Understanding Adult Participant and Parent Empowerment Prior to Evaluation in the Undiagnosed Diseases Network

The burden of living with an undiagnosed condition is high and includes physical and emotional suffering, frustrations, and uncertainty. For patients and families experiencing these stressors, higher levels of empowerment may be associated with better outcomes. Thus, it is important to understand th...

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Detalhes bibliográficos
Publicado no:J Genet Couns
Main Authors: Palmer, Christina G. S., McConkie-Rosell, Allyn, Holm, Ingrid A., LeBlanc, Kimberly, Sinsheimer, Janet S., Briere, Lauren C., Dorrani, Naghmeh, Herzog, Matthew R., Lincoln, Sharyn, Schoch, Kelly, Spillmann, Rebecca C., Brokamp, Elly
Formato: Artigo
Idioma:Inglês
Publicado em: Springer US 2018
Assuntos:
Original Research
Acesso em linha:https://ncbi.nlm.nih.gov/pmc/articles/PMC6132569/
https://ncbi.nlm.nih.gov/pubmed/29497923
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1007/s10897-018-0228-6
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