The care needs of patients with idiopathic pulmonary fibrosis and their carers (CaNoPy): results of a qualitative study

Abstract

BackgroundIdiopathic pulmonary fibrosis (IPF) is a chronic, fibrotic interstitial lung disease of unknown origin. It has a median survival of three years but a wide range in survival rate which is difficult to predict at the time of diagnosis. Specialist guidance promotes a patient centred approach emphasising regular assessment, information giving and supportive care coordinated by a multidisciplinary team (MDT). However understanding of patient and carer experience across the disease trajectory is limited and detailed guidance for MDTs on communication, assessment, and triggers for supportive and palliative interventions is lacking. This study addresses uncertainties relating to care needs of patients and carers at different stages of the IPF disease trajectory.MethodsFollowing ethical approval a multi-centre mixed-methods study recruited participants with IPF at four stages of the disease trajectory. Qualitative analysis was used to analyse 48 semi-structured interviews with patients (27) and paired carers (21).ResultsPatients and carers outlined key elements of MDT activity capable of having significant impact on the care experience. These were structured around:Focus of clinical encountersTimely identification of changes in health status and functional activityUnderstanding of symptoms and medical interventionsCoping strategies and carer roles.ConclusionsPatients diagnosed with IPF have a clear understanding of their prognosis but little understanding of how their disease will progress and how it will be managed. In depth analysis of the experiences of patients and carers offers guidance for refining IPF clinical pathways. This will support patients and carers at key transition points in line with National Institute for Health and Care Excellence (NICE) guidance.Electronic supplementary materialThe online version of this article (doi:10.1186/s12890-015-0145-5) contains supplementary material, which is available to authorized users.

The palliative care needs of patients with idiopathic pulmonary fibrosis: A qualitative study of patients and family caregivers

“…Therefore, they continued to seek specific information about treatment options, symptom management and care at the end-of-life. 27 …”

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“…The lung tissue changes irreversibly, which results in symptoms such as dyspnoea and dry cough, which again affect patients’ everyday life. It has been shown that patients have a clear understanding of their prognosis but lack assistance with understanding how their disease will progress [35]. Exploring the patients’ perspective, Overgaard and colleagues found that the fatality of the disease was overwhelming for patients and, therefore, the dose and timing of information are tricky [36].…”

“…Exploring the patients’ perspective, Overgaard and colleagues found that the fatality of the disease was overwhelming for patients and, therefore, the dose and timing of information are tricky [36]. Sampson and colleagues showed that the patients’ initial relief associated with not being diagnosed with cancer was replaced by shock associated with the prognosis of IPF [35]. Clinical encounters, timely identification of changes in health status and functional activity and understanding of symptoms influence patients’ experiences of care.…”

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“…In assenza di un supporto psicologico e sociale adeguato, le conseguenze si manifestano con un ulteriore peggioramento della qualità di vita, passando attraverso la sfiducia e quindi provocando una ridotta aderenza alle terapie e, successivamente, causando un incremento al ricorso a ricoveri ospedalieri ed accessi al pronto soccorso [73,74]. Si rende pertanto auspicabile e necessaria una migliore comprensione delle aspettative e delle esperienze dei pazienti con IPF e dei loro caregiver, poiché potrebbe contribuire a migliorare la gestione complessiva della malattia, la qualità di vita dei malati, l'aderenza e l'efficacia delle terapie.…”