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Myeloma UK study shows the emotional impact of living with a relapsing and remitting disease

Read about new Myeloma UK Health Services Research examining patient and carer experiences of relapsed/refractory myeloma.

Research news // 25th September 2019

Our Health Services Research Manager, Jayne Galinsky presented findings from a study examining patient and carer experiences of relapsed/refractory myeloma at the 21st World Congress of Psycho-Oncology in Banff yesterday.

The conference welcomes psychologists, researchers, and other health care professionals from around the world to discuss emerging research into the impact of cancer.

The work, which is part of our Health Services Research Programme, highlights a lack of support for the psychological and social challenges that surround living with a relapsing and remitting cancer, such as myeloma.

Health Services Research Manager Jayne Galinsky said:

“This study suggests that there is a need for healthcare professionals, healthcare services and patient organisations to work more collaboratively to provide an effective network of support and information for both patients and their carers, with a particular focus on living with uncertainty and unpredictability.”

Health Services Research Manager, Jayne Galinsky presenting at the 21st World Congress of Psycho-Oncology

In the study, the research team interviewed 13 patients with relapsed/refractory myeloma and nine partners of patients to understand their perspectives and experiences of living with myeloma.

The research indicates that living with a relapsing and remitting cancer like myeloma has a psychological and social impact on both patients and their family members.

The team found that due to the uncertain and unpredictable nature of relapse patients and their family members experienced a lack of control and subsequent anxiety about their futures. Many patients accepted that relapse was inevitable. However, this inevitability caused some patients to stop living their normal lives, and for others to live in fear of relapse.

In addition to the uncertainty in disease progression and future treatments, patients lived with a new sense of risk and uncertainty in their day to day lives. Fatigue, a weakened immune system, and active bone disease led patients to restrict their participation in public spaces (such as public transport) and sport to avoid infection or fractures.

The team also found that carers described a complex range of emotional impacts of caring for a partner with relapsed or refractory myeloma, including staying positive for the patient, worrying about the future, feeling upset, guilty, frustrated, angry or depressed.

Further findings demonstrated that, at times, carers felt unsupported and unprepared for living with a partner with relapsed or refractory myeloma. The language and pace at which side effects and treatments were explained did not sufficiently prepare carers for the challenge of supporting a partner, particularly with treatments that changed or were modified over time.

Not knowing about the future and how myeloma would ultimately impact family members in the longer term was difficult and a lack of information and support added to feelings of worry. Carers, like patients, sometimes felt like they lived in limbo.

Myeloma UK is dedicated to working on improving the lives of patients and their families. We provide support and resources for any patient or family members who feel anxious and uncertain about the future. Myeloma UK works with our health care professional partners and external research colleagues to improve support for relapsed/refractory myeloma patients and their families.

If you are a patient or carer looking for support or information you can call the Myeloma UK Infoline 0800 980 3332 (UK) or 1800 937 773 (Ireland) or read our publications including our “Infopack for relapsed and/or refractory myeloma patients“, “Infopack for carers of myeloma patients” and “Infopack for living well with myeloma“.