Electronically monitored medication adherence in idiopathic pulmonary fibrosis: prevalence, predictors and outcomes.

Medication adherence studies in idiopathic pulmonary fibrosis (IPF) are limited, use cross-sectional designs and report discontinuation rates. We prospectively investigated adherence to pirfenidone in IPF patients using electronic monitoring, which provides insights on whether and when the medication was taken on a day-by-day basis. We investigated the impact of nonadherence on lung function and selected predictors for nonadherence based on the COM-B behavioural model. The longitudinal statistical analyses included generalised estimation equations and linear mixed effects models. 55 patients initiating pirfenidone were followed-up for 2 years after diagnosis (76.4% men, mean age 71.1 years (range 50-87 years), mean forced vital capacity (FVC) 88% predicted (sd 18.3), mean diffusing capacity of the lung for carbon monoxide (D LCO) 58.1% predicted (sd 14.7)). Our data showed an association (p=0.03) between the proportion of days with three pirfenidone intakes (i.e. dosing adherence) and FVC % predicted, whereby a high dosing adherence seemed necessary to maintain stable or improving FVC % predicted values. 58.2% of the participants were able to implement at least 90% correct dosing days, yet adherence significantly decreased over time. Too short dosing intervals had negative effects on lung function outcomes. Knowledge on IPF and self-reported adherence were significantly associated with electronically measured adherence. In conclusion, nonadherence is prevalent and might negatively affect lung function. Further research is needed on the impact of nonadherence on outcomes and its predictors, so that tailored interventions can be developed. Meanwhile, a self-report questionnaire could be used to identify adherence issues and teams should equip patients with knowledge about their treatment and how to take it.

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

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.

Care programs and their components for patients with idiopathic pulmonary fibrosis: a systematic review.

BACKGROUND: The multidimensional and complex care needs of patients with idiopathic pulmonary fibrosis (IPF) call for appropriate care models. This systematic review aimed to identify care models or components thereof that have been developed for patients with IPF in the outpatient clinical care, to describe their characteristics from the perspective of chronic integrated care and to describe their outcomes. METHODS: A systematic review was conducted using state-of-the-art methodology with searches in PubMed/Medline, Embase, CINAHL and Web Of Science. Researchers independently selected studies and collected data, which were described according to the Chronic Care Model (CCM). RESULTS: Eighteen articles were included describing 13 new care models or components. The most commonly described CCM elements were 'delivery system design' (77%) and 'self-management support' (69%), with emphasis on team-based and multidisciplinary care provision and education. The most frequently described outcome was health-related quality of life. CONCLUSIONS: Given the high need for integrated care and the scarcity and heterogeneity of data, developing, evaluating and implementing new models of care for patients with IPF and the comprehensive reporting of these endeavours should be a priority for research and clinical care.

Patients' and healthcare professionals' perspectives on the idiopathic pulmonary fibrosis care journey: a qualitative study.

BACKGROUND: Idiopathic pulmonary fibrosis (IPF) highly impacts patients on several life dimensions and challenges healthcare practices in providing high-quality care. Consequently, it is crucial to establish integrated care processes, maximizing patient value and patients' individual needs. The aim of the study was to shed light on the care trajectory based on the perspectives of patients and healthcare professionals. METHODS: The study was conducted at a tertiary Belgian IPF centre of excellence. We conducted individual interviews with patients and healthcare professionals, guided by the Chronic Care Model (CCM) as a framework for integrated care. Thematic analysis was used to underpin data analysis. RESULTS: Experiences were gathered of nine patients with IPF (aged 57-83 years, of which the informal caregivers were present at five interviews) and nine professionals involved in the IPF care trajectory. Our findings identified pitfalls and suggestions for improvement covering all elements of the CCM, primarily at the level of the individual patient and the care team. We covered suggestions to improve the team-based care and pro-active follow-up of patients' needs. Self-management support was highlighted as an important area and we identified possibilities, but also challenges regarding the use of patient-reported outcomes and eHealth-tools. Furthermore, the importance of continuous training for professionals and the implementation of guidelines in routine care was pointed out. Also, participants mentioned an opportunity to collaborate with community-based organizations and raised challenges regarding the overall health system. Lastly, the pertaining lack of IPF awareness and the disease burden on patients and their caregivers were covered. CONCLUSIONS: Our research team has initiated a project aiming to optimize the current care delivery practice for IPF patients at a Belgian centre of excellence. These results will inform the further optimisation of the care program and the development of feasible supportive interventions.

Multidisciplinary Group Education for Gestational Diabetes Mellitus: A Prospective Observational Cohort Study.

The value of diabetes education, focusing on lifestyle measures, in women with gestational diabetes mellitus (GDM) is acknowledged, but requires intensive education and input of resources if done on an individual basis. Group education could be a valuable alternative to individual education. This study aims to investigate the impact of multidisciplinary group education on women's knowledge about GDM, education, treatment satisfaction, and emotional status. Two hundred women with GDM were enrolled in a prospective observational study. Dutch speaking women were offered group education at their first visit after GDM diagnosis. Non-Dutch speaking women or women for whom group education was not possible received individual education. Individual follow-up with a dietitian was planned within two weeks for all women. Women receiving individual education (n = 100) were more often from an ethnic minority background compared to women in group education (n = 100) (32.0% (n = 31) vs. 15.3% (n = 15), p = 0.01). Knowledge about GDM significantly improved after education, with few differences between the two education settings. Both patients in group and individual education were equally satisfied with the content and duration of the initial and follow-up education. Of all group participants, 91.8% (n = 90) were satisfied with group size (on average three participants) and 76.5% (n = 75) found that group education fulfilled their expectations. In conclusion, women diagnosed with GDM were overall satisfied with the education session's content leading to a better understanding of their condition, independent of the education setting. Group education is a valuable alternative to better manage the increasing workload and is perceived as an added value by GDM patients.