Banner: Life with IPF

How does it feel to live with IPF?

IPF affects approximately 3 million people worldwide,1,2 yet the reality of living with this condition remains little understood. To address this lack of understanding an online poll was launched during IPF World Week 2015, titled ‘When I think of IPF, I think of…’.

The results of the ‘When I think of IPF, I think of…’ poll have been launched to coincide with Rare Disease Day 2016 and reflect the experiences and emotions of over 500 people affected by IPF, including patients, caregivers and patient advocacy group representatives.3

 

Infographic

Infographic: When I think of IPF, I think of…

Feelings at diagnosis

  

Learning that you are suffering from a serious lung disease like IPF can be devastating and the results of this global poll demonstrate the emotional turmoil that a diagnosis of IPF can cause.

Almost half (49%) of respondents felt ‘worried’, 45% were ‘afraid’, and 34% said they were ‘confused’ when diagnosed with IPF.3

When I think of IPF, I think of…

When asked ‘What do you think of when you think of IPF?’ the most frequent response was ‘breathlessness’ (33%),3 one of the most common symptoms of IPF.4 However 20% also thought of ‘hope for the future through new and effective treatments’.3

  

Hardest part of living with IPF…

  

IPF takes a significant toll on patients’ lives and almost a quarter (23%) of respondents stated ‘not being able to do the things they used to do before having IPF’ as the hardest part of living with the condition.3

18% of respondents said that it was hard ‘knowing that IPF is a fatal disease that has no cure’.3

Emotions felt living with IPF

When asked to describe their feelings towards living with IPF in one word, nearly a third of respondents said they felt ‘determined’ (31%), a similar number (29%) said they felt ‘frustrated’ and 26% said that they felt ‘tired’, indicating that living with IPF can cause a range of different emotions.3

  

The role of patient groups

Coping with a diagnosis of IPF can be physically and emotionally exhausting.5 Participating in a patient group or support group offers an opportunity to get together and connect with others who are facing similar experiences and may help people affected by IPF to better manage the challenges of living with their condition.6

The important role of IPF patient groups was reflected in the poll, with 42% of respondents saying that patient groups 'made them feel less isolated and provided access to important information'.3

Plans for the future

  

Living with a progressive condition like IPF is not easy.5 However, looking to the future and making plans is essential to stay motivated and to keep a positive attitude when dealing with this disease.6

When asked about their plans over the next year many of those polled expressed a positive view; 39% said they would ‘enjoy time with family’ and 21% said they ‘would like to travel or go on holiday’.3

References

  1. Nalysnyk L., et al. Incidence and prevalence of idiopathic pulmonary fibrosis: review of the literature. Eur Respir Rev Off J Eur Respir Soc 2012;21:355–361.
  2. Data on file. Boehringer Ingelheim. Worldwide prevalence. 2016.
  3. Data on file. Boehringer Ingelheim International GmbH. ‘When I think of IPF, I think of...’ Patient Poll. 2015.
  4. Pulmonary Fibrosis Foundation. Symptoms. Available at: http://www.pulmonaryfibrosis.org/life-with-pf/about-pf. Accessed [February 29, 2016]
  5. Russell A-M., et al. Qualitative European survey of patients with idiopathic pulmonary fibrosis: patients’ perspectives of the disease and treatment. BMC Pulm Med 2016;16:10.
  6. Pulmonary Fibrosis Foundation. Pulmonary Fibrosis Patient Information Guide. Available at: http://www.pulmonaryfibrosis.org/docs/default-source/patient-information-guides/pff_patinfoguide_v0215.pdf?sfvrsn=0. Accessed [February 29, 2016]    

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