The nurse's role in addressing unmet treatment and management needs of patients with rheumatoid arthritis: Delphi-based recommendations.

PURPOSE: Evaluate nurse's role in management of patients with rheumatoid arthritis (RA). METHODS: Modified Delphi with two rounds of questionnaires, followed by in-person meeting. International group of 12 nurses experienced with RA patients receiving biologic therapy. FINDINGS: Nurses often spend more time with patients than doctors do. Nurse is in unique position to explore patient needs; educate about treatment, administration, product storage, and self-injection technique; determine readiness for and understanding of treatment; monitor safety and progress; and coordinate care within multidisciplinary setting. CONCLUSIONS: Nurse's role is complex and vitally important to optimal RA patient care. Additional nurse involvement may address unmet needs. IMPLICATIONS FOR NURSING PRACTICE: Rheumatology nurses can address unmet patient needs by expanding current roles and by adopting additional functions.

A biologic pharmacosurveillance program for rheumatoid arthritis: a single-center experience.

We have reviewed the experience in a single center of a biologic register for rheumatoid arthritis patients. Over the past decade, the entry demographics show that we are treating patients at an earlier stage and with slightly less severe disease. Our outcomes measured by the percentage in DAS28 remission are comparable with national databases. We were surprised by the small number who were switched from their first biologic to a second (27 %), but this might reflect the lack of a firm "treat to target" approach. Our use of concomitant methotrexate/leflunomide is less than we would have liked and thought, but our use of concomitant corticosteroids is much less than normally seen. A single-center registry can provide useful monitoring and quality assurance data and stimulate change.

The Nurse's Role in Addressing Unmet Treatment and Management Needs of Patients With Rheumatoid Arthritis: Delphi-Based Recommendations.

PURPOSE: Evaluate nurse's role in management of patients with rheumatoid arthritis (RA). METHODS: Modified Delphi with two rounds of questionnaires, followed by in-person meeting. International group of 12 nurses experienced with RA patients receiving biologic therapy. FINDINGS: Nurses often spend more time with patients than doctors do. Nurse is in unique position to explore patient needs; educate about treatment, administration, product storage, and self-injection technique; determine readiness for and understanding of treatment; monitor safety and progress; and coordinate care within multidisciplinary setting. CONCLUSIONS: Nurse's role is complex and vitally important to optimal RA patient care. Additional nurse involvement may address unmet needs. IMPLICATIONS FOR NURSING PRACTICE: Rheumatology nurses can address unmet patient needs by expanding current roles and by adopting additional functions.

Evaluation and validation of the patient acceptable symptom state (PASS) in patients with ankylosing spondylitis.

OBJECTIVE: The Patient Acceptable Symptom State (PASS) constitutes an absolute level of patient well-being and represents an ambitious target for disease management. We explored contributors to PASS, validated the PASS concept, and assessed thresholds of self-reported outcomes below which patients considered themselves in PASS. METHODS: Patients with ankylosing spondylitis completed a questionnaire that included self-reported assessments of pain, fatigue, disease activity, function, patient global, quality of life (QOL), and whether they considered their current disease state satisfactory or not. Stepwise logistic regression was used to assess contributors to PASS. PASS was validated by analyzing proportions of patients reporting need for a rheumatologist and who were in current flare. PASS thresholds for self-reported outcomes were estimated using an anchoring method based on the patient's opinion and targeting the 75th percentile of the cumulative distribution. RESULTS: PASS data were available for 291 patients, of whom 169 (58%) were in PASS. Significant contributors were age (Exp[B] 1.05; P = 0.003), patient global disease activity (Exp[B] 0.79; P = 0.008), and function (Bath Ankylosing Spondylitis Functional Index [BASFI]; Exp[B] 0.72; P < 0.001). PASS reflected need to consult the rheumatologist and current flare (71% and 73% correctly classified, respectively) and significantly contributed to QOL (B = -5.99; 95% confidence interval -7.16, -4.08). PASS thresholds were 5.0 for patient global disease activity, 5.0 for total back pain, 22.8 for fatigue, 4.8 for disease activity (Bath Ankylosing Spondylitis Disease Activity Index), and 4.0 for function (BASFI). CONCLUSION: A majority of patients (58%) reported being in PASS. PASS thresholds for pain and function were unexpectedly high, possibly suggesting adaptation to the consequences of the disease.

Development and validation of a simple tape-based measurement tool for recording cervical rotation in patients with ankylosing spondylitis: comparison with a goniometer-based approach.

OBJECTIVE: To compare a tape-based tool for measuring cervical mobility in patients with ankylosing spondylitis (AS) with the widely practiced goniometer-based approach. METHODS: We developed a novel tape-based approach to measurement of lateral cervical rotation of the neck that is minimally affected by flexion/extension movements of the neck. This requires measurement of the difference between a mark at the suprasternal notch and the tragus of the ear. Rotation score is measured in centimeters and constitutes the difference in length between the 2 extremes of cervical rotation (http://www.arthritisdoctors.org/researcher.html). We assessed the tape-based and goniometer-based methods in a total of 263 patients from 3 countries, Canada (n = 205), Australia (n = 29), and Colombia (n = 29), that included patients from community and tertiary-based practice. Intra- and interobserver reliability was assessed in a subset of 44 patients by ANOVA and a 2-way mixed effects model. The Bath AS Disease Activity (BASDAI) and Function (BASFI) Indices, and the modified Stoke AS Spinal Score (mSASSS), were also recorded to assess construct validity by correlation coefficient and regression analysis. Responsiveness was assessed in a subset of 33 patients that were either randomized to anti-tumor necrosis factor-a therapy:placebo (n = 22) or received open label infliximab (n = 4) or pamidronate (n = 7) over a period of 24 weeks. RESULTS: Scores obtained with the tape-based method were normally distributed, while those obtained using the goniometer were skewed towards normal values. Reliability for the goniometer-based approach was excellent [intraclass correlation coefficient (ICC) > 0.90] and very good for the tape-based approach (ICC > 0.80). Significant correlations were noted between age, disease duration, function and structural damage scores, and scores obtained with both methods. Responsiveness was high using raw scores obtained with the goniometer (standardized response mean > 0.80) but was not evident when the grading scheme proposed for the Bath AS Metrology Index (BASMI) was employed. CONCLUSION: The tape-based approach we describe provides a simple, feasible, and reliable index of cervical rotation that is comparable to the information obtained from the use of a goniometer. If the goniometer-based approach is used, raw scores should be used in the calculation of responsiveness rather than the grading scheme suggested in the BASMI.