Lupus Patients and Doctors Can Differ in Disease Evaluation

Ines Martins, PhD avatar

by Ines Martins, PhD |

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lupus and patient evaluations

A recent study conducted by researchers at the Hospital for Special Surgery evaluated the Patient Reported Outcomes Measurement Information System (PROMIS) in lupus patients, concluding that the survey could also be used to assess subjective patient experiences.

Researchers also reported a disconnect between the patient point of view and objective symptoms, emphasizing the need to include patient-reported outcomes into clinical care to guarantee an optimized disease management. The assessment tool, known as PROMIS, was designed to measure patients’ quality of life.

“Accurate measurement of patient-reported outcomes is particularly important in Systemic Lupus Erythematosus (SLE), a heterogeneous disease in which similar symptoms can affect patients in different ways,” Shanthini Kasturi, MD, rheumatology fellow at the Hospital for Special Surgery (HSS) and lead investigator, said in a news release. “PROMIS offers dynamic computer adaptive tests (CATs) to assess the subjective patient experience in a variety of relevant domains.”

PROMIS asks patients for information concerning pain, fatigue, physical function, depression, anxiety, social function and other indicators of well-being. The online survey, coordinated by HSS researchers, used Computerized Adaptive Testing (CAT) — a collaborative methodology — to organize surveys by adapting new questions to the patients’ previous answers. “In order to provide patient-centered care, we need to have an idea of what the patient is really experiencing,” said Dr. Kasturi. “Having additional information about patients’ quality of life will help us to see how well our treatments are working and whether we should be pursuing different treatments. To our knowledge, this is the first study to assess the feasibility and validity of administering PROMIS CATs to adult SLE outpatients.”

Examiners tried to correlate PROMIS CATs with classic patient reported outcome measures, lupus disease activity and organ damage, as well as the trustworthiness of PROMIS surveys. The Lupus Center of Excellence at the Hospital for Special Surgery recruited adult patients to complete the SF-36 and LupusQoL-US, two gold-standard quality of life surveys, and PROMIS CATs to determine how lupus affected patients’ health-related well-being. Disease-related activity, flares and damage were then studied with the SELENA-SLEDAI and SLICC-ACR directories.

The answers found with PROMIS were then compared with similar domains in the conventional questionnaires, as well as with disease activity and damage. Retest consistency was considered in patients who reported stable lupus activity in two surveys taken a week apart. Out of 198 patients, 163 (82%) successfully concluded at least one assignment and 138 patients finished the retest. “The data show that PROMIS CATs can be successfully administered to a diverse group of SLE patients at the point of care or remotely, and are valid, reliable and responsive for many lupus-relevant domains,” Dr. Kasturi said.

The majority of PROMIS domains displayed moderate to solid correlations with parallel domains in the conventional surveys, although social function and fatigue CAT categories led to weak correlations.

Importantly, PROMIS totals did not correlate well with physician’s disease activity or damage measures. As Dr. Kasturi explained: “This disconnect between the subjective patient experience and objective signs and symptoms underscores the need to integrate patient reported outcomes into clinical care to ensure optimal disease management.”

The results of the study, “Feasibility and Validity of Patient Reported Outcome Measurement Information System (PROMIS) in SLE,” were discussed during the American College of Rheumatology/Association of Rheumatology Health Professionals Annual Meeting, Nov. 8th, San Francisco.