Understanding the informational needs of patients with IPF and their caregivers: ‘You get diagnosed, and you ask this question right away, what does this mean?’
Deepa Ramadurai,Stephanie Corder,Tara Churney,Bridget A. Graney,Andrea Harshman,Sarah Meadows,Jeffrey J. Swigris +6 more
- Vol. 7, Iss: 1
TLDR
This study provides valuable insight regarding the informational needs of IPF patients and their caregivers and 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 caregiver.Abstract:
Background 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 13 patients with IPF and 4 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 healthcare 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 caregiversread more
Citations
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Journal ArticleDOI
Idiopathic Pulmonary Fibrosis: Best Practice in Monitoring and Managing a Relentless Fibrotic Disease.
Wim A. Wuyts,Marlies S. Wijsenbeek,Benjamin Bondue,Demosthenes Bouros,P. Bresser,Carlos Robalo Cordeiro,Ole Hilberg,Jesper Magnusson,Effrosyni D. Manali,António Morais,Spyridon Papiris,Saher B. Shaker,Marcel Veltkamp,Elisabeth Bendstrup +13 more
TL;DR: Optimal management of IPF requires a multidimensional approach, including both pharmacological therapy to slow decline in lung function and supportive care to preserve patients’ quality of life.
Journal ArticleDOI
The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review.
Joanna Y T Lee,Joanna Y T Lee,Gabriella Tikellis,Gabriella Tikellis,Tamera J. Corte,Tamera J. Corte,Nicole S L Goh,Gregory J. Keir,Lissa Spencer,Lissa Spencer,Debra G. Sandford,Debra G. Sandford,Yet H. Khor,Ian Glaspole,John T. Price,Alison J. Hey-Cunningham,Jamie Maloney,Alan K Y Teoh,Alan K Y Teoh,Alice Watson,Anne E Holland +20 more
TL;DR: The most frequently reported needs were in the domain of information/education, including information on supplemental oxygen, disease progression and prognosis, pharmacological treatments and end-of-life planning, and Psychosocial/emotional needs were frequently reported, including management of anxiety, anger, sadness and fear.
Journal ArticleDOI
What Patients With Idiopathic Pulmonary Fibrosis and Caregivers Want: Filling the Gaps With Patient Reported Outcomes and Experience Measures.
TL;DR: The care pathway from the patients' perspective is summarized, identifying current gaps in care, education, support and communication between patients with idiopathic pulmonary fibrosis, their caregivers and care teams during the patient journey.
Journal ArticleDOI
Gaps in care of patients living with pulmonary fibrosis: a joint patient and expert statement on the results of a Europe-wide survey.
Catharina C. Moor,Marlies S. Wijsenbeek,Elisabetta Balestro,Davide Biondini,Benjamin Bondue,Vincent Cottin,Ron Flewett,Liam Galvin,Steve Jones,Maria Molina-Molina,Lurdes Planas-Cerezales,Antje Prasse,Helmut Prosch,Anne-Marie Russell,Michel Viegas,Guenther Wanke,Wim A. Wuyts,Michael Kreuter,Francesco Bonella +18 more
TL;DR: The aim of this joint expert and patient statement was to highlight the most pressing common unmet needs of patients with PF/IPF, putting forward recommendations to improve the quality of life and health outcomes throughout the patient journey.
Journal ArticleDOI
Understanding the patient's experience of care in idiopathic pulmonary fibrosis.
TL;DR: Assessment of the patient experience of modern IPF care in patients with idiopathic pulmonary fibrosis found that the care may be difficult for patients.
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