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

PURPOSE: The aim of this study was to investigate patient experiences of living with monoclonal gammopathy of undetermined 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 haematology 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.

Quality of life in patients with polyneuropathy associated with different types of monoclonal gammopathy of undetermined significance.

Polyneuropathy associated with monoclonal gammopathy of undetermined significance (MGUS-PNP) has a chronic and slowly progressive course but can lead to significant disability and reduced quality of life (QoL). The aim of this study was to analyze QoL in MGUS-PNP patients and to determine its predictors. Our study included 51 patients diagnosed with MGUS-PNP (23.5% with IgM, 66.7% IgG or IgA, 7.8% undetermined paraprotein, 2.0% light chains). QoL was assessed using the SF-36 questionnaire. The Medical Research Council Sum Score (MRC-SS), INCAT disability and sensory scores, ataxia score, Krupp's Fatigue Severity Scale and Beck's Depression Inventory were also used. Total SF-36 score was 50.0 ± 21.4 and no difference was observed between IgM and IgG/IgA MGUS-PNP. Physical composite score was worse than mental (44.4 ± 21.4 vs. 54.5 ± 20.9). Following factors showed correlation with SF-36 total score in univariate analysis: INCAT disability score, MRC-SS, INCAT sensory score, level of ataxia, fatigue and depression (p < 0.01). Significant predictors of worse SF-36 total score in our MGUS-PNP patients were depression (ß = - 0.46, p < 0.01), fatigue (ß = - 0.32, p < 0.01) and INCAT disability score (ß = - 0.27, p < 0.01). QoL in MGUS-PNP is equally affected in patients with different types of paraprotein. MGUS-PNP patients with more severe functional disability, fatigue and depression need special attention of clinicians since they could be at higher risk to have worse QoL. This should be taken into account when treating subjects with MGUS-PNP.

Association of resilience with health-related quality of life and depression in multiple myeloma and its precursors: results of a German cross-sectional study.

OBJECTIVES: To investigate the relation between resilience, health-related quality of life (HRQOL) and depression in multiple myeloma (MM) and its premalignant stages. MM is one of the most frequent haematological disorders. It is regularly preceded by asymptomatic stages of the disease namely monoclonal gammopathy of undetermined significance (MGUS) and smouldering multiple myeloma (SMM). Survivors have to cope with mental and physical impairment in terms of HRQOL and depression. The concept of resilience refers to a person's ability to adapt to adversity. DESIGN: Cross-sectional study. SETTING: MM outpatient department at a University Hospital in Germany (tertiary care). PARTICIPANTS: 292 consecutive patients from our MM outpatient department. OUTCOME MEASURES: HRQOL, depression and psychological resilience were assessed with validated questionnaires. RESULTS: Regression analyses were performed to determine associations between resilience, HRQOL and depression. 98 patients (33.6%) had a new diagnosis of active MM, 106 patients (36.3%) were already treated for MM and 88 patients had the diagnosis of a precursor (MGUS or SMM; 30.1%) of MM. Multivariate linear regression analyses revealed a strong positive impact of resilience on physical (b 7.20; 95% CI 4.43 to 9.98; p<0.001) and mental (b 12.12; 95% CI 9.36 to 14.87; p<0.001) HRQOL. Ordered logistic regression analysis showed that the odds for higher depression severity were lowered for individuals with a high level of resilience in comparison to the individuals with a low level of resilience (OR 0.11; 95% CI 0.06 to 0.19; p<0.001). CONCLUSIONS: Resilience may be a protective factor in the disease trajectory of MM and its precursors. As a next step, future research should focus on longitudinal assessments at various time points to elucidate the role of resilience in one of the most frequent haematological malignancies.