Patient's perspectives of living with a precancerous condition: monoclonal gammopathy of undetermined significance (MGUS)

Research output: Contribution to journalArticlepeer-review

Abstract

Purpose:
The aim of this study was to investigate patient experiences of living with monoclonal gammopathy of undermined significance (MGUS). Living with a premalignant condition such as MGUS may elicit negative psychosocial effects including increased anxiety and fear of progression to cancer. To date, no study utilising qualitative methodology has explored the lived experiences of MGUS patients.
Methods:
Data was collected via two focus groups and six telephone interviews. MGUS patients (n=14) were recruited via nurse-led hematology telephone-clinics in Northern Ireland. Interviews were transcribed verbatim and the data subjected to thematic analysis.

Outcome:
Thematic analysis identified 3 overarching themes; (1) The psychosocial impact of an MGUS diagnosis, (2) Knowledge of MGUS and (3) Experiences of MGUS health services. Patients with MGUS reported experiencing poor psychological adjustment to their condition particularly at the point of diagnosis and approaching follow-up appointments. Feelings of isolation, poor information-provision, increased uncertainty and limited psychosocial support for MGUS patients were also reported. Patients did however reflect positively on their experience of being followed up via nurse-led telephone clinics.

Conclusions:
Provision of patient friendly information guides at diagnosis, and additional psychosocial support services such as nurse-led telephone clinics and coordinated patient groups may help MGUS patients adjust better to their diagnosis and in doing so improve quality of life in this patient population.
Original languageEnglish
Article number101901
JournalEuropean Journal of Oncology Nursing
Volume51
Early online date17 Jan 2021
DOIs
Publication statusPublished - Apr 2021

Bibliographical note

Funding Information:
Funding for this study was provided by a Cancer Translational Research Group Young Investigator Grant . At the time of the study, Dr Charlene McShane was in receipt of a Cancer Research UK Population Sciences Research Fellowship.

Publisher Copyright:
© 2021 Elsevier Ltd

Copyright:
Copyright 2021 Elsevier B.V., All rights reserved.

Keywords

  • Monoclonal gammopathy of undetermined significance
  • MGUS
  • Multiple Myeloma
  • Quality of life
  • Qualitative
  • Precancer

ASJC Scopus subject areas

  • Oncology(nursing)

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