Impact of caring for someone with a rare rheumatic condition, views from patients and informal carers-the need for cat-like vigilance.

Janice Mooney,Richard A Watts,Karly Graham

doi:10.1093/rap/rkz003

Janice Mooney, Richard A Watts + Show 1 more

Open Access

https://doi.org/10.1093/rap/rkz003

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Abstract

ObjectiveANCA-associated vasculitis (AAV) is a rare multisystem disease. Modern therapeutic protocols have turned AAV from an acute, frequently fatal disease into a chronic disease requiring long-term immunosuppression. Patients must often manage substantial burdens related to chronic illness and treatment-related side effects, requiring help from informal carers. This study aimed to explore the experience of patients and of informal carers of patients with AAV about the impact of managing a rare rheumatic condition. MethodsA qualitative approach using semi-structured interviews was used. Interviews were conducted with a purposeful sample of 18 pairs of patients with AAV and their informal carers. The interviews were used to explore the participants’ experience and effects of caring. The interviews were recorded and transcribed as verbatim text and analysed using the framework technique.ResultsEighteen patients (seven female; disease: 10 granulomatosis with polyangiitis; four microscopic polyangiitis; four eosinophilic granulomatosis with polyangiitis; age range 34–78 years; disease duration 1–20 years). Caregiver and patient perspectives were shared. The emerging themes were the physical and psychological impacts of the disease, the need for constant vigilance and fear of the future.ConclusionBoth patients and carers faced a range of challenges in managing a rare condition, including the seriousness of the illness, dealing with the emotional toll and knowing what to expect. This study offers insight into the experiences of patients and informal carers, and health-care professionals should address individuals’ fears and expectations for recovery.

Highlights

The ANCA-associated vasculitides (AAV) Granulomatosis with Polyangiitis (Wegener’s) (GPA), Eosinophilic Granulomatosis with Polyangiitis (Churg Strauss) (EGPA) and Microscopic Polyangiitis (MPA) are a group of rare, potentially lifethreatening conditions which if untreated can be fatal
The emerging themes were the physical and psychological impact of the disease, the need for constant vigilance and fear of the future. Both patients and carers faced a range of challenges in managing a rare condition, from the seriousness of the illness, dealing with the emotional toll and knowing what to expect
This study offers insight into the experiences of patients and informal carers, and health care professionals should address individuals’ fears and expectations for recovery

Summary

Introduction

The ANCA-associated vasculitides (AAV) Granulomatosis with Polyangiitis (Wegener’s) (GPA), Eosinophilic Granulomatosis with Polyangiitis (Churg Strauss) (EGPA) and Microscopic Polyangiitis (MPA) are a group of rare, potentially lifethreatening conditions which if untreated can be fatal. Modern immunosuppressive therapy, has changed the outlook for patients with AAV from being very poor with a high mortality to a chronic disease associated with a need for long-term treatment [1]. Despite improvements in survival there are significant side-effects of therapy such as increased risk of infection, hypertension, osteoporosis, diabetes associated with steroids, haematological and skin malignancies [2,3,4,5,6,7]. Patients must often manage substantial burdens related to chronic illness and treatment-related side effects [3,8,10]. It is clear that the impact of a diagnosis of AAV is significant and patients need help and support to manage their disease

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