dcSSc: methotrexate, mycophenolate mofetil, cyclophosphamide pulses and stem cell transplantation. Patients were asked to identify information that is essential for making a treatment decision. After the third round, a live, online discussion was held in order to reach consensus on these items and to discuss the content and design of the leaflet. Consensus was defined as ⩾75% agreement among panel members.
UNASSIGNED: Of the 36 patients invited, 78% (n = 28) participated in one or more rounds, 67% (n = 24) completed the first, 69% (n = 25) the second and 75% (n = 27) the third round. In the last round, median age of participants was 51 years (interquartile range, 18) and median disease duration 4 years (interquartile range, 5); 52% were female. Patients had been treated with mycophenolate mofetil (67%), methotrexate (44%), cyclophosphamide (41%), autologous stem cell transplantation (26%), rituximab (4%) or were treatment-naïve (7%). Eight patients joined the live panel discussion. The panel reached consensus on seven benefits (prolonged progression-free survival, improved quality of life, improved daily functioning, improved pulmonary function, improved skin thickness, improved mobility and reduced fatigue) and four harms (treatment-related mortality, infections, cardiac damage, increased risk of cancer) as essential information for decision making. Also a design of a leaflet was made.
UNASSIGNED: This study identified information about treatment options in dcSSc that should be addressed with patients. Our results can be used to develop effective patient information.
摘要：
UNASSIGNED：这项研究的目的是确定和优先考虑对弥漫性皮肤系统性硬化症（dcSSc）患者决策至关重要的方面，并深入了解治疗方案的信息偏好，以指导患者的传单开发。
UNASSIGNED：对一组dcSSc患者进行了三轮Delphi研究。该问卷是基于关于dcSSc中四个主要治疗方案的益处和危害的系统文献检索：甲氨蝶呤，霉酚酸酯，环磷酰胺脉冲和干细胞移植。要求患者识别对做出治疗决定至关重要的信息。第三轮之后,一个活的，举行在线讨论，以便就这些项目达成共识，并讨论传单的内容和设计。共识被定义为小组成员之间75%的协议。
未经批准：在邀请的36名患者中，78%(n=28)参加了一轮或多轮比赛，67%(n=24)完成了第一，69%(n=25)第二轮和75%(n=27)第三轮。在最后一轮，参与者的中位年龄为51岁(四分位距，18)和中位疾病持续时间4年(四分位距，5）；52%为女性。患者接受过霉酚酸酯治疗（67%），甲氨蝶呤（44%），环磷酰胺（41%），自体干细胞移植（26%），利妥昔单抗（4%）或未接受治疗（7%）。八名患者参加了现场小组讨论。小组就七项益处达成共识(延长无进展生存期，提高生活质量,改善日常功能，改善肺功能，改善皮肤厚度，改善流动性和减少疲劳)和四个危害(治疗相关死亡率，感染,心脏损伤,癌症风险增加)作为决策的重要信息。还制作了传单的设计。
UNASSIGNED：本研究确定了有关dcSSc治疗方案的信息，应与患者一起解决。我们的结果可用于开发有效的患者信息。
UNASSIGNED：对一组dcSSc患者进行了三轮Delphi研究。该问卷是基于关于dcSSc中四个主要治疗方案的益处和危害的系统文献检索：甲氨蝶呤，霉酚酸酯，环磷酰胺脉冲和干细胞移植。要求患者识别对做出治疗决定至关重要的信息。第三轮之后,一个活的，举行在线讨论，以便就这些项目达成共识，并讨论传单的内容和设计。共识被定义为小组成员之间75%的协议。
未经批准：在邀请的36名患者中，78%(n=28)参加了一轮或多轮比赛，67%(n=24)完成了第一，69%(n=25)第二轮和75%(n=27)第三轮。在最后一轮，参与者的中位年龄为51岁(四分位距，18)和中位疾病持续时间4年(四分位距，5）；52%为女性。患者接受过霉酚酸酯治疗（67%），甲氨蝶呤（44%），环磷酰胺（41%），自体干细胞移植（26%），利妥昔单抗（4%）或未接受治疗（7%）。八名患者参加了现场小组讨论。小组就七项益处达成共识(延长无进展生存期，提高生活质量,改善日常功能，改善肺功能，改善皮肤厚度，改善流动性和减少疲劳)和四个危害(治疗相关死亡率，感染,心脏损伤,癌症风险增加)作为决策的重要信息。还制作了传单的设计。
UNASSIGNED：本研究确定了有关dcSSc治疗方案的信息，应与患者一起解决。我们的结果可用于开发有效的患者信息。
