NCT04118062

Brief Summary

Resistance to treatment is one of the major themes in cancer research. Despite this, the definition and clinical implications of resistance to treatment remain under-explored, and patient-physician communication in this context still constitutes a challenge. When resistance to cancer treatments occurs, physicians not only have to explain to the patient the phenomenon of resistance, often based on complex results (biological results, genomic tests, imaging, etc.), but also need to offer alternative therapies, whilst fostering shared medical decision-making. These different tasks are particularly challenging for clinicians, especially since there are large individual differences at patient level. Indeed, each patient has his or her own unique information needs, capacity for understanding, and level of desire to participate in treatment decisions.

Trial Health

87
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
128

participants targeted

Target at P50-P75 for not_applicable

Timeline
Completed

Started Feb 2021

Longer than P75 for not_applicable

Geographic Reach
1 country

1 active site

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

First Submitted

Initial submission to the registry

September 11, 2019

Completed
26 days until next milestone

First Posted

Study publicly available on registry

October 7, 2019

Completed
1.3 years until next milestone

Study Start

First participant enrolled

February 2, 2021

Completed
2.3 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

May 26, 2023

Completed
1 year until next milestone

Study Completion

Last participant's last visit for all outcomes

May 26, 2024

Completed
Last Updated

September 19, 2025

Status Verified

September 1, 2025

Enrollment Period

2.3 years

First QC Date

September 11, 2019

Last Update Submit

September 18, 2025

Conditions

Outcome Measures

Primary Outcomes (4)

  • List of patients' needs, particularly regarding communication with physicians

    List of patients' needs in support, and information delivered by physicians in consultation

    18 months

  • Items of communication booklet

    Number and content of items, number of categories / themes,

    18 months

  • Acceptability of the booklet evaluated

    Items and issues revised and reformulated by the experts. Application of the booklet in the determined clinic: Modes of administration of the booklet and patients concerned identified. Implementation of the tool and relevant patients identified

    18 months

  • Content of communication booklet validated

    Consensus criteria: Consensus can be considered to have been reached if the majority of participants (70% or more) rank an item similarly

    18 months

Study Arms (6)

Metastatic Uveal Melanoma

OTHER

Questionnaires and semi-structured individual interviews with patients with Metastatic Uveal Melanoma

Behavioral: QuestionnairesBehavioral: Semi-structured individual interviews

Triple Negative Breast Cancer

OTHER

Questionnaires and semi-structured individual interviews with patients with Triple Negative Breast Cancer

Behavioral: QuestionnairesBehavioral: Semi-structured individual interviews

Luminal B Breast Cancer

OTHER

Questionnaires and semi-structured individual interviews with patients with Luminal B Breast Cancer

Behavioral: QuestionnairesBehavioral: Semi-structured individual interviews

Pediatric Cancer

OTHER

Questionnaires and semi-structured individual interviews with parents of children with cancer.

Behavioral: QuestionnairesBehavioral: Semi-structured individual interviews

Expert Patients

OTHER

Focus groups (or group interviews) and DELPHI consensus method with expert patients

Other: Focus GroupOther: DELPHI Consensus Method

Researchers and Clinicians

OTHER

Focus groups (or group interviews) and DELPHI consensus method with Researchers and Clinicians

Other: Focus GroupOther: DELPHI Consensus Method

Interventions

QuestionnairesBEHAVIORAL

Questionnaires

Luminal B Breast CancerMetastatic Uveal MelanomaPediatric CancerTriple Negative Breast Cancer

Semi-structured individual interviews

Luminal B Breast CancerMetastatic Uveal MelanomaPediatric CancerTriple Negative Breast Cancer

Focus Group

Expert PatientsResearchers and Clinicians

DELPHI Consensus Method

Expert PatientsResearchers and Clinicians

Eligibility Criteria

Age18 Years+
Sexall
Healthy VolunteersNo
Age GroupsAdult (18-64), Older Adult (65+)

You may qualify if:

  • Patients:
  • To be 18 years of age or older ;
  • To have metastatic uveal melanoma (MUM) or triple negative or luminal B breast cancer ;
  • To have received the information that the disease is resistant to treatment ;
  • To have read the information and signed the informed consent.
  • Parents of a sick child:
  • To be a parent (parental authority holder) of a child with cancer ;
  • To have received the information that the child disease is resistant to treatment ;
  • To have read the information and signed the informed consent.
  • Expert patients:
  • To be 18 years of age or older ;
  • To have had cancer (regardless the cancer site) ;
  • To participated to an expert patient training (fine knowledge of the illness, experience with the disease) ;
  • To have read the information and signed the informed consent.
  • Professionals:
  • +3 more criteria

