Improvements in supportive care and access to more information are needed by juvenile idiopathic arthritis (JIA) patients, based on a survey of a large panel of European patients and their parents.
More emphasis is being put on patients’ opinions and their evaluation of the care they receive so that clinicians can identify areas for improvement and ultimately offer more benefits to patients.
In the study, “Patient’s experiences with the care for juvenile idiopathic arthritis across Europe,” published in the journal Pediatric Rheumatology, researchers surveyed parents of children with JIA to get their point of view regarding the care and treatment their child receives.
The study included 622 JIA parents in 23 countries, mostly European, who were asked to respond to a questionnaire assessing several aspects of JIA care, such as diagnosis; demographics; access to fatigue and pain management; transition to adult care; support groups; participation in research; and information obtained about the disease.
Most of the patients were females (66.7%) and the median age at the completion of the survey was 10 in Western countries and 11 in non-Western countries.
The survey’s results showed that the median time between referral and the first visit to a doctor was 12 days for patients in Western countries and 21 days for patients in non-Western countries. Most patients had been referred to an ophthalmologist at least once, while many had never been referred to an occupational health therapist, social worker, psychologist or orthodontist.
Low rates of referral or access to pain and fatigue management, support groups, counseling and psychological support were also reported in the survey.
Only about 10% of patients said they were aware of transition-of-care clinics.
The majority (82.9%) of patients from Western countries said they were aware of patient support groups, compared with only 22.3% of patients in non-Western counties.
Many patients who took the survey reported not getting enough information regarding financial support (89.7%); research (55.6%); immunizations (43.2%); and contact detail for urgent medical advice (35.9%).
The survey has its limitations, like the fact that the questionnaires only reached patients who had already been part of networks and patient organizations. Therefore, the level of care they received might not be representative of all JIA patients.
Also, the data was not verified and it represents only the respondents’ views.
Still, the team believes “the data provided a unique view on JIA patients’ and their parents’ perspectives regarding the care they receive. Improvements are needed mainly in the areas of supportive care and the accessibility of information to patients.”
The team also emphasized that communication between doctors and patients needs to be improved, and that “physicians can be instrumental in the setting up of support groups.”