To our knowledge, this is the first prospective study that investigated the prevalence of behavioural and psychological needs of persons with IPF and their evolution over time up to two years after diagnosis. We identified a need for support regarding health literacy, medication adherence, mental health, and lifestyle behaviours. Below, we discuss our results in light of available evidence and the implications for further research and clinical care.

We are the first to document health literacy in IPF patients. A total of 20.3% of the participants had inadequate health literacy skills, which is higher than the 11.6% prevalence reported in the Belgian national health survey, although a different questionnaire was used [22]. Poor health literacy is associated with poorer knowledge regarding disease and treatment, a poorer adherence, and might result in negative health outcomes and higher health care resource use [23, 24].

Overall, our participants overall had high levels of disease- and treatment-related knowledge, which did not significantly change over time. However, patients with poor levels of knowledge, and low health literacy should be targeted for additional  support.

Second, participants were highly motivated and deemed taking medication important, confirming available evidence [25]. Only 3% of our participants reported having discontinued pirfenidone based on their own initiative, which is slightly lower than other real-world studies, reporting a 5.5–6% discontinuation rate of pirfenidone [26, 27]. However, we detected problems with adherence already early after treatment initiation (19.6% at week six), and nonadherence increased over time (up to 36.4% at year two). Another prospective study reported a prevalence of self-reported nonadherence of 12% at month six [25]. Our findings presumably underestimate the true issue of nonadherence, given that we used self-report, yet self-report questionnaires are an easy-to-use method to detect at least some of the patients who need support [28]. In our study, we noted several barriers that may affect adherence, such as forgetfulness or the presence of side effects, which might form a good basis for tailored adherence interventions.

Third, we showed high numbers of nonadherence to sun protection (especially at the start of treatment, 42.3%), despite its importance in mitigating the phototoxicity side effect of pirfenidone [15]. These numbers are in line with the high numbers (51.4%) observed in a Belgian heart transplant population [29]. More research is needed to understand IPF patients’ barriers to using sun protection to develop supportive interventions.

Fourth, shortly after treatment initiation, 16% and 17.6% of our participants had moderate levels of depression and anxiety, respectively. Over time, we found no significant change in levels of depression, but lower levels of anxiety were reported. These levels were also lower than those described in other papers on IPF (24.3–49.2% for depression), but comparisons should be performed carefully as we used different questionnaires (i.e., the validated GAD7 and PHQ9) [30, 31]. Selection bias or participants discontinuing the study might have influenced our findings. Interestingly, the COVID-19 pandemic did not seem to have inflated anxiety or depression levels. Ample attention to patients’ psychological well-being is needed, given that this might be associated with a poorer HRQoL, respiratory symptoms and nonadherence [32,33,34].

Given that IPF is a chronic disease, attention should also be given to healthy lifestyle behaviours.

A total of 39.4% of our participants had a high BMI reflecting obesity, which is in line with the Belgian population of 65 years or older [35]. Whether BMI is associated with worse outcomes remains the subject of debate, as studies report mixed findings, leaving ample room for further research on IPF patients’ BMI, nutritional status, and dietary habits [36,37,38].

In our study, approximately 30% of participants showed at-risk alcohol use. This is only 7% in the Belgian population, although the CAGE and not the AUDIT-C was used [35]. Alcohol-related research is an underinvestigated field in IPF, which is surprising, given that at-risk drinking might aggravate the hepatoxicity of antifibrotic drugs and is known to negatively impact health in other disease populations.

Half of our study population was classified as being insufficiently physically active, which is not surprising considering the nature of the disease. However, trying to maintain an active lifestyle is important, as physical inactivity is known to be associated with a range of negative outcomes, including mortality and cardiovascular risks [39]. Pulmonary rehabilitation programs for IPF patients do exist and have a positive short-term effect on QoL, fatigue and exercise tolerance [40]. However, referral of all patients to such programs is not part of routine practice and patients might face practical challenges to attend programs (e.g., mobility issues, low self-efficacy). Further research is needed on how physical activity in patients with IPF can be improved should rehabilitation programs not be feasible.

Strengths and limitations

This study was conducted at a large ILD centre of expertise where information sessions and long-term follow-up consultations are implemented. The study provides unique insights; however, there are some limitations to consider.

Firs, we did not measure the prevalence of all potential comorbidities. Because comprehensive evidence on nonmedical needs was limited, we decided to assess those needs in depth only.

Second, we used validated questionnaires when available, yet comparing our findings with other studies should be performed cautiously, given that often different instruments were often used.

Additionally, due to the COVID-19 pandemic, we were not able to conduct all study visits face-to-face. The pandemic might have influenced our observations, yet patients did not indicate specific concerns, and our findings that depression and anxiety decreased over time suggest otherwise.

Selection bias might have occurred. However, the sociodemographic characteristics of our sample are comparable to those reported in other IPF studies. Refusal to participate was mainly due to a lack of time or because participants felt too overwhelmed early after diagnosis. Reasons for study discontinuation were mainly due to death or switching to nintedanib.

Regarding the statistical analysis, we realized that we assessed many variables. Given our study’s exploratory nature, no corrections for multiple testing over all these variables were applied. Therefore, caution is warranted when interpreting a single p value. Additionally, due to the small study sample (especially at visit 5 and visit 6) and the high numbers of missing values, we consider the data sparse, which was challenging for binary and ordinal outcomes but nevertheless has high clinical relevance. When the data were too sparse, no formal comparisons were possible for these outcomes. Note that the longitudinal analyses used all available information, i.e., were not restricted to complete cases. Finally, our study contains descriptive data only and was not designed to predict how patients might evolve based on their initial needs profile, yet this could be an interesting area for further research.

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