key: cord-1037730-i09y8bth
authors: Quinn, Stephen J.; Anderson, Lesley A.; Lohfeld, Lynne; McShane, Charlene M.
title: The psychosocial impact of the COVID‐19 pandemic on patients with monoclonal gammopathy of undermined significance, smouldering and active myeloma: findings from an international survey
date: 2021-06-21
journal: Br J Haematol
DOI: 10.1111/bjh.17427
sha: 876034f8277e49fee1276f229cb9ca2ff9764458
doc_id: 1037730
cord_uid: i09y8bth

Early in the COVID-19 pandemic, the UK National Health Service (NHS) identified multiple myeloma (MM) patients as a "clinically extremely vulnerable" population1 . In contrast, the clinical significance of COVID-19 to MM precursors, monoclonal gammopathy of undermined significance (MGUS)2 and smouldering multiple myeloma (SMM)3 , remains unknown. Here for the first time we summarise the impact of the COVID-19 pandemic on 274 MM spectrum individuals (66 MGUS, 33 SMM, 175 MM) who participated in the IMPaCCT (Investigating the impact of COVID-19 on caregivers and patients) study. The first wave of this online international longitudinal study took place between 24 April-14 July 2020.

UK population norms, 8 in the physical (P < 0Á0001), psychological (P < 0Á0001) and social (P < 0Á0001) domains but scored higher in the environmental domain (relating to physical/home environment, physical safety, care access and quality, etc.; P = 0Á001) ( Table I) . 8, 9 All groups had lower scores (indicating more problems) across the EQ-5D-5L domains compared to pre-pandemic UK normative values, 9 with MM respondents reporting more problems across all domains. Notably, high rates of anxiety/ depression were reported by MGUS/SMM/MM participants (64Á2%); however, only 7Á2% considered this to be severe or extreme (Table I) .

COVID-19-related anxiety and depression were frequently mentioned, and many people reported distress at being housebound. Older respondents and those with MM were more likely to report they were self-isolating (P < 0Á001). While concerns about contracting COVID-19, experiencing severe symptoms and impact on the future were mentioned ("It feels as if my life is being wasted"), many concerns focussed on fears of disease progression (Concerned myeloma may have spread, a patient with MM, 1-3 years since diagnosis).

Significantly more MM than MGUS or SMM respondents reported altered healthcare appointments (69Á7% vs. 40Á3% and 40Á6% respectively, P < 0Á001). Changes to treatment appointments were reported, with 22 patients with MM reporting chemotherapy appointments were changed, delayed or cancelled. Many participants expressed concern about the impact of delayed or cancelled appointments (I worry appointments will be delayed meaning changes in condition aren't picked up as soon as they could be, a patient with MGUS <1 year since diagnosis) (Table II) . Fear about COVID-19 exposure, particularly at a hospital, was also noted (Reluctant to go to the hospital clinic at all, even for blood work and consultation, a patient with SMM >5 years since diagnosis). In contrast, patients with MGUS were more likely than other participants (P = 0Á004) to report feeling their care had suffered or they had been abandoned (I feel neglected and that my illness isn't of any importance, a patient with MGUS <1 year since diagnosis).

Most respondents accessing telemedicine services (78Á3%) described their experience as positive or satisfactory, citing such advantages as increased convenience. Conversely, some correspondence participants reported telemedicine to be less effective than face-to-face appointments, had difficulty understanding information relayed by telephone and were left feeling less reassured after their calls. Healthcare professionals and scientists were the most highly trusted sources of COVID-19 information (84Á9% and 80Á5% trusting most/all information Table I . WHOQOL-BREF and EQ-5D-5L findings. Physical health 76Á5 from these sources respectively), although MGUS respondents reported having less trust in healthcare providers than SMM or MM respondents (P = 0Á013). Many respondents highlighted the need for specific information regarding the risk of contracting COVID-19 and shielding. In particular, patients with MM wanted to know how to shield properly and for how long, whereas pre-cancer patients wanted to know whether they should be shielding (I don't know if I should be shielding with MGUS, a patient with MGUS 4-5 years since diagnosis). Many respondents also wanted continued access to their normal care, including specialist appointments, medical tests and test results.

Individuals across the MM spectrum appear to have been negatively affected by the COVID-19 pandemic in similar ways, frequently reporting they felt isolated, anxious or depressed. This may be related to the uncertainty of the COVID-19 Table II . Supporting quotes from qualitative analysis of COVID-19 impact on myeloma-spectrum respondents.

