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

ABSTRACT:

Objective

ANCA-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.

Methods

A 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

SUBMITTER: Mooney J 

PROVIDER: S-EPMC6649977 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature