In this blog, the authors discuss the findings from their study, “Using Patient-Reported Outcome Measures to Evaluate Care for Patients with Inflammatory Chronic Rheumatic Disease.” The study addresses the challenges of using Patient-reported outcome measures (PROMs) to evaluate care in chronic conditions and its implications for improving care for chronic patients.
Challenges of using PROMS
Patient-reported outcome measures (PROMs) allow patients to report their health status before and after treatment and can be used to assess the quality of care. A number of countries collect PROMs from those with acute health problems and use this information in routine performance assessments. But, as we explain in a recent article, it is more challenging to use PROMs to assess care for people with chronic conditions.
Three challenges stand out.
- Elective surgery typically involves a single intervention, and it is reasonably straightforward to collect information from patients about their health status before treatment. In contrast, care for people with chronic conditions often involves a succession of interventions. This makes it challenging to define a pre-treatment period and, hence, to assess the impact of each specific intervention on changes in health status.
- People with chronic conditions often have a long treatment history, and this may influence how they respond to their current intervention. The challenge is how to account for this past history.
- For elective surgery, follow-up data are often collected at one or two time points, but for those with chronic conditions, there is no definitive time (other than death) at which treatment can be said to be completed. This challenge requires the collection of follow-up data over a long timeframe.
Patient-reported outcome measures (PROMs) allow patients to report their health status before and after treatment and can be used to assess the quality of care.
PROMs for patients with rheumatic disease in Portugal
We address these challenges in our analysis of care delivered to patients with inflammatory chronic rheumatic disease in Portugal. We assess whether changes in patient’s perception of their health status were related to their biological drug therapy and the Rheumatology centre responsible for their care.
Patients with rheumatic disease in Portugal were invited to complete a PROM called the Health Assessment Questionnaire-Disability Index (HAQ-DI) whenever they started a biological drug therapy and every 3 to 6 months afterwards during ongoing follow-up visits to their Rheumatology centre. The HAQ-DI asked patients to indicate their difficulties in performing activities such as getting out of bed, dressing, washing, eating, walking, and gripping things.
Anonymised information was retrieved from the Portuguese Register of Rheumatic Diseases for 913 patients who received care in 26 Rheumatology centres between 2000 and 2017. Whereas 482 patients were on just a single biological drug therapy throughout the study period, 431 switched drugs, with some doing so up to seven times.
As the figure shows, men and those with better pre-treatment health status tended to report better health status at follow-up. In comparison, patients receiving infliximab or rituximab were more likely to report lower health status than those on etanercept, which was the most common therapy.
We also found that patients in four of the 26 Rheumatology centres reported higher health status than those at other centres, this not being due to the characteristics of the patients accounted for in the regression models. It may be that these centres were more effective than others at prescribing the right biological drug therapy to their patients, organising care, and managing the whole treatment process, including acting within a reasonable time by switching the patient to another biological drug therapy if patients showed a poor response to current therapy.
Care for chronic patients might be improved if healthcare organisations monitor PROMs and engage in performance assessment initiatives on a routine basis.
Findings and Implications
It is important to consider the patient’s perspective in assessing the effectiveness of therapies and the performance of healthcare organisations. These assessments are more challenging when assessing chronic rather than acute conditions because of difficulties establishing baseline health status and accounting for treatment history and because treatment is ongoing. Our study demonstrates that these challenges can be addressed.
Care for chronic patients might be improved if healthcare organisations monitor PROMs and engage in performance assessment initiatives on a routine basis. The analysis could be run every year, and findings published in an annual report, perhaps publicly available, to promote accountability and motivate quality improvement.
Rodrigues, Daniela, Andrew Street, Maria José Santos, Ana Maria Rodrigues, João Marques-Gomes, and Helena Canhão. 2022. ”sing Patient-Reported Outcome Measures to Evaluate Care for Patients With Inflammatory Chronic Rheumatic Disease” Value in Health.