• I've followed all the rules but it has made me anxious -MGUS, female, >5 years since diagnosis • It's increased my already high level of anxiety -MGUS, female, 4-5 years since diagnosis • Worried if I got sick I would be considered high risk and end up in ICU -MGUS, female, >5 years since diagnosis • Feel more frightened now of having cancer now that there is the added threat of coronavirus -MM, female, 1-3 years since diagnosis • Depressed, which isn't good when you have cancer -MM, male, 1-3 years since diagnosis Health/care impacts • Need assurance that condition is stable -MGUS, female, >5 years since diagnosis • Concerned myeloma may have spread -MM, female, 1-3 years since diagnosis • Essential treatment will be cancelled, delayed or not available to me -MM, male, 4-5 years since diagnosis • We are older, retired and more susceptible to germs -SMM, female, <1 year since diagnosis • I feel neglected and that my illness isn't of any importance -MGUS, female, <1 year since diagnosis • I worry appointments will be delayed meaning changes in condition aren't picked up as soon as they could be -MGUS, female, <1 year since diagnosis • Reluctant to go to the hospital clinic at all, even for blood work and consultation -SMM, female, >5 years since diagnosis

• Nearly as good as in person -MGUS, male, 1-3 years since diagnosis • I don't have to sit in the waiting room for three hours -MM, female, over 5 years since diagnosis • It is not always as easy to take in information in a phone call -MM, female, 1-3 years since diagnosis • Not as reassuring as a face to face appointment -MM, female, 4-5 years since diagnosis What further information/services/support would be useful for you at this time? pandemic, recommended social distancing and self-isolation, plus reduced availability of support and care services. Supporting this, Myeloma UK, the leading UK MM charity, reported unprecedented demand for their MM Infoline and 'Ask The Nurse' service 10 in March 2020, with service users particularly interested in COVID-19-specific issues including risk of infection, lifestyle, emotional issues and end-of-life support. 10 The present study benefits from a mixed-methods design and inclusion of both patients with MGUS and SMM, providing novel insight into the impact of the COVID-19 pandemic across the MM spectrum. Planned follow-up surveys will lead to identifying long-term impacts of the COVID-19 pandemic and additional support needs for this population. However, online recruitment and questions asking for self-reported disease status may reduce the generalisability of the findings to the wider MGUS/SMM/MM population.

Participant concerns over undetected disease progression and lack of timely healthcare appointments/treatments are also linked to the desire for unambiguous information about any heightened COVID-19 risk. As services resume, healthcare and other service providers should also be aware of patients' fears about accessing care in hospitals during the pandemic and plan to address the psychosocial needs of patients across the MM spectrum.

Keywords: COVID-19, myeloma, monoclonal gammopathy of undetermined significance, smouldering myeloma, psychosocial needs

Additional supporting information may be found online in the Supporting Information section at the end of the article. Table SI . Demographic characteristics of MGUS, SMM and MM participants. Table SII . COVID-19 symptoms, concerns and preventative measures across myeloma-spectrum groups.

McShane designed the initial concept for the study with input from the wider IMPaCCT team based at Queen's University Belfast and University of Aberdeen

Anderson 2 Lynne Lohfeld 1

E-mail: c.mcshane@qub.ac.uk References 1. National Health Service UK. Who's at higher risk from coronavirus

A case series of monoclonal gammopathy of undetermined significance and COVID-19

A tertiary center experience of multiple myeloma patients with COVID-19: lessons learned and the path forward

WHOQOL-BREF: Introduction, administration, scoring and generic version of the assessment: field trial version

EuroQol Research Foundation. EQ-5D-5L User Guide

A hands-on guide to doing content analysis

Framework analysis: a qualitative methodology for applied policy research

Expecting a good quality of life in health: assessing people with diverse diseases and conditions using the WHO-QOL-BREF

Cabas es J, eds. Self-Reported Population Health: An International Perspective Based on EQ-5D

Laketic-Ljubojevic I. Providing tailored information and support through the Myeloma UK, Myeloma Infoline and Ask The Nurse services during the COVID-19 pandemic

The study team would like to thank the participants for taking the time to complete this survey. The authors would also like to acknowledge the contributions of the wider IMPaCCT study team members in the initial design of the study. The named authors take sole responsibility for the analysis and interpretation presented within this paper.

The authors have no competing interests.