Patient Activation for Self-Management in Patients with Idiopathic Pulmonary Fibrosis or Sarcoidosis

A.E.M. Bloem*, R.L.M. Mostard, N. Stoot, J.W.H. Custers, M. Vooijs, D.J.A. Janssen, A.J. van 't Hul, M.A. Spruit

*Corresponding author for this work

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Background: Self-management is considered important in the management of patients with idiopathic pulmonary fibrosis (IPF) or sarcoidosis. However, data about the degree of activation for self-management is lacking. Objectives: The aim of the study was to determine the degree of activation for self-management in patients with IPF or sarcoidosis using the Patient Activation Measure (PAM) and to evaluate the association between PAM scores, clinical characteristics, and health-related outcomes. Study Design and Methods: This cross-sectional prospective study assessed besides the PAM also demographics, lung function, dyspnea (modified Medical Research Council [mMRC]), fatigue (Checklist Individual Strength-Fatigue [CIS-Fatigue]), anxiety/depression (Hospital Anxiety and Depression Scale [HADS-A/HADS-D]), and generic health status (EuroQol five-dimensional-five-level [EQ-5D-5L]). Results: Mean PAM was 55.0 (9.1) points in patients with IPF (n = 59) and low levels of patient activation for self-management (PAM <= 55.1 points) were present in 56% of the patients. PAM Scores correlated significantly (p < 0.05) with mMRC (rho = -0.476), HADS-A (rho = -0.326), HADS-D (rho = -0.459), and EQ-5D-5L (rho = 0.393). In patients with sarcoidosis (n = 59), the mean PAM score was 55.7 (11.0) points, and 46% of the patients reported low PAM levels. Significant correlations were found with mMRC (rho = -0.356), HADS-A (rho = -0.394), HADS-D (rho = -0.478), and EQ-5D-5L (rho = 0.313). Conclusion: About half of the outpatients with IPF or sarcoidosis have a low degree of activation for self-management, and these patients generally report more dyspnea, anxiety, depression, and a lower health status. Whether patients with a low degree of activation can be successful in self-managing their disease remains to be determined.
Original languageEnglish
Number of pages8
Publication statusE-pub ahead of print - 31 Aug 2021


  • Interstitial lung disease
  • Idiopathic pulmonary disease
  • Sarcoidosis
  • Patient activation measure
  • Self-management

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