During the spring of 2020 we saw the start of new clinical trials becoming available for patient trial entry. This would normally mean that patients with a haematology bone marrow malignancy may have been able to access new drug treatment options and combinations. This year has, however, been an extraordinary year for patients and their families. No one would have been able to predict that these new trials starting up would instead give patient access to COVID-19 treatment options.
This article will focus upon the period around the COVID-19 pandemic of March-July 2020 and how this experience has shaped our clinical studies, patient follow-up and support. Prior to COVID-19, our Haematology clinical studies continued to offer patients new treatment therapy combinations which consisted of a combination of oral medication and treatments which required day case or ward-based therapy. Patients and their families would have regular clinic attendance and face-to-face contact with their specialist clinical teams. This gave the patients and their families the opportunities to discuss their concerns and ask questions about their treatments and any side effects that they would need to report to their teams.
Patients and their families frequently report to the haematology teams of the benefits of receiving vital face-to-face support and information, which they need to guide them through their treatment journey. Patients are regularly seen by their clinicians and specialist nurses, with a medical review, blood tests, scans and follow-ups as needed throughout treatment, which continues at selected timepoints in follow-up clinics.
During the COVID-19 pandemic, this approach of care provision that we have all been part of for several years has been completely adapted and reshaped to adjust to the current situation. Patients and their families have been shielded, as set out within Government guidance. There has been a huge amount of online support and information available for patients and their families, which has seen everyone working together as one big community. Clinical and specialist teams have provided telephone medical reviews, advice, and follow-up with Zoom meetings, virtual patient support groups, Buddy support and nurse-led telephone clinics.
Attendance to hospitals has naturally been restricted and only essential or vital visits have been possible. Patients and their families have been given advice locally from their own medical teams along with the national guidance daily. Many patients and their families have struggled at times with being able to know how to support their partner with keeping them safe whilst they may have had to go out in to the community or still continue to work when the restrictions have been eased.
During this period, a selection of clinical trials for some patients have remained open and some have been paused to new patients, but all have been able to continue to provide treatment options for patients. Blood tests and scans that may have been required during the pandemic have either been rescheduled or rearranged to mitigate the risks or benefits to the patients, their families and health care professionals that provide their care. Policies, procedures and updates were continually adapted to maintain patient care and reduce risk of COVID-19 infection.
Patients had regular contact with their medical and nursing specialist teams, usually via telephone and virtual clinic reviews. Whilst this may have worked well and was suitable for many, this way of medical review was met with confusion for some patients and their family members. As many patients were shielding, patients who required hospital attendance for treatments found communication difficult at times as they were unable to have anyone accompany them within the hospital setting.
Patient experiences during COVID-19
During this period of change and uncertainty, patients’ questions were focused on how they would be able to get their blood tests prior to their next course of treatment and where would that visit be. Alongside these concerns were issues with being able to have their medication collected or delivered to their homes. There were many incredible ways that local communities worked together and adapted to help support patients and their family members getting their medication to them when it was needed.
Patients and their family members continue to have many questions about exercise—when and where—as well as regarding issues around returning to work as some of the lockdown regulations begin to ease.
Over the recent weeks we have started to re-open some of the clinical studies that have been paused. We continue to review patients with a combination of virtual medical telephone appointments and face-to-face visits. Restrictions within the hospital environments remain in place currently and are continually monitored and updated.
Patients are supported and updated by their local specialist team. This includes providing patients with ways of how to access support networks, websites, patient support groups and more. You can find support and information on the Leukaemia Care website. Simply click here to find out more about our virtual support groups and access advice on your health and wellbeing.