Out-of-clinic patient communication in paediatric rheumatology: the extent and nature of demand

Abstract

BackgroundTraditional funding models for public paediatric rheumatology care are typically based on providing medical services for a defined number of clinics per week. Anecdotally there is significant demand by patients and families for out-of-clinic communication with care providers and services provided under traditional funding models may not meet this need. Our aim was to determine the extent and nature of this ‘hidden’ demand in a tertiary paediatric rheumatology centre.MethodsCommunication data and diagnoses were extracted from the Rheumatology service database at our centre for the period 1/1/2009 to 31/12/2011. Clinical activity data over the same time were obtained from hospital clinic databases.ResultsThere were 5672 instances of communication with 749 patients/families over 3 years, (mean 7.3/weekday). This increased over time in parallel with clinical activity. 41% of clinic patients sought communication with the team out of clinic hours. 58% were telephone calls, 36% emails and 6% letters. The communication topics were for advice, results or general updates (28%), medication queries (24%), appointment/admission coordination (20%), disease flare or other disease events (14%), psychosocial, school or transition issues (6%) and miscellaneous queries (8%). Of the most frequent communicators, those with juvenile idiopathic arthritis were the majority (85%). The remainder had other chronic inflammatory conditions.ConclusionsThe communication and support needs of patients with chronic rheumatic diseases and their families extend beyond that which can be provided in the clinic environment. It is essential that funding for paediatric rheumatology services allows for staffing sufficient to meet this need.

Three‐ and five‐year outcomes of an inception cohort of Australian children with juvenile idiopathic arthritis

“…For the current study, data relating to the clinical course of the cohort between 12 months and 5 years of follow‐up was collected. Until February 2016, all data had been captured prospectively in the Rheumatology Department database, a comprehensive clinical tool coded in Microsoft Access™ in which patient demographic details, diagnoses, clinic visits, medications, elective admissions for procedures and communications were recorded, as previously described 5,6 . From March 2016, patient data have been prospectively entered into EPIC™, a commercial electronic medical record deployed at our center on that date.…”

“…Until February 2016, all data had been captured prospectively in the Rheumatology Department database, a comprehensive clinical tool coded in Microsoft Access™ in which patient demographic details, diagnoses, clinic visits, medications, elective admissions for procedures and communications were recorded, as previously described. 5,6 From March 2016, patient data have been prospectively entered into EPIC™, a commercial electronic medical record deployed at our center on that date. Data were collected for visits at 1-, 3-, and 5-year timepoints from the date of JIA diagnosis plus or minus 3 months.…”