Article Text

Download PDFPDF

P06 Development of a hydroxycarbamide telephone clinic for children with sickle cell disease
  1. Alexandra Hollwey
  1. Leeds Teaching Hospital NHS Trust


Aim Develop the hydroxycarbamide prescribing process for sickle cell disease to improve outcomes and patient experience through: implementing electronic prescribing; identifying and addressing non-adherence; optimising doses; improving accessibility of medication and developing a hydroxycarbamide telephone clinic.

Method The clinic was planned to be piloted mid-2020 however due to the COVID pandemic requiring more services to be delivered remotely the timeline was accelerated and all patients switched to telephone reviews in March 2020.

New patients are commenced on hydroxycarbamide at a face-to-face outpatient appointment which includes counselling and consent, review of baseline bloods, introduction to the telephone clinic and medication counselling.

Patients are then eligible for the hydroxycarbamide telephone clinic. Patients attend outpatient phlebotomy for the necessary monitoring blood tests prior to their telephone appointment. At the telephone appointment a virtual review takes place including a review of symptoms, blood results, medication adherence and adverse effects. An 8-12 week supply of hydroxycarbamide is prescribed by a nurse or pharmacist prescriber and sent to the patient’s local pharmacy or home address by the hospital outsourced pharmacy. Follow up appointments are made every 8-12 weeks.

Patients continue to have face to face medical appointments; the interval is determined by individual patient factors but a minimum of annually.

Results In September 2019 (prior to electronic prescribing) an audit of patients who had been on hydroxycarbamide for 9 months or more (n=26) had a mean dose of 21.7mg/kg. A repeat audit in July 2021 showed a mean dose of 26.9mg/kg (n=36).

Electronic prescribing has facilitated more accurate prescription records and structured dose escalation. It also supports better monitoring of adherence since it is clear during a review when the next supply should be required. This along with questioning what medication supply patients have at home allows adherence issues to be identified and discussed with patients/carers.

An audit of haematology outpatient clinic waiting times prior to implementation showed an average wait time of 82 minutes; one of the recommendations was to implement this telephone clinic. In a patient/carer survey on care during the pandemic, 88% of respondents were happy with the telephone reviews they had received and 82% wished to continue with telephone clinics.

Conclusion The results show an escalation in hydroxycarbamide dose which correlates with a higher fetal haemoglobin, this in turn is associated with increased survival.1. This has been facilitated by the increased opportunity to focus on prescribing and medication review. From March 2020 to May 2021, due to the pandemic, dose escalation only took place if patients were admitted with crisis so further improvement may be seen in the future.

Full patient/carer involvement wasn’t possible in the initial set up of this new service due to pandemic limitations and the rapid implementation this necessitated. This may have contributed towards challenges with attendance for blood tests. Although the results show positive attitudes towards the clinic, re-audit of outpatient waiting times and patient/carer satisfaction is planned as the service is developed further.


  1. Qureshi A, Kaya B, Pancham S, et al. Guidelines for the use of hydroxycarbamide in children and adults with sickle cell disease: a british society for haematology guideline. British Journal of Haematology 2018;181:460-475.

Statistics from

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.