Assessing disease experience across the life span for individuals with osteogenesis imperfecta: challenges and opportunities for patient-reported outcomes (PROs) measurement: a pilot study

BACKGROUND: Patient reported outcome (PRO) information is crucial for establishing better patient-provider communication, improving shared decision-making between clinicians and patients, assessing patient responses to therapeutic interventions, and increasing satisfaction with care. We used the Bri...

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Опубликовано в: :Orphanet J Rare Dis
Главные авторы: Tosi, Laura L., Floor, Marianne K., Dollar, Christina M., Gillies, Austin P., Hart, Tracy S., Cuthbertson, David D., Sutton, V. Reid, Krischer, Jeffrey P.
Формат: Artigo
Язык:Inglês
Опубликовано: BioMed Central 2019
Предметы:
Research
Online-ссылка:https://ncbi.nlm.nih.gov/pmc/articles/PMC6350324/
https://ncbi.nlm.nih.gov/pubmed/30696467
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-019-1004-x
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