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Quality Measures Used to Assess Care, Improve Outcomes in Children, Adults with Rheumatic Diseases

Mary Beth Nierengarten  |  Issue: March 2017  |  March 20, 2017

dzaky murad/shutterstock.com

dzaky murad/shutterstock.com

WASHINGTON, D.C.—In a session during the 2016 ACR/ARHP Annual Meeting, aptly called Quality Measures and Quality of Care I, a panel of experts presented information on a number of programs underway in rheumatology using quality measures to both assess and improve patient outcomes. Leading off were two presentations on programs using quality measures to improve outcomes for children with rheumatologic diseases, followed by presentations on programs geared toward adult patients.

Juvenile Idiopathic Arthritis

April Bingham, MD, a pediatric rheumatologist and assistant professor at Penn State Children’s Hospital in Hershey, Pa., provided an update on the effectiveness of the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) to improve outcomes of care for children with rheumatic disease.

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Created in 2011, PR-COIN is a multi-center quality improvement learning network that engages patients/families and healthcare providers with the ultimate aim of improving clinical outcomes for children with rheumatic disease, with an initial focus on juvenile idiopathic arthritis (JIA). Centers involved with the network apply proven quality improvement (QI) methodology to conduct QI work and share clinical data on their JIA patients to track performance on process and outcome quality measures.

Currently, 18 centers are involved in the network. As of May 2016, 4,722 patients with JIA were enrolled in the network with more than 28,000 visits recorded in the registry.

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Dr. Bingham presented data showing an improvement in performance quality measures beginning in 2011 by participating member centers. These include improvement in the percentage of patients on disease-modifying anti-rheumatic drugs (DMARDs) who were lab monitored for toxicity (49–78%); improvement in the number of patients who had functional assessments (33–84%); and improvement in the percentage of patients who received medication counseling when starting DMARDs (14–75%).

In addition, participants in PR-COIN have reliably demonstrated high performance on a number of quality measures, including physician global assessment of disease activity, measurement of arthritis-related pain, performance of complete joint counts and tuberculosis screening for patients initiating a biologic agent.

“What is most exciting is that, as a network, PR-COIN has measurably improved Juvenile Arthritis Disease Activity Scores and the percentage of JIA patients with clinical inactive disease,” said Dr. Bingham, adding that “through participation in PR-COIN, pediatric rheumatology care providers are more reliably providing quality care and improving outcomes for children with [JIA].”

JIA & Uveitis

In a second presentation on JIA, Laura Ballenger, MD, pediatric resident at Nationwide Children’s Hospital, Columbus, Ohio, described barriers to uveitis screening for JIA patients for rheumatologists to be aware of to help improve adherence to recommended uveitis screening guidelines.

Data from a quality improvement study she and her colleagues undertook to assess these barriers showed that multiple barriers contribute to patients not receiving adequate uveitis screening. The most common barrier, said Dr. Ballenger, was a systemic problem with the way in which her institution scheduled and obtained eye exams.

Among the problems identified was the lack of documentation in the electronic medical record (EMR) of the patient’s most recent eye exam, the wrong provider identified in the EMR or difficulty in scheduling an appointment.

Along with these systemic problems, other barriers to appropriate screening included lack of parental knowledge of the need for uveitis screening and access to care.

Barriers to appropriate screening included lack of parental knowledge of the need for uveitis screening & access to care.

Dr. Ballenger said the study highlights the need for rheumatologists “to understand the barriers of your population in order to make appropriate interventions.”

One way she and her colleagues have addressed this is to work with their colleagues in ophthalmology to improve their system problems. They also have been working on better communicating the importance of uveitis screening to their patients.

PROMIS Applied to Rheumatology

Two presentations showed the utility and effectiveness of using the Patient Reported Outcome Measurement Information System (PROMIS) in rheumatology. Developed by the National Institutes of Health, PROMIS is used for assessing multidimensional aspects of health for different conditions.

Alyssa Wohlfahrt, BA, project manager, Division of Rheumatology, Brigham and Women’s Hospital, Boston, presented findings of an ongoing, prospective, multi-site, observational study in which she and colleagues evaluated the performance of multiple PROMIS measures in the first 148 patients enrolled in the study.

All patients in the study had active rheumatoid arthritis (RA) that required starting or switching to a new DMARD. Patients in the study completed the PROMIS Global Health v1.1 short form and a number of PROMIS computer adapted tests (CATs).

The study found that many of the PROMIS measures were able to differentiate RA patients from the general population, and all the measures were able to distinguish RA patient groups by level of disease activity. When adjusting for age, sex, race, disease duration and seropositive status, a significant association was seen between patients with higher CDAI categories and higher PROMIS scores of pain, sleep, fatigue and anxiety, as well as lower PROMIS scores of physical and mental health. Both of these associations indicated worse symptoms.

The study also found PROMIS measures improved with starting a new DMARD, according to Ms. Wohlfahrt.

“PROMIS measures may be good instruments to assess patient reported outcomes in both clinical and research settings for rheumatoid arthritis patients,” said Ms. Wohlfahrt, adding that “further research is needed to determine minimally clinically important differences in these measures for RA patients.”

In another presentation on the use of PROMIS measures in rheumatology, Shanthini Kasturi, MD, a rheumatologist at the Hospital for Special Surgery, New York, presented data from a study that assessed the validity and reliability of PROMIS Global 10 for measuring global physical and mental health in adult patients with systemic lupus erythematosus (SLE).

In the study, 204 adults with SLE were recruited from an SLE Center of Excellence to participate in the study. The study cohort was racially, ethnically and socioeconomically diverse, with most patients identifying themselves as nonwhite and over one-quarter identifying themselves as Hispanic or Latino. Over one-third of the patients were covered by Medicaid. All patients completed the PROMIS Global 10, select PROMIS CATs, as well as the SF-36 and LupusQoL-US measures. Kasturi and colleagues then compared the PROMIS Global 10 scores with those obtained from PROMIS CATs and legacy instruments.

According to Dr. Kasturi, the study is the first to show that collecting PROMIS Global 10 information from a large and diverse group of SLE patients is feasible and that the test is valid and reliable when compared with other legacy SLE patient-reported outcome measures.

“This study is an important first step in demonstrating the potential of the PROMIS Global 10 for the routine measurement of patient-centered outcomes in clinical rheumatology,” said Dr. Kasturi, adding that more studies are needed to evaluate the responsiveness of this test to changes in SLE disease activity as well as to its validity for use in other rheumatic diseases.


Mary Beth Nierengarten is a writer, editor and journalist with over 25 years of medical communications experience.

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Filed under:ConditionsMeeting ReportsPediatric ConditionsQuality Assurance/Improvement Tagged with:2016 ACR/ARHP Annual MeetingAmerican College of Rheumatology (ACR)patient carePediatricPractice ManagementQualityRheumatic Diseaserheumatologistrheumatology

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