'Doctor Google' ending the diagnostic odyssey in lysosomal storage disorders: parents using internet search engines as an efficient diagnostic strategy in rare diseases

被引:35
作者
Bouwman, Machtelt G. [1 ]
Teunissen, Quirine G. A. [1 ]
Wijburg, Frits A. [1 ]
Linthorst, Gabor E. [2 ]
机构
[1] Univ Amsterdam, Acad Med Ctr, Dept Pediat, NL-1105 AZ Amsterdam, Netherlands
[2] Univ Amsterdam, Acad Med Ctr, Dept Endocrinol & Metab, NL-1105 AZ Amsterdam, Netherlands
关键词
HURLER-SYNDROME; HEALTH-CARE; TRANSPLANTATION; THERAPY;
D O I
10.1136/adc.2009.171827
中图分类号
R72 [儿科学];
学科分类号
100202 ;
摘要
The expansion of the internet has resulted in widespread availability of medical information for both patients and physicians. People increasingly spend time on the internet searching for an explanation, diagnosis or treatment for their symptoms. Regarding rare diseases, the use of the internet may be an important tool in the diagnostic process. The authors present two cases in which concerned parents made a correct diagnosis of a lysosomal storage disorder in their child by searching the internet after a long doctor's delay. These cases illustrate the utility of publicly available internet search engines in diagnosing rare disorders and in addition illustrate the lengthy diagnostic odyssey which is common in these disorders.
引用
收藏
页码:642 / U96
页数:3
相关论文
共 14 条
[1]   The clinical outcome of Hurler syndrome after stem cell transplantation [J].
Aldenboven, Mieke ;
Boelens, FaapFan ;
de Koning, Tom F. .
BIOLOGY OF BLOOD AND MARROW TRANSPLANTATION, 2008, 14 (05) :485-498
[2]   Agalsidase-beta therapy for advanced Fabry disease - A randomized trial [J].
Banikazemi, Maryam ;
Bultas, Jan ;
Waldek, Stephen ;
Wilcox, William R. ;
Whitley, Chester B. ;
McDonald, Marie ;
Finkel, Richard ;
Packman, Seymour ;
Bichet, Daniel G. ;
Warnock, David G. ;
Desnick, Robert J. .
ANNALS OF INTERNAL MEDICINE, 2007, 146 (02) :77-86
[3]   Risk Factor Analysis of Outcomes after Unrelated Cord Blood Transplantation in Patients with Hurler Syndrome [J].
Boelens, Jaap Jan ;
Rocha, Vanderson ;
Aldenhoven, Mieke ;
Wynn, Robert ;
O'Meara, Anne ;
Michel, Gerard ;
Ionescu, Irina ;
Parikh, Suhag ;
Prasad, Vinod K. ;
Szabolcs, Paul ;
Escolar, Maria ;
Gluckman, Eliane ;
Cavazzana-Calvo, Marina ;
Kurtzberg, Joanne .
BIOLOGY OF BLOOD AND MARROW TRANSPLANTATION, 2009, 15 (05) :618-625
[4]   ... And a diagnostic test was performed [J].
Greenwald, R .
NEW ENGLAND JOURNAL OF MEDICINE, 2005, 353 (19) :2089-2090
[5]   Patients using the Internet to obtain health information: How this affects the patient-health professional relationship [J].
McMullan, Miriam .
PATIENT EDUCATION AND COUNSELING, 2006, 63 (1-2) :24-28
[6]  
Neufeld EF., 2001, The Metabolic and Molecular Bases of Inherited Disease, P3421, DOI DOI 10.1036/OMMBID.165
[7]  
Ryan A, 2008, EXPERT OPIN DRUG SAF, V7, P227, DOI [10.1517/14740338.7.3.227, 10.1517/14740338.7.3.227 ]
[8]   The Internet as a diagnostic aid: the patients' perspective [J].
Schembri, G. ;
Schober, P. .
INTERNATIONAL JOURNAL OF STD & AIDS, 2009, 20 (04) :231-233
[9]  
Siempos II, 2008, SWISS MED WKLY, V138, P741, DOI 2008/49/smw-12320
[10]  
Smith Peter K, 2006, Int J Adolesc Med Health, V18, P209