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The patient journey to diagnosis and treatment of autoinflammatory diseases.

Jonathan S HausmannKathleen G LomaxAri ShapiroKaren Durrant
Published in: Orphanet journal of rare diseases (2018)
All families emphasized the need for efficient early diagnosis of AIDs. Initiatives that improve the speed and accuracy of diagnosis, provide more comprehensive patient education, and support patients and families through the illness have the potential to significantly improve the quality of life of patients with AIDs and their families. Healthcare providers should be aware of the impact of the long diagnostic journey on families and work to create an environment of trust and collaboration in the face of a difficult and prolonged diagnostic process.
Keyphrases
  • healthcare
  • case report
  • end stage renal disease
  • ejection fraction
  • quality improvement
  • newly diagnosed
  • antiretroviral therapy
  • health information