The Complex Psychological Effects and Perspectives of Patients on Diagnosis, Monitoring, and Future Treatments for MGUS and Smoldering Myeloma: A Mixed Methods Study

Background

Monoclonal Gammopathy of Undetermined Significance (MGUS) and smoldering myeloma are precursors to Multiple Myeloma (MM). International screening programs are identifying patients with precursor conditions, with the view to understanding the development of MM. International clinical trials are also under way to establish the effectiveness of treatments for MGUS and smoldering myeloma. Despite this considerable progress, the psychological effect of living with a precursor condition, alongside patient perspectives on diagnosis, ongoing monitoring, and the potential to treat MGUS and smoldering remain unclear. In this study, we examined these emerging issues and the psychological effects of living with precursor conditions; an area of international research focus.

Methods

MGUS and smoldering myeloma patients participated in a UK survey. Patients provided their demographics, perspectives on diagnosis, monitoring and treatments for MGUS and smoldering myeloma, and completed the PROMIS-29 Health-Related QoL (HRQoL) Questionnaire, measuring physical functioning, anxiety, depression, fatigue, sleep disturbance, and participation in social activities and social roles.

Qualitative data was analyzed using Interpretative Phenomenological Analysis (IPA) to examine patient perspectives on diagnosis, ongoing monitoring and their views on treating precursor conditions. Mean t-scores from the 6 subscales assessed the HRQoL and psychological impact of living with precursor conditions compared to normative scores. Interpretation of scores in PROMIS-29 were assessed against the general population with a normative score of 50.

Results

87 patients completed the survey. Four themes emerged from the IPA analysis including:

• ‘Living with the unknown’ signaled the daily anxieties patients experienced whilst living with a precursor condition and the potential for a ‘time bomb’ going off if they progressed. Patients also referenced the emotional burden of monitoring and waiting for test results.
• ‘Prevention is cure’ reflected patients desire for treatments to prevent progression to MM rather than curative treatments at the point where the disease had already become active.
• 'Remediation through treatment’ reflected the view that treating precursor conditions would reduce anxieties in relation to disease progression, leading to increased life expectancy and improved quality of life, respectively. Patients also reflected on the unwanted and ‘needless suffering’ of MM patients and remediation through effective treatments for precursor conditions.

The next analysis sought to examine the HRQoL and psychological effect of living with precursor conditions. MGUS patients had significantly higher levels of anxiety (M = 59.4, SD = 9.1), depression (M = 54.5, SD = 9.8), fatigue (M = 58.2, SD = 9.0) and disrupted sleep (M = 55.4, SD = 8.8) compared to normative scores. Patients also showed significantly lower participation in social roles and activities (M = 43.9, SD = 8.6) and physical functioning (M = 44.1, SD = 8.3) scores compared to normative scores.

Smoldeing myeloma patients had significantly higher levels of anxiety (M = 56.89, SD = 8.9), depression (M = 52.9, SD = 9.3), fatigue (M = 54.3, SD = 9.2) and sleep disturbance (M = 52.3, SD = 9.2) compared to normative scores. Smoldering myeloma patients also showed reduced engagement with social roles and activities (M = 43.9, SD = 8.6) and poorer physical functioning (M = 44.1, SD = 8.3) compared to normative scores.

Whilst most patients with MGUS and smoldering myeloma experienced a mild to moderate impact of their condition on daily living, levels of anxiety were particularly high in MGUS patients and in some cases approached a ‘severe’ category (i.e. ‘worse health’).

Conclusions

MGUS and smoldering myeloma patients have poorer HRQoL and psychological wellbeing in response to ongoing monitoring and perceived risk of disease progression to MM. Remediation through effective preventative treatments were recommended by patients and are highly likely to relieve the uncertainties of living with MGUS and smoldering myeloma. The results represent key considerations in the development of population-based screening programs and the ethical dilemma of treating precursor conditions to MM.