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10.1002/mgg3.315 http://scihub22266oqcxt.onion/10.1002/mgg3.315 C5702559!5702559!29178638     free     free     free Deprecated: Implicit conversion from float 211.6 to int loses precision in C:\Inetpub\vhosts\kidney.de\httpdocs\pget.php on line 534 Deprecated: Implicit conversion from float 211.6 to int loses precision in C:\Inetpub\vhosts\kidney.de\httpdocs\pget.php on line 534       Mol+Genet+Genomic+Med 2017 ; 5 (6): 758-73 Nephropedia Template TP {{tp|p=29178638|t=2017. Living with a rare disorder: a systematic review of the qualitative literature |pdf=|usr=}}{{29178638}} gab.com Text Living with a rare disorder: a systematic review of the qualitative literature JO: Mol Genet Genomic Med http://www.kidney.de/pget.php?&tw=1&pmid=29178638 #FOAvip Background: Individuals with rare diseases may face challenges that are different from those experienced in more common medical conditions. A wide range of different rare conditions has resulted in a myriad of studies investigating the specificities of the diagnosis in focus. The shared psychological experiences of individuals with a rare condition, however, have not been reviewed systematically. Methods: We performed a systematic review, including qualitative studies on adults, published between 2000 and 2016. Papers including more than one rare genetic or nongenetic diagnosis were included. Studies based on single diagnoses were excluded except for four specific conditions: hemophilia (bleeding disorder), phenylketonuria (metabolic disorder), Fabry disease (lysosomal storage disorder), and epidermolysis bullosa (skin disorder). Results: The review identified 21 studies. Findings were synthesized and categorized according to three main themes: (1) Consequences of living with a rare disorder, (2) Social aspects of living with a rare disorder, and (3) Experiences with the health care system. Findings point to several unique challenges, such as the psychological, medical, and social consequences of a lack of knowledge about the condition in health care and social settings. Conclusion: The findings highlight the need for more research on the shared psychological and social impact of living with a rare diagnosis across conditions, in order to identify risk factors and inform clinical practice. Twit Text FOAVip Living with a rare disorder: a systematic review of the qualitative literature ????Mol Genet Genomic Med http://www.kidney.de/pget.php?&tw=1&pmid=29178638 #FOAvip Twit Text # Free Paper on # # # # # LINK http://www.kidney.de/pget.php?&tw=1&pmid=29178638 #FOAvip English Wikipedia <ref>{{Cite pmid|29178638}}</ref> Living with a rare disorder: a systematic review of the qualitative literature #MMPMID29178638 von der Lippe C; Diesen PS; Feragen KB Mol Genet Genomic Med 2017[Nov]; 5 (6): 758-73 PMID29178638show ga Background: Individuals with rare diseases may face challenges that are different from those experienced in more common medical conditions. A wide range of different rare conditions has resulted in a myriad of studies investigating the specificities of the diagnosis in focus. The shared psychological experiences of individuals with a rare condition, however, have not been reviewed systematically. Methods: We performed a systematic review, including qualitative studies on adults, published between 2000 and 2016. Papers including more than one rare genetic or nongenetic diagnosis were included. Studies based on single diagnoses were excluded except for four specific conditions: hemophilia (bleeding disorder), phenylketonuria (metabolic disorder), Fabry disease (lysosomal storage disorder), and epidermolysis bullosa (skin disorder). Results: The review identified 21 studies. Findings were synthesized and categorized according to three main themes: (1) Consequences of living with a rare disorder, (2) Social aspects of living with a rare disorder, and (3) Experiences with the health care system. Findings point to several unique challenges, such as the psychological, medical, and social consequences of a lack of knowledge about the condition in health care and social settings. Conclusion: The findings highlight the need for more research on the shared psychological and social impact of living with a rare diagnosis across conditions, in order to identify risk factors and inform clinical practice. äLiving with a rare disorder: a systematic review of the qualitative li(epmc).pdf DeepDyve Pubget Overpricing