Background

Primary cutaneous lymphoma is a rare disease managed in specialist centres. As a consequence, patients travel large distances to attend such centres. The COVID-19 pandemic has led to a rapid change in the clinical assessment and management of patients with cancer to reduce footfall and the potential risk to patients of attending conventional outpatient appointments. In alignment with many NHS services, the majority of “outpatient” consultations for patients with cutaneous lymphoma have been performed by telephone and more recently, video. It is important to understand patients’ experience of these innovations, to help shape and develop the cutaneous lymphoma outpatient service for the future.

The aim of this study is to compare the experience of a remote with a face to face consultation during the period of Covid-19 disruption.

Method

45 patients with cutaneous lymphoma were identified. All patients had undergone at least two different methods of consultation. Three patient led surveys (telephone, video, face to face) were developed by a multi-disciplinary team. Questions were adapted from validated primary care remote consultation guidelines and EQ5D. A patient representative provided feedback on the questionnaire prior to study commencement.

Results

Patient demographics: (82%) male, median age (range) 68 (39-84) years. At the time of writing >50% of the feedback forms have been received. Initial responses indicated the remote consultations were suitably private with sufficient time allowed to agree on a management plan. No communication difficulties were reported and patients indicated a similar experience to previous face to face appointments. When asked to consider the future after covid-19 restrictions are no longer an issue, patients indicated that they would be happy to consider telephone or video consultations as an adequate substitute to face to face consultations in the appropriate clinical circumstances.

Conclusion

Our primary findings indicate that post Covid-19, patients with cutaneous lymphoma may be best served by a blended outpatient policy combining, face to face interaction with remote consultations by telephone or video. This is particularly advantageous in this setting of a rare disease where patients travel large distances to the specialist centre.

Impact statement

Improvement in outpatient policies in the management of patients with rare cancer diagnoses