Rare Disease Report

IPF Patients Were Happy with Doctor's Method of Diagnosis, but Wanted More

SEPTEMBER 19, 2016
Andrew Black
Although being diagnosed with a rare nonneoplastic pulmonary disease isn’t exactly on the top of the list of news a patient wants to hear, a global survey interviewing idiopathic pulmonary fibrosis (IPF) patients was conducted to learn more on patient reactions to their diagnosis.
 
This survey was based off a 2015 global survey of over 400 pulmonologists.
 
The survey conducted interviewed over 120 IPF patients.  What was found was that 9 out of 10 patients were happy with the way their doctor informed them of their diagnosis.

Wanting more with their diagnosis

Although almost all patients were content with the doctor’s method of sharing the patient’s diagnosis, the surveyed group also revealed there was additional information that would have been helpful to have received at that time:
  • 60% of patients would like to have known what other support was available to help with their IPF
  • 60% wanted to know if IPF requires long-term treatment and how effective those treatments are
  • 50% of patients wanted an insight into the realities of living with IPF over the long term
  • 50% wanted an understanding of how their IPF would progress after treatment initiation, including if they will need to take oxygen 

Top priorities for patients after diagnosed

Physicians and patients were close to being on the same page of the priorities of the patients’ post-diagnosis.
 
The top three priorities for patients were: seeing an IPF specialist (26%), getting information about the disease (21%) and initiation of an effective treatment (18%).
 
The top three priorities physicians believed their patients had were: getting information about the disease (35%), initiating an effective treatment (23%) and seeing an IPF specialist (21%).
 
77% of the patients wanted to know what treatment options were available to them.
 
The survey’s results will now help provide clinicians with a better understand of what more to give their patients when diagnosing them with IPF to increase the overall experience of receiving unpleasant news.
 
A new IPF eBook is available which is a free resource for anyone who wishes to learn more about idiopathic pulmonary fibrosis, learn more about the eBook here.

About idiopathic pulmonary fibrosis

IPF is a disease in which tissue in the lungs becomes thick and stiff, or scarred, over time. Symptoms include breathlessness, chronic cough, chest pain, weight loss and low energy. In most cases, the disease is fatal within 2-3 years of initial symptoms and treatment options are limited.
 
 
 


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