Evaluation of a Question Prompt List for Patients With Myelodysplastic Syndromes (QPL-MDS)
NCT02781441 · Status: UNKNOWN · Phase: NA · Type: INTERVENTIONAL · Enrollment: 140
Last updated 2017-09-05
Summary
MDS are a diverse group of hematopoietic malignancies, which mainly occur in patients over 75 years of age. Incidence rate in 2012 in France was more than 6 cases per 100 000 person-years. MDS are characterized by ineffective haematopoiesis causing cytopenia, and by leukemic transformation. The disease is heterogeneous, its pathophysiology complex and clinical evolution variable.The few data available on MDS patients show how difficult it is to understand MDS, its prognosis and the reasons for prescribing or not some treatments. In the context of a highly complex potentially lethal disease such as MDS, it is of utmost importance to optimize the information conveyed to patients. Particularly, 70.5% of MDS patients surveyed in our developmental study would have preferred more information about prognosis at diagnosis disclosure.
A simple intervention based on the use of a question prompt list (QPL), would greatly improve the information process by helping patients to express their main concerns at their medical consultations. Cultural differences may exist in the appraisal of QPLs and QPLs have not yet been widely used in France.
However, in line with the previous results available in the literature and in a context a priori favourable to the use of such an instrument, the investigators hypothesise that use of a QPL will increase MDS patients' expressions of concerns and questions at their medical consultations. Particularly the investigators assume that the discussion about prognosis will be facilitated, without increasing anxiety because patients remain free to ask or not for such information. The use of QPLs would also be a way to limit social inequalities related to insufficient information and to encourage patient-doctor communication and meeting of patient preferences which could lead to better health outcomes.
Conditions
Interventions
- BEHAVIORAL
-
Question prompt list (QPL)
- BEHAVIORAL
-
Education brochure of Groupe Français des Myélodysplasies
Sponsors & Collaborators
-
Institut Paoli-Calmettes
lead OTHER
Principal Investigators
-
Jérôme Rey, MD · Institut Paoli-Calmettes
Study Design
- Allocation
- RANDOMIZED
- Purpose
- HEALTH_SERVICES_RESEARCH
- Masking
- NONE
- Model
- PARALLEL
Eligibility
- Min Age
- 18 Years
- Sex
- ALL
- Healthy Volunteers
- No
Timeline & Regulatory
- Start
- 2016-04-30
- Primary Completion
- 2018-04-30
- Completion
- 2018-09-30
Countries
- France
Study Locations
More Related Trials
-
COaching and Prehabilitation: Faisability Study in Patients With Acute Myeloid Leukemia and Myelodysplastic Syndrome
NCT03595787 ·Status: ACTIVE_NOT_RECRUITING ·Phase: NA
-
Early Palliative Care for Patients With Haematological Malignancies
NCT03800095 ·Status: UNKNOWN ·Phase: PHASE3
-
Characterization of the Mechanisms of Resistance to Azacitidine
NCT01210274 ·Status: RECRUITING
-
Quality of Life-Guided Transfusion in Refractory MDS or AML
NCT07328191 ·Status: RECRUITING ·Phase: NA
-
Interplay Between Immune and Metabolic Programs in Myelodysplastic Syndromes
NCT04803721 ·Status: COMPLETED
-
A Telehealth Advance Care Planning Intervention for Older Patients With Acute Myeloid Leukemia and Myelodysplastic Syndrome
NCT04745676 ·Status: COMPLETED ·Phase: NA
-
Cohort Study Assessing the Treatment Strategy for High-Risk Myelodysplastic Syndromes in Patients Under 70
NCT05367583 ·Status: UNKNOWN
-
MyPal ePRO-based Early Palliative Care System in Adult Patients With Hematologic Malignancies
NCT04370457 ·Status: UNKNOWN ·Phase: NA
-
Quality of Life of Patients With Acute Myelogenous Leukemia (AML) or Myelodysplastic Syndrome (MDS)
NCT00459524 ·Status: COMPLETED
-
Plasmatic L-AScorbic Acid in MYelodyplastic Syndroms and Controls
NCT02809222 ·Status: COMPLETED ·Phase: NA
-
Efficacy and Tolerability of the Combination of Valproic Acid and Lenalidomide in the Treatment of Patients With Myelodysplastic Syndrome
NCT00977132 ·Status: TERMINATED ·Phase: PHASE2
-
Personalized Medicine Program on Myelodysplastic Syndromes: Characterization of the Patient's Genome for Clinical Decision Making and Systematic Collection of Real World Data to Improve Quality of Health Care
NCT04212390 ·Status: COMPLETED
-
Prospective Study of Molecular Predictors of Survival in Myelodysplastic Syndromes
NCT02619565 ·Status: COMPLETED ·Phase: NA
-
Development of an in Vitro Hematopoietic Culture System and Application to Myelodysplastic Syndromes.
NCT03107273 ·Status: COMPLETED
-
Study of Molecular and Genetic Abnormalities in Patients With Myeloid Neoplasms
NCT02084563 ·Status: COMPLETED ·Phase: PHASE2
-
A Collaborative Palliative and Oncology Care Model for Patients With Acute Myeloid Leukemia
NCT02975869 ·Status: COMPLETED ·Phase: NA
-
Higher Percentage of CD34+ CD38- Cells Detected by Multiparameter Flow Cytometry From Leukapheresis Products Predicts Unsustained Complete Remission in Acute Myeloid Leukemia
NCT02842112 ·Status: COMPLETED
-
Impact of Supportive Care on the Experience of Hospitalization of Patients Staying in the Protected Area of the Department of Blood Diseases
NCT03959007 ·Status: COMPLETED ·Phase: NA
-
Impact of Epigenetic Age on Clinic-biological Presentation and Prognosis in Myeloproliferative Neoplasms Epigenetic Age in Myeloproliferative Neoplasms (EpiC)
NCT06022328 ·Status: RECRUITING
-
Expectations of Patients in Palliative Situation
NCT06786897 ·Status: NOT_YET_RECRUITING
-
An European Platform for Translational Research in Myelodysplastic Syndromes
NCT04174547 ·Status: UNKNOWN
-
Early Discharge and Outpatients Care in Patients With Myelodysplastic Syndrome or Acute Myeloid Leukemia Previously Treated With Intensive Chemotherapy
NCT01235572 ·Status: COMPLETED ·Phase: PHASE2
-
IDH2 (AG 221) Inhibitor in Patients With IDH2 Mutated Myelodysplastic Syndrome
NCT03744390 ·Status: ACTIVE_NOT_RECRUITING ·Phase: PHASE2
-
Predictive Clinical and Biological Parameters in Acute Leukemia, Myelodysplastic Syndromes and Myeloproliferative Disorders-HEMATO-BIO-IPC-2013-015
NCT02320656 ·Status: COMPLETED ·Phase: NA
-
Palliative Care Oncology in Patients With Relapsed, Refractory, and High-Risk Leukemias or MDS
NCT04482894 ·Status: ACTIVE_NOT_RECRUITING ·Phase: NA