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PFF Position Statements Expand to Include Information for Patients
Resources summarize available evidence on aspects of pulmonary fibrosis
As part of its growing resource library for healthcare providers, the Pulmonary Fibrosis Foundation produces position statements that provide clinicians with insights based on currently available evidence . Now, position statements are being developed with both providers and patients in mind .
“As we provide information to clinicians, we want to make sure we also bring those perspectives to patients and their caregivers in appropriate, easy-to-understand language,” said Jessica Shore, PhD, RN, PFF Vice President, Clinical Operations and Quality . “The position statement on genetic testing, published in April 2020, has information for both providers and patients . That’s our model as we move forward . ”
Working groups comprised of physicians, nurses, allied health professionals, and researchers pull together published research and expertise from across the PFF Care Center Network to create the position statements . In addition to helping develop new, separate versions for patients, the PFF Nurse and Allied Health Network aims to expand the clinician versions to incorporate care protocols from across the continuum of providers .
“We’re looking at what information should be included, not just for physicians, but also for nurses, pharmacists, respiratory therapists, and others,” Shore explained . “Our goal is to better understand best practices in care from these different practice perspectives . ”
Two new position statements are currently in development . A statement on rural health will examine ways to improve care of interstitial lung disease patients in sparsely populated areas of the country . A statement on palliative care will clarify the difference between palliative care — managing symptoms and maximizing comfort — and hospice for patients with PF . In parallel with developing position statements, the goal is to publish clinical recommendations for ILD patients in scientific journals . The Surgical Lung Biopsy recommendation was recently published in the ATS Annals .
To determine topics for the next group of position statements, “We’ve polled and surveyed across the CCN to identify needs and gaps,” said Shore . “In creating these statements, we’re really listening to the CCN to learn where we should go next to share best practices and really improve care delivery . ”
READ PFF POSITION STATEMENTS
Visit pulmonaryfibrosis.org/healthproviders to read and download PFF position statements .
NOW AVAILABLE CLINICIAN VERSION
Genetic Testing in PF Surgical Lung Biopsy Stem Cell High-Resolution Computed Tomography
COMING SOON
Rural Health Palliative Care
