TABLE 3

A summary of actions proposed by the idiopathic pulmonary fibrosis (IPF) focus groups that could improve communications and, hence, IPF care

Physician−patient communication
 Specialist physicians should:

  •   Always use plain language, and be honest and empathetic

  •   Allow adequate time for questions at the end of the appointment

  •   Ensure there is a follow-up appointment (or telephone/e-mail contact) 1–4 weeks after diagnosis,   when the patient has had time to digest their diagnosis and to formulate questions

  •   Tailor information to the individual; the needs of each IPF patient will be different and will change   over time

  •   Explain all treatment options to a patient, even those that are not an option for them and explain why

  •   Encourage patients to keep a health diary and to report any changes in their health at each   appointment

  •   Arrange a point of contact for the IPF patient, who can be contacted outside of scheduled   appointments

  •   Recommend that the specialist centre provide a list of reliable information sources that the IPF   patient can go to for information

  •   Provide clear guidance on medicines

  •   Acknowledge and address any concerns with treatments that an IPF patient may be prescribed for   comorbidities

  •   Raise the issue of end-of-life planning with their IPF patient when it is a medical imperative or the   patient requests information

  •   Provide prompt access to a team trained in dealing with end-of-life issues

  •   Explain the importance of remaining physically active to maintain health and for lung transplantation   to the patient

Physician−physician communication
 IPF physicians should:

  •   Consider providing IPF patients with printed information (factsheet) that clearly outlines what IPF is   and what treatment a patient is on, so that other HCPs can understand what the condition is

  •   Ensure that the IPF patient's local doctor is kept up to date with all changes in the patient's care

  •   Provide referrals for support services when they are needed (e.g. psychological support, smoking   cessation and nutritional advice)

Patient−patient communication

  •  ILD specialist physicians and centres should routinely signpost patients and carers to local support groups to facilitate peer support

HCP: healthcare professional; ILD: interstitial lung disease.