Defining research priorities in cystic fibrosis. Can existing knowledge and training in biomedical research affect the choice?

被引：4

作者：

Buzzetti, Roberto

Galici, Valeria ^{[1
]}

Cirilli, Natalia ^{[2
]}

Majo, Fabio ^{[3
]}

Graziano, Luigi ^{[4
,5
]}

Costa, Stefano ^{[6
]}

Bonacina, Simona

Carrubba, Manila

Davi, Giuseppe

Gagliano, Sabrina

Cazzarolli, Clizia ^{[7
]}

Ficili, Francesca ^{[8
]}

Alghisi, Federico ^{[3
]}

Samaja, Michele ^{[9
]}

Magazzu, Giuseppe ^{[10
]}

机构：

[1] Cyst Fibrosis Ctr Florence, Florence, Italy

[2] United Hosp, Cyst Fibrosis Ctr, Mother Child Dept, Ancona, Italy

[3] Bambino Gesu Pediat Hosp, Cyst Fibrosis Ctr, IRCCS, Rome, Italy

[4] Policlin Umberto 1, Cyst Fibrosis Ctr, Rome, Italy

[5] Sapienza Univ Rome, Dept Publ Hlth & Infect Dis, Rome, Italy

[6] Cyst Fibrosis Ctr Messina, Messina, Italy

[7] Azienda Osped Univ Integrata, Cyst Fibrosis Ctr, Verona, Italy

[8] Cyst Fibrosis Ctr Palermo, Palermo, Italy

[9] Univ Milan, Dept Hlth Sci, Milan, Italy

[10] Univ Messina, Dept Adult & Child Human Pathol, Messina, Italy

来源：

JOURNAL OF CYSTIC FIBROSIS | 2019年 / 18卷 / 03期

关键词：

Research Priorities; Patient-centered outcomes; Patient empowerment; Stakeholders; PATIENT; UNCERTAINTIES;

D O I：

10.1016/j.jcf.2018.02.009

中图分类号：

R56 [呼吸系及胸部疾病];

学科分类号：

摘要：

The aim of this report is to assess whether the research issues priorities are perceived differently according to the Stakeholders (SH)'s individual knowledge of research topics and degree of training in biomedical research. Four groups of SH were enrolled in this study: 1. Skilled SH, specifically trained in biomedicine; 2. Unskilled untrained SH who responded to a written questionnaire in 2015; 3. SH who were trained for one year in a course delivered by professionals; 4. Untrained SH who responded to an online questionnaire in 2017. The large ranking order variability observed among groups addresses the question that the choices are markedly influenced by the SH's backgrounds. Such results emphasize the need to consider the education level and the delivery of ad hoc training activities by professionals to broaden the base of SH who may be considered qualified to transfer the Patient Centered Outcome Research principles into practice. (C) 2018 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.

引用

页码：378 / 381

页数：4

共 11 条

[1] Assuring the Patient Centeredness of Patient-Reported Outcomes: Content Validity in Medical Product Development and Comparative Effectiveness Research [J].