Setting Up Home Testing in Paediatric Services For Children with Chronic Suppurative Lung Disease

Rapid implementation of a remote testing service for regular microbiological sampling via cough swab or sputum of children with chronic suppurative lung disease during the COVID-19 pandemic.

Background

Regular microbiological sampling via cough swab or sputum is vital for children with chronic suppurative lung disease (CSLD). As COVID-19 hit, outpatient clinics became virtual which limited the ability to perform tests. The paediatric physiotherapy team rapidly implemented a remote testing service. Subsequently, they worked with the Transformation team to centralise a trust-wide home testing service, aiming to; improve efficiency, protect clinical time and expand to other services.

The Problem

Children with CSLD require multiple outpatient clinic visits to manage their condition, these appointments include tests such as sputum, cough swab and nasal samples. For example, children with Cystic Fibrosis (CF) are seen every 2-3 months and have on average 9 samples taken per year. As discussed, results from these tests inform treatment decisions but require multiple trips for families to the hospital. This places a significant burden on children and their families and means time off from school and work. In the context of the pandemic, such visits also risk greater exposure to infection

The COVID-19 pandemic saw face-to-face outpatient attendances switched to video and telephone, in order to reduce footfall in hospitals and to keep patients safe. Clinicians needed to have access to basic tests to allow them to make informed decisions on patient care during these virtual attendances.

The remote sampling service was initially set up by clinical teams, with sample pack preparation and requesting done by hand, which proved very time consuming. This ultimately took time away from patient care. Other departments within the Trust started similar services.

Aims

  • Develop a series of tests that can be collected by patients at home and posted to the hospital’s in-house laboratories.
  • Set up an end-to-end electronic requesting process and centralised service to assemble and send out kits, allowing clinicians to request home testing for their patients.
  • Expand the option for home testing to further services across the hospitals.

Stakeholders

  • Patients and families
  • Paediatrics Multidisciplinary team
  • Phlebotomy
  • Information Technology
  • Laboratories
  • Transformation team

PDSA Cycles / Solutions Tested

Cycle 1

The paediatric physiotherapy team worked with patients and families to test whether it was viable for patients to carry out cough, nasal swab and sputum samples at home. The team developed patient information leaflets and a video to guide families through the tests. Video appointments were provided to assist where necessary.

The team identified the kit and packaging required for patients to carry out samples at home. This required significant research to ensure they met with UN3373 regulations for sending specimens by post.

The team made use of an existing paper requesting process used in outpatients to request samples from microbiology. The physiotherapy team took on the role of packing and posting kits to patients.

The team carried out testing with several patients and monitored the results to ensure clinical validity.

Cycle 2

Other departments within the Trust were also setting up similar services. The Transformation team began work with the paediatric team to assess how centralising the service could increase efficiency and reduce the administrative burden on clinical staff.

The teams worked with IT to set up home testing in the Trust’s Order Comms system (this IT system is already used in the Trust for requesting other diagnostics). This enabled us to create an end-to-end electronic requesting process, removing the paper requesting forms. This meant requesting could be centralised through the Phlebotomy team, who had additional capacity due to the reduction of activity in our hospitals.

The clinical team tested the electronic process with a small number of patients and built on feedback to improve; including adding a kit list to the patient information leaflets to explain the contents of the kits and each item’s purpose.

Cycle 3

The electronic requesting process needed further iteration. Where clinicians previously ticked boxes for multiple tests in one sample on the paper form, the electronic setup appeared that the patient needed to collect multiple samples. The central team packing the kits were therefore sending multiple kits to patients. The IT team worked with Microbiology to amend the system and correct this.

The Transformation team worked with the clinical team to develop the content for a webpage on the hospital’s website to hold all the patient information online in one place alongside videos.

Outcome Data

Collecting data through the Order Comms service has proved a challenge. But the teams have tried several routes to start to build a picture.

Patient reported

The patient information leaflet includes a link to an online form (with QR code) for patients to complete when they have posted their samples. From March 2021 – June 2021, 136 paediatric patients have completed the MS Form to say they had received and returned a sample.

The data is reliant on patients completing the form and the numbers are significantly lower than the predicted actual samples returned, but this gives some indication. The team are working on improving data collection.

Service audit

From July to December 2020 (prior to the introduction of a centralised service), 640 sample packs were sent out to 340 children with CF in advance of their virtual clinic or following an urgent request. Of those, 588 (81.7%) specimens were returned. The team chased late samples during the virtual clinics or also sent reminders via text, this was required in approximately 25% of cases. Returned samples were received between 2 and 26 days of being taken.

Challenges and Learning

Data collection

Auditing the new centralised service has proved challenging. The Order Comms system does not currently differentiate home testing samples from other diagnostic requests within the hospital. We are developing a process to mark the tests as home testing in the IT system when results are processed by the laboratories.

Postage

Postage delays in returned samples is a concern, both due to increased risk of overgrowth of contaminants but also the team missing the result. Clinical interpretation must consider that a like for like comparison with face-to-face diagnostics isn’t possible. Therefore, results received via post should be interpreted with caution, particularly if delayed. This requires further auditing, but in the meantime, patient information leaflets include QR codes for patients to complete a short form acknowledging they’ve received their sample kit and the date they returned it. We also provide pre-labelled return packaging.

Alerting

It has proved challenging for clinicians to keep on top of the tests ordered as it has to date been a manual process of looking up each patient roughly a week later to see if the test has been returned and processed. We are working to set up a process within our Order Comms system to alert clinicians when the results of a test are processed.

How This Improvement Will Be Sustained 

Centralising the service has freed up the time the physiotherapy team was taking to perform administrative work, returning their time to patient care. This also widens the opportunity to expand much further into other services, creating further demand for the centralised team. This expansion is helping to build the case for allocating centralised funding to run the service.

Remote care management is now the new norm in the NHS since the pandemic. Most CF families surveyed within the Trust prefer a hybrid model of virtual and face-to-face care going forwards, including more convenient options to manage long-term conditions.

Suggestions for Further Implementation

We are currently exploring the use of remote capillary blood tests for paediatrics patients which are currently being used in adult services. Commercial companies providing these tests are not currently offering paediatric services. We will work with patients and their families to understand the feasibility of this.

The paediatric team have a poster presentation accepted for the North American Cystic Fibrosis Conference (NACFC) 2021.

 

Authors: Alice Morrisey, Nicola Collins, Miriam Oliver, Chloe Worger

Organisation: Royal Brompton & Harefield Hospitals

Published: August 2021

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