You may not qualify if:

  • Patients \& parents of a sick child:
  • To have difficulties in understanding the French language.
  • Have or have had cancer (criteria only for parents);
  • Pregnant woman, likely to be pregnant or breastfeeding (criteria only for patients).
  • Persons deprived of their liberty or under guardianship;
  • Impossibility of study requirements respect for geographical, social or psychological reasons.
  • Expert patients:
  • To have difficulties in understanding the French language ;
  • Currently being undergoing anti-tumor treatment.
  • Professionals:
  • To have difficulties in understanding the French language ;
  • Not to be confronted in professional practice with resistance to anti-tumor treatments.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

Institut Curie

Paris, 75005, France

Location

Related Publications (2)

  • Rault A, Dolbeault S, Terrasson J, Bouleuc C, Cottu P, Piperno-Neumann S, Rodrigues M, Vaflard P, Bredart A. Facilitating patient-oncologist communication in advanced treatment-resistant cancer: development and feasibility testing of a question prompt list. Pilot Feasibility Stud. 2024 Aug 28;10(1):116. doi: 10.1186/s40814-024-01543-y.

  • Bredart A, Rault A, Terrasson J, Seigneur E, De Koning L, Hess E, Savignoni A, Cottu P, Pierga JY, Piperno-Neumann S, Rodrigues M, Bouleuc C, Dolbeault S. Helping Patients Communicate With Oncologists When Cancer Treatment Resistance Occurs to Develop, Test, and Implement a Patient Communication Aid: Sequential Collaborative Mixed Methods Study. JMIR Res Protoc. 2022 Jan 12;11(1):e26414. doi: 10.2196/26414.

MeSH Terms

Conditions

Uveal MelanomaTriple Negative Breast NeoplasmsNeoplasms

Interventions

Surveys and QuestionnairesFocus Groups

Condition Hierarchy (Ancestors)

MelanomaNeuroendocrine TumorsNeuroectodermal TumorsNeoplasms, Germ Cell and EmbryonalNeoplasms by Histologic TypeNeoplasms, Nerve TissueNevi and MelanomasUveal NeoplasmsEye NeoplasmsNeoplasms by SiteEye DiseasesUveal DiseasesBreast NeoplasmsBreast DiseasesSkin DiseasesSkin and Connective Tissue Diseases

Intervention Hierarchy (Ancestors)

Data CollectionEpidemiologic MethodsInvestigative TechniquesHealth Care Evaluation MechanismsQuality of Health CareHealth Care Quality, Access, and EvaluationPublic HealthEnvironment and Public Health

Study Officials

  • Sylvie DOLBEAULT, PHD

    Institut Curie

    STUDY DIRECTOR
  • Anne BREDART, PHD

    Institut Curie

    STUDY DIRECTOR

Study Design

Study Type
interventional
Phase
not applicable
Allocation
NON RANDOMIZED
Masking
NONE
Purpose
OTHER
Intervention Model
SEQUENTIAL
Model Details: To meet our objectives, the research team has developed a cross-sectional and mixed exploratory research according to three successive steps : Step 1: Questionnaires and semi-structured individual interviews will : (a) to identify patients' needs and (b) to build the initial contents of the tool, items and issues. Four patients' populations will be recruited in this step : metastatic uveal melanoma, triple negative breast cancer, luminal B breast cancer, and pediatric cancer. This step will be conducted in parallel with these populations. Step 2 : Focus groups : to evaluate the acceptability and applicability of the tool in this clinical context with expert patients, researchers and clinicians. Step 3 : The DELPHI consensus method : to validate the contents of the booklet for patients with expert patients, researchers and clinicians.
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

September 11, 2019

First Posted

October 7, 2019

Study Start

February 2, 2021

Primary Completion

May 26, 2023

Study Completion

May 26, 2024

Last Updated

September 19, 2025

Record last verified: 2025-09

Data Sharing

IPD Sharing
Will share

Investigators will share de-identified data sets with interested reserachers, educators or clincians. Materials generated under the project will be disseminated in accordance with Institut Curie policies.

Time Frame
Data requests can be submitted starting 9 months after article publication and will made accessible for up to 12 months.
Access Criteria
Access to trial individual participant data can be requested by qualified researchers engaging in independent scientific reserach, and will be provided following review and approval of a research proposal and Statistical Analysis Plan (SAP) and execution of a data sharing agreement (DSA).

Locations