BSH22-PO118 The future of Outpatient Haematology: Self Supported Follow-up (SSFU) for patients with Chronic Lymphocytic Leukaemia (CLL) and Monoclonal Gammopathy of Undetermined Significance (MGUS)

Published Date: 31st March 2022

Publication Authors: Jackson R

Abstract
The primary aim of face to face follow-up is to recognise early disease relapse or progression and to identify physical or psychological concerns, the latter often being overlooked during increasingly busy clinics. Due to advances in diagnostics and treatments, current follow-up models are proving unsustainable, with most haematological conditions now requiring long-term follow-up.

St Helens & Knowsley NHS Trust (STHK) became a pilot site to utilise ‘My Medical Records’ (MMR) within haematology, having already proved successful across other solid tumour sites. MMR is an online portal that can be accessed by both patients and the haematology team. Patients with Stage A CLL and MGUS were identified and enrolled onto the online portal after attending an initial education workshop. The workshop aims to empower patients to self-manage; emphasis is placed on self-examination with the need to report any red flag symptoms and psychological concerns via an online health questionnaire. When a patient raises a concern, either physical or psychological, they are contacted by a haematology cancer support worker. After attending phlebotomy patients are able log on to MMR to access their own blood results and can message the team with any concerns. Blood results are checked for evidence of progression by a haematology clinical nurse specialist. If no concerns are identified then the patient remains on SSFU without the need to attend hospital, in turn freeing up a consultant-led clinic slot. If there is any suspicion of disease progression patients are invited to attend a face to face clinic appointment in a consultant or nurse clinician led clinic.

An audit was undertaken 12 months post implementation of SSFU at STHK, to assess the safety and effectiveness of the model. In addition, patient experience and satisfaction were assessed using patient surveys and interviews. Within the audited 12 months 258 patients had been enrolled to SSFU. During this time there were 17 patients suspended from SSFU and moved back to consultant led care due to suspected disease progression. All of the suspensions were appropriate with no missed opportunities and with no delays to diagnostics or treatment. Seven patients died during the audited timeframe, but none of these were due to their underlying haematological condition.

From the surveys and interviews, patients concluded that SSFU is an acceptable form of follow-up, saving them time off work and hospital parking fees. Users reported confidence in being able to access the haematology team when they had a concern.

In conclusion, our audit into the use of SSFU and MMR has proven to be a safe and effective follow-up model in patients with both CLL and MGUS. Patients can successfully report symptoms suggestive of disease progression and self-supported follow-up can free up valuable face to face clinic slots for clinicians. In addition to saving face to face clinic slots, the model promotes self-management and empowerment for patients. The online health questionnaire provides additional regular holistic needs assessment, something that is often overlooked in a busy clinic setting.

With cancer numbers predicted to increase significantly over the next couple of decades SSFU is a model that can help with capacity and demand issues. We believe that there is potential for this model to be rolled out to other conditions such as ITP and Lymphoma.

 

Jackson, R. (2022). BSH22-PO118 The future of Outpatient Haematology: Self Supported Follow-up (SSFU) for patients with Chronic Lymphocytic Leukaemia (CLL) and Monoclonal Gammopathy of Undetermined Significance (MGUS) - An online Portal Audit. British Journal of Haematology. 197 (Suppl 1), 158-159

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