The impact of continuous lenalidomide maintenance treatment on people living with Multiple Myeloma – a single-centre, qualitative evaluation study

Purpose: Continuous lenalidomide maintenance treatment after autologous stem cell transplantation delivers improvement in progression free and overall survival among newly diagnosed multiple myeloma patients and has been the standard of care in the UK since March 2021. However, there is scant information about its impact on patients’ day-to-day lives. This study aimed to qualitatively assess patients receiving lenalidomide treatment at a specialist cancer centre in London.

Methods

We conducted 20 semi-structured interviews among purposively selected myeloma patients; 10 male & 10 female, median age 58 (range: 45–71) to gain insights into perspectives on lenalidomide. The median treatment duration was 11 months (range: 1–60 months). Reflexive thematic analysis was used for data analysis.

Results

Four overarching themes were: i) Lenalidomide: understanding its role and rationale; ii) Reframing the loss of a treatment-free period to a return to normal life; iii) The reality of being on lenalidomide: balancing hopes with hurdles; iv) Gratitude and Grievances: exploring mixed perceptions of care and communication. Results will be used to enhance clinical services by tailoring communication to better meet patients' preferences when making treatment decisions.

Conclusion

This study highlights that most patients feel gratitude for being offered continuous lenalidomide and perceive it as alleviating some fears concerning relapse. It reveals variations in side-effects on different age groups; younger patients reported no/negligible side-effects, while several older patients with comorbidities described significant symptom burden, occasionally leading to treatment discontinuation which caused distress at the perceived loss of prolonged remission. Future research should prioritise understanding the unique needs of younger patients living with multiple myeloma.