title: What matters for patients with vasculitis?
abstract: Advances in clinical care for patients with vasculitis have improved survival rates and created new challenges related to the ongoing management of chronic disease. Lack of curative therapies, burden of disease, treatment-related side effects, and fear of relapse contribute to patient-perceived reduction in quality of life. Patient-held beliefs about disease and priorities may differ substantially from the beliefs of their health care providers, and research paradigms are shifting to reflect more emphasis on understanding vasculitis from the patient's perspective. Efforts are ongoing to develop disease outcome measures in vasculitis that better represent the patient experience. Health care providers who care for patients with vasculitis should be sensitive to the substantial burdens of disease commonly experienced by patients living with the disease and should strive to provide comprehensive care directed towards the medical and biopsychological needs of these patients.
authors.affiliation: National Institutes of Health/NIAMS, Vasculitis Translational Research Program, Bethesda, MD 20892, United States.
authors.forename: Elaine
authors.initials: E
authors.lastname: Novakovich
authors.affiliation: National Institutes of Health/NIAMS, Vasculitis Translational Research Program, Bethesda, MD 20892, United States. Electronic address: peter.grayson@nih.gov.
authors.forename: Peter C
authors.initials: PC
authors.lastname: Grayson
mesh_terms: D001294:Attitude to Health; D001688:Biological Products / Q000009:adverse effects / Q000627:therapeutic use; D017281:Cost of Illness; D019468:Disease Management; D005221:Fatigue / Q000209:etiology; D005260:Female; D005817:Genetic Counseling; D005938:Glucocorticoids / Q000009:adverse effects / Q000627:therapeutic use; D006292:Health Priorities; D006301:Health Services Needs and Demand; D006801:Humans; D007166:Immunosuppressive Agents / Q000009:adverse effects / Q000627:therapeutic use; D007247:Infertility, Female / Q000209:etiology; D008297:Male; D055118:Medication Adherence; D010353:Patient Education as Topic; D010361:Patients / Q000523:psychology*; D011247:Pregnancy; D011256:Pregnancy Outcome; D011369:Professional-Patient Relations; D011788:Quality of Life; D016896:Treatment Outcome; D014657:Vasculitis / Q000150:complications / Q000235:genetics / Q000523:psychology* / Q000628:therapy
chemical_list: D001688:Biological Products; D005938:Glucocorticoids; D007166:Immunosuppressive Agents