Patient factors associated with waiting time to pediatric rheumatologist consultation for patients with juvenile idiopathic arthritis

Juvenile idiopathic arthritis (JIA) is a chronic inflammatory condition affecting approximately 0.11% of females and 0.07% of males younger than 16 years of age in Canada [1, 2]. Timely diagnosis and treatment of JIA is important to achieve optimal patient outcomes [3]. Wait time (WT) to pediatric rheumatology care for patients with JIA is a nationally endorsed quality measure in Canada, with benchmark times from referral to pediatric rheumatology care of 7 days for systemic JIA (sJIA), and 4 weeks for other JIA categories [4, 5]. The purpose of this study was to measure and evaluate patient factors associated with WTs at a single academic pediatric rheumatology center.

While the median WTs for patients with JIA in this study met the national benchmarks, 38% of patients still experienced longer WTs for appointments indicating additional work needs to be done to improve access to pediatric rheumatology care. WTs did not significantly differ by JIA category or distance to the rheumatology center, but older patients waited longer.

Longer waits for older JIA patients were also observed in a French study, as were joint pain and the presence of enthesitis, while abnormal inflammatory markers and joint swelling or limp were associated with shorter WTs [10]. It is possible that younger patients with oligoarthritis present more frequently with knee arthritis and limping, which is readily identified. Older children may also be less likely to bring non-painful swollen joints to the attention of family and healthcare providers.

Interestingly, our study demonstrated similar adherence to WT benchmarks as a UK study of 10 pediatric rheumatology centers measured against the British Society for Paediatric and Adolescent Rheumatology/Arthritis and Musculoskeletal Alliance Standards of Care (BSPAR/ARMA) for JIA, which also set a 4 week benchmark [11]. In that study 60% of JIA cases were seen within the benchmark; however, factors associated with delays were not identified [11]. A 2009 German study of predictors of delayed referral to pediatric rheumatology revealed much longer median WTs to pediatric rheumatologist visit (90 days, range 0–2160 days). The predictors of delayed referral included referrals from orthopedics and greater distance of the patient’s residence to the pediatric rheumatology center [12]. The Research on Arthritis in Canadian Children Emphasizing Outcomes (ReACCh Out) study evaluated factors associated with longer time between symptom onset and the first pediatric rheumatology visit in 319 children enrolled between 2005 and 2007. The median duration between symptom onset to first visit was 115 days (IQR 45, 219) [13], highlighting that there may be delays not under the control of the pediatric rheumatology clinic. Factors associated with shorter duration of time between symptom onset and rheumatology visit included fever, being of South Asian ethnicity, or having a limp, while a history of heel pain or enthesitis was associated with a longer time to assessment. In our study we also considered whether an abnormal CRP would be associated with a shorter WT, as although nonspecific, high CRP can be associated with higher disease activity prompting more urgent assessment, although we did not find an association with WTs.

This study represents the first time that WTs for JIA have been systematically evaluated in our center, and limitations include the use of data from an existing pharmacogenetics study to evaluate WTs, rather than all patients with JIA seen at our center (as this data is not routinely collected), resulting in the possibility of selection bias. Additionally, amongst pharmacogenetics study participants, almost half of referral dates were not available in the chart. However, the JIA category distribution in this study reflects the expected distribution of the JIA population in our center and indeed in Canada. The numbers of patients with some categories of JIA were small, which may have limited our statistical power. For example, WTs in psoriatic JIA and enthesitis-related categories approached statistical significance and it is possible with a larger sample that these may have reached statistical significance. We did not extract data from the patients’ referrals, so the relationship between the factors associated with WTs is based on patient characteristics at the baseline rheumatology visit, rather than at time of referral. We also did not have information about symptom onset, which may be important to measure, as patients may wait a long time before a referral is sent to the pediatric rheumatology center. We also lacked information on parental education and household income which are often important in studies on access to care and a majority of our patients were Caucasian which limited meaningful analysis of wait times by ethnicity.

In conclusion, WTs are important system level measures of quality of care. In future, additional measures including monitoring the number of pediatric rheumatology visits per year (new and follow-up), total number of referrals for JIA, number of pediatric rheumatologists, trainees and other allied healthcare providers may be important to track to better understand factors influencing WT measures. Such measures could be tracked when implementing interventions to decrease WTs and improve care. Although this study shows 62% adherence to national WT benchmarks for time between referral to and assessment by pediatric rheumatology, routine data collection about WTs that includes details about patient diagnosis, information contained within referrals, and symptoms at onset, would help identify and rectify gaps in the timely provision of care. Future work is planned nationally to better track performance measures including WTs in JIA.