Who’s who in IPF?

The lowdown

Idiopathic pulmonary fibrosis is a rare condition that causes progressive scarring of the lungs. Over time, the buildup of scar tissue (fibrosis) causes the lungs to become thick and hard, which ultimately results in the lungs losing their elasticity and an irreversible loss of the tissue’s ability to transfer oxygen to the bloodstream. Unfortunately, IPF is a chronic disease that sees lung function progressively declining over time before failing completely.

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written by GKA
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Little is known about what triggers the disease, which is one reasons why healthcare market research is so important in this area. However, a number of factors have been suggested as potential triggers including smoking, viral infections such as Hepatitis C or the Epstein-Barr virus, breathing in wood and/or metal dust and gastro-oesophageal reflux disease (GORD), a condition where the acid from the stomach rises back into the throat and is accidentally inhaled into the lungs. There is also some evidence that IPF can be genetic.

Around 6000 people are diagnosed with IPF in the UK every year  and although it affects people of all ages, 85% of sufferers are over the age of 70. It is also more common in men.

Symptoms

One of the most common symptoms of idiopathic pulmonary fibrosis is shortness of breath which gradually worsens over time. Many people suffering from IPF feel breathless from simple everyday activities such as walking, although many ignore their breathlessness at first, putting it down to getting old or being out of shape. Eventually though, even light activity such as getting dressed can be difficult. Other symptoms include a persistent dry cough, fatigue and weakness, a feeling of discomfort in the chest, loss of appetite and rapid weight loss as well as rounded and swollen fingertips or clubbed fingers.

Treatment

Whilst there’s currently no cure for IPF, there are several treatment options available that can help to relieve symptoms and slow down the progression of the disease. These include self-care measures such as stopping smoking and exercising regularly, taking medication to reduce the rate at which scarring worsens, breathing oxygen through a mask and pulmonary rehabilitation exercises to help sufferers breath more easily. In extreme cases, a lung transplant might be the only option, however donor lungs are very rare.

Medical market research

Some patients may take steroid tablets called prednisone to help to ease breathing, and there is also evidence that combining a corticosteroid such as prednisone with an antioxidant such as N-acetylcysteine can slow the progression of IPF in the short-term – although its long-term effectiveness is uncertain. More commonly, patients tend to take medications such as sildenafil, which eases symptoms of breathlessness, and pirfenidone or nintedanib to reduce the rate that the scar tissue hardens.

Who treats it?

The specialist treatment for patients with IPF spans a multidisciplinary team of doctors, nurses and other specialists who all work together to help manage the emotional and physical aspects of living with IPF. This team includes but is not limited to:

Pulmonologists

Pulmonologists specialise in the diagnosis and treatment of diseases and conditions of the lungs and respiratory system. These specialists will examine IPF patients regularly and develop an individual treatment plan to optimise the patient’s health and wellbeing as well as overseeing the care provided by the other team members and putting patients in touch with specialist research centres. At GKA, our expert panel has over 250 respiratory specialists.

Specialist nurses

Specialist pulmonary nurses will provide follow-up and day-to-day care as well as being patients’ main point of contact if they have any questions about symptoms, medications and side effects. There are more than 250 specialist respiratory nurses on our expert panel.

Gastroenterologists

A gastroenterologist is a physician with dedicated training and unique experience of diseases in the gastrointestinal tract and liver. Because of the high incidence of gastroesophageal reflux (GERD) in patients, these specialists help IPF sufferers to manage and treat symptoms. At GKA we have access to over 350 gastroenterologists.

Transplant surgeons

If patients with IPF continue to get worse despite maximum treatment, single or double lung transplantation might be considered in severe cases. Transplant surgeons are specialist surgeons who work closely with the whole transplant team to oversee the entire transplant process, and are also responsible for identifying and treating any complications that may arise as well as any necessary follow-up care.

Palliative care support

If patients are told there is nothing more that can be done to treat their IPF or if they decide to decline treatment, a palliative care team consisting of physicians, pharmacists nurses, social workers, psychologists and other healthcare professionals will work together to provide support, relieve symptoms and establish a clear plan based on the patient’s wishes. Our panel includes 112 palliative medicine experts.

Our experience

At GKA we have conducted 15 projects on IPF in recent years with both patients and HCPs. Examples of these projects include:

  • Online and face-to-face central location interviews with 40 pulmonologists
  • In-office interviews with a further 20 pulmonologists
  • Telephone interviews with 20 pulmonologists, 10 nurses and five patients
  • CATi interviews with 15 pulmonologists and five nurses
  • In-home interviews across the UK with 10 IPF patients

If you have been asked to carry out a healthcare market research project on IPF and would like to find out more about the type of respondents we can access, why not contact us today.

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