Information about the extent and nature of demand for support from health care providers outside the clinic setting is important for informing the development of public health services that meet the needs of patients with chronic illness such as JIA. This study is the first to look at the demand for out-of-clinic support in patients with paediatric rheumatic diseases using data prospectively collected over a prolonged period. We found that there was substantial demand by patients and families for communication with our paediatric rheumatology nurse and co-ordinator out of clinic hours, with an average of 7.3 instances of communication per weekday. This is comparable with use of a telephone helpline for a tertiary referral paediatric rheumatology service in the United Kingdom, where an average of 5.5 calls were received per working day over a one month period, but less than the median of 21 incoming calls per day reported at a paediatric neurology unit in Canada [6, 7].
We found that those most frequently seeking support were parents of patients with chronic inflammatory rheumatic diseases, particularly juvenile idiopathic arthritis. Examination of the reasons for communication revealed an important range of concerns, with more than half of communications related to requests for advice about disease management, results, disease status updates, or queries about medication. If left unaddressed until the patients’ next clinic visit, these issues could potentially result in adverse clinical outcomes.
Over the period examined there was a year-on-year increase in out-of-clinic communication with patients and families, which paralleled an increase in the number of patients seen in clinic by our service. The finding that 41% of patients seen in clinic seek support from the service outside of the clinic environment would explain this parallel increase and suggests that an increase in the clinical service provision of a paediatric rheumatology unit must also include a capacity to manage an increase in demand for out-of-clinic support.
Little has been published regarding the demand for out-of-clinic communication with health care providers in paediatric patients with chronic diseases and their families. This despite the fact that access to out-of-clinic communication with the treating clinician has been found to improve parental perceptions of quality of care in the paediatric rheumatology population . Those that have been published show significant demand for telephone support from service providers in the setting of a paediatric neurology service  and from parents of children with congenital anomalies following discharge from hospital . There is more data in adult chronic disease populations where a significant demand for telephone support has been shown [10–12]. Providing telephone support is becoming an integral part of adult rheumatology care in England and Wales . It is valued by patients and enhances clinical service provision .
Lack of recognition of the demand for, and funding to provide, out-of-clinic communication and support, may act as a barrier to the optimal management of children and young people with chronic rheumatic illness. In addition to improving the quality of care, addressing this need may also have cost advantages in reducing the requirement for clinic reviews and unplanned attendances in emergency departments. For adults with chronic obstructive pulmonary disease, access to telephone support has been associated with a reduction in hospital admission [11, 12], and for one adult rheumatology unit, 60% of patients surveyed indicated that they would have attended a healthcare provider had the telephone support not been available . The extent of out-of-clinic communications also reveals a potential unmet demand by patients and families for further education and support. Future research regarding this issue may enhance service provision by informing the development of new models of patient care and support.
This study has several limitations that should be considered when interpreting its results. We did not capture out-of-clinic communications between patients/families and medical staff or members of the multi-disciplinary team other than the nurse and unit co-ordinator, such as social worker, physiotherapist or occupational therapist. The results therefore underestimate the communications with the entire team over the study period. The magnitude of this underestimate, however, is likely to be small as the nurse and co-ordinator are the nominated primary out-of-clinic point of contact with the service for patients and their families. The examination of the reasons for communication with the team included only a sample of all communications recorded. As such there is the possibility that the proportion of communications in each category in the time periods sampled may differ from those across the whole dataset. The month chosen (March) is a ‘typical’ clinical month with no school/university holidays and staff leave rare (just after the long summer break in Australia), therefore we feel any differences are likely to be small. The study did not capture the time spent dealing with patient communications, making it difficult to assess the workload these communications generate. In the study by Fountain-Polley et al. it was estimated that the 5.5 calls per day to their paediatric rheumatology helpline created, on average, 54.4 minutes of work per working day . As telephone contact was the most common mode of communication with our patient group, the effect on the workload for our service may be similar.
This study also has some important strengths. The database used is the sole means of recording patient interactions for the nurse and co-ordinator, which occurs as standard operating procedure. Therefore, information regarding their communication with patients and families is likely to be accurate and complete. Use of the database as standard practice within the service has also allowed us to examine communications over a prolonged period, providing an accurate assessment of the need for this form of support over time.