Patient
insights
on IPF

Patients diagnosed with idopathic pulmonary fibrosis (IPF) offer tips and advice on managing the disease – from diagnosis, to management options, to living with the condition.

You are not alone.

INTRODUCTION

If you are reading this, you or a loved one may have recently been diagnosed with IPF.

Although IPF is a relatively rare condition, there are still more than 1 million people worldwide living with the disease today.1

The fact that IPF is relatively unheard of makes it all the more frightening and isolating for patients and their loved ones.

IPF is a serious condition, but there are strategies for learning to deal emotionally with the disease, and management options that can help manage its impact – as patients will go on to explain in this booklet.

"I had
absolutely
no idea
what idiopathic
pulmonary
fibrosis was."

FRED, CANADA

Person
Journey to diagnosis

When patients visit their doctor with symptoms of breathlessness and a persistent cough, it can take a while for IPF to be diagnosed.2,3
This is because IPF symptoms can be similar to those of asthma or heart disease. These conditions are usually diagnosed and treated from the outset.3

Since patients can remain physically active for a period of time at the initial onset of IPF, the unseen damage makes it even more difficult to identify.3,4 
 

The uncertain and slow time to diagnosis can be bewildering and frustrating for patients.3,5

Person
“I was doing
a triathlon
and I was slow
at the swim, on the cycle
everyone was overtaking
me and on the run I was
out of breath.”

RON, UK.

Person
“I was doing
a lot of sports.
Bowling, curling, skiing,
golfing, softball.
I noticed I had more
trouble walking and
that I was coughing.”

Robert, Canada.

Person
“There are a
thousand things
that go through your head.”

Bertold, Germany.

DIAGNOSIS: "it is ipf"
Person
“I guess the main feeling
you have when you’re
diagnosed is that it’s
spectacularly
unfair.”

Tony, UK.

Person
“My tip to anyone
that’s been diagnosed
with IPF is to
find a support
group;

find like-minded people
to talk to.”

Ron, UK.

Person
“The most important thing,
in my experience, is
go to a lung
disease centre

as soon as possible,
where doctors will be
able to help you.”

Daniela, Italy.

A diagnosis of IPF can leave patients and their loved ones feeling isolated by this irreversible condition.5

It is recommended that patients learn as much as they can about the disease from websites such as fightIPF.ca, so they are able to discuss management options with their respiratory specialist and other healthcare professionals caring for them.

Patients should share their concerns and knowledge about IPF so that  friends and family are aware of the changes they will go through and are able to provide them with the right kind of support.

Joining online support groups can also help the patient share experiences and feel less alone (see 'Key Links' below).

Management options - the right approach for you

The doctor will discuss with patients the various management options available – ranging from pulmonary rehabilitation, to medication, to lung transplant.6

He or she will then help the patient decide which option suits them best.

Fully understanding information about therapy choices is important  so it is recommended that patients take a friend or family member  along to hospital visits, to assist them  to accurately recall and understand  the information their doctor or nurse has given them, so that they can  make an informed decision about  their options.

Friends and family can help to encourage the patient to stay positive and follow the advice given by their healthcare team to manage their condition.

Person
"Patients should have
some say in what’s
right for them
because there are
different options
on the market.”

Ron, UK.

Person
“Consult the
doctor together
with your
partner…

My wife always pays
attention – makes sure
I’ve understood
everything correctly.”

Bertold, Germany.

Person
“For the families, it’s
important to stay positive;
encourage the patient to
keep up their
therapies,
so they
can lead a normal life.”

Claude, France.

LIVING WITH IPF
Person
“It’s important to see people, to go out…
to continue
doing what
I do now…
for as long as possible.”

Claude, France

Person
“I think the support
that comes from
family and
friends

is critical.”

Jackie, UK (carergiver)

Person
“The therapy is
allowing me to
achieve my
goals in life.”

Ron, UK.

It is normal for patients to go through a rollercoaster of emotions immediately after diagnosis – worry, anxiety, relief, apprehension, readjustment.

As IPF spreads, many day-to-day activities will become harder.3 By educating themselves about their condition and management options, patients can confidently discuss with their doctor the approach that may help them maintain their independence and stay active longer. It also helps them to make plans for the future and embrace the support of loved ones.

 

References

  1. Nalysnyk L et al. Eur Respir Rev 2012; 21: 355–361. doi: 10.1183/09059180.00002512.
  2. Russell A-M et al. BMC Pulm Med 2016; 16: 10. doi: 10.1186/s12890-016-0171-y.
  3. Duck A et al. J Adv Nurs 2014; 71(5): 1055–1065. doi: 10.1111/jan.12587.
  4. Swigris JJ et al. Health Qual Life Outcomes 2005; 3: 61; 1–9. doi:10.1186/1477-7525-3-61.
  5. Roche data on file. Ethnographic Analysis – Wave 1. August 2015.
  6. Raghu G et al. Am J Respir Crit Care Med 2015; 192: e3–e19. doi:10.1164/rccm.201506-1063ST.