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Understanding the Informational Needs of Idiopathic Pulmonary Fibrosis (IPF) Patients and Their Caregivers: "You Get Diagnosed, and You Ask this Question Right Away, What Does this Mean?"
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A4264 - Understanding the Informational Needs of Idiopathic Pulmonary Fibrosis (IPF) Patients and Their Caregivers: ""You Get Diagnosed, and You Ask this Question Right Away, What Does this Mean?""
Author Block: D. Ramadurai1, S. Corder2, T. Churney3, B. Graney4, A. Harshman2, S. Meadows5, J. Swigris3; 1Internal Medicine, University of Colorado School of Medicine, Aurora, CO, United States, 2Office of Professional Education, National Jewish Health, Denver, CO, United States, 3Interstitial Lung Disease Program, National Jewish Health, Denver, CO, United States, 4Division of Pulmonary Sciences and Critical Care Medicine, University of Colorado Anschutz Medical Campus, Aurora, CO, United States, 5Denver Health, Denver, CO, United States.
Rationale: Idiopathic pulmonary fibrosis (IPF) is a progressive, incurable lung disease whose intrusive symptoms rob patients of their quality of life. Patients with IPF rely on their caregivers for support and assistance in amounts that vary according to patients’ individual circumstances and disease severity. Knowledgeable and well-informed patients and caregivers are best-suited to deal with life-altering conditions like IPF.
Methods: We conducted two hour-long focus groups with thirteen IPF patients and four caregivers of patients with IPF to better understand their informational needs and in what format such information should be delivered.
Results: Patients discussed the challenges IPF creates in their daily lives. They wanted information on how to live well despite having IPF; practical information on how they could remain active and travel; and how they could preserve their quality of life despite living with a life-threatening disease like IPF. Caregivers wanted information on the general aspects of IPF, because it would help them understand what patients were going through. They also wanted specific information on how to give care to a patient with IPF, even when physical care may not be needed (as in earlier phases of the disease). Patients and caregivers both needed efficient information delivery from trustworthy sources, including the health care team involved in their care. They considered both spoken and written information valuable, and ease of access was critical.
Conclusion: This study provides valuable insight regarding the informational needs of IPF patients and their caregivers. It is hoped that identifying or creating sources of this information, and insuring that patients and caregivers have access to it, will improve well-being for patients with IPF and their caregivers.
Author Block: D. Ramadurai1, S. Corder2, T. Churney3, B. Graney4, A. Harshman2, S. Meadows5, J. Swigris3; 1Internal Medicine, University of Colorado School of Medicine, Aurora, CO, United States, 2Office of Professional Education, National Jewish Health, Denver, CO, United States, 3Interstitial Lung Disease Program, National Jewish Health, Denver, CO, United States, 4Division of Pulmonary Sciences and Critical Care Medicine, University of Colorado Anschutz Medical Campus, Aurora, CO, United States, 5Denver Health, Denver, CO, United States.
Rationale: Idiopathic pulmonary fibrosis (IPF) is a progressive, incurable lung disease whose intrusive symptoms rob patients of their quality of life. Patients with IPF rely on their caregivers for support and assistance in amounts that vary according to patients’ individual circumstances and disease severity. Knowledgeable and well-informed patients and caregivers are best-suited to deal with life-altering conditions like IPF.
Methods: We conducted two hour-long focus groups with thirteen IPF patients and four caregivers of patients with IPF to better understand their informational needs and in what format such information should be delivered.
Results: Patients discussed the challenges IPF creates in their daily lives. They wanted information on how to live well despite having IPF; practical information on how they could remain active and travel; and how they could preserve their quality of life despite living with a life-threatening disease like IPF. Caregivers wanted information on the general aspects of IPF, because it would help them understand what patients were going through. They also wanted specific information on how to give care to a patient with IPF, even when physical care may not be needed (as in earlier phases of the disease). Patients and caregivers both needed efficient information delivery from trustworthy sources, including the health care team involved in their care. They considered both spoken and written information valuable, and ease of access was critical.
Conclusion: This study provides valuable insight regarding the informational needs of IPF patients and their caregivers. It is hoped that identifying or creating sources of this information, and insuring that patients and caregivers have access to it, will improve well-being for patients with IPF and their caregivers.
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