Chronic Multiorgan Rare Disease: The Role of the Nurse Practitioner as a Leader of the Healthcare Team.

Value in healthcare must focus on accessibility, quality, and affordability. This article describes how a healthcare team provides value by meeting the needs of a rare disease patient and underscores the importance of a chronic multiorgan rare disease home. A nurse practitioner can ensure that barriers to evaluation are removed and communication is prioritized in order to provide accessible and affordable care to a patient with rare disease without jeopardizing quality of care.

[1]  Jessica Ziemek,et al.  The relationship between skin symptoms and the scleroderma modification of the health assessment questionnaire, the modified Rodnan skin score, and skin pathology in patients with systemic sclerosis. , 2016, Rheumatology.

[2]  P. Emery,et al.  Ultrasound findings predict progression to inflammatory arthritis in anti-CCP antibody-positive patients without clinical synovitis , 2016, Annals of the rheumatic diseases.

[3]  K. Yanaba Strategy for treatment of fibrosis in systemic sclerosis: Present and future , 2016, The Journal of dermatology.

[4]  J. Kutzleb,et al.  Nurse Practitioner Care Model: Meeting the Health Care Challenges With a Collaborative Team. , 2015, Nursing Economic.

[5]  Ann-Marie Rosland,et al.  The association among medical home readiness, quality, and care of vulnerable patients. , 2015, American Journal of Managed Care.

[6]  S. Chatterjee,et al.  Evaluation and management of gastrointestinal manifestations in scleroderma , 2014, Current opinion in rheumatology.

[7]  U. Müller-Ladner,et al.  Preliminary analysis of the Very Early Diagnosis of Systemic Sclerosis (VEDOSS) EUSTAR multicentre study: evidence for puffy fingers as a pivotal sign for suspicion of systemic sclerosis , 2013, Annals of the rheumatic diseases.

[8]  M. Mayes,et al.  An American College of Rheumatology/European League Against Rheumatism Collaborative Initiative , 2013 .

[9]  Ami A. Shah,et al.  Treatment of early diffuse systemic sclerosis skin disease. , 2013, Clinical and experimental rheumatology.

[10]  R. Steele,et al.  New directions for patient-centred care in scleroderma: the Scleroderma Patient-centred Intervention Network (SPIN). , 2012, Clinical and experimental rheumatology.

[11]  V. Steen,et al.  Comparison of indirect immunofluorescence and multiplex antinuclear antibody screening in systemic sclerosis , 2011, Clinical Rheumatology.

[12]  M. Porter A strategy for health care reform--toward a value-based system. , 2009, The New England journal of medicine.

[13]  J. Sibilia,et al.  Incidence and prevalence of systemic sclerosis: a systematic literature review. , 2008, Seminars in arthritis and rheumatism.