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oai:figshare.com:article/32639703 2026-10-01T16:37:44Z portal_1172 item_type_8 month_year_10_2026

Investigating the significance of multiple myeloma and its precursors Stephen James Quinn (24168807) PUREID: 592636710 multiple myeloma monoclonal gammopathy of undetermined significance smouldering multiple myeloma COVID-19 cancer epidemiology public health malignant progression quality of life psychosocial Northern Ireland Cancer Registry pre-cancer survey systematic review algorithm haematological malignancy Multiple myeloma (MM) is an incurable haematological malignancy (HM), preceded by two asymptomatic precancerous conditions called monoclonal gammopathy of undetermined significance (MGUS) and smouldering multiple myeloma (SMM). Clinical aspects of these conditions are generally well understood, however other traits such as epidemiology and psychosocial impacts are not. This thesis reports on a series of studies which aimed to build on under-researched aspects of MGUS, SMM and MM and build a clearer picture of the “significance” of each condition to populations and individuals. Following a review of the literature to identify research needs, a systematic review of MGUS’s rate of progression to malignancy was conducted. Clinical guidelines for MGUS are based primarily on one study, however n=42 studies were identified and analysed via meta-analysis and narrative synthesis, indicating a wide variety of malignant progression rates globally. Current clinical coding practices classify SMM and MM under the same disease label, which has hindered the study of SMM epidemiology. As a potential solution, a previously-developed algorithm to distinguish the conditions was trialled in an exploratory analysis of the Northern Ireland Cancer Registry. This study found limited application for the algorithm in the NICR, however reported the algorithm’s first validation in a cancer registry setting, highlighting the algorithm’s strengths and limitations. Findings from an online survey conducted during the COVID-19 pandemic were presented, analysing the psychosocial concerns of individuals with MGUS/SMM/MM, contextualised against other HMs. Pre-cancers were as psychosocially significant as MM; respondents reported similar experiences and needs between these groups, aligning with a distinct profile of psychosocial impacts compared to other HMs. An analysis of NICR data found that HM diagnoses had been minimally affected by the pandemic, but concerns about care were highly prevalent. This thesis supports patients, caregivers and researchers by highlighting MGUS/SMM/MM patients’ needs and identifying future areas for research. Thesis is embargoed until 31 July 2027. 2026-10-01T16:37:44Z Text Thesis 10.17034/32639703.v1 https://figshare.com/articles/thesis/Investigating_the_significance_of_multiple_myeloma_and_its_precursors/32639703 All Rights Reserved Open Access after 2027-07-31