Personalised or patient-centered care is characterized by treating the individual and not the disease. During an evening symposium, organised by Boehringer Ingelheim, this concept was discussed by some key opinion leaders in the field of idiopathic pulmonary fibrosis (IPF).
In 2014, two trials which were simultaneously published in the New England Journal of Medicine (NEJM), showed positive results in the treatment of IPF, namely two studies using anti-fibrotic drugs: the ASCEND trial with pirfenidone (King TE Jr, et al. N Engl J Med. 2014;370:2083-92.) and the INPULSIS trial with nintedanib (Richeldi L et al. N Engl J Med. 2014;370:2071-82.)
Personalised (or precision, or stratefied) medicine is an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person. With respect to treating the individual and not the disease, Toby Maher (St. Albans, Hertfordshire, United Kingdom) mentioned three key questions: What is personalised medicine? Is personalised medicine relevant for IPF? And what is needed to achieve personalised care in IPF?
In contrast to cystic fibrosis (CF), where personalised medicine is possible using ivacaftor, such a strategy is not (yet) available for IPF. One explanation is the fact that CF is a monogenetic disease, while IPF has a complex pathogenesis, characterized by a high upregulation of profibrotic markers and downregulation of antifibrotic markers.
The nurses’ challenge
In the next lecture, Geraldine Burge (Solihull, United Kingdom) stated that nurses are central to healthcare provision, and are highly valued by patients, particularly in the specialism of interstitial lung disease (ILD).
Nurses provide information on IPF, patient support and lifestyle advice, and help patients to access medication and manage side effects (Table 1). In the UK, 90% of patients reported that an ILD, a specialist nurse was their main contact for IPF healthcare.
Table 1. Tasks of the medical team and clinical nurse specialist
|Medical team||Clinical nurse specialist|
Complications (e.g. cancer)
|Anchor and point of contact for patients
Patients’ voice at multidisciplinary team (MDT)
End of life management
Communication with domiciliary services
The patient’s voice
Sonye Danoff (Baltimore, United States of America) emphasized that we should make a transition from a disease-centered model, with a focus on pulmonary function tests (PFTs), CT scan and 6-minute walk tests (6MWT), to a patient-centered model of IPF, in which patient reported outcomes are also included.
In the final lecture of this symposium, Harold R. Collard (San Francisco, United States of America) explained his perspective on the future of clinical care and research in IPF. His opinion is that the current state of IPF clinical care is mediocre. We have great difficulty diagnosing IPF and we manage all IPF patients similarly, and cannot stop disease progression. So, we need to think differently and to innovate. With respect to the diagnosis of IPF, Collard stated that the CT criteria for clinical diagnosis of IPF will likely change in the near future. In the future, he supposes that the classification schema for ILDs (and IPF) should be changed, and perhaps the name IPF is no longer appropriate.
Currently, most patients are offered an anti-fibrotic therapy. However, the choice of therapy is unclear and it is unknown when to start and when to stop therapy. The management of IPF will change in the future. Collard expects that a combination of mechanistically targeted therapies is likely the answer to ‘curing’ IPF. More attention needs to be paid to regenerative therapies that can improve lung function. And we need a way to tell if therapies are ‘working’, or not, in an individual patient. According to Collard, using therapies without any efficacy feedback is unacceptable.
Source: Session 479, Industry Evening Symposium, Boehringer Ingelheim. Where do we go from here? Personalised medicine and patientfocused care in IPF. September 5th, 17:15-19:15, Room A.