Patient and caregiver perspectives on treatment decision-making for stem cell transplantation in multiple myeloma.

Abstract

Purpose: Stem cell transplantation (SCT) is considered standard of care for patients with newly diagnosed multiple myeloma (MM) but is still associated with substantial challenges for patients and caregivers. Given the challenging treatment process and availability of other treatment options, it is important to engage patients in treatment decision-making, particularly patients with MM who may have unique goals and preferences.

Methods: We conducted an exploratory focus-group study to evaluate how patients and caregivers make treatment decisions related to SCT. Fourteen patients who underwent SCT and 3 caregivers participated in three 2-h focus-group sessions. All 17 patients were selected from Janssen's Patient Engagement Research Council. Discussions focused on conversations about SCT, considerations for decision-making, and reflections about the decision to undergo SCT. This study was reported in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ).

Results: Participants initially had limited knowledge about SCT but received information from their doctors and sought information from various sources. Key considerations during decision-making included long-term health impacts, side effects, and logistical and financial concerns. Most participants reported that they never considered or were never offered other treatment options, highlighting a need for improved education on available treatments for MM. Some participants also shared a desire for more information about the SCT process, particularly the recovery period, which they found more difficult than expected.

Conclusion: These findings highlight potential opportunities for improved education to enhance shared decision-making in patients undergoing SCT and their caregivers.