Exploring the psychological impact and healthcare experiences of patients living with triple class refractory multiple myeloma: an interpretative phenomenological analysis study.
Patients with triple class refractory multiple myeloma experience significant psychological burden and unmet needs around psychological support, treatment decision involvement, and clinical trial navigation across their patient pathway.
Key Findings
Results
Three overarching themes captured the key unmet needs of patients with triple class refractory multiple myeloma (TCRMM).
The three themes were: (1) Matching psychological support to specific moments, (2) Finding a voice in treatment decisions, and (3) Learning to navigate clinical trials.
The study used Interpretative Phenomenological Analysis (IPA), a qualitative methodology, applied to semi-structured interviews.
Seven patients diagnosed with TCRMM participated (five men and two women), aged 41-84 years (M=60 years, 3 months, SD=15 years).
Patients were recruited through Myeloma UK, a charity for patients with MM and carers.
Results
Patients identified specific key moments in their care pathway where regular psychological input was needed.
The theme 'Matching psychological support to specific moments' identified drivers for regular psychological input at key points in the patient pathway.
The findings demonstrate a psychological burden associated with TCRMM and its treatments across patient management and/or care.
This theme highlighted that psychological support needs were not uniform but were tied to particular moments in the disease and treatment trajectory.
Results
Patients with TCRMM reported a perceived lack of involvement in treatment decisions and expressed a desire to be more engaged.
This finding was captured under the theme 'Finding a voice in treatment decisions.'
The study found that patient access to informative materials and practical tools to support engagement in informed decision-making, specifically around treatments, needs to be more routinely offered and made available.
This reflects an unmet need for shared decision-making practices within clinical care for TCRMM patients.
Results
Patients with TCRMM faced significant challenges accessing transparent information about clinical trials and navigating eligibility criteria.
The theme 'Learning to navigate clinical trials' highlighted complexities associated with accessing transparent information about trials.
Eligibility criteria for clinical trials were identified as a specific source of difficulty and complexity for patients.
Patient access to informative materials and practical tools to support engagement in informed decision-making around clinical trials needs to be more routinely offered and made available.
Methods
The study sample included patients who had become triple class refractory at varying time points after their initial multiple myeloma diagnosis.
Two patients had become TCRMM within 6-12 months of MM diagnosis.
One patient became TCRMM within 1-5 years of diagnosis.
Four patients became TCRMM over 5 years after diagnosis.
This variation in time to triple class refractory status captures a range of disease trajectories within the small sample.
Methods
This TCRMM qualitative study formed part of a wider qualitative study examining experiences across different stages of multiple myeloma.
The wider study examined the experiences of newly diagnosed, double-class exposed, and TCRMM patients.
The specific focus of this paper was on the TCRMM patient subgroup.
Patients provided written consent prior to participation.
What This Means
This research suggests that people living with triple class refractory multiple myeloma (a form of blood cancer that has stopped responding to three major types of treatment) face significant psychological challenges and unmet needs in their healthcare experiences. Through in-depth interviews with seven patients, researchers identified three major areas where patients felt let down: they needed psychological support at specific difficult moments in their care journey, they felt excluded from decisions about their own treatment, and they struggled to find clear information about and access to clinical trials that might help them.
The study highlights that the emotional burden of having a difficult-to-treat cancer is not adequately addressed by the healthcare system, and that patients want to be more active participants in decisions about their care. Many patients also found the process of understanding and accessing clinical trials confusing and opaque, which is particularly important given that clinical trials may represent one of few remaining treatment options for this group.
This research suggests that healthcare systems caring for people with triple class refractory multiple myeloma should more routinely provide psychological support tied to key moments in treatment, actively involve patients in treatment decision-making, and offer better information and guidance around clinical trial participation. Although the sample was small (seven participants), the qualitative approach allowed for detailed exploration of individual experiences, and the findings point to practical changes that could improve quality of care for this vulnerable patient group.
Ali N, Kuttschreuter L, Quinn S, Wood S, Harris R. (2026). Exploring the psychological impact and healthcare experiences of patients living with triple class refractory multiple myeloma: an interpretative phenomenological analysis study.. BMJ open. https://doi.org/10.1136/bmjopen-2025-108269