Updated on: Jan 9 2014

Patient Forums & Education

Patient Forums & Education: interventions for diagnosis, prognosis, treatment and quality of life


The median survival for myeloma patients is a short 3-5 years, making this one of the most devastating cancers for patients and their families. Historically a disease of the elderly, myeloma is now affecting younger patients in their 20s, 30s, and 40s. Also unlike other forms of cancer, there are no proven methods of prevention or screening. It is difficult to diagnose because symptoms such as fatigue, weight loss, and compromised immune systems are often confused with other illnesses.

As a result, patients are often misdiagnosed and/or diagnosed late in the course of their disease. Yet early and accurate diagnosis is critical to the successful treatment of these patients. Diagnostic tools on the horizon, such as the Lymphochip, promise to improve the diagnosis of these diseases at the molecular level, enabling doctors to specifically target therapies and improve outcomes for patients.

Advancements in the field of molecular profiling have increased the importance of obtaining pre-treatment tissue samples to better classify patients by disease type and to help monitor patients over time. These same tissue samples can be stored to facilitate long-term research and to help in the identification of targeted therapies. Patients must be educated about the importance of providing samples. All oncologists and surgeons, including those at cancer centers and those at community practices, where most patients are evaluated, must be educated and motivated to obtain, analyze, and distribute tissue samples to ensure accurate diagnosis and to enhance future research.

Present Status
Once a diagnosis is confirmed, many patients face difficult treatment decisions. A segment of patients with myeloma are asked to "watch and wait," putting off treatment until symptoms require intervention. These patients must learn to live with chronic cancer and manage their lives accordingly. Other patients are diagnosed with late-stage, aggressive disease that requires immediate intervention. Both scenarios evoke anxiety and frustration as patients strive to understand the complexities of their disease.

The emergence of new compounds and trials in haematological malignancies brings hope to patients; however, understanding the advantages and accessibility of new and emerging treatments can be overwhelming. Although many patients rely on their community oncologist for guidance, the community oncologist may not be up to date on the latest approaches for MM. Easy access to up-to-date information about treatment options is critical to ensure that appropriate medical decisions are made.

Over the longer term, patients' quality of life must be optimised. As patients with MM face anaemia, persistent infections, severe bone pain, their treatment plans require continual evaluation. Furthermore, many patients also face secondary cancers and long-term health consequences of treatment, including heart disease, infertility, and compromised immune systems. Due to the high mortality clinicians must also evaluate patients for anxiety and depression.


Preview of Programme Proposed
What little research has been conducted has been predominantly initiated by investigators and conducted on an ad hoc basis. The EUMMNE wants to initiate a comprehensive and coordinated series of European studies to identify and develop behavioural, education, and communication interventions at the four critical stages in the progression of MM. These studies will focus on understanding and establishing behavioural, communication, and education interventions for the following purposes;

  • to expedite the diagnosis through better identification of risks and symptoms
  • to ensure a timely and thorough diagnosis through all available diagnostic tools
  • to facilitate optimal treatment and management decisions for patients with chronic and aggressive disease
  • to optimise the quality of life and quality of care for patients who are cured, who are living with chronic disease, or who are terminally ill.


  • identify interventions and develop educational materials and communication tools for the public in order that they can identify the early symptoms of MM
  • provide a system for collecting and analysing data relating to diagnosis, treatment, side effects, during short- and long-term follow-up
  • develop a public health program to increase awareness of early signs and symptoms
  • identify behavioural, education, and communication interventions to ensure that patients and clinicians understand the importance of retrieving, distributing, analysing, and storing pretreatment tissue samples for evaluation, monitoring, and clinical research
  • identification and implementation of strategies that facilitate informed doctor-patient decision-making at the time of treatment for aggressive and indolent patients
  • identification of ways to disseminate accurate state-of-the-art information to both patients and medical communities (including internists), taking into consideration the diverse ages, genders, races, educational levels, and socio-economic status of patients
  • facilitate easy, centralized access to information on MM, standard treatment options, emerging treatments, and available trials. Out-reach programs to community oncologists and patients encouraging participation in clinical trials are needed at the earliest possible stage
  • new interventions must be made public with a focus on the changing nature of treatments and with help to manage side effects of novel therapies
  • identify and implement methods of improving quality of life and quality of care as patients move through treatment and maintenance
  • establish guidelines to screen patients for pain, depression, fatigue, and common symptoms of these diseases and their treatments.
    Treatments to alleviate these symptoms must be identified, and patients and health care professionals must be educated about these treatments. Patients and health care professionals must also be educated about the availability and benefits of psychosocial support.
    Guidelines and support resources should be prepared for caregivers who monitor symptoms, deliver care, and provide emotional support.
  • finally, quality-of-life issues facing patients and families living with haematological cancers must be identified and prioritized, especially as new treatments emerge and, hopefully, survival is extended.

Organise an exchange program of research fellows, spending 3-12 months at another laboratory at choice of one of the participants. This program should have a primary aim of bringing young scientist who are not yet committed to one background, to acquire a additional skills or possibilities for their myeloma research.

Secr. Hans E. Johnsen | Depart. of Haematology | Aalborg University Hospital | Sdr. Skovvej 15 | DK-9000 Aalborg | Denmark | T:+45 9766 3871 | F:+45 9766 6369