Empowering patients in the face of a pandemic-a multidisciplinary remote monitoring clinic for a patient-centred approach in myeloma
Authors: C. Lecat, M. Camilleri, D. DeSilva, O. McCourt, S. Worthington, M. Smith, A. Hart, I. Uddin, C. Roche, A. Fisher, K. Yong
Journal: HemaSphere (2021)

Myeloma patients who have completed chemotherapy move from an intensive period of interaction with healthcare professionals, to less frequent visits. At this time, they often struggle with disease burden, as well as treatment related toxicities and age-related co-morbidities. We previously reported from focus group interviews that patients need lifestyle support and advice to return to their pre-morbid social, psychological and economic functionality. Improved patient survival with novel therapies has resulted in increasing patient numbers in outpatient clinics. Centralisation of services means that many patients travel long distances to maintain contact with their transplant centre because they value the access to optimal treatment and clinical trials. Faced with growing numbers of patients in follow up with survivorship needs, we designed the Promoting Individualised Self- Management and Survivorship (PrISMS) clinic for myeloma patients who are off treatment and in plateau phase in early 2019. This remote clinic is staffed by a doctor, a nurse specialist and a physiotherapist, a multidisciplinary team approach to holistic management centred on patient needs and providing consistent individualised physical activity and lifestyle advice. Two weeks before the consultation, patients are required to have a blood test locally or at our hospital, and to complete a questionnaire about their concerns, symptoms and ways in which they would like to improve their health. We did not know at the time that such model of care would become especially pertinent as a result of the COVID-19 pandemic. From March 2019 to October 2020, we enrolled 54 patients into the pilot PrISMS clinic and held 197 telephone or video consultations. The median call duration was 12 minutes, with most patients having had their blood tests (89%) and questionnaires (84%) completed before the appointment. Patients needing closer monitoring or active treatment due to disease relapse (9/54) were referred immediately back to face-to-face clinics. 78% and 89% of patients received nurse specialist's and physiotherapist's advice at any point in time, with 11 patients (20%) referred to local exercise programmes. Regarding patients' feedback, 31 of the 36 surveyed patients (86%) agreed or strongly agreed that they felt more confident in self-managing myeloma after the consultations. 94% (34/36) of the survey patients agreed or strongly agreed that their concerns and symptoms were addressed, and 77% (28/36) gave an overall service rating of good or excellent. Thematic analysis of telephone interviews with 22 participants revealed additional benefits of reduction in travel costs and time, shorter waiting times and reduction in associated psychological stress (Table 1). PrISMS clinic aims to empower patients through patient-centred care by providing tailored advice, through enhancing patients' competences by signposting them to various survivorship tools (Table 2), and through active patient participation by setting achievable goals. We hope that this new care model will improve patients' clinical experience and build trust in their clinical teams particularly at this time of crisis, and to reduce their sense of isolation. We continue to evaluate this service based on patients' feedback to optimise individualised care and resource allocation. Future work is needed to formally confirm its effects on patient reported outcome measures, safety and healthcare resource usage. (Table Presented).