Living with MGUS. How does it compare to the other premalignant conditions?

Introduction: Monoclonal gammopathy of undetermined significance (MGUS) is a premalignant plasma cell disorder which precedes multiple myeloma (MM), an incurable blood cancer. Previous studies have reported premalignant conditions including cervical intraepithelial neoplasia and Barrett’s oesophagus may impact on the health and wellbeing of patients. These conditions can affect adults at any stage of life and require lifelong follow-up. The study team undertook a systematic review of the literature to investigate the impact of receiving a premalignant diagnosis and compared the reported patient experiences to findings from an ongoing qualitative study with MGUS patient’s in Northern Ireland.
Methods: The Systematic Review Databases PubMed, PsychInfo, Web of Science, EMBASE and Medline were searched from inception through to February 2017 to identify studies measuring the psychosocial impact of premalignant conditions. Studies were included if patients had a confirmed premalignant condition and there was a qualitative assessment of their psychosocial health (N=17 studies). These studies were analysed using qualitative synthesis. The Assessing the Impact of MGUS (AiMS) studyThe AiMS study (n=14 participants) is a qualitative study of MGUS patients followed-up by nurse-led telephone clinic in Northern Ireland. MGUS patients participated in either a focus group or telephone interview. The recorded interviews were transcribed and the data were subjected to thematic analysis.
Results: The main themes emerging from the qualitative studies of premalignant patients (n=17) identified in the systematic review were: (1) lack of information about their condition, (2) uncertainty about their diagnosis, (3) behaviour changes (e.g. dietary and quitting smoking), (4) ‘watchful waiting’ and (5) fear about their condition progressing to cancer.Similar themes on accessing and understanding information and the fear of cancer progression were also reported by MGUS patients participating in the AiMS study. However, additional themes including the place of diagnosis (i.e. perceiving the haematology centre as the cancer centre), awaiting follow-up test results and a perceived lack of support from healthcare professionals were the other chief concerns reported.
Conclusions: While there are several similarities between patients with MGUS and other premalignant conditions, there are specific factors which are unique to the MGUS patient population and which can have a significant impact on their daily lives. The haematology community should be aware of the impact of living with MGUS and appropriate resources, such as telephone clinics, should be put in place to help alleviate the burden of living with such a diagnosis.