Multicenter Prospective Cohort of Informal Caregivers in Burgundy and Franche-Comté

Summary

Medical progress and modification of lifestyles have prolonged life expectancy, despite the development of chronic diseases. The support and care are often provided by a network of informal caregivers composed of family, friends, and neighbors. They became essential to help maintening the elderly persons to live at home. It has been demonstrated that the importance and the diversity of informal tasks may jeopardize their own physical, mental and social well-being.

The aim of the Informal Carers of Elderly Cohort is to define, through a longitudinal study of their life course, the profiles of caregivers of patients with a diagnosis of one of the following diseases: cancer (breast, prostate, colon-rectum), neuro-degenerative diseases (Parkinson's disease, Alzheimer's and similar diseases), neuro-vascular diseases (Cerebrovascular Accident (CVA)), Age-related Macular Degeneration(AMD) and heart disease (heart failure), aged ≥ 60 years old and living in Burgundy or Franche-Comte. By following the different phases of the caregiving relationship from the announcement of the diagnosis, it will be possible to assess the quality of life of caregivers and evaluate the implementation of a pragmatic social action to help informal caregivers through a randomized intervention trial nested in the cohort.

Thanks to an analytical and longitudinal definition of the profiles of informal caregivers, this study could gather precise information on their life courses and their health trajectory by identifying the consequences associated with the concept of their role of aid in care. In addition, the randomized intervention trial will explore the efficacy, in terms of quality of life, and efficiency of a social action to support the caregivers. These data will allow to identify strategies that could be used to improve the existing sources of aid and to propose new approaches to help caregivers. This study will provide the opportunity to identify the most relevant means of support and to give an impulse for new healthcare policies.

Conditions

• Breast Cancer
• Colorectal Cancer
• Prostate Cancer
• Alzheimer Disease
• Age-related Macular Degeneration
• Parkinson Disease
• Cardiac Disease
• Ischemic Stroke
• Hemorrhagic Stroke

Interventions

BEHAVIORAL

Support provided by social worker

Caregivers randomized in intervention arm will receive an information booklet (which informs about existing structures and actions) and will receive support provided by a social worker schedule every 6 months during two years. The support duration will be one hour and will be defined as two parts: administration of the LASA questionnaire, and a standardized semi directive interview to assess needs.

OTHER

Information booklet receipt

Caregivers will only receive an information booklet (which informs about existing structures and actions)

Sponsors & Collaborators

• Methodological and quality of life unit in oncology (CHRU de Besançon)

  collaborator UNKNOWN

• University of Franche-Comté

  collaborator OTHER

• University of Burgundy

  collaborator OTHER

• Pôle de Gérontologie Interrégional Bourgogne et Franche-Comté

  collaborator UNKNOWN

• CARSAT Bourgogne et Franche-Comté

  collaborator UNKNOWN

• CCAS of Dijon

  collaborator UNKNOWN

• CCAS of Besançon

  collaborator UNKNOWN

• CCAS of Montbéliard

  collaborator UNKNOWN

• Burgundy Regional Council

  collaborator UNKNOWN

• Franche-Comté Regional Council

  collaborator UNKNOWN

• The Municipality of Besançon

  collaborator UNKNOWN

• The Municipality of Dijon

  collaborator UNKNOWN

• General Council of the Doubs

  collaborator UNKNOWN

• General Council of the Territoire de Belfort

  collaborator UNKNOWN

• Collectif Inter Associatif Sur la Sante Bourgogne

  collaborator UNKNOWN

• Union Régionale Interfédérale des Œuvres et Organismes Privés Sanitaires Bourgogne

  collaborator UNKNOWN

• Association Gérontopôle Pierre Pfitzenmeyer

  collaborator UNKNOWN

• Pôle de compétitivité Vitagora Goût-Nutrition-Santé

  collaborator UNKNOWN

• National Old Age Insurance Fund for Employees (CNAVTS)

  collaborator OTHER

• Sheerbrooke Gérontopôle

  collaborator UNKNOWN

• France Alzheimer

  collaborator OTHER

• Institut Régional de Vieillissement (IRV)

  collaborator UNKNOWN

• Novartis Pharmaceuticals

  collaborator INDUSTRY

• Roche Foundation

  collaborator UNKNOWN

• Ligue contre le cancer, France

  collaborator OTHER

• National Cancer Institute, France

  collaborator OTHER_GOV

• Quality of life and cancer clinical research platform

  collaborator UNKNOWN

• National Research Agency, France

  collaborator OTHER

• Centre Hospitalier Universitaire de Besancon

  lead OTHER

Principal Investigators

• Virginie NERICH, Dr · Pôle Pharmaceutique CHU de Besançon

Study Design

Allocation

RANDOMIZED

Purpose

OTHER

Masking

NONE

Model

PARALLEL

Eligibility

Min Age

60 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2015-10-31

Primary Completion

2019-05-31

Completion

2019-05-31

Countries

• France

Study Locations