Aims The pharmacist led children’s warfarin clinic was established in 2012. In its first year it ran twice a week and saw a total of 70 patients. It has subsequently expanded and now manages over 150 patients per year within five telephone clinics per week. Parent/carer feedback was collected following the implementation of the clinic¹ however given its evolution the aim of this survey was to collect further feedback to understand:

• Barriers to contacting clinic

• Barriers to obtaining INR’s prior to appointments

• Experiences using home INR testing

• Thoughts on proposed improvements to clinic

Methods An online survey was developed in conjunction with the Patient Carer and Public Involvement (PCPI) Team with a combination of multiple choice and free text questions and posted to all patients with a 5 week closing date. The letter included a QR code to the survey as well as a direct link. The phone number for the PCPI team was also given for those who wished to complete the survey in another way. Due to low response rate the deadline was extended a further 4 weeks. Parents/carer’s were reminded about the survey during telephone appointments and were offered another copy of the letter by post or email.

Results From 159 families we received 37 responses. 49% reported problems calling clinic at their appointment time and 62% said that when they called they were unable to get through. 92% of respondents had a home testing machine. When those without were asked if they would like a home machine 2 responded yes and 1 did not respond. Users of home testing were asked to describe the advantages. A number of benefits identified were related to reduced trips to hospital for INRs, such as less disruption to schooling and reduced financial pressure from travel costs. Other benefits included instant results and improved tolerability of capillary testing. Five improvements, plus no change, were proposed in the questionnaire and responses categorised as positive, negative or maybe. Positive responses were highest for text message reminders the day before the appointment (74%) and an app (67%). No change scored 54%. The least favoured response was for parent/carers leaving a voicemail with the INR result (27%).

Conclusions The survey confirmed anecdotal experience that there are challenges with the current system however many families were happy to continue without any changes. The qualitative feedback received from families is essential to allow us to evaluate the service and it is hoped responses on home testing will help support funding for expanded access to these. Parent/carer feedback on options to improve the service was heterogeneous which likely represents the diversity of our patient group. While more scoping/patient involvement is required before any change is made the qualitative feedback obtained will be invaluable in driving service improvement. Due to the low response rate there are limitations to this feedback.

Reference

1. Brooks T, Brown J, Woolley E. Children’s warfarin clinic - an audit of the new pharmacist-led telephone service based on a unique computerised system compared to the ward based paper system. Archives of Disease in Childhood 2016;101:e2.