Walking in the shoes of patients, not just in their genes: a patient-centered approach to genomic medicine [0.03%]
穿行在患者的生活里而不仅仅是他们的基因中：以患者为中心的精准医疗方法论
Neeraj K Arora,Bradford W Hesse,Steven B Clauser
Neeraj K Arora
Genomic technologies are increasing the precision with which clinicians can assess an individual patient's risk for developing diseases and identify which patients are likely to benefit from specific treatments. Also advocating for a shift ...
How Narrative Journalistic Stories Can Communicate the Individual's Challenges of Daily Living with Amyotrophic Lateral Sclerosis [0.03%]
叙事新闻报道如何传达肌萎缩侧索硬化症患者的日常生活挑战
Jørgen Jeppesen,Jes Rahbek,Ole Gredal et al.
Jørgen Jeppesen et al.
Background: To complement the clinical and therapeutic knowledge about the symptoms, prognosis, and social implications of amyotrophic lateral sclerosis (ALS), health research and care need to develop methods that capture...
Assessment of a Stool Symptom Screener and Understanding the Opioid-Induced Constipation Symptom Experience [0.03%]
粪便症状筛查评估及阿片类药物引起便秘的症状体验分析
Karin S Coyne,Brooke M Currie,William C Holmes et al.
Karin S Coyne et al.
Background: Many patients with chronic opioid-induced constipation (OIC) seek treatment to relieve their symptoms. A symptom screener may be useful in identifying symptomatic OIC patients. ...
Multicenter Study
The patient. 2015 Aug;8(4):317-27. DOI:10.1007/s40271-014-0087-7 2015
Peer Support and Mentorship in a US Rare Disease Community: Findings from the Cystinosis in Emerging Adulthood Study [0.03%]
美国罕见病患者社群中的同伴互助与导师指导——源自囊性硬化症青年期样本的发现
Maya Doyle
Maya Doyle
Purpose: Medical advances have transformed the rare disease cystinosis from fatal in childhood to chronic and manageable into adulthood. Disease-specific advocacy groups and interaction via the Internet create opportuniti...
Improving the Validity of Stated-Preference Data in Health Research: The Potential of the Time-to-Think Approach [0.03%]
健康研究中时间思考法对定性偏好数据有效性的改进作用
Semra Ozdemir
Semra Ozdemir
The objective of this article was to discuss potential benefits and drawbacks of using a time-to-think (TTT) approach in healthcare research. Implementing a TTT approach in a stated-preference survey study gives respondents the opportunity ...
Investigating patient perspectives on medical returns and buying medicines online in two communities in Melbourne, Australia: results from a qualitative study [0.03%]
澳大利亚墨尔本两个社区的患者对医疗退货和在线购药的观点定性研究结果
Bianca Brijnath,Josefine Antoniades,Jon Adams
Bianca Brijnath
Aims: By going online or overseas, patients can purchase a range of prescription and over-the-counter drugs and complementary and alternative medicine (CAM), without prescription and without input from a qualified health ...
Involvement of patients with lung and gynecological cancer and their relatives in psychosocial cancer rehabilitation: a narrative review [0.03%]
肺癌及妇科癌症患者及其家属参与心理社会性癌症康复治疗：综述文章
Bente Hoeck,Loni Ledderer,Helle Ploug Hansen
Bente Hoeck
Introduction: Getting cancer is stressful for most patients and their relatives, and research has shown that psychosocial support is needed. Still, cancer care fails to appropriately address psychosocial problems associat...
Identifying the benefits and risks of emerging treatments for idiopathic pulmonary fibrosis: a qualitative study [0.03%]
一种定性研究：识别特发性肺纤维化新疗法的益处和风险
John F P Bridges,Victoria Federico Paly,Elizabeth Barker et al.
John F P Bridges et al.
Objective: Idiopathic pulmonary fibrosis (IPF) is a rare, progressive, and fatal disease, with very few therapeutic options. Given a paucity of qualitative research to the perspective of patients and other stakeholders in...
The development of capability measures in health economics: opportunities, challenges and progress [0.03%]
卫生经济学中能力测量的发展：机遇、挑战和进步
Joanna Coast,Philip Kinghorn,Paul Mitchell
Joanna Coast
Recent years have seen increased engagement amongst health economists with the capability approach developed by Amartya Sen and others. This paper focuses on the capability approach in relation to the evaluative space used for analysis with...