The Adherence Project
The EU-PFF Adherence Project

In 2022, EU-PFF started to work on a Europe-wide survey on treatment adherence in patients suffering from pulmonary fibrosis. Its primary objective is to assess the extent to which people adhere to their medications and to investigate motivations and patterns of adherence, including identifying factors, which increase the likelihood of missing a dose of medication. Recommendations will be made to improve support and information for patients with the aim of improving adherence within the patient population.

Amongst other things, the findings of this survey will be used to provide the patient community and EU-PFF with the evidence to make recommendations to other stakeholders, in order to improve adherence within the patient population.

The survey was available in English, French, German, Greek, Italian, Polish, Romanian and Spanish languages and run from August 2023 until January 2024. 

About the Project

Aims of the EU-PFF Adherence Project

    1. To assess the extent of suboptimal adherence and to investigate motivations and behavioural patterns of adherence in a European patient sample.
    2. To identify factors increasing the probability of being in the high, medium or low adherence groups
    3. To make recommendations to improve support and information provided to patients with the ultimate aim of improving adherence within the patient population.
    4. To provide insights into regimes where adherence is either optimal or sub-optimal for the purpose of understanding the impact of administration method, frequency or dosage.

The evidence gathered during this study can affect

    • Access: education to clinicians around adherence behaviours and incorporating this into individual treatment plans
    • Education: scientific publications in peer-reviewed journals for researchers
    • Support for patients: Education, information and awareness campaigns
    • Research in pharma: Insights into adherence preferences, behaviours and motivations including modes of administration which can be considered in relation to therapies
    • Policy and policy makers: Information about adherence behaviours in relation to modes of administration and treatments can inform decision-making around new therapies

Survey results were analysed and the study was submitted to the European Respiratory Society (ERS) for presentation to the expert community.

The study was accepted and results were presented at the ERS Congress 2024.

Study overview

From August 2023 to January 2024, an in-depth survey was running to explore the factors influencing antifibrotic medication adherence among progressive pulmonary fibrosis (PF) patients.

We had a total of 293 valid entries with a wide range of country representation.

In detail results will be shared through a publication but here is a glimpse on what the survey portrayed:

Key Findings at a Glance

  • High Adherence Rates:
    • 67% to 97% of PF patients adhered well to prescribed treatment, with 95% remaining consistent in their medication use.
  • Geographical Differences:
    • Adherence varied by country, with the USA, Spain, Finland, and Australia showing more missed doses, while Italy had the highest adherence.
  • Influences on Adherence:
    • Negative: Side effects, forgetfulness, and dissatisfaction with healthcare led to non-adherence.
    • Positive: Support from patient groups and better communication with healthcare providers improved adherence.
  • Need for Psychological Support:
    • Concerns about medication’s impact on quality of life highlight the need for better psychological support for PF patients.
  • Non-Adherence Behaviors:
    • Intentional breaks and hiding non-adherence from doctors were common, showing the complexity of adherence issues.

Conclusion

The PF Patient Adherence Survey has provided critical insights into the adherence behaviors of PF patients worldwide. The findings reveal a pressing need for targeted interventions, especially in countries with higher non-adherence rates. To address the psychological, social, and informational gaps affecting patient behavior, we recommend:

  • Enhanced support systems that cater to the unique needs of PF patients.
  • Improved communication between patients and healthcare providers to build trust and address concerns.
  • Tailored healthcare approaches that consider individual patient circumstances to improve adherence and overall outcomes.
Find here Adherence to Treatment Study poster

The EU-PFF Adherence Project is kindly sponsored by