Quality of Life the Danish Multiple Myeloma Patients
Quality of Life the Danish Multiple Myeloma Patients
The aim of the project is to improve quality of life for multiple myeloma patients in the
 future.
Multiple myeloma is an incurable malignancy of the bone marrow and the second most common
 type of haematological cancer. In Denmark, about 320 patients are diagnosed annually with
 multiple myeloma, and the cancer often affects older people, but 30 % of the patients living
 with MM are of working age. The prognosis has improved markedly over the last two decades and
 is expected to improve further.

 Systematic monitoring of symptoms, side effects and complications over time outside clinical
 trials has not been performed yet. Knowledge of the elderly and frail patients´ perspective
 on the multiple myeloma disease is lacking, and the time after anti-myeloma treatment is left
 unstudied. A common side effect (up to 55 %) to specific types of anti-myeloma drugs is
 peripheral neuropathy (nerve injury), which can be temporary or permanent in the form of
 long-term sequelae of pain and numbness. Information on this side effect from the patients´
 perspective is missing.

 The design of the project is a prospective, population-based, national, longitudinal survey
 with retrospective data collection from more Danish registers. We will include 800 previously
 untreated and relapsed multiple myeloma patients at treatment-demanding disease recruited
 from all Danish haematological departments. At inclusion, demographic data and
 patient-related prognostic markers will be obtained. The patients will complete four
 validated QoL instruments (EORTC QLQ-C30, MY20, CIPN20 and SF12v2) at 13 measuring points
 over a period of 24 months. The questions are concerning cancer and MM symptoms, peripheral
 neuropathy, other side effects, quality of life and functional capacity of a social,
 emotional and physical character.

 This project will provide real-time data collection of the symptoms, side effects,
 complications and quality of life from the general multiple myeloma patients´ perspective
 during and after anti-myeloma treatment. It will illuminate the reason for the patients´ high
 loss of working ability. The findings will be integrated in the future Danish National
 treatment guidelines, and recommendation for rehabilitation in aspects of shared decision
 making.
Inclusion Criteria:

 -  Previously untreated or relapsed multiple myeloma patients AND

 -  Treatment demanding multiple myeloma disease

 Exclusion Criteria:

 -  Inability to understand the Danish language or

 -  Psychic or mental illness that prevents the patient from answering the questions in
 the questionnaires.