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 assessment. But it is more challenging to use PROMs to assess care for people with chronic conditions.

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Three challenges stand out:

1. Elective surgery typically involves a single intervention and it is straightforward to establish baseline health status prior to treatment. In contrast, care for people with chronic conditions often involves a succession of interventions. This makes it challenging to assess the impact of each specific intervention on health status.

2. 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.

3. 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 collection of follow-up data over a long-time frame.

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We address these challenges in our analysis of care delivered to patients with inflammatory chronic rheumatic disease in Portugal. We assess whether change in patient’s perception of their health status is related to their biological drug therapy and the Rheumatology center responsible for their care.

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Patients with rheumatic disease in Portugal are invited to complete a PROM called the Health Assessment Questionnaire-Disability Index (HAQ-DI) whenever they start a biological drug therapy and every 3 to 6 months afterwards during ongoing follow-up visits to their Rheumatology center. The HAQ-DI asks patients to indicate what difficulties they face in performing activities such as getting out of bed, dressing, washing, eating, walking, and gripping things.

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Anonymized information was retrieved from the Portuguese Register of Rheumatic Diseases for 913 patients who received care in 26 Rheumatology centers 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.

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Younger patients, men, and those with better pre-treatment health status tended to report better health status at follow-up, while patients receiving infliximab or rituximab were more likely to report lower health status than those on etanercept, which was the most common therapy.

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We also found that patients in four of the 26 Rheumatology centers reported higher health status than those at other centers, this not being due the characteristics of the patients accounted for in the regression models. It may be that these centers are more effective than others at prescribing the right biological drug therapy to their patients, organizing care, and managing the whole treatment process, including acting within a reasonable time by switching the patient to another biological drug therapy if showing a poor response to current therapy.

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It is important to consider the patient’s perspective in the assessments of the effectiveness of therapies and performance of healthcare organizations. These assessments are more challenging when assessing chronic rather than acute conditions, because of difficulties in establishing baseline health status and accounting for treatment history and because treatment is ongoing. Our study demonstrates that these challenges can be addressed.

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Care for chronic patients might be improved if healthcare organizations 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.

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You can find the original article here

Rodrigues D, Street A, Santos MJ, Rodrigues AM, Marques-GomesJ, Canhão H. Using patient-reported outcome measures to evaluate care forpatients with inflammatory chronic rheumatic disease, Value in Health, 2022. https://doi.org/10.1016/j.jval.2022.05.012