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New research reveals unmet communication needs of IPF patients and carers

Last Update 06/04/2021

A recent study looks at the experiences and unmet needs of people living with interstitial pulmonary fibrosis and their carers


ELF patient representatives and staff were involved in a recent study published in ERJ Open Research, which looked at the experiences and unmet needs of people living with Interstitial Pulmonary Fibrosis (IPF) and their carers.

IPF is a serious, long-term lung condition that causes scarring of the lungs (fibrosis) and usually affects people who are over 50 years old.

During the study, patient organisations and groups in Europe ran four focus groups (in Italy, Belgium, Ireland and England) to hear from people affected by IPF. The researchers collected the experiences and views of participants into three main themes, which they called professional-patient, professional-professional and patient-patient communication. Within the themes, 8 key topics were discussed:

  1. Effective and empathic communication (professional-patient)
  2. Point of contact (professional-patient)
  3. Medication guidance (professional-patient)
  4. Advanced care planning (professional-patient)
  5. Communication between specialist physicians and other healthcare professionals (professional-professional)
  6. Referral to rehabilitation and support services (professional-professional)
  7. Support groups and patient organisations (patient-patient)
  8. Carer and family support (patient-patient)

The paper explains that unmet communication needs could be addressed by physicians and specialist centres, who could provide more effective information and signposting (e.g. to support groups and local patient organisations) so that patients feel supported and know where to go for further advice and information.

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