A user-friendly proforma to ensure children seen in the specialist nurse-led Down syndrome clinic have the necessary health checks for their age (based on Down’s Medical Interest Group guidelines)

Key contacts

Down Syndrome Specialist Nurses, Community Paediatricians

Introduction

Patients with Down syndrome have an increased incidence of health problems compared to the general population. The Down’s Medical Interest Group (DMIG) has provided evidence based surveillance guidelines for health care services for children with Down syndrome. These guidelines advise exactly which health checks are required for different age groups, and at what frequency. The checks advised include: thyroid function tests (TFTs), vision and audiology checks, and growth monitoring [all at regular intervals]. For those under 6 weeks of age, an Echo and bloods are recommended.

A north London borough provides an annual, specialist nurse-led, clinical review for children with Down syndrome. A customised health check proforma was designed as an aide memoir for the specialist nurse leading the clinic. The proforma was based on the DMIG guidelines and detailed which checks are necessary for each age group, and at what frequency.

SMART objectives

To determine whether the patients seen in the Down syndrome specialist nurse led clinics, over a year long period, met the suggested schedule for health checks for their age at their annual follow up appointment.

Progress made: What have you learned from doing this?

Methods

A data collection sheet was designed on Excel with a list of health checks that were supposed to be addressed in clinic. Patients were identified for audit from the Down’s specialist nurse led clinic lists, over a one year period. All the relevant information was inserted onto the Excel data collection sheet using the information found on the profomas (available in the medical records) and on the electronic results system.

Results

29 patients had been booked into four separate Down syndrome clinics over a one year period. 21 patients were actually seen in clinic as there were 8 ‘did not attends’. The average age was 9.4 years (range 3 – 17 years old). 86% of patients had had their TFTs checked, 95% had had growth monitoring documented, 71% had had their vision check and 52% had had their hearing check. No children were eligible for cardiac or haematology tests (based on their age > 6 weeks). Other health problems identified in clinics included: obesity, malnutrition, enuresis, cessation of periods, snoring/sleep apnoea, hypermobility, constipation and poor dentition. Where issues had been identified, appropriate referrals had been made in most cases.

What’s your take home message?

The introduction of the proforma has led to a high number of patients being seen in the specialty nurse led clinic receiving the recommended health checks for their age: in particular, thyroid function tests and growth monitoring. Referrals for other clinics (e.g. vision and hearing) appeared to be being made appropriately but there did not seem to be a system in place to check whether referrals were actioned. This led to a lower than expected % of patients having had their vision and audiology checks. Further focus is needed to ensure vision/audiology referrals are made, received and actioned, and to encourage children to attend these additional appointments. The proforma can be further adapted to include a range of additional problems (such as those that were also identified in this audit), with information on how and who to refer to for each specific health issue. This would further contribute to the provision of a thorough and holistic service for this vulnerable patient group.

Resources?

https://www.dsmig.org.uk/information-resources/guidance-for-essential-medical-surveillance/

Authors:

Dr Philippa Stilwell, Dr Indrani Banerjee