Follow-up of Patients With Multiple Myeloma in the West-Occitanie Region "Living With a Myeloma in West-Occitanie"

Condition(s) studied

Investigational drug(s) / intervention(s)

quality of life questionnaires (EORTC QLQ-C30 ; EORTC QLQMY20 ; EQ-5D-5L ; Cohen's stress scale): Excepted the delivery of quality of life questionnaires (a maximum of 5 times during the course of treatment) specific to this study, only the data available during the course of patient care will be collected. The quality of life questionnaires and the perceived stress questionnaire will be given to patients : * At diagnosis (before starting 1st line of treatment), * after the induction phase (before autologous transplantation for patients who will be transplanted), * after the consolidation phase, * after the maintenance phase : 1 year and 2 years after the start of the maintenance.

Study summary

Actually very few real life data are available for patients with multiple myeloma (MM), whereas they're playing a more and more important role in health care decisions. Treatments choice for medical care of patient with MM depends of their age, their general status, their eligibility to high dose treatment (autograft), and also based on cytogenetic risk (standard/high risk). Therapeutic strategies are multiple and based on drugs associations including proteasome inhibitors, immuno-modulators and monoclonal antibodies.

Therapeutic medical care objective is to improve quality and response duration through more effective induction schemas, systematic consolidation for patients who have undergone high dose therapy and/or maintenance treatment, ensuring patients safety and well-being in the health care pathway.

Quality of life evaluation has to take in consideration disease outcome and secondary effects impact from treatments prescribed for MM.

With clinical trials, new therapeutic strategies are proposed with innovative drugs but participants are selected and do not represent all patients with MM. Therefore, there is a large gap between clinical trials and real life data.

That's why the CHU Toulouse intends to set up a prospective cohort to evaluate the health care pathway of patients with MM in West-Occitanie region and studies impact of treatments prescribed on the disease and on the patients' quality of life.

With this research, standard of care practices for patients with MM will be followed, prognostic scores and clinical trials results will be validated in real life, impact of outpatient support procedure will be assessed (AMA procedure) and sociodemographic/quality of life data will be available for research teams.

Eligibility

Primary outcome measure(s)

• Treatment lines and procedures followed by the patients — 5 to 10 years
  Different treatment lines and procedures followed by the patients with drugs involved, number of cycles performed in each treatment phase (induction, consolidation, maintenance) and for each therapeutic line
• Transplants — 5 to 10 years
  Transplants carrying out
• Treatments discontinuation — 5 to 10 years
  Reasons for treatments administered discontinuation
• Therapeutic medical care description — 5 to 10 years
  Supportive care and the type of care set up
• Unconventional alternative medicine — 5 to 10 years
  Use and description of unconventional alternative medicine
• Outpatient support structure — 5 to 10 years
  Support from an outpatient support structure (AMA)

Trial sites (1)

More University Hospital, Toulouse trials in France

Other trials for the same condition