Myeloma Clinical nurse specialist HCA Healthcare UK london, England, United Kingdom
Introduction: Multiple myeloma (MM) and Amyloid (AL) is a treatable plasma cell cancer with no cure1. The average age of diagnosis of these malignancies is 70 years old2. The overall survival of younger patients is drastically longer than of their older cohorts3, and with this comes a unique set of challenges and obstacles to live with at such a young age. The young MM and AL patients and their survivorship is not a common area of exploration.
We performed this study to understand the impact of these diagnoses on our patients from a physical, psychological and social perspective and assess their need for increased education and psychological support as a result.
We asked patients to retrospectively grade their top areas of concern at time of diagnosis and then further grade these concerns again in the present day.
Methods: An online, questionnaire designed by the authors via Microsoft Forms. This questionnaire surveyed MM/AL patients who were diagnosed at the age of 55 or under.
Results: We surveyed 57 young patients (under the age of 55) and obtained 29 completed surveys, in a period of 7days. We expect more surveys to be completed.
Our patients average age at diagnosis was 45, ranging from 30 to 55 years of age.
We obtained responses from 19 male and 10 female patients.
Only 4 (14%) had heard of the disease before diagnosis.
When questioned on their biggest fear the overwhelming response from these patients was early death.
Their biggest areas of concern at diagnosis were “anxiety about their future” and “the impact on their children’s lives”. And although these concerns are still present today, they are reduced in comparison to the time of diagnosis.
Interestingly 13 (45%) of our patients have not received any counselling support, of these some site “exercise, meditation, family and friends, myeloma nurse and support groups”, as their strategy to cope with their illness.
Some patients have developed comorbidities throughout their treatment journey, mainly 5 (17%) with cardiac complications and 4 (14%) with thyroid related issues.
Conclusions: This survey is a unique opportunity to explore the areas of most concern of this young patient population. Many of these patients will live for many years, meaning more focus is needed on survivorship and quality of life.
From our findings we can conclude the disease has an enormous psychological impact on patients’ lives. Their greatest fears are dying young and not seeing their kids grow up.
Conversely, despite this huge impact on their mental health, only half of them have received counselling. This highlights space for improvement and perhaps counselling could be standardised as part of their plan of care from diagnosis.
With greater treatment options and longer life expectancy, this patient group, requires more tailored specialised care to adequately meet their unique needs.
