Investigators analyzed 13 component or care model changes during a systematic review of outpatient care programs for patients with idiopathic pulmonary fibrosis (IPF). The research was recently published in Respiratory Research.

The changes were categorized according to the 6 established Chronic Care Model (CCM) elements. The most frequently covered CCM categories were delivery system design (77% of studies) and self-management support (69% of studies). Following these were decision-making support (38%), community linkages and clinical information systems (31% each), and healthcare organization (15%).

The most frequently assessed patient-reported outcome (PRO) was health-related quality of life. Other PROs involved anxiety and/or depression, perceived stress, symptoms, preferred place of death, reported palliative care needs, emotional well-being, and mood. Lastly, caregiver outcomes targeted their quality of life, care burden, perceived stress, well-being, and anxiety and/or depression.

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None of the 13 changes were found to address all 6 CCM elements, 7 had not yet been implemented, and 6 were routinely implemented. Therefore, the authors claimed, “There is a need to develop, evaluate, and implement new models of care for IPF and to comprehensively describe the particular setting and context in order to be able to move clinical care for patients with IPF forward.”

Changes to Healthcare Models for IPF

The 6 implemented changes concentrated on the role and impact of care coordinators, performance improvement initiatives aiming to optimize team-based care, and pharmacological management programs with an emphasis on specialized nursing. They also covered end-of-life issues including advanced care planning, a multidisciplinary collaborative care model to address the palliative care needs of patients and caregivers with an emphasis on patient-centeredness, and implementation of a tool to support care providers in addressing routine palliative care concerns.

The primary emphases of the 7 changes not yet implemented included an eHealth tool, collaboration with experts to address comorbidities such as gastroesophageal reflux disease (GERD), support and advocacy groups for patients with IPF, empowerment of patients to cope with IPF using informational group sessions and mindfulness strategies, and collaboration with experts to address palliative care needs in a community setting.

The 6 implemented changes assessed stakeholder experiences and satisfaction with the changes, process measures, PROs, healthcare utilization, and feasibility outcomes. The 7 nonimplemented changes assessed PROs, feasibility outcomes, safety and/or acceptability outcomes, and clinical outcomes, as well as the experiences and satisfaction of stakeholders regarding the changes.

Systematic Review Process

The authors conducted a systematic review and selected 18 studies out of 4780 references that met the following inclusion criteria: 1) full papers written in Dutch, English, or French, 2) contained original research data, 3) focused on IPF, 4) settings focused on outpatient care for adults with IPF, and 5) described or assessed a change in care. Two researchers independently assessed study quality using the Mixed Methods Appraisal Tool.

Study Limitations

The limitations of this study included the lack of surveillance of IPF programs for unpublished improvements in care, possible change classification errors in the context of CCM elements, reliance on information published in the articles, and exclusion of “grey literature” as well as literature suggesting recommended changes to the content or process of a healthcare program for IPF.


Delameillieure A, Vandekerkhof S, Van Grootven B, Wuyts WA, Dobbels F. Care programs and their components for patients with idiopathic pulmonary fibrosis: a systematic review. Respir Res. 2021;22(1):229. doi:10.1186/s12931-021-01815-8