Patients with lupus found the Patient Reported Outcomes Measurement Information System (PROMIS) assessment tool to be relevant, valuable, and useful in improving clinical care, according to a new study.
Results from the study, which was conducted at the Hospital for Special Surgery (HSS) in New York, was presented at the American College of Rheumatology/Association of Rheumatology Health Professionals annual meeting on Nov. 6 in San Diego, California.
PROMIS is a questionnaire that evaluates the impact of lupus on patients’ quality of life by taking into account their physical, psychological, and social well-being. The tool is then able to impart information about a personalized patient experience.
“The measurement of patient-reported outcomes is a priority to achieve patient-centered high value care. This is particularly applicable to chronic systemic diseases such as lupus, which can have a significant ongoing impact on quality of life,” Lisa Mandl, MD, MPH, and a rheumatologist at HSS, said in a press release. “The PROMIS tool provides additional information on what the patient is experiencing.”
The study was conducted by recruiting patients from HSS’ Lupus and APS Center of Excellence. After completing the PROMIS questionnaire, patients were divided into two groups based on gender. Women participated in focus groups while men had structured interviews regarding PROMIS.
Participants evaluated the relevance of PROMIS questions, the tool’s value in routine care, and areas that were missing that might be important.
Results from the focus group and interviews showed that patients felt that PROMIS assessments were reflective of their experience with lupus. Important areas that were highlighted included pain interference, sleep disturbance, physical function, and cognitive abilities for women, and fatigue, anxiety, sleep disturbance, pain interference, and pain behavior for men.
Mandl noted that the patients were “enthusiastic about using PROMIS in their medical care, citing its utility in validating their experience, tracking symptoms and disease progression, facilitating communication with providers, and guiding treatment plans.”
The patients also conveyed the significance of the doctor’s role in a PROMIS evaluation. “They also thought it was important for doctors to review patients’ PROMIS answers with them,” Mandl said.
Regarding issues not addressed in PROMIS, women indicated that PROMIS should also include areas of body image, intimate relationships, pregnancy, and relationships with providers. Male patients suggested that there should be a greater emphasis on mental health in the PROMIS tool.
While this tool is promising, Mandl and colleagues said further studies are still needed to determine the most effective ways to add PROMIS to routine care.
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