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?'

BMJ Open Quality
Deepa RamaduraiJ J Swigris

Abstract

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. 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. 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 careg...Continue Reading

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Citations

Oct 4, 2018·Respirology : Official Journal of the Asian Pacific Society of Respirology·Kimberley BurnettAnne E Holland
Jul 19, 2018·BMJ Open Respiratory Research·Jeffrey J Swigris
Dec 13, 2019·Multidisciplinary Respiratory Medicine·Caitlin QuinnStephenie T Manns
Jul 10, 2020·Respiratory Research·Meena KalluriGiovanni Ferrara
May 1, 2020·European Respiratory Review : an Official Journal of the European Respiratory Society·Joanna Y T LeeAnne E Holland
Mar 26, 2021·Respiratory Research·Tiago M AlfaroCatharina C Moor
Apr 10, 2021·BMJ Supportive & Palliative Care·Meena KalluriCharlotte Pooler
Apr 20, 2021·Journal of Interprofessional Care·Lisa McDermottJanice Richman-Eisenstat
Jul 21, 2021·American Journal of Respiratory and Critical Care Medicine·Kerri I AronsonJeffrey J Swigris
Dec 13, 2019·Respiration; International Review of Thoracic Diseases·Wim A WuytsElisabeth Bendstrup

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Methods Mentioned

BETA
biopsy

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