Patient experience of MPN/CML clinic communication during the covid pandemic

ABSTRACT

One hundred and sixty-five questionnaires were posted to patients who were regularly seen in the nurse-led haematology out-patient clinic. This is an established service that has been operating for approximately 14 years. These patients had all been seen prior to the Covid pandemic, and then during this period. The questionnaire was sent out in August 2021. These patients are treated for either chronic myeloid leukaemia (CML), myeloproliferative neoplasms (MPN) or non-primary polycythaemia/thrombocythaemia. The MPN patients were diagnosed with either essential thrombocythaemia, polycythaemia vera or myelofibrosis. One hundred and thirty-three questionnaires were returned by patients. This is an 81% response. Before the pandemic, patients were mainly seen face to face, with a small number by telephone or email. Patients were happy with this at the time. From March 2020, at the start of the Covid pandemic appointments were suddenly changed to telephone (96%), with a small number by email (2%) or face to face (2%). 96% of the telephone follow-up patients were happy with this method, as were all of the email follow-ups. Patients were asked how they would prefer to be communicated with in the future. The majority of patients would prefer a face to face or telephone appointment. Text, email and video consultations were generally unpopular. People found it easier to communicate face to face, and preferred seeing a healthcare professional this way. A recurring theme was that telephone appointments were acceptable, on the understanding that if there was a change in their condition, a face-to-face appointment could be booked. Patients who worked were very supportive of telephone appointments. People generally felt 'safer' having their appointments remotely, and their blood tests carried out nearer to where they live, instead of at the hospital. Very few patients wanted to have text, video calls or email in the future-they preferred the personal contact, and many did not have the necessary equipment. Issues of long waits in the Pathology department and the difficulty of car-parking at the hospital prepandemic were mentioned by patients. Patients were very happy with the nurse-led haematology clinics. They liked the continuity, and having a point of contact. Over the time of the pandemic, processes were changed, with more use of electronic prescribing, different ways of documenting discussions, and non-paper requesting of blood tests. Together with increased use of email and the telephone, this has meant that services have been continued despite staff being isolated at home. There are increasing numbers of nurse-led clinics in Haematology, and these have been shown to be cost-effective and safe, providing holistic care and continuity (Thompson et al 2012). As services are redesigned, it is important to consider the views of the patients who are users of the clinics. The Covid pandemic has forced changes to healthcare services, and there may be long-term effects on the way that services are delivered in Haematology for patients with chronic conditions. Resilience needs to be built into the way that patients are monitored in the future, to ensure that they can continue without interruption, both during and post pandemic.