ABSTRACT
Background: ASCT is standard of care in biologically fit, newly diagnosed MM (NDMM) patients (pts), offering deeper responses with prolonged progression free/overall survival and improved quality of life (QOL). However, with the UK's 1st national lockdown on 23/03/2020, several guidelines recommended deferring ASCT for MM due to risks of infection, with resource limitations forcing some units to suspend ASCT entirely. Such changes to pts' treatment plans inevitably altered their lived experience during these uncertain times with expected impact on QOL. Aims: To provide a snapshot of how COVID-19 affected the MM ASCT service in a single UK institution, including changes to chemotherapy treatment plans, timing, and prioritisation of ASCT. To gain insight into MM pts' understanding of their disease, initial therapy and ASCT, and their response to therapy changes. Methods: We collected data on 115 NDMM pts who had a stem cell harvest (PBSCH) for upfront ASCT from December 2019-January 2021. During this time, 3 national lockdowns led to the ASCT service being suspended twice (March-June 2020 and January-February 2021). 25 pts within this cohort underwent a semi-structured interview via telephone. Inductive and deductive framework analysis was utilised to determine key themes and subthemes. Results: Pts were discussed in multidisciplinary meetings and decisions taken to delay or defer ASCT based on pt fitness, disease risk and depth of response. 73 (63%) proceeded to ASCT and 42 (37%) were deferred indefinitely (ASCTdef). The 2 groups were similar in terms of gender, age and ISS, but there were more pts with adverse risk cytogenetics in the ASCT group (26% vs 12%). Both groups were predominantly treated with bortezomib-based induction;in 11/73 (15%) ASCT and 7/42 (16.7%) ASCTdef pts treatment was changed to an oral, lenalidomide- based regimen to reduce hospital attendances for parenteral therapy. Overall response to induction in the 2 groups was similar;97.3% and 95.2% and 3VGPR 59% and 52.4% in ASCT and ASCTdef pts respectively. 28/73 ASCT pts had no delay to ASCT and none received bridging chemotherapy;45/73 had delayed ASCT (median 11 months [5-17] from start of induction) of whom 31 were put on bridging chemotherapy. In the 42 ASCTdef pts, 5 relapsed within ≤6 weeks of PBSCH and received 2nd line therapy, 30 were put on holding chemotherapy (previously not offered in the UK) as per NHS England COVID-19 interim guidance and 7 remained treatment-free post-induction. Thematic analysis identified 6 overarching themes: a) psychological response to diagnosis and initial therapy, b) beliefs and opinions about the benefits of ASCT, c) perceptions of information provided about MM and ASCT, d) high levels of fear and anxiety around COVID-19 and e) feelings about ASCT disruption or delay due to COVID-19 f) perceptions of care. Example subthemes were beliefs that ASCT would provide a long-remission/best chance of normality including freedom from chemotherapy and associated side-effects, disappointment and devastation at COVID-related treatment delays (in spite of high anxiety about infection) and exceptionally high levels of trust in the transplant team.
ABSTRACT
Content: Introduction: Myeloma patients who have completed chemotherapy moved from an intensive period of interaction with healthcare professionals, to less frequent visits. At this time, they often struggle with disease burden, treatment side effects and age-related co-morbidities. Improved patient survival with novel therapies has resulted in increasing patient numbers in outpatient haematology clinics. Centralisation of services means that many patients travel long distances to maintain contact with their transplant centres because they value the access to new drugs and clinical trials, and expertise in management of transplant-related complications and relapse. Faced with growing numbers of patients in follow up with survivorship needs, a new patient-centred model of care is needed. Method: The Promoting Individualised Self-Management and Survivorship (PrISMS) clinic was designed for myeloma patients who are off treatment and in plateau phase. This remote clinic is staffed by a doctor, a nurse specialist and a physiotherapist, a multidisciplinary team (MDT) approach to holistic management centred on patient needs and providing consistent individualised physical activity and lifestyle advice. Two weeks before the consultation, patients complete a questionnaire about their concerns, symptoms and ways in which they would like to improve their health. This allows the MDT to prepare appropriate advice for each patient, ensuring efficient use of consultations. Patients are also required to have a blood test either locally or at University College London Hospital before the clinic. Results: From March 2019 to October 2020, 54 patients were enrolled into the pilot PrISMS clinic and 197 telephone or video consultations were held. The median call duration was 12 minutes. Most patients 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 respectively at any point in time, with 11 patients (20%) referred to local exercise programmes. Patients were signposted to survivorship tools such as online exercise videos and lifestyle mobile applications when appropriate. Patient feedback was positive, with 31 of the 36 surveyed patients (86%) agreed or strongly agreed that they felt more confident in self-managing myeloma after PrISMS consultations. 94% (34/36) 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 feedback interviews with 22 participants revealed additional benefits of reduction in travel costs and time, substantially shorter clinic waiting times and reduction in associated psychological stress (Table 1). Conclusion: This new patient-centred model of care has been demonstrated to be safe and feasible, with good patient satisfaction. We hope that this MDT approach will empower patients, improve their clinical experience, and build trust in their clinical teams, as well as reducing patients' sense of isolation and vulnerability particularly in this time of COVID-19 crisis. Future work is needed to formally confirm its effects on patient reported outcome measures, safety and healthcare resource usage.
ABSTRACT
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).