Behavioural and psychological patterns of patients with idiopathic pulmonary fibrosis: a prospective study

Anouk Delameillieure, Fabienne Dobbels, Steffen Fieuws, Katleen Leceuvre, Sara Vanderauwera, Wim A Wuyts, Anouk Delameillieure, Fabienne Dobbels, Steffen Fieuws, Katleen Leceuvre, Sara Vanderauwera, Wim A Wuyts

Abstract

Background: Idiopathic pulmonary fibrosis (IPF) is a chronic and progressive lung condition. Currently, care models predominantly focus on acute medical and pharmacological needs. As a step towards holistic care, the aim of this prospective study was to investigate the psychological and behavioural needs of IPF patients treated with pirfenidone from diagnosis until two years of follow-up.

Methods: The following variables were selected from the literature on patients' needs and the COM-B model, a theoretical model explaining behaviour: medication adherence, barriers to adherence, importance and intentions of medication adherence, anxiety, depression, health literacy, knowledge, reported side effects, adherence to sun protection recommendations, alcohol use, physical activity, quality of life and health status. Linear and generalised linear models for longitudinal data were used to evaluate the evolution since treatment initiation.

Results: We included 66 outpatients: 72.7% men, mean age of 70.3 years (range 50-87), predicted mean forced vital capacity of 85.8% (SD 17.4) and predicted mean diffusing capacity for monoxide of 56.9% (SD 15.7). The participants placed considerable importance on following the treatment recommendations. We noticed difficulties regarding health literacy, alcohol use, pirfenidone adherence (decline over time) and adherence to sun protection recommendations (early in follow-up care). There were low levels of physical activity (no effect of time), high body mass indices (decline over time) and moderate levels of depression and anxiety.

Conclusion: When providing care to IPF patients, behavioural issues, health literacy and psychological well-being should be taken into consideration. There is a need to further explore interventions and care models to tackle these difficulties. Trial registration This study was registered in the ClinicalTrials.gov database (identifier NCT03567785) on May 9th, 2018.

Keywords: Behavioural lifestyle; Idiopathic pulmonary fibrosis; Psychological wellbeing.

Conflict of interest statement

All authors report having no conflict of interest related to this study.

© 2022. The Author(s).

Figures

Fig. 1
Fig. 1
Study visits and variables
Fig. 2
Fig. 2
Study Flowchart. ‘Study discontinuation’ refers to the patients who had a data collection point planned but discontinued the study (e.g., deceased, medication switch). ‘No data collection’ refers to the patients who did not have a new data collection point planned and thus ended the study as anticipated (e.g., due to the prospective inclusion and design of the study)

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