Insight from 'carers' bolsters patient-reported outcomes in RA
Individuals who provide personal support for patients with rheumatoid arthritis can provide physicians with valuable insight into their physical and emotional states, according to findings published in the International Journal of Rheumatic Diseases.
“Patientreported outcomes (PROs) are at the core of assessing RA treatment response,” Kevin Pile, MBChB, MD, FRACP, of Western Sydney University, in Australia, and colleagues wrote. “However, PROs have several limitations. To obtain accurate data, patients must be willing to provide information, and this may be influenced by factors such as the length of the questionnaire, patients’ perception of usefulness, and anxiety about use of the information provided to limit services.”
“For patients with RA, carers may be key to addressing some of these limitations,” they added. “As firsthand observers, carers may provide rheumatologists with a more complete picture of the patient's physical and emotional status. They may also help patients understand and adhere to their treatments, keep track of their appointments, follow nutritional guidelines and manage other aspects of life. The role of carers is complex, and involves providing physical, emotional and financial support. However, studies evaluating their role in RA are scarce.”
To better understand the role and potential impact of these support individuals in managing RA, Pile and colleagues conducted a multinational, multi-stakeholder study of rheumatologists, patients and “carers” in Australia, China and Japan. In the first phase of the study, researchers conducted qualitative, semistructured, facetoface interviews with 30 stakeholders. These included 10 rheumatologists, 10 patients and 10 support individuals, of whom 12 were from Australia, 12 hailed from China and 6 were from Japan. Each interview was conducted by a different interviewer.
Results from these interviews were then used to inform the development of a subsequent quantitative validation survey. This online survey included three separate questionnaires designed specifically for rheumatologists, patients and support individuals, and were available in English, Japanese and simplified Chinese. In all, 131 rheumatologists, 382 patients and 395 support individuals participated. In the survey, supporters were asked to describe the current RA condition of the patient they were caring for. Later, the researchers compared these responses to the same questions from patients and rheumatologists.
According to the researchers, patients in the face-to-face interviews typically understated the amount of physical support required, compared with those who provided that support. Rheumatologists similarly underestimated the amount of physical and emotional care required, compared to both supporters and patients, in face-to-face interviews. However, in the second, quantitative phase, rheumatologists overestimated the level of care provided by support individuals.
In the quantitative survey, levels of care provided by supporters increased as disease severity increased. The active participation of support individuals in clinical consultations and treatment decisionmaking was seen as important by 55% of all patients and 82% of all supporters. All stakeholders reported that insights from support individuals into the physical and emotional conditions of patients were useful and should be considered in clinical decisionmaking. In addition, more than 95% of rheumatologists reported they had solicited input from a support individual.
“Carers play an important role in RA management by providing physical, emotional and financial support to patients, especially for patients with moderatetosevere disease,” Pile and colleagues wrote. “They may also help to optimize treatment outcomes by reinforcing important information about the disease and treatment, and providing observations that may help rheumatologists in treatment decisionmaking.”