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

Author:

Buck Caroline1,Castillo Francisco Brenes1,Bettio Elena1,Land Joanne2,McCourt Orla2,Poole Helen3,Tarling Rachel3,Yong Kwee2,Popat Rakesh2,Lee Lydia2,McMillan Annabel2,Papanikolaou Xenofon2,Xu Ke2,Kyriakou Chara2,Rabin Neil2,Wechalekar Ashu2,Fisher Abigail1,Sive Jonathan2

Affiliation:

1. University College London

2. University College London Hospital

3. Liverpool John Moores University

Abstract

Abstract 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.

Publisher

Research Square Platform LLC

Reference48 articles.

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2. Gasparetto, C. (2019). Understanding multiple myeloma. Jones & Bartlett Learning.

3. National Institute for Health and Care Excellence. (2016). Overview: Myeloma: Diagnosis and management: Guidance. NICE. (n.d.-c). https://www.nice.org.uk/guidance/ng35

4. Living with advanced but stable multiple myeloma: a study of the symptom burden and cumulative effects of disease and intensive (hematopoietic stem cell transplant-based) treatment on health-related quality of life;Boland E;Journal of pain and symptom management,2013

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