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Genetic Information-Seeking Behaviors and Knowledge among Family Members and Patients with Inherited Bone Marrow Failure Syndromes.

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第一作者： Jada G,Hamilton

第一单位： Department of Psychiatry & Behavioral Sciences, Memorial Sloan Kettering Cancer Center, 641 Lexington Avenue, 7th floor, New York, NY, 10022, USA. hamiltoj@mskcc.org.

作者： Jada G,Hamilton ^[1] ; Sadie P,Hutson ^[2] ; Amy E,Frohnmayer ^[3] ; Paul K J,Han ^[4] ; June A,Peters ^[5] ; Ann G,Carr ^[6] ; Blanche P,Alter ^[5]

作者单位： Department of Psychiatry & Behavioral Sciences, Memorial Sloan Kettering Cancer Center, 641 Lexington Avenue, 7th floor, New York, NY, 10022, USA. hamiltoj@mskcc.org. ^[1] College of Nursing, University of Tennessee-Knoxville, Knoxville, TN, USA. ^[2] Clinical Mental Health Counseling Program, Oregon State University - Cascades, Bend, OR, USA. ^[3] Center for Outcomes Research and Evaluation, Maine Medical Center Research Institute, Scarborough, ME, USA. ^[4] Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Rockville, MD, USA. ^[5] Westat, Rockville, MD, USA. ^[6]

关键词 Diamond-Blackfan anemia Dyskeratosis congenita Fanconi anemia Genetic counseling Genetic literacy Information seeking Inherited bone marrow failure syndromes Shwachman-Diamond syndrome

医学主题词成年人(Adult);贫血, 再生障碍性(Anemia, Aplastic);贫血, Diamond-Blackfan(Anemia, Diamond-Blackfan);健康态度(Attitude to Health);骨髓疾病(Bone Marrow Diseases);横断面研究(Cross-Sectional Studies);先天性角化不良(Dyskeratosis Congenita);胰腺外分泌功能不全(Exocrine Pancreatic Insufficiency);范科尼贫血(Fanconi Anemia);女(雌)性(Female);血红蛋白尿, 阵发性(Hemoglobinuria, Paroxysmal);人类(Humans);信息寻求行为(Information Seeking Behavior);脂肪瘤样病(Lipomatosis);男(雄)性(Male);中年人(Middle Aged);病人接受卫生保健的程度(Patient Acceptance of Health Care)

DOI 10.1007/s10897-014-9807-3

PMID 25540896

发布时间 2025-05-29

基金项目

P30 CA008748/CA/NCI NIH HHS/United States Z99 CA999999/Intramural NIH HHS/United States Z99 HG999999/Intramural NIH HHS/United States HHSN261200655001C/PHS HHS/United States

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