Idiopathic pulmonary fibrosis: Educational needs of health-care providers, patients, and caregivers

Abstract

Idiopathic pulmonary fibrosis (IPF) is a progressive disease associated with poor quality of life. Debilitating symptoms and the reality of shortened survival impact patients’ physical and emotional well-being and constrain the lives of patients’ caregivers. This study assessed the informational needs of medical providers who care for patients with IPF, IPF patients themselves, and their caregivers. Tailored surveys were sent electronically to providers, patients with IPF, and caregivers of patients with IPF collected on a rolling basis in March of 2017. Providers answered questions regarding their own informational needs and what information they believed patients needed. Patients and caregivers identified their own informational needs and the perceived needs for each other. About 2636 surveys were sent to providers, including 2041 to physicians, of whom 156 completed it. One hundred sixty patients and 29 caregivers responded to the survey via a link on a website. Eighty-six percent of providers described themselves as physicians who diagnose and treat IPF patients themselves. Providers ranked information on “making the diagnosis of IPF” as their top informational need. Patients and caregivers chose “disease progression/what to expect” as the most important informational need for themselves and for each other. Providers want to make a correct diagnosis when IPF is in the differential diagnosis. Patients and caregivers desire clarity around how IPF will behave over time and what their futures with IPF will look like. Resources for patients and their caregivers should include information on disease natural history in empathically worded, clear, and easily accessible formats.

The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review

“…15 studies used semi-structured and in-depth interviews (43%), 11 administered questionnaires [7,14,17,24,33,[37][38][39][40][41][42], five used focus groups [13,20,21,23,27], three used a combination of methods [26,31,35], and one used narrative data from websites [12]. 23 (65%) studies used a qualitative data analysis method.…”

“…Quantitative methods were used to report findings regarding disease management [7,38,39], patient education and support [17,24], patient expectations of care [41], quality of life [26,38,41] and anxiety [24]. Six studies were conducted using mixed methods [26,31,33,35,37,42]. Meta-analysis was not possible as the number of quantitative studies was small and the data heterogeneous.…”

“…Six studies specifically addressed end-of-life care [3,20,25,32,37,40], reporting supportive care needs in all nine domains, with no evidence that themes differed from the other studies. The need for information on end-of-life planning was also identified by patients and caregivers in six additional studies that addressed more general aspects of treatment (information domain) [15,21,27,29,30,33], suggesting this need is not restricted to those nearing the end-of-life.…”

Educational aspects of rare and orphan lung diseases

“…The highest ranked educational need was on how to reach the diagnosis of IPF. Participants expressed the need for printed or online educational materials, and support staff for educating patients [ 34 ]. In a European-wide survey about gaps in care for pulmonary fibrosis, distributed through the ERN-LUNG network, less than half (39%) of participating healthcare professionals responded that they received education on how to communicate information on diagnosis and treatment plan with their patients [ 35 ].…”

“…Patients with ILD reported different needs than patients with COPD. A survey in the USA found that patients ranked disease progression and what to expect, as well as IPF drug therapy, followed by IPF diagnosis as the main educational needs [ 34 ]. Literature on how to provide information and education to patients with rare lung diseases is scarce.…”